Libre Acceso

SUNY series in Latin American and Iberian Thought and Culture

—————
Jorge J. E. Gracia and Rosemary Geisdorfer Feal, editors
 Libre Acceso
Latin American Literature and Film
through Disability Studies

Edited by
Susan Antebi and Beth E. Jörgensen
Published by State University of New York Press, Albany

© 2016 State University of New York

All rights reserved

Printed in the United States of America

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Production, Diane Ganeles

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Library of Congress Cataloging-in-Publication Data

Libre acceso : Latin American literature and film through disability studies /
edited by Susan Antebi and Beth E. Jörgensen.
pages cm. — (SUNY series in Latin American and Iberian thought and culture)
Includes bibliographical references and index.
ISBN 978-1-4384-5967-7 (hardcover : alk. paper)
ISBN 978-1-4384-5969-1 (e-book)
1. Spanish American literature—History and criticism. 2. People with disabilities
in literature. 3. Motion pictures—Latin America. 4. People with disabilities in
motion pictures. 5. Human body in literature. I. Antebi, Susan, editor.
II. Jörgensen, Beth Ellen, editor.

PQ7081.L456 2016
860.9'98—dc23 2015011059

10 9 8 7 6 5 4 3 2 1
 Contents

List of Illustrations ix

Acknowledgments xi

Introduction: A Latin American Context for Disability Studies 1

Susan Antebi and Beth E. Jörgensen

Part I
Disability Life Writing and Constructions of the Self

Chapter 1
Blind Spot: (Notes on Reading Blindness) 29
Lina Meruane

Chapter 2
“La cara que me mira”: Demythologizing Blindness in Borges’s
Disability Life Writing 47
Kevin Goldstein

Chapter 3
Negotiating the Geographies of Exclusion and Access:
Life Writing by Gabriela Brimmer and Ekiwah Adler-Beléndez 63
Beth E. Jörgensen

Part II
Global Bodies and the Coloniality of Disability

Chapter 4
Otras competencias: Ethnobotany, the Badianus codex, and
Metaphors of Mexican Memory Loss and Disability in
Las buenas hierbas (2010) 83
Ryan Prout
vi Contents

Chapter 5
Cripping the Camera: Disability and Filmic Interval in
Carlos Reygadas’s Japón 103
Susan Antebi

Chapter 6
Bodily Integrity, Abjection, and the Politics of Gender and Place
in Roberto Bolaño’s 2666 121
Victoria Dickman-Burnett

Chapter 7
Violence, Injury, and Disability in Recent Latin American Film 135
Victoria L. Garrett

Part III
Embodied Frameworks: Disability, Race, Marginality

Chapter 8
Sô Candelário’s Inheritance: Leprosy as a Marker of Racial Identity
in João Guimarães Rosa’s Grande Sertão: Veredas (1956) 155
Valéria M. Souza

Chapter 9
“A solidão da escuridão”: On Visual Impairment and the
Visibility of Race 173
Melissa E. Schindler

Chapter 10
Mythicizing Disability: The Life and Opinions of (what is
left of) Estamira 191
Nicola Gavioli

Chapter 11
“En ninguna parte”: Narrative Performances of Mental Illness
in El portero by Reinaldo Arenas and Corazón de skitaleitz
by Antonio José Ponte 209
Laura Kanost
 Contents vii

Part IV
Imagining Other Worlds

Chapter 12
The Disability Twist in Stranger Novels by Mario Bellatin
and Carmen Boullosa 229
Emily Hind

Chapter 13
The Blur of Imagination: Asperger’s Syndrome and
One Hundred Years of Solitude 245
Juan Manuel Espinosa

Epilogue #YoSoy 259

Robert McRuer

Contributors 265

Index 269
 Illustrations

Figure 4.1 Still from Las buenas hierbas illustrating a page from
the Codex de la Cruz-Badiano and Lala’s research notes.
In the sequence which follows the plants are brought
to life in a short animation. Las buenas hierbas
© Axolote Cine. All rights reserved. 87
Figure 4.2 A still from a pivotal scene in Las buenas hierbas.
Dalia’s struggle with her mother’s dementia centres
on an open facsimile copy of the Codex de la
Cruz-Badiano and the disorderly Alzheimer’s wardrobe.
Las buenas hierbas © Axolote Cine. All rights reserved. 92
Figure 5.1 Following the accident, the body of Ascención lies
among stones on the railway tracks. The lace-like
pattern of blood on her face suggests a textural
similarity to the lace shroud of the woman who had
arrived, in a previous scene, to announce her death.
Japón © 2003 Distrimax S.A. All rights reserved. 106
Figure 5.2 Ascensión gazes upon her hands in bright sunlight,
fingers pointing upwards. The scene emphasizes the
aged and arthritic quality of the hands, and their
status as tools that create affective, intercorporeal
ties to other characters. Japón © 2003 Distrimax S.A.
All rights reserved. 107
Figure 5.3 Stones from the foundation of the barn that once
supported Ascensión’s house lie strewn along the
railway tracks. The house in pieces in a landscape of
human remains makes literal Juan Rulfo’s metaphor
of the body as a heap of stones. Japón © 2003
Distrimax S.A. All rights reserved. 111

ix
 Acknowledgments

This book is the result of a collaborative project sustained over several years,
through dialogues between the editors, contributors, and other scholars and
activists from Latin America, Canada, and the United States. The idea for
Libre Acceso, as a volume that would feature recent scholarship on Latin
American literature and film informed by disability studies perspectives,
stemmed from our awareness of the current lack of work of this kind. Given
the recent increase in disability studies scholarship on Anglo-American litera-
ture and film, and the growing disability awareness, activism, and scholar-
ship in many Latin American countries, the need to facilitate and highlight
the roles of disability and disability studies in Latin American literary and
filmic production seemed particularly urgent.
We are grateful to our many interlocutors who have engaged with
us throughout this project, including Benjamin Mayer Foulkes and Beat-
riz Miranda, of the 17 Instituto de Estudios Críticos, in Mexico City, as
well as Patricia Brogna and many other participants at the Institute’s 2013
disability studies colloquium. Federico Fleischmann, Carlos Ríos Espinosa,
Karla Calcáneo, and Ernesto Rosas Barrientos were generous in granting
interviews to Beth Jörgensen in June 2011, and Elena Poniatowska was
instrumental in making those interviews possible. We also wish to thank
our colleagues and students at the University of Toronto and the University
of Rochester, including Tanya Titchkosky, Rod Michalko, Anne Mcguire,
Eliza Chandler, and the members of the Disability Studies Cluster at the
University of Rochester.
Support for some parts of the project was provided by the University
of Toronto Jackman Humanities Institute, the Connaught Fund, and the
Office of the Deans of the College at the University of Rochester. We also
wish to thank our editor Beth Bouloukos and assisting staff at the State
University of New York Press for helping to bring our work to fruition, and
to the careful and generous readings of our two external reviewers.

xi
 Introduction
A Latin American Context for Disability Studies

Susan Antebi
Beth E. Jörgensen

“Let’s achieve a miracle” (Logremos un milagro) was the slogan of the first
Telethon in Chile, a charity fund-raiser for the rehabilitation of children
with disabilities. “La Teletón,” founded by Mario Kreutzberger1 in 1978,
was so successful that its name and structure have been replicated through
an umbrella organization operating in twelve different Latin American
countries.2 Images of children equipped with state-of-the-art rehabilitation
devices for learning how to walk thus came to appear regularly on televi-
sion screens throughout the region, accompanied by slogans of hope for
the future, love, and solidarity, along with pleas for donations by media
celebrities. As in the case of similar televised fund-raisers in the United
States and elsewhere, Teletón’s use of children with disabilities to evoke
the public’s compassion—and to open its wallets—exploits the children in
question, legitimates the activity of staring at them, and equates disability
with a tragedy to be erased or overcome.3 Latin American disability rights
activists and scholars have similarly criticized the Teletón model, advocat-
ing for human rights and social justice rather than voyeurism and charity,
particularly in the wake of the 2006 United Nations’ Convention on the
Rights of Persons with Disabilities, which has been signed by most Latin
American countries.
Yet the specificity of the Latin American Teletón’s beginnings and
its slogan of miracle making also suggest something further about the role
of disability representation in contemporary Latin American societies. The

1
2 Susan Antebi and Beth E. Jörgensen

1978 reference to the “miracle” of fund-raising and rehabilitation echoes

Milton Friedman’s description of Chile’s “economic miracle,” in the era of
Pinochet. In the years following the 1973 military coup, a period during
which the Pinochet regime murdered thousands of political dissidents, the
privatization of state-run industries and the massive reduction of public
spending would come to define Chile’s economy in a global context, through
increased opportunities for foreign investors and a widening gap between the
wealthiest and the poorest population sectors. For proponents of neoliberal
economics the metaphor of a miracle defined Chile as a potentially export-
able model of economic success in the region. Similarly, Chile’s Teletón
miracle became the basis for the disability charity enterprise throughout
Latin America. Most criticism of Teletón in Mexico, Chile, and other Latin
American countries has tended to focus on the issue of economic exploita-
tion, as privately run television stations are said to benefit from the tax
write-offs made possible by public charitable giving, while transnational
corporations reap the rewards of Teletón advertising spots, creating a positive
association between their products and compassion for disabled children.
In Mexico, the very substantial channeling of public funds by the federal
and state governments into the private Teletón enterprise has also been the
target of criticism.4 In a contemporary global and Latin American cultural
scene increasingly defined by visual media and the rapid circulation of literal
and symbolic capital, the miracle metaphor falls flat for many consumers,
and yet for large sectors continues to generate interest, affect, and economic
participation.
Disability and its representations in Latin America are thus increas-
ingly marked by public critique of socioeconomic inequality, uneasy bound-
aries between public and private sectors, and by profoundly contradictory
messages. Market-driven initiatives such as Teletón have increased the vis-
ibility of disabled people5—albeit in troubling ways—while growing national
and international engagement with disability as a human rights issue has
contributed to public awareness regarding disability rights in a more posi-
tive sense. Yet it is nonetheless true that stigma and exclusion continue
to define the status of many disabled people in the region, in contrast to
both Teletón’s promise of a miracle, and recent legislation that purports to
eliminate discrimination on the basis of disability.
We begin Libre Acceso: Latin American Literature and Film through
Disability Studies with the miracle metaphor of the Chilean economy and
of Teletón as a means to underscore the complex conditions impacting the
politics and representation of disability in Latin American contexts. Teletón’s
use of disability tends to reinforce the familiar stigma of physical disability
as a personal tragedy to be overcome. Yet the overarching metaphoric role
 Introduction 3

of the miracle also reveals disability and its extended web of meanings as
central to the broader notions of neoliberal economics, national transforma-
tion, and the politics of inequality. Although this particular cultural scene
is just one of many possible, varied examples with which one might choose
to illustrate disability representation in the region, it effectively points to
a tension we wish to highlight in this volume, between disability defined
through individual experience, and through a more biopolitically oriented
emphasis on populations or collectives.
In this book, we focus on selected Latin American literary and filmic
representations of disability, grounding our approaches at meeting points
between the fields of disability studies and Latin American literary and cul-
tural studies. The broader context for the volume includes the social, legal,
and cultural changes around disability that have been occurring in Latin
America over the course of the past fifteen to twenty years, as documented
in disability studies scholarship by Latin American academics. The changing
constructions and roles of disability make a regionally informed disability
studies not only relevant but urgently needed in order for research in the
humanities to keep pace with a shifting ideological landscape. Disabled
people in Latin America have traditionally been drastically marginalized,
remaining isolated and hidden from view in the family home or less often
relegated to institutions,6 or publicly visible only in the activity of beg-
ging on the streets.7 In the context of late twentieth and early twenty-first
century disability activism and reevaluation of the meanings of disability,
acquiescence to these long-standing discriminatory practices is being vigor-
ously challenged.
Evidence of a growing paradigm shift can be seen in Mexico’s initia-
tive in proposing the drafting of the United Nations Convention on the
Rights of Persons with Disabilities in 2007, and the impressive number of
Latin American nations who are now signatories of the Convention.8 Dis-
ability rights activism assumes different forms in different national contexts,
but it is on the rise throughout the region. According to the prominent
Mexican activist Federico Fleischmann, in 2011 Mexico had more than
one hundred and sixty organizations that were active in the movement,
and many of them were created by and for people with disabilities. The
disability rights activist and author James Charlton points to the specific
case of Nicaragua, where the Organization of Disabled Revolutionaries was
formed in the early 1980s as a result of the imperative to respond to the
needs of those who were disabled by war injuries during Nicaragua’s lengthy
civil conflict (142–143).9 In Chile, which ratified the U.N. Convention in
2008, the February 27, 2010, earthquake and tsunami cast a harsh light
on the inadequacy of stipulated preparations to assist those with physical
4 Susan Antebi and Beth E. Jörgensen

disabilities during natural disasters and it prompted criticism of the govern-

ment’s response by such groups as Rehabilitation International and the U.N.
Committee on the Rights of Persons with Disabilities.10

Disability Studies in the Latin American Context

As an academic discipline, disability studies in Latin America can trace its

origins to sources including local activism, legislation and policy analysis,
and international dialogue in the fields of education and psychology among
others. In addition, disability studies scholarship in the region has developed
in relation to academic and activist models from the United Kingdom, the
United States and Canada, as well as Spain.11 Such models, which together
have produced the interdisciplinary field of disability studies now increas-
ingly present in universities in the Global North, may in turn be traced
to the rise of disability rights movements in several locales in the 1970s
and 1980s, with developments in the United Kingdom often leading the
way.12 As disabled people saw civil rights activism for racial equality in the
United States and women’s movements in many nations gain strength, they
soon perceived the transformative potential of speaking and acting on their
own behalf against stigmatization and discrimination, and for equal rights,
access and full inclusion in society. In a manner parallel to the emergence
of African American or Africana studies and women’s and gender studies,
disability studies in the academy developed from an activist base, and it
retains an important ethical and social justice dimension as well as a com-
mitment to interdisciplinarity. Apropos of this book, the study of literature
and film was transformed for many scholars, particularly in the United States
and the United Kingdom, by the questions that the new disability studies
theories raised for understanding our cultural representations of disability,
illness, and debility, and new ways of reading both canonical and emerging
texts soon made their appearance.
In our research experience in Latin America to date, disability studies
and related scholarship tends to appear in the social sciences, more than
in the demonstrably rich field of literary discourse. The recent work of
such Latin American scholars as Patricia Brogna, Miguel Ángel Vite Pérez,
Manuel Aramayo Zamora, Carolina Ferrante, and many others working in
a variety of disciplines and in countries throughout the region demonstrates
growing interest in disability studies and related issues, particularly in the
context of debates on human rights, social justice and economic inequality.
Aramayo Zamora’s 2010 edited volume Hablemos de la discapacidad en la
diversidad (Let’s talk about disability in diversity), highlights the Venezuelan
 Introduction 5

context, addresses inclusion in education, and proposes a uniquely Venezu-

elan adaptation of the social model aimed toward the challenge of social
transformation in a framework of social diversity (85). Recent work by
Miguel Ángel Vite Pérez and Carolina Ferrante, on Mexico and Argentina,
respectively, emphasizes the socioeconomic vulnerability of disabled people
in relation to the neoliberal marketplace, as well as the roles of the state
and of the informal sector in this dynamic.13
Patricia Brogna’s 2009 edited volume, Visiones y revisiones de la dis-
capacidad, offers a range of scholarly approaches to disability and disability
studies from Latin American, Spanish, U.S.-based and British authors, and
encompassing disciplines such as history, psychoanalysis, anthropology, legal
theory, literature, law, sociology, and political science, as well as areas typi-
cally viewed as part of the “medical model” of disability studies, such as
rehabilitation, psychiatry, and medicine. In bringing together this geographi-
cal diversity of scholars from widely varied disciplines, Brogna creates an
important dialogue between distinct approaches to the field, and implicitly
proposes a disability studies that is at once Latin American and global.
The volume makes evident some of the trajectories of disability studies
scholarship and activism in Latin America that may not have been previ-
ously familiar to humanities-based Latin Americanists (including scholars of
literature). As Brogna notes, while disability studies in the Anglo-American
context has historically focused more on the question of individual rights,
in Latin America, emphasis has tended toward analysis of the macrosocial
(“Introducción,” 16). This observation suggests, as we have also noted here,
that those who seek evidence of disability studies, or what they consider to
be disability studies, in the Global South may have to adjust their expecta-
tions, critical tools, and avenues of research. In addition, Brogna’s comment
reflects the overall framework we propose for the present book, in which
we explicitly juxtapose individual and collective models of disability studies,
though here, unlike Brogna, we are especially interested in reading disability
through literary and filmic discourse.14
The framework for this volume, though oriented toward the study of
literature and film, nonetheless must incorporate possibilities for dialogue
with those in fields whose disability lexicon and foundational concepts may
be different from the prevailing theories in humanistic research. In this sense,
the interdisciplinary model we propose for a Latin Americanist disability
studies means the foreclosure of a finalized definition of “the field” and
an opening to expanded contexts for analysis. We note, too, that there is
an immediate risk inherent in disciplinary “encounters” across geopolitical
spaces, especially in the context of Latin American studies, in which the
South too often serves as raw material for imported theoretical processing
6 Susan Antebi and Beth E. Jörgensen

and export, and in which “encounter” often works as a thinly coded term for
violent conquest. Yet disability and disability studies, as we have shown here,
are already present and active features of Latin American academics, activism
and cultural production, in some cases in dialogue with Anglo-American
intellectual traditions, and at times in ways more attuned to the specificity of
local circumstance and disciplinarity. Our initial task is to better understand
the terms and risks of this interdisciplinary, international engagement. In
this regard, we offer as examples one publication and a recent international
colloquium that further demonstrate how disability and disability studies
have achieved relevance in Latin Americanist and transnational approaches
to cultural production and social theory.
In the introduction to his book, Nothing About Us Without Us, James
Charlton describes that he first came across his title phrase in 1993, as used
by leaders of the group “Disabled People South Africa” (3). Yet he didn’t
begin to use the phrase as his working title until two years later, when he
saw a picture in the Mexican newspaper, La Jornada, of peasants marching
with the banner, “Nunca Más Sin Nosotros” [Never Again Without Us]
(16). This anecdote effectively captures the way in which disability oppres-
sion and resistance acquire a particular inflection in regions that Charl-
ton—writing nearly two decades ago—called “underdeveloped,” and that we
term the Global South. Disability cannot be defined exclusively by global,
racialized structures of inequality or lack of access to resources. Yet such
patterns parallel disability oppression, compound it, and frequently create
it. In other words, Charlton’s work highlights an inextricable link between
disability and what Aníbal Quijano has defined as the coloniality of power.15
In January of 2013, the editors were invited by Benjamín Mayer
Foulkes and Beatriz Miranda to speak at a colloquium at the 17 Instituto
de Estudios Críticos in Mexico City, with the title “De cómo la Discapaci-
dad entrecomilla a la normalidad” [On How Disability Puts Normality in
Quotation Marks]. The event brought together more than twenty scholars
of disability studies and related fields, as well as artists, writers and activists,
with a high level of public attendance. That such an event took place, and
included Mexican, Latin American, and a few Anglo-American disability
studies scholars, attests to the internationalization of the field, and to a grow-
ing interest in disability studies in Mexico.16 Though the public included
a large percentage of graduate students from the 17 Instituto, focused in
areas such as psychoanalysis and critical theory, many in attendance were not
academics, or in some cases expressed interest in the question of disability
as divorced from discipline-specific academic pursuits. The space of the
colloquium allowed for a questioning of the parameters of what constitutes
“disability” and “disability studies” and required participants to continually
 Introduction 7

shift disciplinary languages in order to engage in effective dialogue with

one another. This event thus demonstrated how focus on disability means
working both within and beyond the confines of the academic sphere, in
ways specific to day-to-day embodied experience and physical space.

Disability Studies and Latin American Studies:

A Transdisciplinary Approach

This volume stages an encounter between two complex and vigorously

debated disciplines: Latin American literary, film, and cultural studies, and
disability studies. In a variety of important ways, scholars of Latin American
literary and cultural production have been “doing” disability studies for some
time—that is, they have been articulating debates in which some of the
concerns of disability studies implicitly emerge. However, disability studies
per se is not yet highly visible in Latin American studies as practiced in the
U.S. academy or as demonstrated, for example, in the research presented by
international scholars at the annual congress of the Latin American Studies
Association.17 Latin American studies worldwide has not engaged extensively
with disability studies in the humanities. To cite evidence from one essential
source for research on literature and film, the bibliography of the Modern
Language Association (MLA) in mid-2013 listed 579 entries under the
rubric of “disability studies,” of which roughly a dozen were immediately
identifiable as pertaining to Latin American topics. While factors such as the
determination of search terms perhaps figure into the underrepresentation in
the bibliography, it is nevertheless clear that disability studies has not taken
hold in our field to the same extent as in Anglo-American theory and criti-
cism.18 In the experience of the editors and the contributors to this volume,
there are relatively few venues for presenting our research, and our work in
disability studies is often received with expressions of surprise, which can
be either welcoming or dismissive. Considering that Latin American studies
frequently engages with issues relevant to contemporary disability studies,
such as political oppression and resistance, the delimitation and exploration
of minority identities, the affective politics of the multitude, and theoriza-
tions of the subject, the body and the collective, the lack of engagement
with disability itself seems worthy of critical attention.
The high stakes of lived, embodied, and unpredictable corporeality
and its representations, as well as the practices and consequences of dis-
crimination based on bodily and cognitive difference make a well-grounded
engagement with disability studies a crucial project for scholarship on Latin
American literature and film for a variety of reasons: the pervasive presence
8 Susan Antebi and Beth E. Jörgensen

of cultural representations of disability in the region; the changing social,

political and human rights status of disabled people; the increase in the pro-
duction of art by disabled people, some of which represents disability from
an “inside” perspective; and the ethical imperative to interrogate and over-
turn histories of stigmatization and oppression—histories that often overlap
with those of other marginalized communities—and to recover instances of
resistance to that oppression, among many others. In such circumstances,
we read disability and disability identity as more than just another “other”
to be added to the list of minority identities.19
In response to these pressing demands on our attention, Libre Acceso:
Latin American Literature and Film through Disability Studies brings together
essays on multiple genres of literature and film from seven countries of Latin
America, produced in the twentieth and twenty-first centuries. Works from
Argentina, Brazil, Chile, Colombia, Cuba, Mexico, and Peru are examined,
thereby spanning highly diverse societies of North America, the Caribbean and
South America. The diversity of genres is equally wide: narrative fiction (novels
and short stories), poetry, autobiography, essay, children’s literature, the colo-
nial codex and colonial medical reports as intertexts, and narrative and docu-
mentary film. Our incorporation of both literature and film in the volume is
based on a notion of cultural production that is inclusive of diverse media and
genres, and attentive to the ways in which a variety of works—in this case,
films and written texts—may speak to one another. We do not attempt to
offer a fully representative spectrum of works from each medium, but rather to
consider the presence and complexity of disability in Latin American cultural
production, and hence the relevance of disability studies-informed approaches
to these works. Readers will undoubtedly also find many of these approaches
useful to works not considered here. In the essays, corporeal, sensory, and
psychosocial conditions come into play in analyses that question their status
as commonly perceived deficiencies. Disability also intersects with factors of
class, race, and gender to prompt critical reflection on the complexities of
the social and cultural construction of disability as well as the human being’s
inescapably embodied experience of the world.20
In what follows of the introduction, we first review several founda-
tional concepts and debates for the history of contemporary disability studies
in order to contextualize the recourse to Anglo-American theory in many
of our analyses of Latin American literature and film. Readers who are not
already well-versed in the field will find ample references to prior studies to
prompt further exploration. Then we discuss the specificity of conducting
humanities-based disability studies research in Latin American contexts, and
we conclude with an overview of the organization of the volume and the
thirteen individual chapters.
 Introduction 9

Concepts in Disability Studies

The development of the social model of disability and the interrogation

of the concept of normalcy are two highly significant achievements of the
1980s and 1990s, which led to a series of ever more radical challenges to
the status quo around issues of disability. The articulation of disability as
socially constructed and not inherent in certain bodies marks a founda-
tional moment, one that is repeatedly invoked in Anglo-American disability
studies scholarship. As Tom Shakespeare has described, the “social model”
of disability arose in the 1970s in Great Britain through the activities
and ideology of UPIAS or Union of Physically Impaired Against Segre-
gation (“Social Model” 214–215). It represented a radical alternative to
the prevailing medical model, which posited that disability inheres in the
individual body or mind, and that anomalous human conditions (“impair-
ments”) should be subjected to treatment and rehabilitation to cure the
individual (216). UPIAS defined disability as: “the disadvantage or restric-
tion of activity caused by a contemporary social organization which takes
little or no account of people who have physical impairments and thus
excludes them from participation in the mainstream of social activities”
(quoted in Shakespeare 215). Impairment was defined as “lacking part of
or all of a limb, or having a defective limb, organism or mechanism of
the body” (Oliver 11). This definition of disability has achieved slogan-like
status in many disability studies programs, and in some cases effectively
removes disability from the individual body, relocating it almost exclusively
in social structures and physical environments. The distinction between
disability and impairment has historical significance in the evolution of
disability studies, because it has allowed for emphasis on topics such as
accessible education, work, and living environments for disabled people,
and social and cultural representations of disability, rather than on disability
as a problem belonging to individual sufferers in need of a medical solution.
Strict adherence to the social model has subsequently been questioned by
many contemporary disability studies scholars. Shakespeare (cited earlier)
notes limitations to the model, including the fact that it de-emphasizes
the material, bodily effects of impairment, such as the sensation of pain,
it ignores the social aspects of impairment, and it presupposes the possibil-
ity of removing all barriers to access in the world (218–220). It has also
been noted that it was developed by men with spinal cord injuries and
responded primarily to their conditions and needs, and has much less to say
about neurodiversity, cognitive disability, or those who have more complex
physical impairments. The emphasis in Oliver’s definition on missing or
defective limbs illustrates this observation.
10 Susan Antebi and Beth E. Jörgensen

In another significant move, disability studies scholars challenged the

nearly universal privileging of normative ability and “health,” an ideology
captured by the term “ableism.” Lennard J. Davis’s book Enforcing Normalcy
(1995) made an early and enduring contribution to disability studies by
tracing the history of “normalcy” to its origins in the Industrial Revolution
and the requirements of industrial labor, and demonstrating its deleterious
impact on people with anomalous bodies and minds.21 The rise of nation-
alism, as David Mitchell and Sharon Snyder show more recently in their
article, “The Eugenic Atlantic,” also contributed to the privileging of the
normal, as the strength of the nation was seen to depend on the fitness of
its citizens.
Disabled people have been termed the world’s largest minority group,
and as some disability studies scholars have noted, disability is the only
minority identity that crosses the lines traced by other identity markers,
such as gender, age, race, ethnicity, nationality, and sexual orientation. It is
estimated that 10 percent to 15 percent of the population worldwide lives
with a disability, and it is the one significant identity category that any
one of us can enter at any time, and that most of us, as we age, eventually
will.22 Nevertheless, the great diversity of physical, cognitive, and psychoso-
cial conditions that are categorized as disabilities and the inherent instability
of any person’s status as “able” have prompted a rich debate over the mean-
ing of disability as a minority identity and the coherence of the category
itself. The work of Lennard Davis and Tobin Siebers represents important
yet divergent positions in this debate. Davis, in his book Bending Over
Backwards (2002), advocates for conceiving of disability as an inherently
unstable identity category and for extending its application broadly across
society against the background of the exhaustion of identity politics and
contemporary science’s dismantling of the biological bases for many long-
standing identity categories. (23–26).23 Siebers in Disability Theory (2008)
leaves the category of disability more or less in place, but argues for claim-
ing disability as a valid and valuable form of human diversity, rather than
a personal defect or misfortune (3). He posits that one of the strengths of
persons with minority status, including the disabled, is that they are able
to critique aspects of hegemonic ideologies from their position outside or
marginal to the privileges that these ideologies grant (26).
Although the debate illustrated by Davis’s and Siebers’s positions is
crucial to the evolution of disability studies, and relevant to Latin American
contexts, it is complicated by scholarship on disability as a global phenom-
enon. As Robert McRuer’s discussion of global bodies underscores, the idea
that “everyone will be disabled if they live long enough” shifts its function
in the face of a display of coffins nailed to a wall near the Tijuana airport,
 Introduction 11

representing the number of Mexicans who die each year in attempts to

cross the border, those who “didn’t live long enough” (200–201). And as
Michael Davidson notes, “While it is true that many individuals will become
disabled, it is just as certain that those who become disabled earlier in life
(. . .) are poor and live in an underdeveloped country” (172). In his read-
ing of globalized disability, Davidson further emphasizes that attention to
community contexts necessarily undermines the model of disability based on
individual rights (173). Reading disability in Latin American cultural pro-
duction thus requires becoming attuned to diverse and sometimes conflict-
ing models of disability identity, community, and the politics of inequality.

Literary and Cultural Disability Studies,

Latin Americanist Readings

Tanya Titchkosky and Rod Michalko’s statement that “studying disability”

is not the same as disability studies has relevance for the project that this
volume takes up (Rethinking 5). Their observation clarifies the critical split
between a health sciences or medical model of disability and disability stud-
ies as a critical mode of inquiry in the humanities. That is, a disability studies
approach to cultural production does not seek to diagnose disabled char-
acters in literature and film, or to project desires for the characters’ greater
adherence to normalcy, but rather to examine the narrative function and the
cultural valence of the representation of disability. For this reason, narratives
in which disabled characters “overcome limitations,” provide inspiration to
readers and viewers, or serve to further the redemption of morally flawed
but otherwise “normal” characters are frequently critiqued as problematic
from a disability studies perspective. Such literary representation sustains
the view that disability is a problem in need of a solution or is primarily
valuable as an instrument of another’s salvation.24 Instead, disability studies
reads disability either as socially and politically constructed, or somewhere
at the juncture or melding of the social and the corporeal as proposed by
Siebers’s concept of “complex embodiment” (Disability Theory 23–25). Dis-
ability studies approaches to the humanities concur in viewing disability
as a significant and valuable aspect of human experience, interaction and
diversity as we have outlined.
Influential contributions to the study of literature from a disability
studies perspective include David Mitchell and Sharon Snyder’s ground-
breaking work, Narrative Prosthesis (2000) and Ato Quayson’s Aesthetic
Nervousness (2007). Mitchell and Snyder advance the theory that literary
fiction often depends on the representation of disability, like a crutch or
12 Susan Antebi and Beth E. Jörgensen

prosthetic limb, in order to tell its story, and to offer the illusion of tan-
gible materiality to the text. A frequently cited term from this work is
“metaphorical opportunism,” by which the literary work takes advantage of
the seemingly evocative and meaning-laden qualities of the disabled body,
in order to advance its own symbolic agenda. In reference to Mitchell
and Snyder’s model, one might note that the recognized canon of Latin
American literature is replete with characters who “suffer” from disability
or disabling illness, and whose discursive presence and literary destiny pri-
marily serve to jumpstart the narrative and further the development of the
“able-bodied” protagonists of the texts. María, of Jorge Isaacs’s eponymous
novel, is both epileptic and “biologically Jewish” (although professing the
Christian faith), and her death from tuberculosis conveniently removes her
as an obstacle to her criollo lover’s assumption of his destiny in Colombia’s
“national romance.”25 Robustiana, Don Zoilo’s “consumptive” daughter in
Florencio Sánchez’s play Barranca abajo, acts as a foil to her morally inferior
kinswomen, and her death contributes to her honest, but ineffectual father’s
decision to commit suicide rather than continue to live in a state of humili-
ation and powerlessness. In Santa, Federico Gamboa’s bestselling 1903 novel
about a beautiful Mexican prostitute, the blindness of the piano player who
falls in love with her is a convenient pretext for the detailed narration of
her physical attributes, visible only to the musician’s young assistant. Thanks,
too, to the man’s blindness, he remains a faithful lover despite the effects
of age and the venereal disease that eventually kill Santa.26 Similar instances
of the prosthetic function of literary disability are legion, but have gone
largely unexamined from a disability studies perspective.
Ato Quayson effectively adapts elements of Mitchell and Snyder’s
theory to his analysis of disability in postcolonial literature. For Quayson,
however, “this prostheticizing function is bound to fail” (210), meaning that
the representation of disability ultimately unsettles its ostensibly categorical
function. In many of the most familiar works of twentieth-century Latin
American literature, too, the unstable function of the narrative prosthesis
is apparent. This is strikingly so in major works of the Boom, such as
Gabriel García Márquez’s One Hundred Years of Solitude, or José Donoso’s
The Obscene Bird of the Night, novels in which the anomalous features of
characters’ bodies seem to bring the stories to life, even as the narratives
themselves center on the dizzying, otherwise ungraspable circularity of a
repeating and frustrated project. In García Márquez’s text, national history
becomes a seemingly endless procession of names, battles, and family gen-
erations that point not to a productive future but rather to a vortex of pre-
determined self-destruction. The novel’s conclusion illustrates national and
familial history as this fulfilled prophesy of destruction, through the figure
 Introduction 13

of a human infant with a pig’s tail, the last of his lineage, who is ultimately
devoured by ants. Here Quayson’s notion of aesthetic nervousness, or the
unmoored prosthesis, is useful in pointing to the ways in which disability
underscores the continuous, self-reflexive unraveling of the narrative project.
The study of literature and film has an undeniable importance for
disability studies, just as disability studies brings necessary new insights to
our reading of literary and filmic texts. As individuals and as communities,
we create our sense of self and other and our collective identities in large
part through our absorption and processing of the stories that come to us
through time and those that are continually produced in the present. Paul
Ricoeur speaks of our “narrative identity” to capture the sense that human
action and subjectivity are “entangled in the stories” and informed by the
“intrigues we received from our culture” (“Life” 131). A historically and
culturally situated disability studies is a critical tool for interpreting the
stories that shape our lives and for enlarging the “narrative identity that
constitutes us” (“Life” 131) in ways that are more inclusive and just.
The essays collected in Libre Acceso, with their focus on the roles and
representations of disability in Latin American cultural contexts, necessarily
highlight phenomena of stigmatized identity and radical social inequality
that are inextricably bound to specific economic and politico-historical pro-
cesses. These include racialized colonialist violence, instances of entrenched
authoritarianism, and the material effects of contemporary global capitalism.
Such conditions, it is worth noting, translate into higher percentages of
disabled people in Latin America and in the Global South overall.27 Indeed,
recent scholarship on disability as a global phenomenon, whether from a
social sciences perspective, or read through the lens of postcolonial discourse,
often notes the socioeconomic disparities that produce unequal distributions
of disability, and points to the need for disability studies approaches that
would account for such global inequalities, while transcending dominant
Anglo-American frameworks.
Shaun Grech has emphasized the need for a decolonization of dis-
ability analysis in the contexts of the Global South, pointing out the danger
of what he calls “academic neo-colonialism” (Alatas, 601; quoted in Grech,
“Disability and the Majority World” 59). He also notes the pervasive inter-
twining of neocolonial globalization and the oppression of disabled people,
borrowing here from the work of key Latin Americanist thinkers such as
Fernando Coronil and Aníbal Quijano. Along similar lines, Stuart Murray
and Clare Barker address disability studies in the context of postcolonial-
ism, contending that, “the history of colonialism . . . is indeed a history of
mass disablement” (230). They contend that the common disability studies
practice of criticizing associations between disability and trauma or loss
14 Susan Antebi and Beth E. Jörgensen

becomes problematic in contexts where, “the acquisition of disability may

be tied into wider patterns of dispossession—the loss of family, home, land,
community, employment” (230). The challenge for a global disability studies
and for this volume is to maintain awareness of the situated contexts in
which disability or disablement take place, as well as strategic responses to
these contexts, while at once allowing for openness to more unpredictable
meanings and valuations of disability, not necessarily limited by a logic of
prescripted causality.
Reading disability and the construction of otherness in Latin American
literary contexts also requires attention to traditions in which cannibalism,
monstrosity, and racial difference frequently operate as mutually referenc-
ing figures and in which resistance to oppression may often stem from this
dynamic. The ways in which disability sometimes emerges as a metaphor in
Latin American literature is thus partially determined by elements derived
from a colonialist tropology of otherness.28 Although this discursive tradition
is inseparable from the political and economic histories of the region, it is
important to note that the literary discourses participating in the configura-
tion of otherness and national or individual selfhood do not map directly
onto an overarching reading of global capitalism and geopolitics, but instead
add greater complexity to the representations and experiences of disability
that this book examines.

Libre Acceso

In the present volume our aim is to open an interdisciplinary and transre-

gional dialogue on disability studies, so as to expand our analysis toward
what disability might mean and might allow in its future Latin Americanist
configurations, as well as in the interdisciplinary humanities more gener-
ally. To this end we employ a critical framework and chapter organization
that highlight the tension between a Latin American lettered tradition that
tends to emphasize what we call the cultural production of the self, and a
focus on communities and populations through which the body becomes a
feature of collective experience, practice, and representation. Paying atten-
tion to overlaps and points of contact between these seemingly divergent
modes of reading Latin American cultural production allows us to consider
the shifting characteristics of the field, and to locate disability as central to
a dynamic through which collectives and selves might encounter, contest,
or engage one another.
We have organized the thirteen chapters into four sections according
to shared thematics and discourses. The sections themselves trace an over-
 Introduction 15

arching movement from a consideration of disability in the construction

of individual identity and consciousness as expressed in autobiographical
discourse; to an emphasis on collective phenomena and human rights in
literary and filmic works of fiction and nonfiction; to an examination of
the intersection of race and social marginality with disability; and conclud-
ing with two texts that create alternative worlds through the exercise of the
imagination and authorial experimentation as modes of questioning typical
categories of normative and anomalous embodiment and neurological func-
tion and of literary form. The question of disability in the analyses that
comprise the book continues to define a tightrope walk between self and
community and between localized, embodied, or represented experience,
and the more globalized biopolitical readings that inevitably inform con-
temporary approaches to both Latin American cultural studies and theories
of the body.
The three chapters that comprise Part I, “Disability Life Writing and
Constructions of the Self,” represent divergent literary genres and writing
styles around the common project of a writer’s exploring and inscribing his
or her own identity as a person with a disability. The specific conditions
of blindness and the physical limitations due to cerebral palsy inform the
poetry, interviews, essays, short stories, and autobiography that are treated
here. The opening chapter by the acclaimed Chilean novelist Lina Meruane
stands apart from the other chapters of the book, as it is a literary essay
with a significant autobiographical dimension and not a research study per
se, and yet it also provides a disability-centered reflection on practices of
reading and writing. In “Blind Spot: (Notes on Reading Blindness)” Meru-
ane enacts a reading journey through the literature of blindness and traces
the process of writing her most recent novel Sangre en el ojo (Seeing red),
winner of the 2012 Sor Juana Inés de la Cruz Prize. To a greater degree
than her other works, Sangre en el ojo represents a literary transformation
of the writer’s own experience, that of temporary vision loss.
Meruane weaves several thematic threads drawn from texts by Jorge
Luis Borges into her essay, and these are picked up and reworked in the
following chapter on the famed Argentinian writer. The idea of disability as
an advantage or a gift for the writer, the need for the blind person to “see”
through the prosthesis of others’ eyes, and the “secret power” attributed to
the blind in Western culture are concepts that reappear in Kevin Goldstein’s
study of Borges’s poetry. In “La cara que me mira: Demythologizing Blind-
ness in Borges’s Disability Life Writing,” Goldstein examines the resistance
in Borges’s late work toward positioning the figure of the blind seer in
isolation, and an expressed interest in the banality of the blind body. This
demythologizing tendency coincides with a growing shift in Borges’s work
16 Susan Antebi and Beth E. Jörgensen

toward life writing: personal essays and lectures and, at times, nearly con-
fessional lyric poems.
The final chapter of Part I “Negotiating the Geographies of Exclusion
and Access: Life Writing by Gabriela Brimmer and Ekiwah Adler-Beléndez,”
serves as a bridge from the autobiographical reflections highlighted thus
far to the concern with collective identities and human rights in Part II of
the volume. Beth Jörgensen’s chapter examines life writing by two Mexican
poets and activists with cerebral palsy. This reading of Gaby Brimmer by
Elena Poniatowska and Gabriela Brimmer and of poetry by Ekiwah Adler-
Beléndez draws on theories of disability life writing, and incorporates Tobin
Siebers’s theory of complex embodiment in an analysis that attends in part
to sexuality and access to the spaces of pleasure as a particularly stubborn
taboo for people with disabilities
Part II, “Global Bodies and the Coloniality of Disability” includes
four chapters focused on dilemmas specific to the geopolitical locations
of disability in Latin American cultural contexts. In the films and novel
under consideration, disability representation appears as intrinsic to tensions
between local and global economies, and to the individual and collective
bodies through which such economies operate. The notion of collective
bodies is crucial here, and illustrates a partial contrast with the mode of dis-
ability representation centered on the characteristics, experiences, and rights
of the individual body as subject, as emphasized in the chapters of Part I.
Emphasis on biopolitics and collective corporeality also contextualizes these
essays in relation to contemporary debates in Latin American literary and
cultural studies on the multitude and on theories of affect.29
Ryan Prout’s essay “Otras competencias: Ethnobotany, the Badianus
codex, and Metaphors of Mexican Memory Loss and Disability in Las buenas
hierbas (2010)” offers a reading of María Novaro’s film focused on the inter-
play between the pre-Columbian pharmacopeia as depicted in the Badianus
codex and the global phenomenon of dementia diagnosed as Alzheimer’s
disease. As Prout suggests, the film centers on a female ethnobotanist with
Alzheimer’s, and incorporates visual material from a sixteenth-century indig-
enous herbal almanac, so as to move between the global and the local, and
to offer an implicit critique of contemporary globalized biomedicine.
Following Prout’s essay and also treating film, “Cripping the Camera:
Disability and Filmic Interval in Carlos Reygadas’s Japón” by Susan Antebi
examines the role of cinematographic technique in contributing to an inter-
corporeal mode of disability as both representation and embodied identi-
fication. The technique is manifested when the viewer follows the uneven
“limping” perspective of the camera and then sees in a subsequent frame
that the protagonist limps and uses a cane. The essay argues that Reygadas’s
 Introduction 17

film creates a unique landscape through which diverse bodies and objects
may become interchangeable, questioning the boundaries of individual bod-
ies, and creating an unpredictable, at times collective mode of disability.
Victoria Dickman-Burnett takes up a related theme in her chapter,
“Bodily Integrity, Abjection, and the Politics of Gender and Place in Roberto
Bolaño’s 2666,” by juxtaposing the role of the visual artist, Edwin Johns,
who cuts off his own hand in order to increase the value of his paint-
ings, with that of the violated and murdered bodies of the hundreds of
young women of Santa Teresa, a fictionalized version of Ciudad Juárez. As
this chapter shows, 2666 interrogates the dilemma of differently valued,
exchanged, or commodified bodies in the borderlands between global North
and South, space of a violent global marketplace through which bodies
circulate and may become mutilated or disappear.
Part II concludes with Victoria L. Garrett’s essay, “Violence, Injury,
and Disability in Recent Latin American Film,” focusing on Francisco Var-
gas’s The Violin (2005) and Claudio Llosa’s The Milk of Sorrow (2009).
Garrett argues that the disabilities of the protagonists of both films intersect
with their racial, social, aged, gendered, and/or political alterity to indict
social injustice in their respective societies. In considering how recent Latin
American cinema treats the injury that results from structural violence and
violent states, the chapter takes up one of the key challenges of engaging
disability in postcolonial contexts. Specifically, Garrett negotiates both the
potential and the pitfalls of disability representation as an ethical interven-
tion in the globalization of inequality.
The four essays of Part III, “Embodied Frameworks: Disability, Race,
Marginality” continue the thematics of Part II by paying attention to disabil-
ity in the representation of communities and populations, and as inseparable
from the impact of global capitalism. More specifically, these essays highlight
the complex roles of disability, race, and social marginality as metaphorical
or at times literal cross-references of one another. The connected themes
of fixed versus porous identity categories and intersectionality have become
central to debates in disability studies, and link the field to gender and
queer studies and critical race theory. As Patricia Hill Collins describes:
“[a]s opposed to examining gender, race, class, and nation as separate sys-
tems of oppression, intersectionality explores how these systems mutually
construct one another . . .” (63; quoted in Erevelles and Minear, “Unspeak-
able Offenses” 130).30 As identities open toward the referencing or construc-
tion of one another, their boundaries may be called into question, returning
us to the debate surrounding disability as a stable versus unstable category.
In “Sô Candelário’s Inheritance: Leprosy as a Marker of Racial Iden-
tity in João Guimarães Rosa’s Grande Sertão: Veredas (1956)” Valéria Souza
18 Susan Antebi and Beth E. Jörgensen

focuses on the portrayal of leprosy in this sprawling novel, set in the nine-
teenth century but in dialogue with ancient, medieval, and modern notions
of disease and race, including frequent convergences between these catego-
ries. In Souza’s analysis of the encounter between two leprous characters,
one figured as white and the other as Afro-Brazilian, leprosy threatens to
emerge as lighter marks on darker skin, confounding the division between
the hereditary and the contagious, and intertwining anxieties of racial dif-
ference and illness. Melissa E. Schindler’s chapter “A solidão da escuridão:
On Visual Impairment and the Visibility of Race” also treats the intersect-
ing categories of race and disability, but through emphasis on (primarily)
Brazilian literary encounters between blindness and blackness, and on the
related dilemma of “seeing” race.
Following these chapters on disability and race, are two essays that
treat representations of mental illness. Nicola Gavioli’s “Mythicizing Disabil-
ity: The Life and Opinions of (what is left of ) Estamira,” similarly focuses
on a Brazilian cultural context, but in this case emphasizing the construction
and representation of psychosocial disability in documentary film. Gavioli
examines the ethics of disability representation through an analysis that
combines perspectives from disability studies with theories of testimonial
literature, documentary filmmaking and trauma, in order to consider the
intertwined dilemmas of authenticity, aesthetics and the representation and
construction of marginality.
“ ‘En ninguna parte’: Narrative Performances of Mental Illness in El
portero by Reinaldo Arenas and Corazón de skitalietz by Antonio José Ponte,”
closes Part III of the volume. Laura Kanost reads the two Cuban narratives
in the context of national mental health policies of the 1980s and 1990s,
under which many formerly institutionalized patients came to occupy a tran-
sitional placelessness, at times inextricable from the liminality of the socially
marginalized. In Kanost’s chapter, as in Schindler’s, Souza’s and Gavioli’s,
the characters’ experiences of corporeal or cognitive differences complicate
the historically and discursively determined categories they appear to occupy.
Part IV, “Imagining Other Worlds” concludes the volume with two
chapters that examine the production of a disability aesthetic in works of
experimental fiction that privilege the imagination as a way of resisting
conventional categories of disability. Here we circle back to a focus on indi-
vidual writers, and on the representation of individual disabled people, as
in Part I, but without returning to the autobiographical mode. The chapter
by Emily Hind, “The Disability Twist in Stranger Novels by Mario Bellatin
and Carmen Boullosa” considers the dilemma of inclusivity and its limits
in narrative fiction, through her analysis of experimental works by the two
 Introduction 19

Mexican writers. Hind suggests that alternatives to the traditional narrative

arc that tends to diagnose and cure its characters allow us to reflect on the
relationship between disability and novelistic fiction, even if such literary
experiments do not ultimately transcend what Lennard Davis has referred
to as the realist average that is central to the novel as genre.
Juan Manuel Espinosa reads Gabriel García Márquez’s iconic One
Hundred Years of Solitude alongside recent popular culture uses of charac-
ters with Asperger’s syndrome in the book’s final chapter. In “The Blur of
Imagination: Asperger’s Syndrome and Cien años de soledad,” an understand-
ing of the faculty of imagination based on Kant’s definition provides an
unexpected connection between the experience of reading the novel and that
of misreading Asperger’s. Ultimately, Espinosa’s chapter argues against the
ways in which a condition of apparent “otherness” like Asperger’s has been
medicalized, suggesting that the reading of One Hundred Years of Solitude
can have a role in promoting an expanded, ethically sound response to the
diversity of experiences and thought processes that constitute human life.
The research and writing of this volume has taken place at a time
in which the field of disability studies, as well as that of Latin American
literary, film, and cultural studies, have continued to undergo processes of
self-questioning and critical redefinition. In disability studies, an increasing
diversity of approaches, as well as attention to interdisciplinary models and
to the paradigm of globalization have led some to express concerns that the
field may be co-opted and diluted in its political efficacy. Latin American
cultural studies, in the meantime, can no longer be primarily defined in
terms of its alliances with the subaltern or with other political subjects, but
instead represents multiple angles on the question of what might constitute
a politically and culturally relevant Latin Americanist project, including
approaches in which no identifiable subject of alliance is posited.31 In both
cases, the dilemma of the discipline’s future hinges not simply on who or
what is the specific subject with whom one communicates, identifies, or
expresses solidarity. In tracing the movement between disability as articula-
tion of the self, and as that of the collective, or more amorphous multitude,
we have sought to underscore this critically productive tension as a focus
through which to bring disability studies and Latin American literary, film,
and cultural studies into dialogue. In addition, if disability in the contexts
of Latin American cultural production demands long-overdue critical atten-
tion, it is equally true that Latin Americanism as academic discipline might
benefit from turning to disability, not only as a key element of human
subjective experience, but also as a social process that itself demands ongo-
ing redefinition.
20 Susan Antebi and Beth E. Jörgensen

Notes

1. Kreutzberger, or “don Francisco” is also the host of the popular television

show, Sábado Gigante.
2. Brazil, Chile, Colombia, Costa Rica, El Salvador, Guatemala, Honduras,
Mexico, Panama, Paraguay, Peru, and Uruguay. Teletón was modeled on the work
of Jerry Lewis in the United States.
3. See Paul Longmore for a critical analysis of the use of disability in tele-
thons in the United States.
4. Rafael Cabrera’s 2012 article in the journal emeequis offers ample evi-
dence that in Mexico one of every three pesos donated to Teletón is from public
funds, which go to supporting the organization’s privately built and run rehabilita-
tion centers. He quotes Clara Judisman, a former secretary of Desarrollo Social in
Mexico City as saying that Teletón has become a monopoly, to the detriment of
other organizations and governmental services to disabled children.
5. Some disability studies scholars prefer the “people-first language” term
of “people with disabilities.” Others favor the term “disabled people” as a way to
emphasize that disability can be a central and celebratory element of human identity,
rather than an incidental, secondary characteristic, or a motive for shame. As Tanya
Titchkosky suggests, people-first language posits that disability is a problem to which
this same language offers the solution; its goal is to “dismember disability from the
self ” (“A Rose By Any Other Name” 134). However, we note the frequent usage of
“personas con discapacidad” (literally, “persons with disability”) in Spanish-speaking
disability studies contexts, and we recognize that the appropriacy of terminology
depends on a variety of contextual factors. For this reason, both terms appear at
different points in the book.
6. Disability Rights International has conducted research on the abusive
conditions in institutions for disabled people, particularly in psychiatric facilities,
in Mexico, Argentina, Peru and Paraguay. See www.disabilityrightsintl.org.
7. See Carolina Ferrante on this topic.
8. Latin American nations that are signatories to the Convention are Argen-
tina, Belize, Bolivia, Brazil, Chile, Colombia, Costa Rica, Cuba, Dominican Repub-
lic, Ecuador, El Salvador, Guatemala, Haiti, Honduras, Jamaica, Mexico, Nicaragua,
Panama, Paraguay, Peru, and Uruguay.
9. James Charlton’s book Nothing About Us Without Us showcases the work
of disability activists in Latin America and other world regions, primarily through
interviews, in combination with a Marxist analysis informed by the British social
model of disability. As scholars of Latin American studies will recognize, this title
and the dynamic it invokes suggests close ties to the genre of testimonio, and to
the highly politicized debates surrounding its role as literary and political discourse
and as tool of education and resistance.
10. The U.N. report was covered in an April 15, 2010 article posted in the
online version of the Santiago Times.
 Introduction 21

11. Ana Rosato and María Alfonsina Angelino’s edited volume offers extensive
examples of transnational dialogue and influence at work in Latin American dis-
ability studies. Many authors in the volume make reference to works by disability
studies scholars such as Tom Shakespeare and Michael Oliver, and citations of a
1998 Spanish translation of Len Barton’s Disability and Society (from a Madrid-based
publisher) are frequent. Examples of disability studies scholarship from Spain include
work by Miguel Ángel Verdugo Alonso and Xabier Etxeberria.
12. Two articles that offer a useful overview of the history of disability stud-
ies are David Pfeiffer’s “Philosophical Foundations of Disability Studies” (2002),
and Helen Meekosha’s “Drifting Down the Gulf Stream: Navigating the Cultures
of Disability Studies” (2004).
13. Also see Stuart Schrader and Facundo Chavez Penilla’s article in relation
to this topic.
14. Brogna’s more recent work includes her 2013 doctoral dissertation, her
2014 book Adultez, trabajo y discapacidad, and a 2014 comprehensive study of dis-
ability issues, accessibility and scholarship at the Universidad Nacional Autónoma
de México (UNAM).
15. For further discussion of Quijano’s concept of the coloniality of power,
see Susan Antebi’s chapter in this volume.
16. We do not wish to imply that this is the only conference of its kind.
We note here the increasingly international quality of the U.S.-based Society for
Disability Studies Conferences, as well as events such as the 2013 International
Disability Studies Conference in the Netherlands, featuring the work of Ecua-
dorian scholar Beatriz Miranda, among many others, and a 2008 conference in
Buenos Aires on the body and disability from a critical sociological perspective.
In addition, it is perhaps surprising that, according to Simi Linton (“Re: [DS-
HUM]”) the first conference on disability studies in the humanities was held at
the University of Puerto Rico at Mayagüez in 1993, and featured local academics
as well as names that have since become familiar to disability studies scholars in
the Anglo-American context.
17. A notable and recent exception to this tendency is a special section on
disability studies in Hispanic literature, edited by Encarnación Juárez-Almendros, in
the Arizona Journal of Hispanic Cultural Studies. In addition, Benjamin Fraser and
Mathew Marr’s recently published books on Spanish literary and cultural produc-
tion are the first monographs in English to employ disability studies approaches to
this area of scholarship.
18. Rosemarie Garland-Thomson illustrates the role of search terms in reveal-
ing or obscuring relevant scholarship in a recent conference presentation, “convert-
ing crippled saints.” Here she describes how the MLA bibliography at one point
omitted the term “crippled” as it was deemed insulting to disabled people, meaning
that an article on a “crippled saint” could only be accessed via the search term
“saint.”
19. This phrase is borrowed from Catherine Kudlick’s article “Disability His-
tory: Why We Need Another ‘Other.’ ”
22 Susan Antebi and Beth E. Jörgensen

20. Leprosy, blindness, Asperger’s Syndrome, cerebral palsy, Alzheimer’s dis-

ease, loss of limbs through injury and amputation, schizophrenia and self-mutilation
are represented in the texts under study.
21. Henri-Jacques Stiker’s History of Disability also represents an important
source on the construction of disability as an evolving and historically specific
phenomenon. A version of Stiker’s book first appeared in French in 1982. It was
published in English in 1999. Another important work on disability representa-
tion and history is Rosemarie Garland-Thomson’s Extraordinary Bodies (1997). All
of these texts depend on Foucauldian analyses of the concept of normalcy. For a
more recent treatment of this topic, see Shelley Tremain’s volume, Foucault and the
Government of Disability (2005).
22. The United Nations “Factsheet on Persons with Disability” gives the 10
percent figure, while the World Health Organization puts the figure at 15 percent.
As Michael Davidson notes, “A common refrain in disability studies is that disability
is the one identity category that, if we live long enough, everyone will inhabit (cf.
Berubé, “I should live”).” Davidson further refers to disability’s “crossing of racial,
sexual, and gendered categories” (172).
23. A concise treatment of Davis’s argument can be found in his essay “The
End of Identity Politics.”
24. In Aesthetic Nervousness, Ato Quayson offers a thematic typology of dis-
abled literary characters, among which he includes those who act as the ethical
background to the actions of other characters (36). Charles Dickens’s A Christmas
Carol can be seen as an example of this last tendency, in that Scrooge is redeemed
by his contemplation of the goodness and innocence of Tiny Tim.
25. See chapter 6, “María’s Disease: A National Novel (Con)Founded” in
Doris Sommer’s book Foundational Fictions.
26. See Antebi, “Blindness and Freakishness.”
27. As Shaun Grech notes, “The World Health Organisation estimates that
around 600 million people or 10% of the world’s population is disabled, with more
than 80% concentrated in the global South.” (“Recolonising” 87).
28. For a more complete treatment of this concept, see Antebi, Carnal
Inscriptions.
29. We refer, for example, to the impact of the work of Hardt and Negri and
their notion of the multitude on Latin Americanist scholarship. Also see Mitchell
and Snyder’s article on disability and the multitude. Recent interest in the politics
of affect is exemplified in the volume co-edited by Mabel Moraña and Ignacio
Sánchez Prado, and in a frequently cited article by Diedra Rieber on the Mexican
film, Amores Perros.
30. Disability studies scholarship offers multiple angles to the topic of inter-
sectionality. See, for example, Rosemarie Garland-Thomson’s Extraordinary Bodies
as an approach to disability and feminist theory, as well as disability and race,
and Robert McRuer’s Crip Theory, on heterosexuality and able-bodiedness. Nirmala
Erevelles studies the historically specific mutual constructions of race and disability
in her Disability and Difference in Global Contexts, while Christopher Bell’s edited
volume, Blackness and Disability provides an additional range of approaches.
 Introduction 23

31. On this point see for example Alberto Moreiras’s article, “¿Puedo madru-
garme a un narco?”

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 Part I

Disability Life Writing and

Constructions of the Self
 Chapter 1

Blind Spot
(Notes on Reading Blindness)

Lina Meruane
Translated by Beth E. Jörgensen

Para la tarea del arte, la ceguera no es del todo una desdicha: puede
ser un instrumento. (For the making of art, blindness is not an
absolute misfortune: it can be a tool.)
—Jorge Luis Borges

brief retelling of a loss

Sangre en el ojo (Seeing Red) is the account of a medical emergency. The

story of an ocular hemorrhage. The chronicle of blindness foretold. After
such a unique event (unique but perhaps repeatable) writing poses a ques-
tion. Could the absence of one of our senses diminish the legitimacy—the
moral, bodily, and textual legitimacy—of a character who signs her books
(or used to sign, before her blindness) under the name of Lina Meruane?
Could sightlessness, against all expectations, confer some advantage over
those who see? The novel examines how the experience progressively trans-
forms her, the newly blind woman, as much as the other characters: her
new boyfriend, her elderly mother. The novel sets its sight on her treat-
ing physician, on the ethical but limited vision of medicine and on the
viewpoints of the multiple secondary characters. Loss appears like a sticking

29
30 Lina Meruane

point around which all conduct changes and at times collapses. Because
blindness, I think or thought, while I was writing this novel, threatens
all of our assumptions, all the habits that anchor each of us safely in our
work. In the urgency of the present moment, each character confronts the
questions detonated by blindness. Lucina (that is her real name, that sudden
blind woman) must resolve how to inhabit, among the seeing, an invisible
present. How to avoid turning into a passive victim of circumstance. How
to turn the situation to her benefit. To the benefit, as well, of a writing
that accounts for this moment of hers. But to place on the page what is no
longer seen is of necessity an exercise aided by the tricks of memory and by
the spoken (but always questionable) visual truth apported by others. She
will have to make use of eyes on loan, seeing eyes that impose their own
reading of reality. The novel is organized, then, around this dilemma. The
blind woman’s subordination in the very act of perceiving and apprehend-
ing (or reapprehending) the world. The manipulations that we carry out on
the real. The choice of point of view. Disputed authorship and authority
over a shared tale. Sometimes writing will require other eyes, but then this
question arises: Where does the other’s gaze leave off and one’s own begin;
where does Ignacio’s body end and that of his blind woman begin?

a loss foretold

A few more words so as not to lose sight of a decisive fact: the writing of
Sangre en el ojo was triggered by my own experience of temporary blindness.
A loss, as I said, foretold; an event of unknown dimensions for which I
had prepared myself as well as possible. It wasn’t always easy to follow the
strict medical orders that demanded complete rest. Impossible to refrain
from sudden movements, bending over, lifting heavy or bulky objects that
could make the malformed veins of the eyes burst. In the months before
the hemorrhage, I saw those malignant veins creeping across the retina like
slow-growing roots. If I shook my head a little, they also moved, rhythmi-
cally, supported by the jelly-like vitreous humor. Their relentless growth
assured that my quietude would only delay what was destined to happen,
what began to occur one day, while I was bending over to pick up a piece
of trash stuck to the carpet. The first drop of blood appeared suddenly, like
a dark light burning between the back of my eye and the wall. It was a
pinpoint stain that began to spread right away, turning the world into a blur
that lasted for hours. The blurry days recurred with increasing frequency,
and I finally accepted that soon it wouldn’t be one or two drops. My eyes
would fill with blood.
 Blind Spot 31

closing my eyes

“Uno tiene muchos ojos dentro del cerebro, como un atadijo de estrellas.
Por eso hay que cerrar los ojos corporales, macizo, aunque venga la ano-
checida, aunque no sea de día, para poder ver detrás” (Poniatowska, Hasta
12). (We all have many eyes inside our brain, like a string of stars. To be
able to see clearly, you have to keep your eyes closed tight, even at night
when there’s no daylight” [Poniatowska, Here’s to You 6].) It’s as if Jesusa
Palancares were whispering these words in my ears, words first spoken to
Poniatowska, and later read by me.

the singular experience

Seeing again little by little after three months was a singular experience that I
knew nothing about. A story never told in literature. There were blind people
narrated by the sighted, and the permanently blind—very few—who told or
bore witness to their condition. But the account of sight regained had not
been written. It was a unique experience, potential writing matter. Not to
downplay the value of literature: any everyday experience can become unique
if the writer gives it a personal stamp, if memory transforms it (Tabucchi 23).
But Roberto Calasso cautions and even says specifically that there are experi-
ences that have a different status. Experiences that are “more exceptional than
others” and produce strange or “unique” books, even considering the prior
work of their writer. (The loss of a physical ability is one of those instances,
the loss of a loved one is another.)1 Calasso designates these rare documents
as unclassifiable and heterogeneous, as tales in which one acknowledges “que
al autor le ha sucedido algo y que ese algo ha terminado por depositarlo en
su escrito” (qtd. by Rabassa). (something has happened to the author and
that something has been put into his work for safekeeping.) Perhaps because
of their particular origin, these “unique books” (that might never have been
written) shouldn’t be judged only for their literary value but also for the
courage of the author in facing up to that critical moment without looking
away. Without waiting for mediating others, for false translators. Without
avoiding the first person or the proper name.

wretched stuff

Working with the stuff of suffering, however, is delicate work and it stays the
hand. A dilemma arises: one expects the sick person to make a direct and
32 Lina Meruane

detailed confession of their suffering, in that event writing could go straight

downhill. Josefina Vicens, like Borges, lost her sight. Sunk into a deep depres-
sion, she considered the possibility of undertaking a final book—a book that
could have been “unique” if it had been written. Vicens said: “Después de
Los años falsos [su novela segunda y final] se me ocurrió escribir una novela
acerca del problema de mi ceguera, pero muy pronto me dije ‘yo no escribo
nada de eso, va a salir una cosa lastimera’ ” (González Dueñas 10). (After
“The False Years” [her second and final novel] it occurred to me to write a
novel about the problem of my blindness, but soon I told myself ‘don’t write
about that, it’s going to turn out to be a wretched thing.’ ”) Perhaps that is
why Borges also abstained from this kind of writing and limited himself to
referring to the matter only in a speech or a literary essay from 1977. Blind-
ness runs through Borges’s poetry, it is part of his poetics of blind mirrors,
ocular labyrinths, praise for the shadows (Borges’s blindness was not night but
twilight). His poetry makes reference to venerable blind men, Milton and, of
course, Joyce, but he does not devote his short stories to plotting blindness.
In the same fashion, James Joyce would only write about his afflicted
vision and his successive surgeries in epistolary form. Like Borges, Joyce suf-
fered from an eye condition since childhood. He consulted different doctors,
got different diagnoses (iritis, conjunctivitis, glaucoma, episcleritis, cataracts),
went through several surgeries and spent long periods of his adulthood in near
blindness. It was no secret: Joyce was already a well-known author when he
posed in Paris for Berenice Abbott with his eye covered after surgery. (Anecdot-
ally, his only daughter, born when Joyce was 25 years old, was named Lucia,
after the patron saint of the blind.) His visual impairment would not prevent
Joyce from writing his masterpieces: it is well documented that his collective
composition practice was derived from such impairment. (Interesting to note,
too, is that Samuel Beckett collaborated with Joyce and Beckett’s own work
is filled with blind characters). Other than in passing—as in the brief episode
in Ulysses when Bloom assists the blind boy to cross a street—blindness is not
a central theme in Joyce’s work. However, visual affliction is referenced in a
profusion of word games in both Ulysses and Finnegans Wake.
It is as if a fear of also losing the pulse of the imagination loomed
over the crisis. A fear of turning to stereotyped and superficial images of
suffering. Revealing, perhaps, that excessively wretched stuff that could irre-
versibly damage writing or existence, sully the name of the author.

naming an I

During the time that I was engaged with Sangre en el ojo I asked myself
if it would be wise to reveal the novel’s basis in biography, if it would be
 Blind Spot 33

pertinent or inadequate to unveil the intimate origin of the tale. I debated

with myself over including or not my own name, and I finally decided to
do so. It was necessary in order to produce an illusion, let’s say an optical
illusion, in the reader: that Lucina would sign her novel as Lina made her
name a fiction. An indispensable device, I thought, for constructing a falsi-
fied truth, tossing in the real name in order to destabilize it and deny it
toward the end of the novel. “A false I” (I don’t know who said this before):
“I wish to say I, but each time I say it, I self-destruct.”

losing an eye that never abandons you

It would be easy to think that Sangre en el ojo began to take shape after-
ward. Or that its writing was contemplated during the dark months of
blindness. It wasn’t like that, however. This story began to take shape long
before the event. It sent out its slow roots across many years, across many
separate stories. One of those tentative texts was finished in the months
that passed between the diagnosis and the hemorrhage; it was a strange,
fragmentary story about a woman who was losing her sight, confined to a
house full of shedding cats; in this story there is also a man, a neighbor
who can see, an elusive adulterous redhead, who visits that soon-to-be
blind woman from time to time. I remember the appearances of the ever
more fiery-haired lover (as she grows more blind, his hair is the only thing
she can make out), and I remember that the loss is triggered in her by a
strange allergy that the shedding cats caused; nothing more. This story is
now as lost to my old computer’s memory as it is to my own. But that
wasn’t my first fiction about the loss of sight. Reading backward in time
I have found that this theme already appeared in a 1995 story that ended
up in Las infantas. The plot goes like this: a doll who is in love with her
doll maker tears out an eye out of jealousy for her flesh-and-blood sister
(or stepsister). The doll blinds herself when she comprehends that her cloth
body is the insurmountable limit to her human aspirations; her body, she
grasps once she meets the stepsister (of whom she, the doll, is an exact
copy), isn’t what she thought and so she destroys it, or better put, she
tears it apart, starting with her eye. That scene, nevertheless, wasn’t new
either; I realized it later, when I found a forgotten writing exercise dated
1990 in a drawer. On those two sheets I found, to my astonishment,
another doll who lost her sight in an fit of hatred. Now, as I retrieve
these stories, I understand that a line once scribbled in a notebook full of
random sentences that I kept during my months-long blindness, illegible
and written at an angle, had come true: a sentence like so many others,
tossed blindly on the page, that worked like a command. Like a theory.
34 Lina Meruane

Like a premonition. “You can abandon a text—I decipher in my twisted

calligraphy—but the text never abandons you.”

the corporality of the world

Writing about illness was something that I had spent years mulling over.
Years putting off. I still find quotes sprinkled on scraps of paper and I don’t
recognize the handwriting, although I know it’s mine: the pointy handwriting
I used to have. Other notes found their place in a file started two decades ago.
At random I choose one among dozens. Andrés Sánchez Robayna writes: “Es
preciso que el cuerpo perciba la carnalidad del mundo para poder inscribirse
en él” (5). (The body needs to perceive the corporality of the world in order
to inscribe itself in it.) This time memory serves. I know that I stole this
verse in the Canary Islands, in the reading that I did while proofreading my
first novel. It wasn’t my book. A poet who would later make a quick cameo
appearance in Sangre en el ojo must have lent it to me.

attempting a memory

In some indeterminable moment I know that I considered writing a mem-

oir. I had in mind two “unique books”: Darkness Visible, a suitable title for
my topic, although it is the account of William Styron’s deep depression, a
memoir that had captivated me when I was in my twenties. There was also
The Bell Jar, the suicide autobiography of Sylvia Plath, who had her first
depressive episode when she arrived in New York. I recall being stretched out
on a bed listening to the anguished narrative on a huge tape recorder. I recall
the voice on the double cassette tapes that the library for the blind sent to
me. “I was supposed to be having the time of my life.” No need to jot down
that line: it would have served to describe my own New York crisis. This line
became the epigraph of the memoir that I later threw away. I failed in my
attempt. I never found the right register. I couldn’t stick to the facts. The
act of imagining what is not seen took precedence, getting the better of me.

oblivion’s certitude

Writing about that episode has distanced it, made it so diffuse as to erase
it from my memory. Its only certain existence is found in the fictional
reconstruction. Writing is its only reality. Lina Meruane.
 Blind Spot 35

involuntary trilogy

I began the manuscript of Sangre en el ojo against my expectations. I didn’t

have a conscious plan—although there was a document with odd memories
about the episode that hadn’t found a place in the novel. I had neither the
intention nor the time. When I got the invitation to contribute a text to
the anthology Excesos del cuerpo (2009) (Bodily Excess), I had just started
to draft my PhD dissertation on the impact of AIDS in Latin American
literature. (That book would be called Viajes virales [Viral Voyages].) Nor
was I enthusiastic about returning literarily to illness following the recent
publication of Fruta podrida (2007) (Rotten Fruit), a novel governed by
the degenerative logic of diabetes. Only due to the editors’ insistence (I
didn’t have a plan, I said; I didn’t have time, I insisted; it wasn’t going
to work, but I never told them this), I set out to write just a short story
that, against my will, began to drift into a long one: the beginning of a
novel that would conclude my “involuntary trilogy” (Mario Levrero dixit)
on illness. I call it “involuntary,” but above all, I call it strange or bizarre,
because each one of these books (an essay, two novels) published over the
course of a decade, interrogate in heterogeneous ways, in dissimilar registers,
using different styles and different genres, they all interrogate, I repeat, the
death drive, the political resistance of bodies that deviate from the norm,
the survival instinct that accompanies the existence of the invalid. A trilogy
that points to, without foreclosing on it, the diverse experiences of loss of
validity, of in-validity, brought about by bodily decay.

blood: sweet or fresh

I’ll set aside the trilogy’s essay in order to focus on the two diabetic novels
and their protagonists. Now I think (hindsight allows me this conjecture)
that the two of them, suspended between Chile and New York, present
conflicting, even opposite positions, when faced with the same ideological
context: the social utopia of corporeal perfection (which physical disability
invalidates) and the dream of immortality (hindered and even negated by
the irrevocable fact of decay). Faced with the same degenerative illness and
its various trajectories—gangrene in the 2007 novel, blindness in 2012—the
protagonists set out on divergent paths. The girl with sweet blood, native of
Ojo Seco, a blind alley in the middle of Chile’s industrial fruit belt, chooses
to travel and die in front of a foreign hospital, in a performance of critical
resistance against a system that discarded her as useless. Her decision lays
claim to the natural strength of imperfection, the expected horizon of the
36 Lina Meruane

unhealthy, the organic cycle of life and death, as opposed to the capitalist
system of incessant production.2 The woman in Sangre en el ojo appropri-
ates this same unscrupulous medical insistence on health present in Fruta
podrida and carries it to its final consequences. She takes advantage of her
disabled status, however, to save herself. Contrary to the death wish of the
girl from Ojo Seco, this other woman, blinded by a cruel instinct for life,
looks for a fresh eye. But perhaps, I now think, following these disorganized
notes, the differences between the two novels aren’t so extreme. Perhaps they
can be read as opposite sides of a single, complex situation—the ethics of
the body in our society—that forces us to take sides. To find our place on
shifting ground. In my view this is what the novels accomplish: they carry
the question of life and death to almost unbearable extremes against one
single biopolitical background. Only extreme situations, I believe, lend true
perspective on a problem.

drafting blindness

Looking at both books with a critical eye (and not with my author’s cross-
eyed squint), I see that the newer novel returns to the scene of the loss. It
starts there, as if to pick up something that remained open or hanging in
the prior text. Fruta podrida concludes with the discovery that the infected
foot has disappeared or exploded (as the prose also explodes at the end of
the novel). Sangre en el ojo begins with another explosion, one in which
what is lost is sight and not life, however. In the time elapsed between one
novel and the next (time during which I managed to finish Viajes virales) I
asked myself somewhat anxiously if the death of a character, besides being
understood as a sign of political resistance in extreme situations—as with a
suicide bomber—might signify a capitulation, a loss of that obstinate energy
that defines the political. Exemplary or model suicides whether in literature
or real life are always pyrrhic victories. That’s what I thought or could have
thought, not entirely convinced that those deaths could make possible a
social transformation. Halfway, limited victories, unsustainable triumphs,
I told myself, and then perhaps I asked: Victories run-through with the
paradox of failure? Could the resistance posed by a sick body influence the
workings of the body politic? Maybe it would be necessary (more creative,
more defiant) to imagine the polar opposite. Write another scene: not the
scene of the self-elimination of the novelistic imaginary, but the imposition
of bodily illness or loss on others. That is, instead of marginalizing the sick
from the scene, place her in the center, disseminate that bodily experience,
impose it on others. Cut the distance between the healthy and the sick,
between the sighted and the blind, between the valid and the invalid. Do
 Blind Spot 37

this in the new novel, certainly, but also in a wider sense, add pathology to
the social imaginary of the normal: destabilize the certainty that a border
exists, depose health as the norm. Turn the mirror on the healthy and make
them face their own illness.

prior fermentations

This morning, in the final revision of this essay, I get the idea to open the
file of my first novel, Póstuma (2000) (Posthumous). It occurs to me to
search for the words “fruit” and “rotten” in the text. The following sentence
appears, after the encounter between the protagonist and her dying, diabetic
grandmother. “Me acerqué, respirando por la boca para no sentir el intenso
olor a fruta podrida. Era ella, la vieja, como cosecha en fermento” (32).
(I approached her breathing through my mouth so as not to smell the
intense aroma of rotten fruit. It was her, the old woman, like fermenting
wine.) I narrow the search to “fruit.” I find this: “En la morgue, tal vez,
[. . .] ahí debía estar mi abuela, su cuerpo extrañamente frío y rígido, un
cuerpo ya empezando a volverse blando otra vez, otra vez suave, pulposo
como una fruta madura” (12). (In the morgue, maybe, that was where my
grandmother must be, her body strangely cold and stiff, a body starting
to turn soft again, smooth again, fleshy like a piece of ripe fruit.) I think
again that illness has not wanted to abandon me.

women in love

I only remembered this one line by the writer Agata Gligo. I met her before
I had read her work, when she was already ill. She still had a bright gaze.
She wore a turban that highlighted her green eyes, now darkened. She smiled
mysteriously. In her posthumous diary she reveals that she had “fallen in
love with her own illness.” (Agata, I think, calling her to mind, I wonder
if I have also fallen in love with mine?)

groping in the dark

A setback in this essay: getting off track. What was supposed to be a reflec-
tion on writing disability, on the creation of disabled characters, has become
something else: a text that cannot complete its task. A disabled, fragmentary
text. I begin to circle the room (as I have circled this essay). I trace des-
perate, determined circles around the discovery that I have never stopped
38 Lina Meruane

to consider this theme before. More circling. Perhaps I should sit down
and rethink my omission. Perhaps, I conclude (my breathing agitated by
so much circling, so much groping in the dark) I simply haven’t thought
about loss in the terms that were suggested. Invalidism. Inability. Disability.
A person with reduced talents. This jargon is alien to me. I find myself
reflecting on the alternative abilities of the supposedly disabled. On the need
to invest loss with gain, physical limitation with the development of new
muscles. At least in fiction. I feel trapped, looking through my window at
the wall of the house next door, when the inspiring logic of the Oulipo
comes to me by free association: the imposition of limits is an indispensable
requirement of the creative process. Limit as resource, obstacles as a way of
carrying language and literary form to a higher imaginative level. Thinking
about the Oulipian technique, I return to the limited body. To the physical
restrictions that could lead to the formulation of a poetics and an ethics of
the possible. But my disquisition doesn’t end here. I am assailed by doubts
about opposing the disdain that originates in the sense of superiority and
condescending, paternalistic pity with an equally perverse move: that of
making disability into a virtue.

the curious monster

I talk about reading, but it’s just a turn of speech. What I did in those
months was to listen to books. Dozens. All listed in a document titled
“Books on Tape,” which perhaps ought to be called “Books to Keep You
from Going Crazy.” Now in my notebook on blindness I find this refer-
ence to Pale Horse, Pale Rider by Katherine Anne Porter, taken down after I
had recuperated while I was still on the path to reading with my own eyes
again. “The body is a curious monster”—the narrator speaks to me with
her seductive voice, and I rewind the tape to listen again—“The body is a
curious monster, no place to live in. How could anyone feel at home there.
Is it possible that I will ever accustom myself to this place, she asked.” I
find other lines jotted down following these. It is an accidental dialogue
between two very different authors. Severo Sarduy answers Porter: “Antes
disfrutaba de una ilusión persistente: ser uno. Ahora somos dos, inseparables,
idénticos: la enfermedad y yo” (Sarduy 111). (Before, I enjoyed a persistent
illusion: that I was one. Now we are two, inseparable and identical: illness
and I.) For Porter the body is an uninhabitable house, a monstrous prison.
For Sarduy, the sick body is the inescapable double. I don’t find any hint
of virtue in either one. Maybe virtue is written here in invisible ink.
 Blind Spot 39

terror’s superior form

Some “élan vital” must have emanated from the readings undertaken for
Viajes virales. From Emil Cioran’s funereal but existential breviaries. From
Sarduy’s plague diaries. From Reinaldo Arenas’s challenging novels of termi-
nal illness. From the necrophiliac urge in Bellatin’s writing. From all that
literature touched by the magic wand of tuberculosis. From the metaphorical
rigors of cancer in the essays of Susan Sontag. In all of them, the captivat-
ing, rebellious optic of Virginia Woolf ’s early reflections on illness is visible.
Texts that think about illness, that turn over the idea of loss, that ask how
to invert the logic of illness as death or as an elimination round. Readings
filled with clues that subvert the terminal narrative. Those are the tracks
that Sangre en el ojo was ultimately following: during the prolonged read-
ing period, the need arose to overturn the tragic course of Fruta podrida.
Search for empowering instances of the figure of the blind woman. Think
about loss as a lucid or illuminating or hallucinating force in the context of
which health is “an insignificant state of perfection” (Cioran 125). Because
health, Cioran tells us, sedates us, makes us inattentive to reality. And a
full life demands the consciousness (a political consciousness, I would add)
of being alive, and the body grants us that knowledge precisely when it is
in pain, when everything begins to come apart. The experience of terror
granted by illness or disability is a dramatic revelation about being alive,
a superior form of consciousness that is associated with vitality and where
“the apostacy of the organs” (Cioran 126) comes to fruition. Because in its
beginning stages, consciousness (to paraphrase from Cioran) is consciousness
of the internal organs.

suspicions

“A rule of conduct: mistrust the sickly” (129). Cioran again. He warns us

that illness is understood as an exceptional state governed by an I who is
unbound by the norms of social harmony, even free to practice cruelty. I
fine-tune his rule: don’t trust the blind and their intelligent dead eyes.

ocular intelligence

But where does the intelligence of a sightless eye come from and what does it
mean? What power does blindness grant? Lucina says about the hemorrhage:
40 Lina Meruane

“estar así, en esta bruma, es como estar dormida y a la vez despierta. Es

como estar un poco sorda” (Meruane, Sangre 39). (to be that way, in that
fog, is like being asleep and awake at the same time. It’s like being slightly
deaf.) It is a demoralized statement, but only apparently so, because what
comes out of that fog is an unexpected wisdom that allows her to reorganize
everything that she knows in that unfavorable setting. Rather than a shaky
start to the story, I think of that moment in the novel as an opportunity
above all (in dream, in deafness) to turn within. Blindness confers an intro-
spective, secret power (which others lack and as a result fear). Borges, one
of Derrida’s “blind ancestors” of the literary canon,3 refers to this knowing
relationship that the blind establishes with himself in an affirmative way,
but through a rhetorical question: “[W]ho lives more with themselves? Who
can explore themselves more? [. . .] According to the Socratic phrase, who
can know himself more than the blind man?” (106). One doesn’t only turn
within, but rather soon one begins to disregard the coercive or pitying gaze
that others’ eyes flaunt, and then hierarchy suffers a subtle but meaningful
transformation. If we accept what blind writing proposes, then the lost or
wandering or indefinable gaze of those who do not see is disturbing to those
who do. It raises suspicion about what the blind man or woman perceives.
The clouded eye seems to reawaken obscure anxieties about a reality that
goes beyond the natural. At least that seems to be the discovery that the
Lange sisters make in Cuadernos de infancia [Childhood Notebooks], as
they tell it: “Habíamos creído que [el hombre] tenía una vista sobrenatu-
ral. En realidad, estaba casi ciego” (184). (We had thought that [the man]
had supernatural vision. In reality, he was almost blind.) The same mistake
repels and attracts Ana in a disturbing story by Clarice Lispector, when she
observes a blind man at a bus stop chewing gum, “sin sufrimiento, con
los ojos abiertos” (Lispector 23). (without suffering, with his eyes open.)
These blank but defiant eyes take hold of the protagonist’s imagination like
a tortured but obsessive love, and they accompany her to the house where
her husband and children are waiting for her. There are episodes in which
the empty gaze provokes panoptical epiphanies: blind men posted on city
streets tapping their tin cups to attract attention, wearing large dark glasses
like thugs of the dictatorship (in a travel chronicle by Maruja Torres); or
standing in line like security guards in a supermarket (in a short story by
Mayra Luna). In “Valium” (one of Nicolás Poblete’s short stories), a similar
anxiety arises when the protagonist convinces herself that she is being spied
on and pursued by a woman who turns out to be blind. These impossible
gazes disturb the security of those who think they are being observed (all
of them young, fragile women). The blind eye holds an unspeakable power
that enthralls them.
 Blind Spot 41

anx-eye-eties

Or perhaps they fear blind contagion. I thought about this a great deal later,
after publishing Sangre en el ojo, when I was struck by the infinite accounts
of the eye conditions suffered by the novel’s readers. Hemorrhages caused
by blows, small strokes in the optical nerve, severe myopia, the threat of
glaucoma, macular degeneration, retinal flashes or floaters like insects caught
in the eye. It didn’t surprise me that Lucina’s blindness let loose an identity
crisis. I had seen it before in my own notes: “Es automático. [El personaje
v]e a un ciego y se imagina ciego” (Zambra 20).4 (It’s automatic. The char-
acter sees a blind person and imagines himself to be blind.) Some pages
on he adds that “no temía propiamente a la oscuridad sino a la posibilidad
de quedarse ciego. Una noche despertó sin resquicios de luz a que acudir:
primero tuvo la impresión de que alguien había cerrado la pieza, y luego la
pavorosa convicción de que había quedado ciego” (55). (he didn’t exactly
fear darkness but rather the possibility of going blind. One night he woke
up in the pitch dark: first he thought someone had closed the door to the
room, and then he had the terrifying conviction that he had gone blind.)

a blindness that cannot be seen

José Lezama Lima introduces this odd philosophical affirmation in Paradiso:

“No es bueno que el hombre no vea nada, no es bueno tampoco que vea
lo suficiente para conocer lo que ha perdido. Es bueno ver y no ver: esto
es precisamente el estado de la naturaleza (Pascal)” (33, emphasis added).
(It’s not good for man to see nothing, nor is it good for him to see well
enough to know what he has lost. It is good to see and not see: that is
precisely the natural state [Pascal].)

victims, the vision-less, visionaries

I return to my notes in search of clues to help me understand this rejection

and, in the process, to examine the ways in which the eye appears in the
texts of our tradition. I confirm that since long ago its vigilant presence has
insured the social order. The abrogation of the gaze that safeguards order is
terrifying. The eye is god or king: that is the form it takes. It is the high-
est authority: knowledge (or sa-voir, Derrida declares) that emanates from
the watchful eye. It is the law of the father; for that reason the drama of
blindness is of the order of the masculine. Jacques Derrida affirms (I merely
42 Lina Meruane

paraphrase him) that in our culture there are only great blind men. They are
all renowned. What the philosopher does not also explain is that blindness
hangs over that gender because power is culturally their territory. (In the
symbolic realm, a blind woman does not have the same semantic weight nor
does she generate the same fear: a woman cannot lose what she has never
owned.)5 The classical imagination produced two masculine embodiments
of power centered on that organ, two emblematic characters simultaneously
opposite and complementary. The failure of power, the mutilated eye of
the seeing king (Oedipus) who, after solving an intellectual riddle blinded
himself to the reality before his very eyes (his crime consisted of not perceiv-
ing the familial hierarchy clearly: killing his father, committing incest with
his mother). Oedipus is not capable of sustaining the legitimacy of power
that has been conferred on him nor of confirming his visual knowledge,
that is, that he sees and therefore he knows (insight, Derrida notes, implies
comprehension). He is a fallen, disgraced, and distracted king who punishes
his lack of vision (his not knowing, his not having the power he thought
he had) by making it literal. He thus tears out his eyes to make his earlier
blindness public but also to show that the truth had finally been revealed
to him. In this ancient work, power goes in the end to the blind visionary,
Tiresias, who supplements the lack of eyesight with a superior ability that
allows him to know things in advance. His blindness is a sign of divine
omniscience, the embodiment of a total power and an absolute knowledge
that can do without the organ of sight. A superhuman ability.

blind love

A woman tears out her eyes for love in a story by Clemente Palma titled “Los
ojos de Lina” (Lina’s Eyes). (A Peruvian writer commented on it, noticing
the shared name.) Palma, I thought upon rereading the story a decade later,
didn’t repeat the Oedipus myth, but rather, perhaps, St. Lucy’s, who before
becoming a saint served her eyes on a tray to her betrothed. That terrifying
scene provided me with another clue as I moved ahead with the writing. (I
copied two of Palma’s lines for a potential epigraph, which eventually made
it into the novel.) I also wrote down that a woman who makes a gift of
her eyes before the wedding—to spare her betrothed the anxiety that her
diabolical gaze produced in him—carries out the social imperative of sur-
render. A macabre fulfillment of the marriage vow in which she renounces
her subversive sexuality (the diabolical gaze) and voluntarily complies with
the expectation of the married women’s submission (the command, expres-
 Blind Spot 43

sion of a hegemonic power, functions without needing an expressed order).

The loss of sight completes the idea that feminine love is (and must be)
blind. Turning the metaphor into reality made visible the violence of that
renunciation.

upside down promises

The rhetoric of love governs the evolution of Sangre en el ojo. It is, never-
theless, a mixed up rhetoric: the proof is demanded of him, not her; she
asks him for unconditional support. What would you be willing to do for
love. What would you sacrifice for me. Are you able to take my place. Do
you dare to become my eyes. Will you lend them to me. Make them mine.
Be part of this distorting mirror. Would you dare to be my equal. Lucina
doesn’t put it that way, I don’t know if she even thinks of it in these words.
But these are the questions that are turning over and over in the novel.
These questions and this certainty: that every love relationship is also an
asymetrical one that tries to even itself out in the other’s body.

hell

Again, Cioran: “[T]he only equality which matters to us, also the only one
of which we are capable, is an equality in hell” (130).

dependence

More notes about dependence. 1. An unworkable model for living together

long term. 2. Production of complicated mechanisms for accepting and
rejecting dependence. 3. Abuse of power, usually but not uniquely mascu-
line. Power relations can be reversed. 4. Subordination as a consequence
of the need for the other. 5. Insubordination as a first step to achieving
autonomy. 6. Warning: dependence engenders its own monsters.

never stop

“La escritura corre—dice Botho Strauss—ya no hay escapatoria” (25). (Writ-

ing starts now—says Botho Strauss—there is no escape.)
44 Lina Meruane

the mind’s eye

Maybe I already said this. That I was obliged to improvise the world, which
has disappeared for Lina, or Lucina. My memory of blindness was so opaque
that light couldn’t shine through it. There were gray or blurry moments
(not the blues, greens, and washed-out yellows that Borges describes). The
novel wasn’t going to be anything but literally black, dark like my blindness.
It would devote itself, then, to a synergistic exploration of my remaining
senses. It would be, above all, an oral novel (following the message that I had
left for myself years before in yet another note). In effect: I found Lucina’s
voice and I worked on my four senses, but the account was run through,
even dominated, by images that infiltrated the plot and refused to abandon
it. I understood then that in the work of constructing the past, memory
lent an unexpected aid. It filled the gaps of blindness with exact details
of scenes previously or later viewed, or vividly imagined. The memory of
the newly blind woman continued to belong to the visual realm, it was an
imaginative memory. The things her eyes didn’t see, the mind’s eye captured
(“the mind’s eye” means the ability to visualize, remember or imagine in
images). I understood that you don’t see with the eye, but rather through
it, with the brain, from memory. Even in the dark, reality is stored as an
image. And from that mental image, the whole story is told. The one who
sits down in front of the blank page re-creates scenes without seeing them,
or foretells them in total uncertainty. One writes, one has always written,
in a state of stunning blindness.

fresh eye

In blindness, then, arises the possibility of fiction: a hazy and unlikely

zone. Reality’s facts become fiction’s facts. You don’t know when the reality
principle fails, when we start to be witnesses of a fictitious memory. When
the limit experiences that the novel explores and exploits demand a fresh
eye from us.

what is irretrievable

“. . . y cuando nada de nada, absolutamente nada de atroz ni de irreparable

te ocurre, es que estás muerto” Carlos Droguett (6). (. . . and when not a
single thing, absolutely nothing terrible or irreparable happens to you, it
means you’re dead.)
 Blind Spot 45

Notes

1. In this Calasso agrees with Gian-Paolo Biasin, who affirms that illness
always “triggers a personal poetics, a unique vision of the world.”
2. The novel is also part of this system of production. Looking to interrogate
that system of market production, in search of a certain internal coherence with
what this novel is confronting, I included poems written by the protagonist in her
(De)Composition Notebook (poetry as alien to the commercial concept of writing);
in addition I wrote a chaotic and possibly absurd (in the existential sense) ending,
which falls outside of the register of the three earlier parts.
3. In his genealogy of blind ancestors Derrida includes Homer, Milton,
Joyce, and Nietzsche.
4. I register the strength of the terror toward blindness in an episode, surpris-
ing to me, that occurred outside of the fiction but in a literary setting. After receiving
a positive reading of Sangre en el ojo, one international editor decided not to publish
it (and there was a certain vehemence to that rejection). The reason: a widespread
rumor that the translator of José Saramago’s novel Blindness had lost his sight after
finishing it. (Discretion prevents me from citing the source or naming those involved.)
5. It’s not that there haven’t been blind women, Derrida explains, it’s just
that they are few and little known. Saint Lucy is one, and there are two versions
of her story: one says that her suitors blinded her but she continued seeing (like
Tiresias), the other is that she tore out her eyes (like Oedipus?) in order to present
them to her betrothed on a tray. Be that as it may, she is the martyr of the blind and
the patron saint of opticians. Another saint, Odilia, was born blind and was threat-
ened by her father with death, but God restored her sight when she was baptized.

Works Cited

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Tusquets, 1999.
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tin: U of Texas P, 1975.
Borges, Jorge Luis. “Blindness.” Everything and Nothing. Translated by Donald A.
Yates et al. New York: New Directions Books, 1999, 94–108.
Cioran, E.M. “On Sickness.” The Fall into Time. Translated by Richard Howard.
Chicago: Quadrangle Books, 1970, 125–139.
Derrida, Jacques. Memoirs of the Blind. The Self-Portrait and Other Ruins. Translated
by Pascale-Anne Brault and Michael Naas. Illinois: U of Chicago P, 1993.
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Ferré, Rosario. “La muñeca menor.” Papeles de Pandora. New York: Vintage, 2000,
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Gligo, Ágata. Diario de una pasajera. Mexico City: Alfaguara, 1997.

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la palabra. Mexico City: Ediciones Sin Nombre. 2009.
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Luna, Mayra. “Me miran.” Lo peor de ambos mundos: relatos anfibios. Mexico City:
CONACULTA, 2006. 62–69.
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———. Sangre en el ojo. Santiago, Chile: Mondadori, 2012.
———. Seeing Red. Translated by Megan McDowell. Dallas: Deep Vellum, 2016.
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 Chapter 2

“La cara que me mira”

Demythologizing Blindness in
Borges’s Disability Life Writing

Kevin Goldstein

Disquiet accompanied the birth of Jorge Luis Borges in August of 1899.

After searching the eyes of his newborn son for a sign of the vision problems
that had affected five generations of his family, a relieved Guillermo Borges
declared to his wife: “está salvado, tiene ojos claros, heredó tus ojos” (Bioy
Casares 114). (He’s saved, he has light-colored eyes, he inherited your eyes
[my translation].) This diagnosis would prove mistaken.
The young Borges indeed displayed signs of the progressive vision loss,
which would persist throughout his life. At the age of eight, his mother
asked him to read the label on a container of Crosse & Blackwell sweets,
to which the child responded: “no dice nada. Es un papel blanco” (Bioy
Casares 114). (it doesn’t say anything. It’s blank. [my translation].) An oph-
thalmologist, one Molard, diagnosed him with incipient cataracts. Later, he
would be diagnosed with pathological myopia. Evidence suggests that, even
as early as the 1920s, the author periodically struggled to read the page
before him. In 1927, he underwent the first of eight cataract operations
that would span the next thirty years.
Finally, in late 1955, while vacationing in Mar del Plata, Borges expe-
rienced a retinal detachment, which resulted in the loss of what he called
his “reader’s and writer’s sight” (Weinberger 475). Of necessity, the author
returned to poetry, a form he had largely abandoned in favor of prose
a quarter-century prior; though now, instead of writing free verse poems
exclusively, he experimented with sonnets and other rhymed verse, which

47
48 Kevin Goldstein

he could revise mentally before dictating them to an amanuensis. Alluding

to the incident in a seminal 1977 lecture in Buenos Aires, Borges down-
plays the significance of 1955 in his visual life: “Para los propósitos de esta
conferencia debo buscar un momento patético. Digamos, aquel en que supe
que ya había perdido mi vista, mi vista de lector y de escritor. Por qué no
fijar la fecha, tan digna de recordación, de 1955. No me refiero a las épicas
lluvias de septiembre; me refiero a una circunstancia personal” (EC II 41).1
(For the purposes of this lecture I must look for a pathetic moment. Let’s
say that moment in which I knew that I’d lost my sight, my reader’s and
writer’s sight. Why not settle on the date, so worthy of remembrance, of
1955. I’m not referring to the epic September rains, but to a personal situ-
ation [my translation].) Careful to distinguish between this very personal
event and the concurrent Revolución Libertadora,2 he invokes that conflict
in part to throw the insignificance of his blindness into sharp relief: “My
case is not especially dramatic . . . that slow nightfall, that slow loss of sight,
began when I began to see. It has continued since 1899 without dramatic
moments, a slow nightfall that has lasted more than three quarters of a
century” (Weinberger 475).
With studied reluctance, Borges grants 1955 as “un momento paté-
tico” in order to tell his audience a coherent story, yet he adamantly refuses
to assume the role of tragic hero, offering the audience little pathos and no
awe. Blindness represents yet another mode of being in the world: “Blind-
ness has not been for me a total misfortune; it should not be seen in a
pathetic way. It should be seen as a way of life: one of the styles of liv-
ing” (Weinberger 478). He later avers: “[Blindness] is one more instrument
among the many—all of them strange—that fate or chance provide” (Wein-
berger 483). Blindness is not a gift per se, but simply an instrument among
many that destiny or chance offer the poet, and indeed, everyone. This
decisive statement belies the complex, ambivalent treatment of blindness in
Borges’s late work, which alternates between the vindication of the figure
of the blind seer—that is, blindness as a precondition for gnosis—and an
interest in the banality of the blind body. This essay probes that ambivalence.
Time and again, the writer returns to the reality of his frail, limited body,
thus subverting the trope of triumphal inner vision and, in turn, creating a
space for bitterness, vexation, and tedium in his performance of blindness.
Psyche must contend with soma.
It is worth considering Borges’s self-representation in light of the social
model of disability, which distinguishes between impairment (the physical
condition) and disability (the social consequences of that impairment).3
According to this model, disability is caused by the choices a society makes
in organizing itself. Progress means removing the barriers in society that
 “La cara que me mira” 49

continually produce disability. This model critiques our notions of norma-

tivity and creates a space in which we might recognize blindness not as a
problem in need of a solution but as a mode of being and, indeed, a vibrant
culture. By not conceiving of blindness purely as deficit, but as a mode of
being in the world, Borges forces us to consider the value of disability as
difference. Blindness has things to teach us.
Endeavoring to articulate the qualia associated with this “modesta
ceguera personal,” he proclaims a world of vague, luminous shapes; blue,
green, gray, and yellow, all volatile colors that have the power to elicit rich,
complex memories. Borges’s phenomenology of blindness, so rich in color,
runs counter to common knowledge: “People generally imagine the blind as
enclosed in a black world. There is, for example, Shakespeares’s line: ‘looking
on darkness, which the blind do see.’ If we understand ‘darkness’ as ‘black-
ness,’ then Shakespeare is wrong” (Weinberger 474). With a simple account
of blind color perception, Borges puts the lie to the poetic convention that
equates blindness and darkness, undercutting thousands of years of Western
literature, yet as the reader will find below, he exhibits no compunctions
about employing it frequently in his own work. Regardless of his personal
experience, he is immersed in the rhetoric of blindness. As Rod Michalko
writes: “[M]any of us live disabilities. Our lives are influenced by the ways
our culture represents disability. We are living examples of those represen-
tations” (Difference 13). This dissonance between personal experience and
poetic representation in Borges’s aesthetic—in short, its nonmimetic char-
acter—parallels the divide disabled men and women experience between
lived experience and social interpellation. Stephen Kuusisto echoes Borges
when he writes: “I am driven by the vagaries of poetry and the imagery
in my prose is entirely unreliable though it feels clear for all that. I do
not write about what I see, I write about what I do not see with words
that feel good to the ear. When I write about the morning skin of ice on
a birch tree I’m saying it because it feels right, not because I watched it”
(“Digressions” 198–199).
This complicated relationship between reality and art, or truth and
language, destabilizes the category of life writing as it concerns Borges. The
Argentine believed that words constitute symbols for shared experiences, but
all experience is idiosyncratic. To a great extent, we experience the world
through language, but language cannot accurately represent that experience.
This is the paradox that animates all of Borges’s work. With this in mind,
I extend the category of life writing to include not merely autobiographical
lectures, essays, and interviews, but fiction and poetry as well.4 Essentially,
the Borges who inhabits the poems is no more or less a fiction than the
man answering a reporter’s questions with mischievous inventions.
50 Kevin Goldstein

One can trace a relation, if a somewhat perverse one, between Borges’s

playful, postmodern interest in identity and the memoir boom of the past
half-century. Commenting on this phenomenon, G. Thomas Couser writes:
“the contemporary moment is particularly amenable not only to life writing
but also to disability life writing. Disability has been a staple of cultural
production for centuries, indeed millennia, but only in the recent past has
it generated such a large body of self-representation in the form of personal
testimony” (230). Thus the content of Borges’s late poetry often inclines
toward the personal, particularly the subject of life with low vision, if indeed
transmuted by poetic convention.
A number of Borges’s works poeticize the fraught moment in which
the nearly blind poetic subject encounters a mirror. Able to discern little
save the ashen gray and gold of his hair, his image becomes alien, incom-
prehensible. Perpetuating the ocularcentrism that is his cultural inheritance,
Borges locates identity and self-understanding in a body both present and
elusive: “Soy la carne y la cara que no veo” (OC III 226). (I am the flesh and
the face that I don’t see [my translation].) The face, reflected but obscured,
constitutes a device for probing blindness in relation to the self. Within the
always unreachable, unseen, or vaguely luminous face, the poet imagines a
center, an archetype, a source of gnosis. Yet the resolution the face offers
proves elusive; it is a continually deferred object, or better, something that
never quite becomes an object. Borges highlights this process both positively
and negatively, envisioning imminent self-discovery variously with exultant
optimism, resigned skepticism, and horror. In charting the face as device,
we can begin to identify the contours of Borges’s disability life writing.
Equally important is the social impulse in Borges’s treatment of blind-
ness. As the reader will note below, much of Borges’s late work reifies the
cultural script of the blind subject in isolation, confronting only his half-
seen visage in the mirror; nevertheless, other pieces seek affiliation and
identification with various blind figures. In order to constitute himself as a
blind man and as a blind poet, Borges invokes both his paternal line and
what Derrida calls a genealogy of blind ancestors (32), Homer, Milton, and
Joyce, while simultaneously registering his failure to live up to these heroic
forebears, these strong poets. This has important implications for disability
studies. Margaret Torrell calls for “an examination of life-writing texts which
feature stories of disabled people and groups, thereby challenging notions
about the singular, isolated voice often associated with autobiography” (323).
As Paul Celan asserts in the Meridian speech: “The poem intends another,
needs this other, needs an opposite. It goes toward it, bespeaks it . . . the
poem becomes conversation—often desperate conversation” (49–50). In key
moments, Borges’s work engages in such a conversation.
 “La cara que me mira” 51

The titular poem from Borges’s 1969 volume, Elogio de la sombra (“In
Praise of Darkness”), frames late-onset blindness in mythical terms, as the
triumph of the mind over an aging body:

La vejez (tal es el nombre que los otros le dan)

puede ser el tiempo de nuestra dicha.
El animal ha muerto o casi ha muerto.
Quedan el hombre y su alma. (1–4)
Old age (the name that others give it)
can be the time of our greatest bliss.
The animal has died or almost died.
The man and his spirit remain. (Merwin 299)

The poetic subject articulates a world of dissipating images: “Vivo entre

formas luminosas y vagas / que no son aún la tiniebla . . . mis amigos no
tienen cara, / las mujeres son lo que fueron hace ya tantos años . . . no hay
letras en las páginas de los libros.” (“I live among vague, luminous shapes/
that are not darkness yet. . . . my friends have no faces/ women are what
they were so many years ago . . . there are no letters on the pages of books”;
5–6, 20–21, 24; Merwin 299.) Rather than frightening him, he finds it
“una dulzura, un regreso” (“a sweetness, a return”; 25; Merwin 299). Unlike
Democritus, who tore out his eyes in order to think, he declares: “el tiempo
ha sido mi Demócrito” (“time has been my Democritus”; 16; Merwin 299).
In a 1985 interview, Borges muses: “In a certain way there is purification in
blindness. It purifies one of visual circumstances” (Burgin 243). “Elogio de
la sombra” perhaps best illustrates this sentiment: visible forms, indeed, flesh
itself, give way to a few precious memories, a handful of books the poetic
subject keeps “leyendo en la memoria, leyendo y transformando” (“reading
in my memory, / reading and transforming”; 28–29; Merwin 299). Blind-
ness promises the substitution of imminent gnosis, or pure logos, for the
visible world. The poem ends with the promise of anagnorisis; now able to
forget the visual world, the poetic subject arrives at his center: “a mi álgebra
y mi clave / a mi espejo. / Pronto sabré quién soy.” (“my algebra and my
key, / my mirror. / Soon I will know who I am”; 43–46; Merwin 301.)
This mirror has the potential to spark a moment of self-recognition, a secret
center where Borges may encounter not a sensual but an ideal reflection.
In his seminal lecture on blindness, Borges recites a stanza of Fray
Luis de León: “I want to live with myself/ I want to enjoy the good that I
owe heaven/ alone, without witnesses” (Weinberger 482). Interpreting the
lines in light of his condition, he concludes: “if we accept that in the good
of heaven there can also be darkness, then who lives more with themselves?
52 Kevin Goldstein

Who can explore themselves more? Who can know more of themselves?
According to the Socratic phrase, who can know himself more than the
blind man?” (Weinberger 482). Blindness entails introspection: “El tiempo
minucioso, que en la memoria es breve, / me fue hurtando las formas visibles
de este mundo.” (“frittering time, so brief in memory, / kept taking from
me the visible forms of this world”; 17–18; Reid 311). Given this sustained
period of loss, the poet accepts blindness as a gift, “un don”: it is his duty
as a poet to conceive of blindness as an instrument of his art. One recalls
the stanza from “Arte poética” (“Ars Poetica”):

A veces en las tardes una cara

Nos mira desde el fondo de un espejo
El arte debe ser como ese espejo
Que nos revela nuestra propia cara. (17–20)
At times in the evenings a face
Looks at us out of the depths of a mirror;
Art should be like that mirror
Which reveals to us our own face. (Merwin 137)

By transforming a disappearing, disintegrating world into art, Borges imag-

ines he can arrest this process. Mimetic art offers the promise of chaos
framed, stabilized. A dissolving face, he hopes, will suddenly appear intact,
an image in his poem. And yet, and yet, the body continually puts meta-
phorical blindness in check.
Borges often registers a bittersweet melancholy and a resistance to
blindness as vision. The metaphor of inner vision breaks down, blindness
becomes nothing more than the unseen face in the unseen mirror. “Un
sábado” displays a remarkably quotidian, unguarded depiction of visual
impairment. It locates the blind poetic subject “en una casa hueca” (“in a
hollow house”; 1; McHenry 409). He wanders the halls, touches the walls,
the smooth glass of the interior doors, the bindings of the books he can-
not read, the family silver, the spigots, moldings, coins, and a key. With-
out intending to, he lies upon his bed, sensing himself a piece in a game
conducted by an enigmatic god. He recites “fragmentos de los clásicos y
ensaya / Variaciones de verbos y epítetos / Y bien o mal escribe este poema.”
(“some fragments from the classics and rehearses / variations of verbs and
epithets / and, good or bad, at last he writes this poem”; 19–21; McHenry
409.) Published in the 1977 volume Historia de la noche the poem conveys
the sense of a routine both solitary and painfully tedious. Here, the writing
of poetry materializes from the recitation of remembered fragments, and
for better or worse, their reconfiguration. The house itself is empty, hol-
 “La cara que me mira” 53

low, never perceived in one piece. One recalls Borges’s identification with
Milton’s line, “in this dark world and wide” (EC II 421). The poet renders
the serial perception of the apartment on Maipú street formally through a
succession of conjunctions, “y . . . y . . . y,” while we follow the poetic sub-
ject’s course, defined almost exclusively by haptic perception. Solitude and
introspection do not bring anagnorisis; Borges composes a poem, uncertain
of its literary merit, nor even of his purpose in doing so.
In another sonnet from La rosa profunda, titled “Un ciego” (“A Blind
Man”), Borges expresses a sentiment wholly counter to the triumph of inner
vision found in “Elogio de la sombra”: “No sé cuál es la cara que me mira
/ cuando miro la cara del espejo.” (“I do not know what face is looking
back / whenever I look at the face in the mirror”; 1–2; Reid 357.) His
hands explore the unseen face, and a flash of light reveals hair of ash, or
perhaps gold. He invokes Milton:

Repito que he perdido solamente

la vana superficie de las cosas.
El consuelo es de Milton y es valiente,
Pero pienso en las letras y en las rosas.
Pienso que si pudiera ver mi cara
sabría quién soy en esta tarde rara. (9–14)
I say again that I have lost no more
than the inconsequential skin of things.
These wise words come from Milton, and are noble,
but then I think of letters and of roses.
I think, too, that if I could see my features,
I would know who I am, this precious afternoon. (Reid 357)

While Milton’s words—echoing Borges’s own blind father—offer the poetic

subject a measure of solace, they do not entirely ring true. By 1975, Borges
had been unable to read from the printed page, or write, except by dictation,
for roughly twenty years. He dictated “Un ciego” at roughly the same time
as he underwent an operation that briefly restored part of his vision, only
reawakening a sense of loss. Able to discern the ashen gray and gold—two
of the few colors left to him—of his hair, the poet’s mirror image becomes
even more mysterious. Unlike the poet of “Elogio de la sombra,” glorying in
the loss of sensual vision and the impending encounter with his archetypal
visage, here the poet slowly caresses his face, searching its contours in vain
for self-understanding. “Soy la carne y la cara que no veo” (OC III 226).
(I am the flesh and the face that I don’t see; 42; [my translation].) For a
moment, the compensation afforded by inner vision does not suffice; the
54 Kevin Goldstein

consolation offered by Milton’s words are ineffective. Borges longs for forms
visible, not ideal. Self-understanding is the face in the mirror.
The Argentine sums up the 1975 surgery with a humor both char-
acteristic and revealing: “A los setenta y seis años recuperé parte de mi
vista y volví a contemplar el rostro de una hermosa amiga de mi juventud.
Comprendí que eran preferibles las tinieblas” (Mejia and Molachino 95).
(At seventy-six I partly regained my sight and once again saw the face of a
beautiful female friend from my youth. I realized that blindness was prefer-
able [my translation].) Better to depend on a receding visual memory, he
decides, than to witness the past so transformed by the aging process. The
face of the old friend becomes the site of a cognitive dissonance between
what is seen, if minimally, and what is remembered, no doubt minimally
as well. “Los días y las noches limaron los perfiles / de las letras humanas
y los rostros amados” (“Both days and nights wore away the profiles / of
human letters and of well-loved faces”) writes Borges in “El ciego” (19–20;
Reid 311). The poem ends with lines equally anguished and candid: “El
espejo que miro / es una cosa gris . . . Ahora sólo perduran las formas
amarillas / y sólo puedo ver para ver pesadillas.” (“The mirror I look into
is gray . . . only shades of yellow stay with me / and I can see only to look
on nightmares”; 24–28; Reid 311.) “El ciego” radically critiques the notion
of inner vision by striving to impress upon the reader not the condition of
total blindness but of low vision. With progressive vision loss, faces ossify,
fade, and finally disappear. Borges inhabits a cognitive terrain in which the
face has not totally vanished. As a consequence, the poet’s reflected face
dissolves into an amorphous gray. Vague, luminous shapes rest just out of
reach. Rather than substitute inner for sensual vision, Borges articulates
sight slowly abandoned by the phenomenal world.
In these poems, impairment, not disability, is the subject. In Flor-
ence Yudin’s words: “In his poignant expression of such a terminal mode,
Borges voices an unremitting dialectics of disease” (104). Unlike the mirror
of “Elogio de la sombra,” this mirror offers little save nightmares. Indeed,
throughout his life, Borges claimed a fear of mirrors and masks. In a 1985
interview with Amelia Barili, a year before his death, the writer describes
a recurrent nightmare: “I dream of a mirror. I see myself with a mask, or
I see in the mirror somebody who is me but whom I do not recognize as
myself ” (Burgin 240). “El espejo” (“The Mirror”), published in the 1977
volume La historia de la noche, poeticizes this nightmare:

Yo temo ahora que el espejo encierre

El verdadero rostro de mi alma
Lastimada de sombras y de culpas
 “La cara que me mira” 55

El que Dios ve y acaso ven los hombres. (11–14)

Now I fear the mirror may disclose
the true face of my soul,
bruised by shadows and guilt,
the face that God sees, that men perhaps see too. (Rogers 407)

As Cicero writes in De Oratore, animi est enim omnis actio et imago

animi vultus (All action is of the mind and the mirror of the mind is the
face). A Spanish proverb echoes the orator: “la cara es el espejo del alma”
(the face is the mirror of the soul). Borges absorbs this cliché and takes
it further, for if a man cannot see himself, how can he know himself? He
may be, or at least feel, transparent to others, but remains mysterious to
himself. Laraway places “El espejo” directly in opposition to “Elogio de
la sombra”: “As “Elogio de la sombra” makes the mirror a key to Borges’s
identity, “El espejo” hints that the key itself is locked within the mirror,
forever inaccessible to the poet in his blindness” (Laraway 312). Borges fears
that the mask conceals his true face, bruised and guilt-marked, visible to
God and man but not to himself. Borges fears a visual encounter with his
essential but all too physical self, doubled, fixed, actualized in the mirror.
Nevertheless, this face remains on the plane of the virtual; it instills terror
not because of what it is but what it could be.
The inaccessibility of the reflected body finds expression in the mem-
oirs of other individuals who have experienced late-onset blindness. In his
memoir Touching the Rock: An Experience of Blindness, John Hull describes
the gradual disappearance of the face. “To what extent,” he asks, “is the
loss of the image of the face connected with the loss of the image of the
self? Is this one of the reasons why I often feel I am a mere spirit, a ghost,
a memory? Other people have become disembodied voices, speaking out of
nowhere, going into nowhere. Am I not like this too, now that I have lost
my body?” (19). Another memoirist, Robert Hine, asks a similar question:
“Think of how much we esteem or deride ourselves because of the way we
perceive our own features. When no reflection reveals that face, our very
existence is threatened” (50).
Like all of Borges’s motifs, the face is a site of paradox, at once hor-
rific, redemptive, and out of reach, both a source of anxiety and consolation.
Borges’s 1960 volume, El hacedor, a volume that contains pieces dating as far
back as the early 1930s, as well as texts composed after 1955, registers the
face as a stabilizing force. Its epilogue, frequently cited as a justification for
any and all variety of biographical readings of the author’s work, reads: “A
man sets himself the task of representing the world . . . [s]hortly before he
dies he discovers that this patient labyrinth of lines is a drawing of his own
56 Kevin Goldstein

face” (Coleman 143). In a 1971 interview at New York University, Borges’s

translator Norman Thomas di Giovanni asked the author if he had found
his own face in his writings. Borges responded, as was his wont, playfully:
“That’s possibly the quotation, but I wonder whether my own face is a
tomb? At least I hope it isn’t” (Burgin 129).
One recalls the aforecited couplet from “Arte poética”: “el arte debe
ser como ese espejo / Que nos revela nuestra propia cara.” (“Art should be
like that mirror / Which reveals to us our own face”; 19–20; Merwin 137.)
The poet speaks of art in general, not his own work, and further, that he
recognizes himself less in Borges’s own books than in those of others or “en
el laborioso rasgueo de una guitarra” (“Borges y yo” OC II 221). (“in the
rich strumming of a guitar”; Coleman 93.) In his response to di Giovanni,
Borges resists the charge of solipsism, or of being a hermetic poet writing
of himself for himself. Nonetheless, the poet suggests that we can’t escape
ourselves, our memory: “what the reader finds at the end is our face, our
features, though we are quite unaware of it” (Burgin 129). Borges cannot
see himself in his works, but that does not mean he does not await self-
recognition in the future, or in the works of others.
Many critics have puzzled over the epilogue of El hacedor. How can
such a passage come from the mind of a writer who continually undermines
the notion of authorship, who makes fiction from the very impossibility
of mimesis? Funes, whose memory perfectly repeats the universe, dies of
a pulmonary congestion; the Aleph is indescribable; the book of sand, the
book that is the universe, is finally hidden away in the basement of the
Biblioteca Nacional; the map of the world, which corresponds to every point
in the world is left to rot in the desert. These are but a few examples of
Borges’s resistance to representation. In light of this, how can the unseen
face signify anything, let alone the universe? The notion of a representation
of the world, which is simultaneously coterminous with its progenitor’s face,
is sustainable precisely because it is never actualized. It remains possible only
because it is always merely possible. This imminent revelation, continually
deferred, is synonymous with poetic creation. Self-knowledge is not a pre-
requisite for creativity. In fact, this continually deferred revelation and the
disquiet it produces constitute the aesthetic act; the mirror’s opacity signals
the beginning of art. Borges does not present blindness as unequivocally
positive, but he does posit it as a source of artistic creation. He codes the
embodied experience of blindness as a series of gifts: a new sense of time,
a greater dependence on memory, as well as a new kind of social life. These
gifts do not impede the artistic process—they are the artistic process.
This last gift, a new social life, entails a community of authors bound
by the experience of blindness, among them Homer, Milton, and Borges’s
 “La cara que me mira” 57

predecessor at the Biblioteca Nacional, Paul Groussac. This literary idealism

conflates Borges and Homer in “El hacedor” as well as “El inmortal.” For
Borges, the prime, mythic blind poet embraces all other poets, or better,
all poets are blind Homer. This concept receives elegant treatment in “El
poema de los dones” (“The Poem of the Gifts”) from El hacedor. The poem
concerns the simultaneity of two events: the loss of Borges’s “vista de lector”
and his becoming director of the Biblioteca Nacional. Marveling at the coin-
cidence that Paul Groussac, too, was blind, he wanders the library’s galleries,
feeling the holy dread that he is in fact Groussac. This prompts the poetic
subject to pose these questions which echo “Borges y yo”: “¿Cuál de los
dos escribe este poema / de un yo plural y de una sola sombra?” (“Which
of the two is setting down this poem— / A single sightless self, a plural
I?”; 33–34; Reid 97.) Blindness becomes the prerequisite for identification
with that other blind writer:

Groussac o Borges, miro este querido

mundo que se deforma y que se apaga
en una pálida ceniza vaga
que se parece al sueño y al olvido. (37–40)
Groussac or Borges, now I look upon
this dear world losing shape, fading away
into a pale uncertain ashy-gray
that feels like sleep, or else oblivion. (Reid 97)

Here, the first-person singular “miro” suggests mutual perception, or the

eternal return. As a consequence, it transforms the isolated figure of the
blind man into the member of a community. Certainly, Borges takes great
relish in discovering yet another blind former director, José Mármol.
More so even than Homer, Milton functions in Borges’s late work
as an archetypal blind writer. By way of an ambiguous referent, “On His
Blindness” blurs the line between Milton and Borges. “Una rosa y Milton”
(“A Rose and Milton”) imagines the last rose Milton held before his face,
but could not see. As in a later poem, “El don,” the invisible, silent rose,
somehow spiritual, immaterial, secures immortality in the poem. On the
subject of Samson Agonistes, one senses that Borges takes Milton’s identifica-
tion with Samson as a model: “Milton thought on the similarity of destinies,
since he, like Samson, had been a strong man who was ultimately defeated”
(Weinberger 480). A bond forms within and without the text.
Nonetheless, Borges also reifies the overcoming disability narrative
when he describes Milton’s life: “Here we have an example—much more
important than my own—of a man who overcomes blindness and does his
58 Kevin Goldstein

work . . . all of this was executed while he was blind; all of it had to be
dictated to casual visitors” (Weinberger 480). Similarly, “Groussac overcame
his blindness and left some of the best pages in prose that have been writ-
ten in our country” (Weinberger 481). Joyce composes Finnegan’s Wake in
spite of his bouts with vision loss. Borges proffers these literary forebears as
exemplary men who have written great works not because of, but in spite of,
their blindness. His characteristically self-effacing aside “much more impor-
tant than my own,” merely reinforces their exceptionality as blind poets
and diminishes his agency. Nevertheless, like each of these forebears, he in
fact composes great works not in spite of his blindness, but because of it.
After receiving the Formentor Prize in 1961, Borges began traveling
the world in earnest, attending conferences, giving interviews, delivering
lectures, and receiving countless awards and honorary degrees. These late,
sentimental journeys were often translated into poetry. Whereas Borges’s first
three books—all published in his twenties—focus exclusively on the city of
Buenos Aires, taking their nourishment from it, the poet’s later volumes are
geographically expansive: their poems concern subjects as varying as Norse
eschatology, Shintoism, and the state of Texas. His penultimate volume Atlas
(1984) constitutes a kind of travelogue, with short prose pieces or poems
accompanied by photographs taken by his literary secretary, traveling com-
panion, and eventual second wife, María Kodama. From the early 1970s until
his death, to travel meant to experience the world with Kodama, the late love
of his life. “Hemos recorrido y saboreado muchas regiones, que sugirieron
muchas fotografías y muchos textos” (We have traversed and savored many
regions, which have suggested many photographs and texts; OC III 485; [my
translation]), the poet writes, describing travel as both deeply sensual and
social. The blind man registered no contradiction in the fact that perception
included Kodama’s verbal descriptions of the immediate visual scene.
One poem, “The Cloisters,” about a trip to the famed branch of the
Metropolitan Museum in October of 1980, articulates perception as plu-
ral, distributed. Approaching the unicorn tapestries, one notes the plural
poetic subject: “Vemos en los tapices / La resurrección y la muerte / Del
sentenciado y blanco unicornio” (“We see in the tapestries / the resurrec-
tion and the death / of the doomed white unicorn”; 22–24; Merwin 435).
The other observer, implicitly understood to be Kodama, sees the unicorn
tapestries with and for him. Vision, in this case, is likely synonymous with
verbal description on the part of the other. For the poet, who after 1955
always described dictation as writing, and being read to as reading, the act
of vision becomes vitally blurred with verbal description—a priori resembles
a posteriori knowledge.
Borges’s plural poetic subject highlights a pedagogical facet of blind
writing: by conflating verbal description with vision, he reveals the mediation
 “La cara que me mira” 59

that characterizes all experience. He would have found an ally in Georgina

Kleege, who writes: “The sighted can be so touchingly naive about vision. They
apparently believe that the brain sees out of it” (Sight Unseen 96). Discussing
a piece by painter Katherine Sherwood, Kleege complicates our notions of
aesthetic experience, saying she knows the work through touch and through
conversations with the artist about her process and the ideas that went into
its making. Ultimately, she enters into the debate about the role of vision in
epistemology, asking whether she can really claim to know this painting, to
have firsthand knowledge rather than hearsay. By way of response, she poses
another question: “I could ask the same question about any viewer—to what
extent is understanding of this or any work dependent on knowing the differ-
ent ideas and elements behind it? Why else do art museums publish catalogues
and post biographical and critical wall texts?” (“Brain Work”).
Paradox characterizes all of Borges’s work, including the treatment of
his own “modesta ceguera personal.” He embraces psyche over soma, yet
continually returns to the blind body. He fantasizes about inner vision,
yet depends on ocularcentrism. He conflates his identity with that of Mil-
ton and Homer, yet deems it absurd to place his name beside theirs. He
celebrates blindness and laments it. Though he reaches for the archetypes,
Borges remains bound to particulars. In their seminal work, Narrative Pros-
thesis: Disability and the Dependencies of Discourse, Mitchell and Snyder
describe the disabled body as “a reminder of the ‘real’ physical limits that
‘weigh down’ transcendent ideals of the mind and knowledge-producing
disciplines” (49). Disability’s power rests in the difference it makes with
normativity. The disabled body, overdetermined, heavy with signification,
nevertheless represents “the hard kernel or recalcitrant corporeal matter that
cannot be deconstructed away by the textual operations of even the most
canny narratives or philosophical idealisms” (49). The paradoxical treatment
of blindness in Borges’s work recalls the last lines of “Nueva refutación del
tiempo” (New Refutation of Time). The writer recognizes that time and
identity are illusory, yet cannot escape them. Likewise, inner vision posits
the unimportance of the body, yet man cannot escape it: “The world, unfor-
tunately, is real; I, unfortunately, am Borges” (Weinberger 332).

Notes
1. Throughout the essay, OC refers to the multivolume Obras completas,
published in 1996, EC refers to Obras completas: Edición Crítica, published in 2009,
and TR refers to Textos recobrados, published in 2002.
2. La Revolución Libertadora refers to the September 1955 military coup
d’état, which overthrew the regime of Juan Perón. Borges responded to the coup
with elation.
60 Kevin Goldstein

3. Beginning in the 1980s, academic, author, and disability rights activ-

ist Mike Oliver was a chief developer of the social model of disability. A seminal
work in the field is the volume, Social Work with Disabled People, which Oliver
co-authored with Bob Sapey and Pam Thomas.
4. Ted Lyon writes: “Borges turned the interview into a literary genre, a
game, a personal art form that he often controlled more directly than the inter-
viewer” (Lyon 76).

Works Cited

Bioy Casares, Adolfo, and Daniel Martino, eds. Borges. Buenos Aires: Destino, 2006.
Borges, Jorge Luis. Obras Completas. 4 vols. Buenos Aires: Emecé Editores, 1996.
———. Jorge Luis Borges: Selected Non-Fictions. Edited and translated by Eliot
Weinberger. New York: Penguin Books, 1999.
———. Jorge Luis Borges: Selected Poems. Edited by Alexander Coleman. New York:
Penguin Books, 1999. “Elogio de la sombra.” Translated by W.S. Merwin,
298–301. “Arte poética.” Translated by W.S. Merwin, 136–137. “Everness.”
Translated by Alastair Reid, 226–227. “El ciego.” Translated by Alastair
Reid, 310–311. “Un sábado.” Translated by Eric McHenry, 408–409. “Un
ciego.” Translated by Alastair Reid, 356–357. “El espejo.” Translated by Hoyt
Rogers, 406–407. “El poema de los dones.” Translated by Alastair Reid,
94–97. “The Cloisters.” Translated by W.S. Merwin, 434–435.
———. Textos recobrados. 3 vols. Buenos Aires: Emecé Editores, 2002.
———. Obras completas: edición crítica. Edited by Rolando Costa Picazo and Irma
Zangara. Buenos Aires: Emecé, 2009.
———. Poems of the Night. Edited by Efrain Kristal. New York: Penguin, 2010.
“El don.” Translated by Christopher Mauer. 176–177.
Burgin, Richard, ed. Jorge Luis Borges: Conversations. Jackson: U of Mississippi P,
1998.
Celan, Paul. Collected Prose. Translated by Rosemarie Waldrop. Riverdale-on-Hudson,
NY: Sheep Meadow Press, 1986.
Couser, G. Thomas. “Introduction: Disability and Life Writing.” Journal of Literary
& Cultural Disability Studies 5.3 (2011): 229–242.
Derrida, Jacques. Memoirs of the Blind: The Self-Portrait and Other Ruins. Translated
by Pascale-Anne Brault and Michael Naas. Chicago: U of Chicago P, 1993.
Hine, Robert. Second Sight. Berkeley: U of California P, 1993.
Hull, John. Touching the Rock: An Experience of Blindness. New York: Pantheon
Books, 1990.
Kleege, Georgina. Sight Unseen. New Haven, CT: Yale UP, 1999.
———. “The Subject at Hand: Blind Imaging, Images of Blindness.” Social Research:
An International Quarterly 78.4 (2011): 1243–1262.
———. “Brain Work: A Meditation on the Painting of Katherine Sherwood.”
Golgi’s Door National Academy of Sciences Exhibition Catalogue 2008.
 “La cara que me mira” 61

n.p. January 15, 2013. www.katherinesherwood.com/sherwood/articles/gogli-

door_kleege.html
Kuusisto, Stephen. The Planet of the Blind. New York: Delta, 1998.
———. “Digressions on Poetry, Prose and a Lingonberry Bush.” In Beauty Is a
Verb: The New Poetry of Disability. Edited by Jennifer Bartlett, Sheila Black,
and Michael Northen. El Paso, TX: Cinco Puntos Press, 2011, 198–199.
Laraway, David. “The Blind Spot in the Mirror: Self-Recognition and Personal
Identity in Borges’s Late Poetry.” Revista Canadiense de Estudios Hispánicos
29.2 (2005): 307–325.
Lyon, Ted. “Jorge Luis Borges and the Interview as Literary Genre.” Latin American
Literary Review 22.44 (1994): 74–89.
Magee, Bryan, and Martin Milligan. On Blindness: Letters between Bryan Magee and
Martin Milligan. New York: Oxford UP, 1995.
Mejia, Jorge, and Justo R Molachino, eds. Borges ante el espejo. Mexico City: Edito-
rial Lectorum, 2005.
Michalko, Rod. The Two-in-one: Walking with Smokie, Walking with Blindness. Phila-
delphia: Temple UP, 1999.
———. The Difference that Disability Makes. Philadelphia: Temple UP, 2002.
Mitchell, David, and Sharon Snyder. Narrative Prosthesis: Disability and the Depen-
dencies of Discourse. Ann Arbor: U of Michigan P, 2000.
Oliver, Michael, Bob Sapey, and Pam Thomas. Social Work with Disabled People.
New York: Palgrave Macmillan, 2006.
Torrell, Margaret Rose. “Plural Singularities: The Disability Community in Life-
Writing Texts.” Journal of Literary & Cultural Disability Studies 5.3 (2011):
321–338.
Williamson, Edwin. Borges, a Life. New York: Viking, 2004.
Yudin, Florence. Nightglow: Borges’s Poetics of Blindness. Salamanca: Universidad Pon-
tificia de Salamanca, 1997.
 Chapter 3

Negotiating the Geographies

of Exclusion and Access
Life Writing by Gabriela Brimmer
and Ekiwah Adler-Beléndez

Beth E. Jörgensen

On May 29, 2011 the Mexican National Congress approved the “Ley
General para la Inclusión de las Personas con Discapacidad” (general law
for the inclusion of persons with disabilities), a groundbreaking piece of
legislation that endorses a human rights approach to policies pertaining to
persons with disabilities. It was drafted, however, without the input of any
of the prominent disability rights experts in Mexico (Ríos Espinosa). In April
2011, while the “Ley General” was being debated, the rather luxurious new
Senate building in Mexico City was completed after a lengthy delay and
substantial cost overruns. The new Senate building was not designed to be
accessible for people with physical disabilities. The juxtaposition of these
events and the exclusion of the disability rights community from matters
that directly concern their interests exemplify the enormous gap between
the theory and the practice of disability rights in Mexico that scholars and
activists continually observe and critique. In the realm of culture, deeply
embedded contradictions also exist between the representations of people
with disabilities produced by the able-bodied, neurotypical artist or intel-
lectual, and the self-inscription of people with disabilities.1 This essay treats
writing by two people with cerebral palsy, placing the texts within their
social context: Gaby Brimmer, the collaborative autobiography of the poet
and activist Gabriela Brimmer, and poetry by the bilingual writer Ekiwah

63
64 Beth E. Jörgensen

Adler-Beléndez. These works, which span a period of thirty years bridging

the twentieth to the twenty-first centuries, expose and challenge the limits
faced by people with disabilities in their negotiation of the geographies of
exclusion and access in Mexico, and they convey knowledge that comple-
ments the work being done in contemporary disability studies theory. Gaby
Brimmer and the selected poems by Ekiwah Adler-Beléndez demonstrate
how writing by disabled people constitutes a necessary alternative to tradi-
tional depictions of disability in literature.2
Those who work for disability rights in Mexico, commonly use one
word to describe the experience of people with disabilities in their society:
exclusion. Exclusion from the spaces of education, employment, politics, cul-
ture, and daily activities outside of the home, and the consequent invisibility
of and ignorance about persons with disabilities are the principal factors
that persist in limiting the exercise of their legal rights, their participation in
the life of their community, and their individual development and agency.3
For those with physical conditions that limit their mobility and those with
sensory disabilities, the many barriers that exist in the built environment,
the means of public transportation and the means of communication create
obvious obstacles to inclusion. These barriers can be addressed with existing
technologies, albeit at an initial cost to retrofit buildings, streets, transport,
and communications media for universal access.4 The more difficult obstacles
to mitigate are those imposed by social and cultural values that determine
the complex, largely negative meanings of disability in Mexico, and in par-
ticular the severe stigmatization regarding intellectual and psychosocial dis-
abilities. Karla Calcáneo of Conapred (Consejo Nacional para la Prevención
y Eliminación de la Discriminación), the federal agency responsible for
combatting all forms of discrimination, traces the sources of discriminatory
attitudes in Mexico to a lack of knowledge about the rights of disabled
people, the view of disability as illness or deficiency, the perception that a
person with a disability is a burden on the family and on society, the idea
that providing equal access implies giving special privileges, and the notion
that any assistance given is a form of charity.
A paradigm shift is currently underway in Mexico, and both older and
newer ways of conceptualizing disability coexist in a complex and contradic-
tory panorama. The prevailing view throughout the twentieth century and
still today has been formed by the medical/deficit model, which pathologizes
disability and contributes to the labeling of persons with disabilities as defec-
tive, abnormal, and in need of a cure. The medical model locates disability
in the body of an individual subject and holds him or her responsible for
adapting to society’s norms and expectations through rehabilitation. While
this model has strongly influenced institutional and official discourses and
 Negotiating the Geographies of Exclusion and Access 65

popular culture, the religious, charity, and pity models have also shaped
people’s thinking. The internalization and reproduction of existing para-
digms result in seeing disability as a condition of deficit, and as a divine gift
or punishment or a cause for generosity and sympathy, as well as producing
a generalized tendency to rejection and fear.5 The past thirty years, however,
have witnessed a paradigm-changing challenge to the long history of medi-
calization and stigmatization. This challenge, posed in Mexico primarily by
the disability rights movement, and by families and scholars, is beginning
to effect a transformation in social attitudes and official policies, as seen
in legislation that promotes a human rights model and in the funding of
gradual, still very limited changes in infrastructure.
Federico Fleischmann, co-founder and president of Libre Acceso, A.C.,
dates the start of the disability rights movement in Mexico to February
14, 1992, when a group of persons with disabilities staged a protest in
the chambers of Congress (48). Ernesto Zedillo is commonly identified
as the first president to pay increased attention to the needs and demands
of this sector, and under Vicente Fox (2000–2006) and Felipe Calderón
(2006–2012) significant legislative milestones were reached: the “General
Law for Persons with Disabilities” (2005), the signing of the U.N. Conven-
tion on the Rights of Persons with Disabilities (2007) and the “General
Law of Inclusion of Persons with Disabilities” (2011). This legislation moves
Mexico toward a human rights model that recognizes the full citizenship
and equal rights of persons with disabilities, and sees disability as a form
of human diversity rather than deficiency and otherness. It is universally
acknowledged, however, that these legislative actions have had a very lim-
ited impact, given long delays in formulating the regulations to put their
provisions into effect and a severe lack of resources to enforce compliance
(Gamio Ríos 437–438). Furthermore, while the 1990s and early 2000s were
a critical period for legislation, civil society began to attend to this margin-
alized population long before the government assumed a more active role.
Early organizations such as APAC (founded in 1970 and serving persons
with cerebral palsy) and Confe (1978, focusing on intellectual disabilities)
were created by parents to provide services for their children, and they were
oriented toward education, rehabilitation, and employment in segregated or
“sheltered” facilities.6 A more active struggle that focused on rights rather
than assistance originated with initiatives taken by people with disabilities to
form their own associations. Libre Acceso, A.C. (1989) is a prime example
of an organization created by and not merely for persons with disabilities,
and Fleischmann estimates that by 2006 there were roughly one hundred
and sixty-six NGOs concerned with disability rights in Mexico (47). Today
the government is seen as continuing to lag behind civil society, rather
66 Beth E. Jörgensen

than providing leadership in this important arena for human rights (Rosas
Barrientos).
The complex relationship between literary writing and the promotion
of social movements and human rights has been addressed by disability
studies scholars in the humanities who have paid close attention to the
pervasive representation of illness and disability in art and literature since
ancient times with a view toward understanding their social and cultural
meanings and impacts. Numerous studies of European and U.S. literature
show how characters with disabilities have been employed to fulfill cer-
tain roles in narrative structure and to communicate a variety of messages
about society. David T. Mitchell and Sharon L. Snyder, as referenced in
the “Introduction,” coined the term “narrative prosthesis” to capture the
“discursive dependency upon disability” of much of world literature, which
leans on disability like a crutch to enhance the disruptive power and ana-
lytical insight of narrative (47–48). Mitchell and Snyder go on to point out
that the “reliance on disability in narrative rarely develops into a means of
identifying people with disability as a disenfranchised cultural constituency”
(55), or a means of addressing disability as an experience with social and
political dimensions (48). Michael Bérubé concurs in remarking that liter-
ary representations, while admittedly figural and not literal, contribute to
constructing disability as a cultural category with concrete consequences for
human subjects. “The stereotypes, metaphors and images of disability have
been primary means by which human cultures have constructed disability
in systems of compulsory able-bodiedness. The representation of disability
(in both the aesthetic and the political sense of representation) has also been
the construction of disability—and needs to be reexamined by scholars in
the humanities precisely for its effects on, or its productions of, the actual
bodies of actual persons” (“Afterword” 342). Therefore, “there lurk . . . in
disability studies profound questions of social and cultural justice” (342).
Just as literature can be complicit in the imposition and normalization
of ideologies of exclusion, so, too, can art exercise a subversive challenge to
hegemonic values and attitudes. In this regard, texts produced by people
with disabilities have the potential to push back against canonical repre-
sentations and offer alternative ways of conceiving of bodily and cognitive
difference. Personal narrative, or life writing, occupies a privileged place in
disability studies because it invites the active, shaping participation of those
who live in a situation of disability in the narration of their own stories.
G. Thomas Couser, the foremost North American theorist of disability life
writing, affirms that its value resides in the exercise of the agency of the
person with a disability through narrative acts that shape the representation
of his or her experience and subjectivity. Relegated to a position of margin-
 Negotiating the Geographies of Exclusion and Access 67

alization and preinscription in society at large, the autobiographical subject

takes the initiative in representing him/herself through the act of writing
(“Disability” 605). Couser highlights the function of these texts as a counter-
discourse to the paradigm of deficiency and the common representation
of disabled literary characters as defenseless victims. At the same time, he
warns that not all disability life writing subverts social and cultural norms.
In fact, it can, and often does reinscribe conventional, conservative views
manifested in sentimental portrayals of the disabled, narratives of overcom-
ing impairment, or messages of spiritual rewards achieved through patient
suffering (“Signifying” 110–111). Disability life writing that resists these
trends, however, “can be an especially powerful medium in which disabled
people can demonstrate that they have lives, in defiance of others’ com-
monsense perceptions of them” (605). Tobin Siebers, in his book Disability
Theory, attributes this subversive potential to the analytical power of works
written by persons with disabilities. Siebers posits that while it is difficult
to analyze and critique prevailing ideologies from a subject position that
is located firmly within hegemonic values and privileges, the subject who
occupies a social position of exclusion can perceive and question norms in
which he or she does not fully participate. Exteriority provides an angle of
heightened perception (Siebers, Disability 15, 105). Disability life writing,
such as Gaby Brimmer, may therefore record negotiations of the spaces of
exclusion in an innovative and subversive way.
In the introduction to her book Unruly Bodies: Life Writing by Women
with Disabilities, Susannah Mintz calls our attention to other relevant issues.
Mintz says the following about autobiographical texts: “Their overt intention
is to challenge the troping of disability in able-bodied culture as deviance,
helplessness, insufficiency, and loss, as well as to speak openly about a form
of embodiment often excluded from the conversation in both disability
and feminist discourse. . . . The autobiographers studied in Unruly Bod-
ies . . . train their attention on the family dynamics, medical intrusions,
media representations and structural barriers that conspire to make impair-
ments physically and psychologically disabling” (1). These comments apply
equally well to Gaby Brimmer (1979), which was translated into English in
2009 as Gaby Brimmer: An Autobiography in Three Voices.7 Gabriela Brim-
mer was born in Mexico City in 1947 to Jewish immigrants who had fled
Europe during the Holocaust. Brimmer was profoundly affected at birth by
cerebral palsy caused by Rh factor incompatibility. The story of her life and
how she was able to communicate by manipulating an alphabet board or a
typewriter with the big toe of her left foot is rather well known in Mexico
due to the autobiography and the Luis Mandoki film Gaby: A True Story
(1987), as well as Brimmer’s activism in the disability rights movement.8
68 Beth E. Jörgensen

Two substantive analyses of the book have been published to date:

Claudia Schaefer’s chapter on Gaby Brimmer and Elena Poniatowska’s Queri-
do Diego, te abraza Quiela in her book Textured Lives: Women, Art and Rep-
resentation in Modern Mexico (1992) and Susan Antebi’s chapter “Enabling
Testimonio” in her book Carnal Inscriptions: Spanish American Narratives of
Corporeal Difference and Disability (2009). Schaefer characterizes Gaby Brim-
mer as conservative in form and thematics when compared with La noche
de Tlatelolco, Poniatowska’s oral history of the 1968 student movement.
Antebi’s detailed and subtle analysis of the text and its film version links the
autobiography to Latin American testimonio by comparing and contrasting
it to I, Rigoberta Menchú and placing it within the debate over testimonio
and postmodernism. She acknowledges the conservative dimensions of the
narrative, while also carrying out “a body-centered reading of agency as an
ongoing practice of intercorporeality” (175) that is grounded in disability
theory. My study reads the book through the theories developed by Couser,
Mintz, and Siebers, that see disability life writing as a “powerful medium”
that can defy ableist assumptions and propose theoretical knowledge through
narrative.
The writing of Gaby Brimmer was an original and even a daring act for
the decade of the 1970s in Mexico, long before a disability rights movement
existed there. It is important to acknowledge that Brimmer’s life story was
narrated, edited, and published in a virtual literary and cultural vacuum and
in a context of extreme social exclusion of the disabled. In the prologue writ-
ten by Elena Poniatowska, she describes the process of composing the text
on the basis of interviews and letters, and she also reveals her reservations
about collaborating in the project with Gabriela Brimmer, her mother Sara
(or Sari), and her caregiver Florencia Morales (Nana). In 1977 when the
famed journalist first interviewed Brimmer for an article in Novedades, all of
the messages transmitted by society and high and popular culture conveyed
that persons who were ill or disabled were a terrible burden, and their stories
could have nothing to do with literature. Poniatowska admits that she had
to negotiate among conflicting external pressures and internal obstacles in
order to undertake the project, given that her family and friends and her
own formation as a writer all cast such an assignment in a negative light.
As a consequence, the language employed, which Trudy Balch has scrupu-
lously respected in her English translation, often reflects a way of thinking
that many readers today will not accept. Poniatowska writes, for example,
of Sara Brimmer’s lifelong “torture” that began with her daughter’s birth,
she compares Gaby Brimmer to her “perfectly healthy” brother David, and
she and the text’s protagonists use terms such as “invalids” and “cripples”
to refer to those with motor disabilities, thus betraying deeply internalized
 Negotiating the Geographies of Exclusion and Access 69

attitudes of condescension and pity.9 Nonetheless, in spite of this, Gaby

Brimmer stands as an innovative, positive achievement in Mexican letters
that offers an opening into alternative discourses on disability. The passages
attributed to Brimmer’s own self-expression, in particular, prefigure issues
that disability studies scholars continue to discuss today. As Tobin Siebers
theorizes, the marginalized experience and excluded subject position of the
person with disabilities can prompt a profound critique of the ideology
of ableism and its privileging of individual autonomy and self-sufficiency.
Elena Poniatowska composed Gaby Brimmer as a montage of narra-
tive fragments attributed to Gaby, Sari, and Florencia, which she arranged
in roughly chronological order around the themes of childhood, family
relations, school, support for the 1968 student movement, friendship and
love, and finally Brimmer’s adoption of a daughter, Alma Florencia.10 The
structure offers multiple perspectives on a life lived within a complex web
of relationships, by juxtaposing the three voices without any apparent medi-
ating narration.11 This device highlights the inextricable interconnections
among Gaby, Sari, and Florencia, and it is a verbal reenactment of the con-
stitution of the individual subject and the exercise of agency in relationship
to others and not in a splendid, illusory isolation. The textual web woven
by the testimonies duplicates the system of support and love that sustains
the three women and at the same time sets a trap for them. Gaby is the
one who is most aware of the double meaning of the web as support and
trap, caught as she is quite literally, that is bodily, at its center. The struc-
ture and the thematics of the life story, therefore, foreground the constant
negotiations of human agency carried out from a subject position defined
by uncommon physical limitations.
Disability studies theory reminds us that the human experience of the
world depends on the body and its sensory functions, and subjectivity is
constituted by the materiality of the body with its inherent imperfection and
fragility, as well as by the shaping force of language and cultural discourse.12
Bodily impairment and severe physical limitations such as Brimmer experi-
enced create restricted options for self-determination and development in a
cultural and built environment that demands physical mobility and norma-
tive speech as minimum requirements for full participation. In Mexico in the
1960s and 1970s, living with cerebral palsy meant a universal assumption
of nonentry into the spaces of learning, work, leisure, and pleasure. The
barriers to schools, places of employment and entertainment, and spaces of
privacy were virtually insurmountable. As a result, Gaby’s exercise of her
agency in choosing to study, work, or pursue friendships is inseparable from
her bodily condition and her relationship with her caregiver in ways that
many readers will not assume they themselves experience.
70 Beth E. Jörgensen

The collaborative autobiography narrates a limit-case of how an indi-

vidual is both enabled and constrained by others in a relationship of inter-
dependence, and is not largely in control of her life course. One example
illustrates the interplay of bodies, prosthetic devices and cultural discourse
in determining agency. In order to attend school, Gaby must be accom-
panied by Florencia, who drives the car, pushes the wheelchair, carries the
wheelchair and Gaby up and down stairs, and pronounces aloud the words
that Gaby composes by pointing to her alphabet board. Gaby, Florencia, the
wheelchair, and the alphabet board comprise one functional subject position
that we might call “student,” and Gaby negotiates the multiple obstacles to
her intellectual development through these combined, hybrid methods. This
composite student, enrolled under the single name of Gabriela Brimmer,
then encounters skepticism and dismissal by those who would disable her
according to cultural norms: that is, the expectation that people with cere-
bral palsy who cannot speak clearly are cognitively impaired and therefore
the knowledge that the student produces does not originate from the mind
residing in her disabled body. Gaby strenuously defends herself against the
accusation that Florencia does her intellectual work for her, and she affirms
her cognitive and creative independence at the same time that the narrative
undermines the humanist ideal of the fully autonomous subject. Hers is
a limit-case, but the representation in three voices of a life lived within
exceptional physical limitations not only demonstrates Brimmer’s unique
situation, but also the interdependence and the need for prostheses at the
core of our shared human condition.
Another critical factor in the constitution of human subjectivity is the
experience of seeing others and internalizing how others see us. The other’s
gaze, when it is attentive and affirming, is an act of nonverbal communi-
cation and recognition that supports the positive development of identity
and psychosocial well-being. People with disabilities are often the object
of curious, evasive, prying, and even fearful gazes or acts of staring that
diminish their value and refuse their humanity. Rosemarie Garland-Thom-
son in Staring: How We Look complicates our common understanding of
the phenomenon of the human stare in relation to “unusual bodies” (9) by
focusing equally on the agency of the starer and the staree. She quotes the
late Harriet McBryde Johnson, a disability activist in New York City, who
articulated the dilemma of facing the other’s gaze while inhabiting an anom-
alous body in these few words: “It’s not that I’m ugly. It’s more that most
people don’t know how to look at me” (qtd. by Garland-Thomson 188).
Johnson practiced visual activism in her daily life by taking control of her
visual encounters with others, explaining why her body had an anomalous
 Negotiating the Geographies of Exclusion and Access 71

form, and showing the rare beauty and the capacity for pleasure of a body
that others would not desire for themselves.
Gaby Brimmer does not record this kind of active engagement with
the other’s gaze, and in fact it narrates a tendency to avoidance, but it
does reflect on the dilemma of meeting the other’s gaze from a situation of
disability and the corresponding challenge of learning how to look at the
anomalous other. Sari and Florencia openly criticize the way that people
avoid looking at Gaby, or look at her with morbid curiosity, fear, or disgust,
but very rarely with the desire to see her and recognize her as a human
being who is uncommonly different and yet equal to themselves. At the same
time, the text reveals how difficult it is to embrace bodily difference with an
inclusive gaze. Susan Antebi is right to critique Elena Poniatowska’s appeal
to Gaby’s most “normal,” “healthy” physical feature—her eyes—as a way
to identify with her humanity and see beyond the spasms and the “useless”
arms (191–192). Sari’s mode of seeing her daughter is, like Poniatowska’s,
strongly influenced by the medical model, and she despairs over Gaby’s
condition: “I never resigned myself to seeing her that way . . . I looked for
medicines, doctors, some kind of cure . . . I thought something had to be
done, that my daughter couldn’t stay that way” (31). The reader, cognizant
of Gaby’s struggle for recognition, may be moved to question his or her
own tendency to see only the wheelchair or the spasms when encountering
a person with a visible disability. In contrast, the first words attributed to
Florencia are as follows: “She was a beautiful little girl, her hair pure gold,
such a perfect little face, green eyes, with a nose that turned up at the end.
But her hair, how I remember her hair!” (30). There is a great deal at play
in this admiring description. One likely factor informing Florencia’s per-
ception of physical beauty in the child Gaby is the cultural preference for
fair skin and hair and light-colored eyes that is a sign of Mexican prejudice
against its dark-skinned (read indigenous) population. Also at play in a
positive sense is the acceptance with which Florencia sees and treats Gaby
as she is, in contrast to the mother’s preoccupation with curing the body
that arched and doubled over with frequent spasms. Contradictions aside,
Florencia’s voice gives witness to a rare beauty that demands an attentive,
appreciative gaze in defiance of cultural norms.
Gaby’s interventions in the telling of her life story introduce other
insights that were ahead of their time, such as her decision to abandon the
rigorous physical therapy regimen prescribed for her in order to marshal her
energies toward her intellectual life, and her reflections on sexuality and the
obstacles to a sexual life that exist for people with disabilities. In so doing,
she reveals that in order to negotiate an entry into the closed spaces of
72 Beth E. Jörgensen

school and pleasure, the person with disabilities must defy entrenched norms
such as the medical model of rehabilitation, and the taboo surrounding
the sexual citizenship of people with disabilities.13 In closing this section of
the chapter and before turning to the poetry of Ekiwah Adler-Beléndez, I
return to the idea that disability studies, with its roots in the disability rights
movement, has an important social justice dimension. We should not leave
Gaby Brimmer without asking ourselves about the status of Florencia. Poni-
atowska’s interviews with Florencia Morales resulted in her incorporating
Nana’s version of Gaby and their common life into the text. Nevertheless,
it is easy to read the autobiography and overlook the challenge that Floren-
cia herself poses to the goal of inclusion and equal rights for persons with
disabilities. To put it briefly, in a nation with severe income inequality and
a history of discrimination against the poor and against people with dark
skin, the implications of Florencia’s decision to devote her life to Gaby’s
care are highly problematic. On the one hand, in the Brimmer household
Florencia has a level of economic security and personal comfort that she
could not have had in her home village with its lack of educational and
job opportunities, or in service to a less “humane” family in Mexico City.
On the other hand, a middle-class Mexican woman or a woman anywhere
who has access to education and a living wage, would not be likely to
choose a life of constant service, isolation from her community, lack of freely
chosen friends and partners, and lack of schooling, among other constraints
and losses that Florencia accepts. In the struggle for access and inclusion
for people with disabilities including, I might add, the elderly with their
late-acquired needs, society must contend with the reality that their care,
as now provided, is often dependent on the limited options available to a
differently but also severely marginalized class of people.14
In Gaby Brimmer, the experience of living with cerebral palsy shapes
the narrative structure and determines the predominant themes almost exclu-
sively. In contrast, the writing of the young bilingual, bicultural poet Ekiwah
Adler-Beléndez does not immediately call attention to itself as the work of
a person with a significant motor impairment, also caused by cerebral palsy.
Born in 1987 to a Mexican mother and a North American father, Adler-
Beléndez has been writing and publishing poetry in Spanish and in English
from a very young age, and at the present he conducts poetry workshops
for youth with cerebral palsy, as well as engaging in public speaking and
other kinds of activism with the ConNos/Otr@s organization in Cuernavaca.
His first book Soy appeared in 1999, and he has three more collections of
poetry to his credit: Palabras inagotables (2001), Weaver (2003), and The
Coyote’s Trace (2006), with a new book titled “Love on Wheels” in progress.
His work takes up the canonical themes of Western poetry: heterosexual
 Negotiating the Geographies of Exclusion and Access 73

love, the beauty of the natural world, friendship, the desire for spiritual
and artistic transcendence, the fear of death, and the art of poetry itself;
and it could be said that his poetry thus eludes the gaze of those readers
who would look first for the theme of disability in art created by a writer
who uses a wheelchair. He also directly addresses the experience of living
with a disability from a perspective that defies expectations, and he creates
a poetic voice that gives testimony to the frustrations and the pleasures of
negotiating the obstacles created by those expectations.
Adler-Beléndez’s language can be playful and light, seemingly spon-
taneous in its generation of images and word play that evoke the beauty
of common objects and the ironic dimensions of everyday life. In this, he
shows the influence of Pablo Neruda’s Odas elementales. The poem “Too
Bad” from Weaver transforms a home remedy for the common cold into a
living thing through several linguistic sleights of hand:

This carrot juice

(supposed to help my cold)
Comes effortlessly up the straw
A rough sunset mingling with my saliva.
The carrot juice is gone
A rabbit, leaving but a trace of itself.
Too bad my cold isn’t a dog,
that leaving its nasal cave
runs after it. (1–9)

The charm of this brief poem comes from the ingenious, economical
use of rhetorical figures and the light tone of the disappointment expressed
over carrot juice’s medicinal inefficacy. The juice, after rising “effortlessly
up the straw,” resolves into a “rough sunset” on its way down the raw
throat, a metaphor based on the sharing of a common color and enriched
by sinestesia. Metonymy transforms the juice into a rabbit—think of Bugs
Bunny famously chomping on his carrot—which soon disappears as if in a
magician’s hat trick. Unfortunately for the sufferer, the common cold is not
a dog, invited metonymically by the fleeing rabbit, its natural prey, to leave
“its nasal cave,” but instead remains inside the nose, a lingering malady.
This and other poems place Adler-Beléndez as a poet dedicated to the craft
of writing and employing verbal artistry to express a wide range of emo-
tions and experiences, both lived and imagined. Among those experiences,
but not occupying a dominant position, is the reality of his cerebral palsy.
Many of us, when thinking of a wheelchair, visualize a clumsy rectan-
gular apparatus with four wheels, heavy and black as mourning. The phrase
74 Beth E. Jörgensen

“confined to a wheelchair” also comes to mind, in spite of recent efforts

to say, rather, that a person uses a wheelchair. Adler-Beléndez rewrites the
relationship between a person with a motor disability and the wheelchair by
celebrating mobility, not confinement, and by acknowledging the physical
intimacy that exists between the human body and technology. The poem
“Joy” from The Coyote’s Trace inscribes an alternative view—an alternative
knowledge—achieved through embodied experience and artistic reflection:

This turquoise tricycle

with no pity
or sense of duty
carries my weight,
obeys the natural,
magnifies the intention
of movement,
...
the third wheel
diminishes the danger of two—
takes me
past the smell of compost
past the facets of time
past duality! (1–7; 11–16)

The bright color and the three wheels of the wheelchair described
here establish its difference from the standard chair whose image we have
internalized and normalized. Further, it offers an impersonal assistance, serv-
ing its user “with no pity / or sense of duty” in implicit contrast to the
experience of too much dependence on other human beings and too much
exposure to their sense of obligation. The person and the chair function
as one animated unit, with the prosthetic device “obeying” and “magnify-
ing” the body’s natural inclination to movement. The final six verses play
a highly effective, revelatory game with the numbers two and three. Two,
when it designates two wheels, signifies a precarious balance that is hard to
hold and prone to the risk of falling. The third wheel of the tricycle gives
stability, diminishing the danger implicit in the number two. What is more,
the third wheel can be seen as a third term offering an alternative to the
divisive duality and apparent stasis of binary oppositions such as ability and
disability and, in this interpretation, upsetting a false stability. The duality
of mobility and paralysis is superceded by a third option, the body made
able through technology. This body, carried by the wheelchair, celebrates
an alternative mobility and also reminds us that no one goes very far on
 Negotiating the Geographies of Exclusion and Access 75

“their own two feet.” Technology carries us all, and we all depend on its
generous impersonality to extend the limited reach of our prized autonomy.
Like Gabriela Brimmer, Ekiwah Adler-Beléndez defies the repression of
“disabled” sexuality by openly expressing his sexual desires, both frustrated
and realized. Many of his poems represent love and the desire for physical
intimacy with a female partner, and his short-lived blog from 2010 “Love
on Wheels” treats the relationship difficulties that confront a young person
who uses a wheelchair. With honesty and often with humor, the writer
contests the common misperception that he is physically and emotionally
fragile and must be treated with special care. A poem posted on July 8,
2010, titled “The Woods” captures a moment suspended in space and in
time between reality and dream, passion and tranquility, loving encounter
with another and reconciliation with oneself. It starts on a decidedly realistic,
unsentimental note: “She pushed / my wheelchair / into the woods” (1–3).
But, before the poetic “I” can rechannel physical desire into philosophical
conversation (“the heavy blanket / of a metaphysical subject” 6–7), the
“midsummer night” and a gentle rain overtake the two lovers and they slip,
“braided,” “into bodies of moss and leaf.” The poem concludes with images,
both conventional and unexpected, that make tangible the ineffable pleasure
of the desiring/desired subject.

I, with her in my arms . . .

became at once
a line of smoke
where sky meets sea
over the world’s
curved blue lip
and one coherent piece
of cosmic clay
feeling wanted for the first time
not in spite of my body
but because of it
every one of my cells opening
into gardens of motion and silence. (17–29)

The shift from a matter-of-fact register in the opening verses to highly

idealized imagery later on, might surprise those readers who would seek a
more realistic treatment of “disabled” sexuality by a poet with a disabil-
ity. Nevertheless, I would argue that disabled people have the right—the
human right—not only to sexual citizenship as Tobin Siebers describes it,
but to the pleasurable idealization of experience in memory, or the outright
76 Beth E. Jörgensen

invention of memories of union and plenitude, free from the limiting reality
of everyday exclusions.
Gabriela Brimmer and Ekiwah Adler-Beléndez, whose lives overlapped
during a period of cultural and legal continuity and change in Mexico, have
made a multifacted contribution to disability rights and to disability knowl-
edge through their writing and their other forms of activism. As Mexico
slowly institutes a juridical model of disability based on human rights and
inclusion in the twenty-first-century, life writing with its aesthetic and ethi-
cal dimension can play a role in the sensibilización (consciousness raising)
that activists cite as a priority for their society. Reading their work from a
disability studies perspective expands our understanding of the complexities
and the possibilities of negotiating geographies of exclusion and access in
Latin America.

Notes

1. The term temporarily able-bodied or TAB recognizes the contingent nature

of “ability” and the potential for entering the category of “disability” at any time.
Deborah Marks notes its usage by disability rights activists dating back to the
1980s (18), but the term is surrounded by controversy. For an example of pros
and cons, see Liz William’s weblog “ ‘Temporarily able-bodied’: and why I don’t
like it,” March 21, 2013.
2. On the distinction between disability life writing and fictional accounts,
see Quayson, Aesthetic Nervousness, p. 51.
3. In June 2011 and July 2012, I interviewed a number of disability rights
activists and researchers and government officials in Mexico City. I am grateful to
Federico Fleischmann (Libre Acceso), who met with me and facilitated other valu-
able contacts.
4. According to American architect Ronald L. Mace, “[t]he universal design
approach [means] simply designing all products, buildings and exterior spaces to
be usable by all people to the greatest extent possible” (156). Mace advocated for
its adoption in order to “assist in empowering people with all types of physical or
cognitive disabilities to integrate as fully as possible into the mainstream of daily
life” (156).
5. David Pfeiffer’s “Philosophical Foundations of Disability Studies” offers
an excellent overview of models of disability and their philosophical bases through-
out history. Another useful but less easily located summary can be found in Patricia
Brogna’s essay “Las representaciones de la discapacidad,” pages 175–187.
6. APAC is the Asociación Pro Personas con Parálisis Cerebral, and Confe
is the Confederación Mexicana de Organizaciones a Favor de la Persona con Dis-
capacidad Intelectual.
 Negotiating the Geographies of Exclusion and Access 77

7. Textual quotes come from the English translation by Trudy Balch, which
captures the individual speaking styles and the vocabulary of disability of the time.
8. Gabriela Brimmer also wrote poetry and she published the collection
Gaby, un año después in 1980. The autobiography includes some of her poems, but
I have chosen to focus on the narrative aspect of the text and the collaborative
creation of the life story.
9. In her introduction to the English-language translation, Lauri Umansky
addresses these points about the language of the text in greater detail (xviii–xx).
10. In order to maintain a distinction that is critical to the reading of auto-
biography, I refer to the historical figure as Gabriela Brimmer or Brimmer, and the
protagonist of the autobiography as Gaby throughout my study.
11. See Antebi’s book chapter for an analysis of Poniatowska’s role as co-author
and the collaborative nature of the text as regards the theory of testimonio (190–198).
12. Critiques of the social model of disability stem in part from the impor-
tance of considering the body as central to the human experience of the world. G.
Thomas Couser makes the point that illness and disability life writing foreground
the somatic basis of human experience (Recovering 12).
13. See Siebers’s “A Sexual Culture for Disabled People,” Disability Theory
(135–156).
14. National Public Radio (NPR) did segments on October 16 and 17, 2012,
on how home health care is provided in the United States. Jennifer Ludden and
Marisa Peñaloza focused on two major points: the low wages paid in the home
care industry and the high percentage of immigrants, many of them Mexican, who
fill these jobs.

Works Cited

Adler-Beléndez, Ekiwah. Palabras inagotables. Jiutepec, Morelos, Mexico: Con

Nosotros, A.C., 2001.
———. “Too Bad.” Weaver: A Collection of Poems. Amatlán, Morelos, Mexico: Ed.
del Arkan, 2003, 29.
———. “Joy.” The Coyote’s Trace. Amatlán, Morelos, Mexico: Ed. del Arkan, 2006,
43.
———. “The Woods.” Love on Wheels: Sex, Love, Disability. July 8, 2010, n.p.
Web. December 1, 2012.
Antebi, Susan. Carnal Inscriptions: Spanish American Narratives of Corporeal Differ-
ence and Disability. New York: Palgrave Macmillan, 2009.
Bérubé, Michael. “Afterword: If I Should Live So Long.” Snyder et al., 337–343.
Brogna, Patricia. “Las representaciones de la discapacidad: la vigencia del pasado
en las estructuras sociales presentes.” In Visiones y revisiones de la discapaci-
dad. Edited by Patricia Brogna. Mexico City: Fondo de Cultura Económica,
2009, 157–187.
78 Beth E. Jörgensen

Calcáneo, Karla. Unpublished interview with the author, June 22, 2011.
Couser, G. Thomas. “Disability, Life Narrative and Representation.” PMLA 120.2
(2005): 602–605.
———.“Quality of Life Writing: Illness, Disability and Representation.” In Teaching
Life Writing Texts. Edited by Miriam Fuchs and Craig Howes. New York:
Modern Language Association, 2007, 350–358.
———. “Signifying Bodies: Life Writing and Disability Studies.” Snyder et al.,
109–117.
Davis, Lennard J. “Constructing Normalcy.” The Disability Studies Reader. 3rd ed.
Ed. Lennard J. Davis. New York: Routledge, 2010, 3–19.
Fleischmann, Federico. “El papel de las organizaciones de la sociedad civil en el
monitoreo de los derechos humanos de las personas con discapacidad.”
Mecanismos nacionales de monitoreo de la Convención sobre los Derechos de las
Personas con Discapacidad. Mexico City: Comisión Nacional de los Derechos
Humanos, 2008, 47–58.
Gamio Ríos, Amalia. “Discapacidad en México: El derecho a no ser invisible.”
Brogna, 431–445.
Garland-Thomson, Rosemarie. Staring: How We Look. New York: Oxford UP, 2009.
Ludden, Jennifer. “Home Health Aides: In Demand, Yet Paid Little.” National
Public Radio. October 16, 2012, n.p. Web. April 11, 2013.
Mace, Ronald L. et al. “Accessible Environments: Toward Universal Design.” In
Design Intervention: Toward a More Humane Architecture. Edited by W. E.
Preiser et al. New York: Van Nostrand Reinhold, 1991, 155–176.
Marks, Deborah. Disability: Controversial Debates and Psychosocial Perspectives. Lon-
don: Routledge, 1999.
Mintz, Susannah B. Unruly Bodies: Life Writing by Women with Disabilities. Chapel
Hill: U of North Carolina P, 2007.
Mitchell, David T. and Sharon L. Snyder. Narrative Prosthesis: Disability and the
Dependencies of Discourse. Ann Arbor: U of Michigan P, 2001.
Peñaloza, Marisa. “Immigrants Key To Looming Health Aide Shortage.” National
Public Radio. October 17, 2012, n.p. Web. April 11, 2013.
Pfeiffer, David. “The Philosophical Foundations of Disability Studies.” Disability
Studies Quarterly 22.2 (2002): 3–23. Web. September 15, 2011.
Poniatowska, Elena and Gabriela Brimmer. Gaby Brimmer. Mexico City: Grijalbo,
1979.
———. Gaby Brimmer: An Autobiography in Three Voices. Translated by Trudy Balch.
Intro. Lauri Umansky. Waltham, MA: Brandeis UP, 2009.
Quayson, Ato. Aesthetic Nervousness: Disability and the Crisis of Representation. New
York: Columbia UP, 2007.
Ríos Espinosa, Carlos. Unpublished interview with the author, June 24, 2011.
Rosas Barrientos, Ernesto. Unpublished interview with the author, June 22, 2011.
Schaefer, Claudia. Textured Lives: Women, Art and Representation in Modern Mexico.
Tuscon: U of Arizona P, 1992.
Siebers, Tobin. Disability Theory. Ann Arbor: U of Michigan P, 2008.
 Negotiating the Geographies of Exclusion and Access 79

Snyder, Sharon L., Brenda Jo Brueggeman and Rosemarie Garland-Thomson, eds.

Disability Studies: Enabling the Humanities. New York: Modern Language
Association, 2002.
Williams, Liz. “ ‘Temporarily able-bodied,’ and why I don’t like it.” Bread and Roses:
A Song of Pilgrimage. March 2010, n.p. Web. April 12, 2013.
 Part II

Global Bodies and the

Coloniality of Disability
 Chapter 4

Otras competencias
Ethnobotany, the Badianus codex, and
Metaphors of Mexican Memory Loss and
Disability in Las buenas hierbas (2010)

Ryan Prout

In Mexican director María Novaro’s most recent film, Las buenas hierbas (The
Good Herbs), dislodgement of Mexico’s indigenous cultures—through the
forgetting, flight, and appropriation of ethnobotanical knowledge—grows
into a structural frame that envelops and continuously informs the narra-
tive.1 Rather than running toward the site of an authentic culture, in Las
buenas hierbas the record of an indigenous culture is the marrow of the
film. As I illustrate in this chapter, Las buenas hierbas tethers traces of pre-
Columbian indigenous knowledge to a portrait of a woman experiencing
Alzheimer’s disease in such a way that a globalized condition is localized
while also using individual loss of memory as a route to remembering
cultural forgetting.
Subtle special effects of multimedia collage permit pages from the
Codex de la Cruz-Badiano—the herbal almanac translated into Latin by
Juan Badiano, from a Nahuatl text written in the Colegio de Santa Cruz
de Tlatelolco in 1552 by Martín de la Cruz, an indigenous botanist—to
blend into the film as the visual terrain and background for Novaro’s very
contemporary narrative about Alzheimer’s, and the physical and mental dis-
abilities entailed by the disease. Set in Mexico City, the film’s focus is the
relationship between Lala, a middle-aged ethnobotanist, and her daughter
Dalia, a single mother with a passion for vocabulary and philosophizing.

83
84 Ryan Prout

Initially Lala is presented as an extremely competent person, impatient

with her daughter’s speculative approach to life. However, the third pro-
tagonist in the film is dementia and very soon Lala’s high level of cognitive
functioning deteriorates: the film’s second act opens with her confiding her
diagnosis of Alzheimer’s to Dalia, and, in the third act, she begins to lose
physical as well as mental functionality. Lala’s interest in ethnobotany gives
Novaro a premise for imbricating in the narrative many references, textual
and visual, to the Codex de la Cruz-Badiano, and the film’s interweaving
of a twenty-first-century drama and a sixteenth-century herbal allows the
director to make artifacts of Mexico’s indigenous cultures speak effectively
to the present.
Novaro does not theorize the differences between medical and social
models of disability in her film. However, the dialogue between indig-
enous herbal practice and contemporary biomedicine established by the
film’s structure potentially disrupts both the notion that the medicalization
of disability is an artifact of industrialized and developed societies as well
as the sense that progress toward a social model of disability is exclusively
a feature of recent history and of Western identity politics. In the reading
developed here I propose that the film’s negotiation of indigenous and bio-
medical conceptualizations of the ailing and non-normative mind and body
reveals elements of both models of disability in pre-Columbian apprehen-
sions of the diversity of experiences today rendered by notions of the able
and disabled body or mind. I suggest that a process of cultural subsidence
in Las buenas hierbas enables Novaro to show viewers that there is a specifi-
cally Mexican understanding of disability informed by pre-Hispanic cultures.
Furthermore, the ethnobotanical cultural milieu created by the film allows
it to extend its portrait of a family affected by a disability to a critique that
politicizes on a national scale the questions it raises about cultural memory
and social justice.
The characters in Las buenas hierbas talk often about the codex, and
animation is used to bring alive the original color illustrations to show the
development and flowering of the plants described by de la Cruz. This is
one of several unconventional flourishes in the film; it also reifies words,
putting them on screen as if three dimensional letters of the alphabet were
material parts of the environment inhabited by the characters. Mise-en-scène
is used to imply an environment that is quite literally colonized by a lan-
guage, which, furthermore, takes on some of the aspects of the plants also
described by the film, as it grows and establishes itself over a defined habitat.
Among the film’s key themes, then, are memory and amnesia, aging
and dementia, gender and science, and cultural hybridization and imperi-
alism. And plants. What I want to do in this chapter is first to consider
 Otras competencias 85

the film under some of these headings—by looking at how understanding

the iteration of ethnobotany specific to Mexico can help in seeing how the
film fits into a specifically Mexican discourse of disability, indigeneity, and
femininity—and then to ask how the third age, and its infirmities, sits
within a Latin American cinematic legacy where a political critique informed
by the Third Cinema manifesto is privileged. Since Third Cinema queries
hybridization and mimesis, the brief incursion into its legacy also allows
me to tilt Novaro’s film so that it speaks within the still unsettled debate
over how to define the cultural identity of the Codex de la Cruz-Badiano.

Foundations of a Mexican Disability Discourse

Mexico City, the megalopolis that gives its name to the world’s most popu-
lous Spanish-speaking country, is sinking. Built over the network of canals
that existed before the arrival of Cortés, the subsidence problem can be seen
in tilting buildings and in the flights of steps that have had to be built to
permit downward access to the entrances of buildings whose portals used
to be at ground level.2 If this material subsidence creates issues of acces-
sibility for those with mobility impairments in Mexico City, so, too, does
the fact that the country’s approach to issues of social justice and national
identity is also steeped in the layers of history over which contemporary
political and institutional structures are built. I do not mean that reference
to pre-Columbian cultures automatically creates obstacles or impediments
to equality for disabled people in Mexico; the point is a more neutral and
descriptive one to the effect that approximations to disability politics in
Mexico have recourse to a legitimizing or differentiating discourse of pre-
Columbian antecedence, which lends questions arising from physical and
mental impairment in Mexico a distinctive framework.
For example, in the preamble to its 2004 statistical assessment of dis-
ability in Mexico, Las personas con discapacidad en México: una visión censal,
the Mexican National Institute of Statistics, Geography, and Technology
(INEGI) posits increased recognition of people with disabilities as an interest
group, and movement toward the betterment of services and provisions for
them, as an index of national development. At the same time, and before
summarizing the history of the shift from the asylums of the Porfiriato to
the welfare models developed in the 1980s, the Visión censal casts its gaze
back to a pre-Hispanic North America and discovers indigenous cultural
practices that in some ways resembled pre-Christian medieval Europe’s ani-
mist stigmatization of people with physical or mental deficiencies and, in
others, reflected an enlightenment surpassing that of the European colonists:
86 Ryan Prout

Dualism in Nahuatl culture in the explanation and treatment

of diseases and deficiencies was apparent in animist interpreta-
tions strongly associated with superstitions or auguries, and was
also to be seen in the development of an extensive therapeutic
practice based around herbalism, something which was a source
of admiration among the conquistadors. (INEGI 2)

The colonists’ admiration for the pre-Columbian herbal pharmacopeia is also

remarked on by Francisco Guerra who says that “The botanical gardens of
Nezahualcoyotl and Moctezuma, and the fact that a special market existed
in the ancient Tenochtitlan just for medicinal herbs were deeply admired
by the conquistadores” (332–333).
INEGI’s survey brings this pre-Columbian and—partially—medical
model of conditions seen as aberrant or defective very much into the present:

The influence which Greek and Roman civilizations had in

medieval Europe is also reflected in the mixture of Spanish and
pre-Hispanic cultures, and can be seen also in the concepts and
attitudes which our society currently has towards people with
disabilities. (2)

The very fact, then, that disability in Mexican discourse—administrative

as well as anthropological—is read as subject to the same syncretizing
influences as many other aspects of contemporary Mexican culture and
society binds notions of impairment equitably into a specifically Mexican
Weltanschauung.3
Bridging pre-Columbian practice and post-Hispanic epistemology are
the codices, hybrid documents like the Badianus codex, which applied the
structures of European herbals to indigenous botanical knowledge. As the
introduction to INEGI’s census puts it:

Therapeutic practice was based principally in herbalism [and] the

degree to which it had developed can be seen in the Badianus
and Florentine Codices where there are to be found complex
treatments for illnesses, deficiencies, and disabilities such as epi-
lepsy, blindness and deafness, conditions which were addressed
in their multiform presentations. (3)

This is significant in terms of this chapter’s focus on María Novaro’s Las

buenas hierbas, because it sheds light on the director’s conjoining of, on the
one hand, a narrative set in 2007 about a woman who becomes disabled
 Otras competencias 87

due to Alzheimer’s and, on the other, an exploration of the relevance to

contemporary Mexico of the indigenous knowledge preserved in the Badia-
nus codex. The film is punctuated with richly animated illustrations from
the codex together with chapter headings taken from the accompanying
descriptions of a plant’s medicinal or therapeutic properties (see Figure 4.1);
if at first this lends it a structural similarity to Laura Esquivel’s novel Como
agua para chocolate (and to the blockbuster film based on it), closer examina-
tion reveals a film with a more lacerating underlying political critique than
Esquivel’s romanticized and magically real cookbook, as I detail further on
alongside a brief incursion into Third Cinema politics. Las buenas hierbas
gives us recetas of a different kind, and prescriptions not only for individu-
als but for social ailments, foreseen, for example, in de la Cruz’s inclusion
in his manuscript of a plant-based remedy for ineffectual politicians and
administrators beset by fatigue and mediocrity.
How do we arrive at a film that, without losing the plot, can shift
from animated pages of the Badianus codex to scenes set in a community
radio station where the presenters decry government corruption and the
failure to act on findings like those made by the Mexican journalist Lydia
Cacho about sex trafficking? Has there been any sanction for a state crime

Figure 4.1. Still from Las buenas hierbas illustrating a page from the Codex de la
Cruz-Badiano and Lala’s research notes. In the sequence which follows the plants
are brought to life in a short animation. Las buenas hierbas © Axolote Cine. All
rights reserved.
88 Ryan Prout

in Mexico in recent years?,” the hosts ask rhetorically, before answering their
own question: “There’s not a single person in prison: they’re governing the
country” (Novaro 2010). To understand how Novaro’s film about plants and
about pre-Columbian botany can also be a film about social (in)justice, dis-
ability, women’s rights, and unpunished violence, it will be helpful to review
Victor Manuel Toledo’s work on new ethnobotanical paradigms in Mexico.
Toledo argues that “ethnobotany in Mexico lives by a process [of ]
‘scientific revolution’; that is, the replacement of an academic tradition with
a new way to conceive and carry out research” (85). Mexican ethnobotany,
he says, “has entered a new dimension in which it is no longer isolated and
a discipline enclosed within itself, but has become part of a new interdisci-
plinary trend loosely tied to the problems of production and politics” (85).
Toledo claims that a confluence of factors has contributed to making the
crossroads of demos and indigenous knowledge presupposed by ethnobotany
a magnet and rallying point for troublemakers and critics; the growing
sense in Mexico that native epistemologies are cultural artifacts requiring
preservation and conservation coincided with a realization that while the
legacy of indigenous plant knowledge plays a large part in the development
of pharmaceuticals, 80 percent of Mexico’s medical drugs are supplied by
multinationals whose profits remain entirely exogenous.4 Toledo’s key point
is that few of the profits from these (re)discoveries (inaccurately claimed as
wholly modern and Western) go back to the source and that the convergence
of Western pharmacy and indigenous practice around social knowledge of
plants is therefore contentious, political, and an arena in which are con-
densed many of the tensions between globalization and ecological concerns
about people and the places they inhabit.
Edward Anderson argues that as an area of inquiry that is by its very
nature interdisciplinary, ethnobotany “is a subject than cannot be dealt with
from the narrow specialist’s viewpoint so common in academic circles” (184)
and that it demands “breadth of knowledge in both the social and natural
sciences” (193). In Mexico, this already hybrid epistemology has in addition
“attracted and united the most dissident, heterodox, and radical investiga-
tors [and] become a discipline preoccupied with social change, technological
innovation, the country’s economic self-determination, and the struggle of
Indian peoples” (Toledo 75).
Setting Las buenas hierbas in a discursive environment informed by
the ethnobotanical research of its protagonist, then, affords Novaro several
narratological benefits. The incorporation of an interdisciplinary subject
favors the hybridity that critics have underscored as a distinctive feature in
the director’s work.5 In light of Joanne Hershfield’s and Miriam Haddu’s
perspectives on Novaro, in particular, I would argue that the approximation
 Otras competencias 89

in Las buenas hierbas to the increasingly global phenomenon of dementia

diagnosed as Alzheimer’s, and to mental disability through a character whose
life work has been an engagement with the pre-Columbian pharmacopeia,
allows Novaro to negotiate between the local and the global in a way that
retains comprehensibility for an audience outside Mexico while also eschew-
ing an equation between filmic Mexicanness and an aesthetic of violence.
Furthermore, the film’s invocation and literal representation of the Badianus
codex establishes a frame of reference for the film that points to the potential
for a specifically Mexican conceptualization of disability and of its socializa-
tion throughout a history extending much further back than the identity
politics of contemporary rights movements.
Comparing Novaro’s original screenplay (dated 2004) with the finished
film (released nearly six years later) is instructive in that the text makes
slightly more obvious the hybridization of the local and the transnational,
and of Western biomedicine and pre-Columbian herbalism. For example,
in the script a cross-cut between the sixteenth-century codex and a con-
temporary clinical breakdown of landmarks in the physical and mental
deterioration of people with Alzheimer’s bridges scenes sixty and sixty-one:

We see [. . .] reproductions of plants taken from the copy of the

Libellus de medicina libus Indorum Herbis that Lala had in her
office [. . .] We read [. . .] “Cure for one who has been shaken
by whirlwinds or gales” (Novaro 2004, 65)

And this is followed immediately by:

A reminder stuck to the wall [that] explains the “STAGES IN

THE ALZHEIMER PATIENT’S PHYSICAL AND MENTAL
DETERIORATION” (Novaro 2004, 65)

In the screenplay, the turning points in the pathogenesis of Alzheimer’s are

used as chapter headings for the divisions that break the film up into a
series of numbered stages. In the completed film, these chapter headings are
not used and their place is taken instead by the animations of pages from
the codex, each illustrating a different condition and a different plant-based
therapy. The conversation between indigenous and biomedical knowledge
is retained, however. For example, the film retains the scene where Dalia
researches the arguments for a biochemistry of gendered behavior, and the
mise-en-scène of Lala’s office and home juxtaposes indigenous knowledge,
in the form of the Badianus codex, with the accoutrements of an empirically
based scientific practice. It is telling, perhaps, that María Sabina, a curandera
90 Ryan Prout

synonymous with non-Western therapeutic practices and knowledge, appears

to Lala in her home, rather than in her workplace. The domestication of
local knowledge and culture is further reinforced when Dalia rejects the
hospital as a source of succor for her mother and decides that the best place
for her care and her treatment is, instead, her home.

A Feminist Ethnobotany

María Novaro has said of her approach to gender and narrative: “I try to
narrate things from a woman’s perspective, and not to narrate things about
women” (Delon and Quezada 2011 [part I]). Novaro adds to this remark a
recollection of a conversation with Carlos Monsiváis in which he emphasized
that there had been few stories in Mexican cinema told by women. She posi-
tions her filmmaking within an attempt to rectify this imbalance. Focusing
in Las buenas hierbas on the Badianus codex, a text written by a man and
translated by a man, might seem like a strange choice given the director’s
preference for telling stories by as well as about women. However, the work
of women scholars in the rediscovery and republication of the codex was
vital, as Peter Furst outlines in his ethnobotanically informed history of the
text in the twentieth century. The manuscript had languished in European
libraries for 450 years, Furst notes, before Charles Upson Clark chanced
upon it in the Vatican library in 1929. “These and other facts about the
history and content of the Aztec herbal,” Furst writes, “we owe to Emily
Walcott Emmart” (111). The watercolor reproductions of the manuscript’s
botanical illustrations were painted by Marie Therese Missionier-Vuilleman
and it was Elizabeth Clark and another female member of the Garden Club
of America who secured funding—through an award established in honor
of the Club’s first president, also a woman—for the expenses entailed in
the costly color printing of the book.
The film’s inclusion of strophes from Maria Sabina’s mushroom velada
positions femininity at the center of the narrative and at the heart of Nova-
ro’s concern with her characters. Each line of Sabina’s incantation begins
with the words “I am the woman” (Novaro 2004, 48) and one of the sec-
tions replayed by Lala in the film (apparently—in the diegesis—from a tape
recording made during field work) ends with the line “I am the woman
who has wisdom of language because I am the woman who has wisdom of
medicine.” The curandera’s equation of lexicographic and medical sapience
seems to augur the taking up of ethnobotany as a socially and politically
disruptive epistemological framework by Mexican activists and by Novaro
herself in a script informed by this context.
 Otras competencias 91

Lala will tell her daughter in a later sequence of the film “We women
are the ones who pass on words and wisdom” (Novaro 2004, 55) and
the resonance with Sabina’s incantation implies a feminized transmission
of indigenous knowledge between the peoples of Mexico and between gen-
erations within a family. Indeed, Lala has named her daughter Dalia, as
if she were the child both of her corporeal maternity and of her research
into the meanings and uses plants held for Mexico’s native peoples. At the
beginning of the film Dalia is impatient with her mother’s clearly often
repeated advocacy of natural plant remedies for her grandson’s ailments.
In a long suffering tone she echoes Lala’s recommendation of a homemade
plant-based ointment, which is “better than any cream.” Toward the end of
the film when, frustrated by the cruel impersonality of the hospital, Dalia is
treating her mother at home, she uses the same preparation Lala had made
for her and says again, this time with tenderness and regret, “it’s better
than any cream.” While going through her mother’s personal belongings,
she also speaks aloud her sadness that she did not take the opportunity
when it arose to ask Lala about her meeting with María Sabina and what
it was like to take part in a velada. Her mother’s ailing and disabled mind
becomes the damaged repository of an indigenous knowledge already once
removed from its source. Tellingly, the incarnation of indigenous plant and
mycological knowledge in the film is someone who can only be represented
posthumously and by the use of a special effect, which conjures an ethereal
hologram of María Sabina into Lala’s presence.
It is also noteworthy that the greatest tension in the film occurs in
a scene where Dalia is trying to help dress her mother before they set out
on a visit to the hospital. Lala’s incapacity to tell the difference between a
skirt and a cardigan, her loss of the ability to dress herself, is interwoven
with her tremendous agitation about the need to find some vital textual
material in the Badianus codex, which lies open on her bed amidst a rapidly
growing pile of discarded clothes (see Figure 4.2).
Here, perhaps, is where Las buenas hierbas implies most clearly an
affinity between the loss of subjective identity and the loss of non-Western
cultural knowledge and traditions. Globalization is the Alzheimer’s chewing
up the store of cultural diversity and memory, and Lala’s personal breakdown
figures the fragmentation and erosion of a collective subjectivity. The same
scene also illustrates some of the paradoxes and contradictions within the
film: on the one hand, the evocation of pre-Columbian traditions through
the extant codices that record them resists what Ethan Watters describes in
Crazy Like Us: the Globalization of the Western Mind as “the flattening of the
landscape of the human psyche” and a process of diagnostic and iatrogenic
contagion that “homogeniz[es] the way the world goes mad” (2–3); on the
92 Ryan Prout

Figure 4.2. A still from a pivotal scene in Las buenas hierbas. Dalia’s struggle with
her mother’s dementia centres on an open facsimile copy of the Codex de la Cruz-
Badiano and the disorderly Alzheimer’s wardrobe. Las buenas hierbas © Axolote
Cine. All rights reserved.

other hand, this same gesture of rhetorical similitude draws the film into the
paradigm that Sharon Snyder and David Mitchell have identified whereby
disability becomes a metaphor for social and political aberrance and thus
becomes harder to see in its own right.

Localizing a Global Diagnostic Paradigm

Novaro’s screenplay and mise-en-scène, as we can see from the previous

discussion, bring together the erosion of personal identity due to dementia
with concerns about the loss of cultural subjectivity. Finding this narrative
device at work in a Mexican film from the 2000s comes as no surprise to
anyone familiar with the spate of films made in the last five years or so
with a focus on Alzheimer’s. It is also consistent with the 2012 estimate
that there are now more than 800,000 people with Alzheimer’s in Mexico
(Secretaría de Salud).
 Otras competencias 93

In Spain alone between 2008 and 2011 there were at least three
films released with a focus on Alzheimer’s: Nadar [Swimming], Bucarest: La
memoria perdida [Bucharest: Lost Memory], and Arrugas [Wrinkles]. Korean
director Chang-dong Lee’s surprise success with Poetry, a film released in
2010 about the travails of an older woman as her Alzheimer’s symptoms
worsen, shows that the pattern is also a global one. While Alzheimer’s is
experienced on a very subjective level by the patient and by his or her
caregivers it lends itself as a paradigm to an international art house circuit
because the diagnostically established signs of the progression of the disease
are universal. In Las buenas hierbas Lala first forgets that she put her keys
in the biscuit tin, then forgets how to dress. She begins to have difficulty
with hand-to-mouth coordination, and then starts to lose motor control
generally: these signposts are common to all the films I have mentioned as
they portray the diagnosis and pathogenesis of Alzheimer’s. Subjectivities,
as they fall apart, begin to look very samey: toward the end of the process
there is no individuation.
In spite of, or perhaps because of, the homogenized mileposts in
Alzheimer pathogenesis, all the films referred to earlier try not simply to
wrest some individuality from the ravages of Alzheimer’s but also, paradoxi-
cally, to make it function as a metaphor for a cultural specificity under threat
of loss or of being forgotten. While Las buenas hierbas is not as overtly
political as Nadar and Bucarest: La memoria perdida, which cast historical
amnesia as a correlate of Alzheimer’s, neither is Novaro’s film as lyrical as
Chang-dong Lee’s Poetry. It sits somewhere between the two, inviting the
viewer to reflect on the loss to science of the pharmaceutical knowledge that
was not preserved in the codices and, at the same time, to draw a com-
parison between the loss of an individual’s memory and cognition and the
lacunae in the Mexican people’s knowledge of their pre-Hispanic heritage.
Blanquita, a minor character in the film, expresses the metaphorical
function of Alzheimer’s when she says that despite the asyndetic thinking
produced by the disease, it nevertheless reveals a profound truth. From the
film’s ethnobotanical and anthropological context, we can take this to be a
truth about the loss of cultural memory. This is a function that Alzheimer’s
could not be made to serve in an American approach to the condition,
for example, where one of the therapies considered most progressive is to
forget memory and to cease to attach any importance to it (Basting 2009).
As I have argued elsewhere (Prout 2012), a problem with using
Alzheimer’s as a metaphorical vehicle in a personal narrative is that it tasks
the patient, who is effectively losing the capacity for executive action, with
the further responsibility for safeguarding, and thus for losing, the already
tenuous cultural or historical memory, which his or her ailing mind comes
94 Ryan Prout

to represent. We can see, therefore, that the strand of scholarship that stresses
the extent to which disability is the disavowed kernel at the root of critical
rhetoric and discourse is highly germane to interpretations of this new wave
of Alzheimer’s filmic texts.

Hybrids, Copies, and a Third (Age) Cinema

In Las buenas hierbas we see that modern medical science is part of the
problem, rather than the cure, inasmuch as it exports through the imperial
corridors of technology and knowledge a globalizing and homogenizing set
of diagnostic practices and cures. Novaro’s film sets against the high-tech
panopticon of the MRI scanner the folk wisdom of Mexico’s indigenous
peoples. Whereas Carla Subirana’s Nadar segues between high-tech images of
her grandmother’s brain and the similarly rippled image of her grandfather’s
fingerprints, as recorded in his criminal record, Las buenas hierbas makes
a very similar segue, but in the Mexican film the images merge the brain
scans and leaves and petals falling from trees until the plant material and
the tau tangles characteristic of Alzheimer’s seem to become one.
Like Claudia Llosa’s La teta asustada (The Milk of Sorrow 2009), Las
buenas hierbas brings into dialogue Western and non-Western models of
medical practice in an encounter that spotlights the holisticism of pre-
Columbian concepts of the relationship between body and soul and the
mechanistic approach taken by Western biomedicine. Perhaps slightly more
than La teta asustada, Las buenas hierbas tends toward a syncretic accommo-
dation of both traditional and high-tech medicine. Alongside its inclusion of
content from Nicolás Echevarría’s Mujer espíritu, the documentary made in
1978 about María Sabina, Novaro’s screenplay also name checks or includes
visual references to people like Julieta Fierro, an astronomer and celebrity
scientist, and Constantino Macias, a well-known ecologist. And Lala herself
is portrayed as a respected botanist, one in a line of female Mexican scholars
going back to Helia Bravo Hollis who was a significant figure in the field
in Mexico in the 1940s (Herrera 116–121).
Scene nineteen in Novaro’s script is illustrative of its evocation of an
idealized knowledge environment where traditional and scientific wisdom
are to be found alongside each other. In this scene there is no dialogue:
the camera simply tracks across the contents of Lala’s offices at UNAM’s
Botanical Gardens: it first picks out the computer screen on which we see
a page about Alzheimer’s being loaded and then shifts to other objects: a
poster depicting María Sabina, “the mycological sage,” a diploma awarded
to Eduarda Calderon, “Mexican ethnobotanist,” a book, Plantas curativas
 Otras competencias 95

en México, and a large reproduction of illustrations from the de la Cruz-

Badiano Codex.
The hybridization created here in the mise-en-scène is further reflected
in the relationship between the film’s content and its structure, more so in
the original screenplay than in the finished film, as I suggested previously.
In the written text, the same page that we had seen on Lala’s computer
screen, and a poster that is referred to later on and is headed “Stages in
the Alzheimer patient’s physical and mental deterioration,” provide the sub-
headings that break the dialogue into chapters with intertitles that read, for
example, “Fourth phase: changes to behavior with periods of lucidity,” or
Sixth phase: loss of the ability to assume sitting position and to hold head up
straight.” Las buenas hierbas thus uses a paradigm from Western biomedicine
as a framework for narrative content, which is to a large extent drawn from
indigenous traditions of botany and medicine. Here we can see that Novaro’s
appeal to the Badianus codex is not only facilitated by intertextual reference
but is also brought into being by creating a textual edifice in which neither
European nor traditional science is ever clearly privileged at the expense of
the other. In this, the film’s organic structure reflects the Badianus codex
itself: is it an Aztec pharmacopeia ordered after the fashion of a European
herbal, or is it a European almanac that westernizes its indigenous content
within the strictures of an old-world paradigm? The question has vexed
scholars since the reemergence of the text in the 1930s.
In the 1980s Debra Hassig wrote that the only new-world elements
present in the codex were the plants themselves; the idea of signature dis-
eases, where the plant is somehow matched with the part of the body
affected by an ailment, and of cures that addressed imbalances in humors
or in temperature, were clear evidence of contamination of the original
knowledge by European concepts, she sustained. Hassig also proposed that
the recording of indigenous pharmaceutical practice was not intended for
posterity but simply as a means to permit the more efficient annihilation of
“suspect religious ritual” (31). In 2008, Millie Gimmel posited, on the other
hand, that “in spite of its European appearance the Codex is an indigenously
produced work that reflects primarily indigenous sensibilities” (186). She
says that “the European contamination seen by so many scholars in the
Codex might actually be more a reflection of indigenous ethnocentricity and
misinterpretation of European texts rather than the wholesale acceptance of
European medicine” (186). Gimmel foregrounds studies of the Aztecs’ belief
in three animistic entities to propose that where other scholars have seen
the imposition of a European humoral notion of medicine, there is also a
remnant of indigenous ontology. From this she concludes that the “Codex
de la Cruz [is] a work which looks like a European herbal but whose content
96 Ryan Prout

and composition is almost completely indigenous.” The ideal readerships for

the text did not exist at the time of its composition, she says and proposes
that “As twenty first century readers and scholars we must recognize the
hybridity of this text and treat it as the blended text it is” (187). My own
contention here is that María Novaro does precisely this and her syncretic
alignment of indigenous content within a paradigm drawn from Western
medicine’s pathogenesis of Alzheimer’s makes the codex available to just such
a hybrid reading. Here again there is a parallel with the work of INEGI and
its emphasis on cultural hybridization within a medical history of disability.
The question of colonial facsimile versus cultural hybridity takes us
to a more recent codification of cinematically mediated remedies for social
malady: Getino and Solanas’s manifesto for a Third Cinema. The authors
quote the narration from their film La hora de los hornos to the effect that
“As early as the seventeenth century the Jesuit missionaries proclaimed the
aptitude of the South American native for copying European works of art.
If you want to be a man, says the oppressor, you have to be like me, speak
my language, deny your own being” (116). By building her film around the
Badianus codex, a text that plugs so directly into the debate over whether
early hybrid texts from the new world are merely slavish copies of European
traditions or valuable records of indigenous cultures, Novaro can be seen
as having created a work that falls within the legacy of the Third Cin-
ema manifesto: it speaks clearly to the debate opened up and expanded by
Getino and Solanas’s text over mimesis as oppression and, as my reading of
the film through Gimmel’s reinterpretation of the codex suggests, uncovers
a potential for hybridization, which the manifesto’s dichotomizing debate
seemed to have foreclosed.
The attention to the third age in Las buenas hierbas could be read,
furthermore, as an evolution of the Third Cinema manifesto inasmuch as
Novaro’s film focuses on the elderly and those with presenile dementia, a
demographic that cinema prefers on the whole to forget. From this angle,
the narrative can be understood as meeting Getino and Solanas’s challenge
to expose “the whole climate of pseudonormality behind which the warfare
of everyday life is hidden” (127). Particularly toward the end when Novaro’s
perspective turns a spotlight on the impersonal treatment extended to Lala
by hospital staff, the film uncovers the disregard for elders and for people
who are no longer able to be self-advocates.
Las buenas hierbas engages with a disease that is in itself a threat to
the imperialistic cult of the individual. In this much the film fits within the
prescription for a Latin American Third Cinema: it affords a central role
to a section of the population often overlooked by mass media and society,
namely the elderly and people affected by the symptoms of dementia. It also
 Otras competencias 97

calls into question neo-imperialist paradigms of biopower and pharmacracy

by situating medical practice within a hybridized narrative that conjoins
indigenous and Western traditions and thus confronts the notion that only
when the imperialist project, reconfigured as a globalized diagnostic practice,
has gained control of the entire planet will order prevail; as Szasz puts it, in
a pharmacratic imperialism all “human problems are diseases that medicine
will soon conquer” (xv).
In other ways I think it is fair to say that Novaro’s film expands
out of the Third Cinema box. It is a narrative scripted by a woman and
in which women and motherhood are the predominant focus, an aspect
of creativity not especially central in the manifesto informed as it is by a
machista outlook on filmmaking where guns, testosterone, and guerrillas
are predominant. More subtly, I would argue that the film’s exploration of
memory and of the fragility of individual subjectivity also expands on, or
breaks away from, the original manifesto. To find value in the individual
life of a woman who is losing her mind, Novaro’s film eschews the flight
from the past. Memory, on the other hand, is a trickier theme to situate
within the Third Cinema legacy. The manifesto privileges novelty, youthful-
ness, and mobility. Ernesto Guevara is praised as the exemplary new man,
while “the cinema fit for a new kind of human being” is contrasted with
an execrable cinema characterized as one made “for the old kind of human
being.” There is not much scope here for making something good out of
what is held to be old and infirm and therefore worthy only of the dustbin
of history. My point is that a concern with the loss of memory sits uneas-
ily with a manifesto, which is based on a thrusting advance toward a new
dawn. Nevertheless, by summoning collective cultural memory alongside the
exploration of individual memory Las buenas hierbas also responds to the
need foreseen by the advocates of Third Cinema not to be drawn into a
debate about the conceptualization of post-Hispanic Latin American culture
as merely a reiterative or simulative derivation of a European original. This,
in turn, as I have sought to set out in the preceding pages, sets a heavy
burden on the individual mind as a storehouse for an entire cultural legacy.

Impressions of Loss

The two strands of memory loss treated by the film—subjective and cul-
tural—could have rendered Lala’s experience little more than a metaphor,
but Las buenas hierbas avoids reducing the individual to a cypher for a
larger amnesia and is starkly honest both about the disintegration of Lala’s
subjectivity and the physical deterioration wrought by the illness. Those who
98 Ryan Prout

care for people with Alzheimer’s are often portrayed as the real victims of the
disease; without painting Dalia as a victim, Las buenas hierbas nevertheless
illustrates the anguish she endures as her mother disappears before her eyes.
Ofelia Medina (Lala) and Úrsula Pruneda (Dalia) make the filial relationship
tested by Alzheimer’s a credible one in scenes that never become mawkish.
Novaro situates herself in a tradition of female botanical artists and
researchers, asking questions about how the representation of the natural
world has been a labor divided by gender (see, for example, Lightman,
and Speirs) and about the relationship between this segregation and the
misogynistic violence, which is also referenced in the film. Las buenas hierbas
brings Mexican cinema into a current of films about Alzheimer’s and shows
that while the pathogenesis of the disease is the same everywhere, responses
to it are imbricated in cultures that remain discrete. Loss leaves a distinct
impression, an idea developed in Las buenas hierbas both at an historical,
national level, and at a personal one.
In her latest film, as in her previous work, María Novaro sidesteps an
aesthetic of violence to approach pressing issues within Mexican society. I
have tried to read the film in a way that elucidates the political and social
connotations of the director’s choice of a sixteenth-century Aztec herbal
as the cultural medium for her representation of Alzheimer’s and mental
disabilities. In addition, my argument has pointed to the dialogue between
feminist and disability issues in the film and I want to end with Novaro’s
own assessment of how women’s filmmaking is received in Mexico. This
quote from the director illustrates, I think, that the shared interests of
feminism and of disability rights as cognate political movements have still
fully to be worked out:

I think—and I experience this every time one of my films comes

out—that very often our themes [as women filmmakers] are con-
sidered to be minor, our films are considered as smaller, our cin-
ematography is considered a minor genre, as if we were . . . as
if it were the cinema of the handicapped or of people with dif-
ferent abilities and as if we were being told of our filmmaking,
“Well, considering it’s made by women, it’s not that bad,” as if
we were in another league, in another competition. (Delon and
Quezada, 2011 [part II])6

Notes

1. In contrast, in Novaro’s earlier film Sin dejar huella (Without a Trace),

indigenous culture—its potential loss and reappropriation—constitute a plot device.
 Otras competencias 99

In this film, a detective chases a counterfeiter of Mayan artifacts across Mexico from
the northern border with the United States to the Yucatan peninsula.
2. Tenochtitlan and Tlatelolco (Aztec forerunners of what became Mexico
City) were built on islands within Lake Texcoco. In the seventeenth century, the
lake was drained and filled in by the Spaniards: this, together with other geological
factors and the drainage of aquifers to supply drinking water, is at the root of the
city’s subsidence. Illades and Lesser estimate that parts of Mexico City are sinking
at a rate of between 5 and 10 centimetres each year (13).
3. In Nadie es ombligo en la tierra / Ayacxictli in Tlalticpc: incapacidad en
el México antiguo (2000) Arturo Rocha portrays pre-Columbian conceptions of
disability in light of a Nahuatl injunction against the casting out from ordinary
society of those with non-normative presentations of physical and mental capaci-
ties. Reviewing the book, Ernesto de la Torre Villar says that Rocha finds: “[An]
extensive series of elements which allow us to apprehend how there existed [among
the Mexica] people with very diverse disabilities who lived as part of the everyday
society (. . .) and how there grew up around the disabled a way of thinking and a
form of conduct in which we see not rejection but human comprehension.”
4. Research by Fabricant and Farnsworth indicates that 80 percent of “122
compounds of defined structure obtained from only 94 species of plants, that are
used globally as drugs [. . .] have had an ethnomedical use identical or related to the
current use of the active elements of the plant,” and that “most useful drugs derived
from plants have been discovered by follow-up of ethnomedical uses” (69, 74).
5. Joanne Hershfield suggests that “If it wants to appeal to a global audience,
a [Mexican] national film must supplement its localness with a global aesthetic that
appeals to an audience educated through globalizing models of cinema practices”
(171). As Hershfield goes on to illustrate, Novaro has found a way in her films to
achieve this fusion and yet remain outside the drive toward “a global aesthetic of
violence” (172). In a similar vein, Miriam Haddu proposes that “Novaro attempts
to rediscover her nation” and “projects in her work a vision of what she deems to
be an acute interpretation of a specific sense of ‘Mexicanness’ on the screen” (104).
6. The final word in this quote from Novaro—“competencia”—means
“competition” or “ranking” in the context of the director’s conversation about the
reception of Mexican women filmmakers’ work. In Spanish, the word also denotes
competence and competency. The title of my chapter uses “otras competencias”
having in mind the parallel meanings of “competencia” in Spanish. Here as else-
where throughout the text, translations from Spanish into English are the work of
the author.

Works Cited

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100 Ryan Prout

Arrugas. Directed by Ignacio Ferreras. 2012. Cromosoma producciones.

Barrier, Michael. Hollywood Cartoons: American Animation in its Golden Age. New
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Basting, Anne Davis. Forget Memory: Creating Better Lives for People with Dementia.
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Bucarest: La memoria perdida. Directed by Alberto Solé. 2008. Cameo Media.
Las buenas hierbas. Directed by María Novaro, 2011. Action.
Como agua para chocolate. Directed by Alfonso Arau. 1992. Arau Films International
/ Fondo de fomento a la calidad cinematográfica, etc.
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Codex of 1552. Mineola: Dover, 2000.
Delon, Erika, and Mónica Quezada. María Novaro: una visión femenina del cine
mexicano I. Youtube. 2011. Web.
——. María Novaro: una visión femenina del cine mexicano II. Youtube. 2011. Web.
Desnoes, Edmundo. Inconsolable Memories. London: André Deutsch, 1968.
Esquivel, Laura. Como agua para chocolate: novela de entregas mensuales, con recetas,
amores y remedios caseros. Madrid: Mondadori, 1990.
Fabricant, Daniel S., and Norman R. Farnsworth. “The Value of Plants Used in
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Fresa y chocolate. Directed by Tomás Gutiérrez Alea and Juan Carlos Tabío, 1993.
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Furst, Peter. 1995. “ ‘This Little Book of Herbs’: Psychoactive Plants as Therapeutic
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Getino, Octavio, and Fernando Solanas. “Toward a Third Cinema.” Tricontinental
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Herrera, Teófilo. Breve historia de la botánica en México. Mexico City: Fondo de
Cultura Económica, 1998.
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Johnson, Tim. “Mexico City Copes with that Sinking Feeling.” Seattle Times. Sep-
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Memorias del subdesarrollo. Directed by Tomás Gutiérrez Alea. 1968. ICAIC.
Mitchell, David, and Sharon Snyder.“Narrative Prosthesis and the Materiality of
Metaphor.” In The Disability Studies Reader. Edited by Lennard J. Davis.
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Constable & Robinson, 2011.
 Chapter 5

Cripping the Camera

Disability and Filmic Interval in Carlos Reygadas’s Japón

Susan Antebi

In a 2006 comparative study of Juan Rulfo’s classic novel, Pedro Páramo

(1955) and Carlos Reygadas’s 2002 feature film, Japón, William Rowlandson
makes a brief, but intriguing observation. As he describes the opening scenes
of the film, he notes that the camera and sound seem to directly convey
the perspective of the protagonist. That is, as we experience the film, we
simultaneously experience the protagonist’s vision, movement, and corporeal
sensation, through a process of partial identification. As Rowlandson writes:
“The camera . . . walks roughly over the stony ground, to the crunch of
footsteps and the man’s laboured breathing. Moments later it is revealed that
the man walks with a pronounced limp. This simple and easily overlooked
technique fuses together in one montage the separate roles of actor, film-
maker, and viewer” (1028).
Part of Rowlandson’s project is to compare the processes of identifica-
tion between viewer, protagonist, and filmmaker, or reader, character, and
narrator, in Reygadas’s film and Rulfo’s novel. As is well known to read-
ers of Pedro Páramo, one of the most widely read works in the Mexican
canon, the protagonist, Juan Preciado, serves as a guide to the reader as
he makes his descent into Comala, an allegorical world of the living dead.
Similarly, in Reygadas’s film, partial identification between protagonist and
viewer takes place, but in this case through specific camera strategies, as
noted in the aforementioned example. In both works, the reader/viewer
as witness descends into a rural world emblematic of a semi-mythologized
Mexican past, of extreme poverty, and caciquismo, or a local political system

103
104 Susan Antebi

characterized by despotism. Rowlandson pays attention to what he calls

“this simple and easily overlooked technique,” that is, the identification
between the limping movements of the camera, and the revelation that the
protagonist walks with a limp. However, his article is not in fact about dis-
ability, nor does the author discuss the point further. In my reading of the
film and its critical context, I focus on this limp, not simply as an instance
of disability representation in film, but rather as an approach to situating
disability itself at the center of the dilemma of cinematic communication.
In more technical terms, the dilemma may be understood through
the notion of the Deleuzian interval. As Cynthia Tomkins writes, borrowing
from Deleuze and Bergson, “the interval defines a specific type of image,
which receives actions in certain parts and executes reactions in others” (30).
As she also notes, “The notion of the interval acquires especial significance in
the work of experimental Latin American auteurs such as Reygadas, whose
films call for active participation on the part of the audience in deciphering
motivation and eliciting an affective reaction” (30). Use of the limp in the
film is also perhaps an instance of what Mitchell and Snyder have famously
called a narrative prosthesis, whereby disability does the work of giving a
text what it couldn’t otherwise represent on its own. In this case, however,
prosthetic function occurs at the level of a self-reflexive filmmaking tech-
nique that interpolates the viewer, so that disability becomes the gesture of
a shared embodied experience, just as character/actor, filmmaker and viewer
become momentarily fused as one. The shared experience is no more than
a momentary gesture because identification is only partial; we are not the
filmmaker, and the camera pulls away to remind us that our gaze is not,
finally, the same as that of the limping protagonist.
My purpose, then, in approaching this film, is to explore the overlaps
or thresholds between disability representation and personal identification
via embodiment as lived, sensorial experience. In analyzing such expres-
sions, I also wish to consider what the film might contribute to a broader
discussion of disability in its colonialist contexts—made evident through the
camera’s and the viewer’s allegorical descent into a “primitive” world. I refer
here to Aníbal Quijano’s notion of the coloniality of power, which extends
specifically to the question of disability through global capitalism’s historical
and ongoing demands for productive bodies, and through institutionalized
practices of normalization and subjugation (Grech 54).
Other disability studies critics, including David Mitchell and Sharon
Snyder, and Nirmala Erevelles, although using distinct terminology, have
effectively demonstrated the historic and ongoing inseparability of disability
and what Quijano has called the coloniality of power. Quijano’s frequently
cited work crystallizes the symbiotic relationship between the idea of race,
 Cripping the Camera 105

as a structure used to impose hierarchies between human groups, and the

control of labor, resources, and capital (533–534). For Erevelles, race and
disability are mutually configured on and through the bodies of enslaved
Africans, as part of a process that is in turn inseparable from the evolution
of modern global capitalism (40–42). Mitchell and Snyder focus on eugenic
practices and policies of the eighteenth and early nineteenth centuries, and
describe race and disability as mutually constitutive of one another within
the eugenic project (844).
These readings underscore a clearly marked historical trajectory,
through which practices of exclusion and subjugation have irrevocably
linked the categories of disability and race. Yet disability, I would suggest,
also demands its own narratives, which may not always fit neatly into the
sweep of compelling paradigms such as the coloniality of power. Much
as Víctor Manuel Rodríguez-Sarmiento has argued for a “colonialidad del
placer” (coloniality of pleasure) in his reading of queer artistic practices and
resistance, reading disability here will mean paying attention to divergences
from more familiar narratives of oppression: that is cripping coloniality.1 In
the case of Japón, as I suggest further, the structure of disability representa-
tion and embodiment certainly carries the echo of a neocolonial narrative,
as when the camera’s “limping” motion highlights the roughness of the
landscape while underscoring an unjust allocation of key resources, such as
inhabitable land and water. At other points in the film, race, gender, and
poverty become features of disability, and clearly determine the relative
values of bodies and access to resources. Yet Japón also disrupts the viewer’s
expectations in this regard, by splintering the visual continuity it at first
appears to offer, and hence releasing bodies into unpredicted patterns of
affective continuity and symbolic circulation.2
In Japón, the film’s protagonist, an unnamed middle-aged artist from
Mexico City, travels to a tiny and isolated rural community at the bottom
of a steep cliff. We may note from early in the film that he walks with a
limp. And we learn that he intends to kill himself. The man takes lodg-
ing in the home of an elderly woman named Ascen—a shortened form
of Ascensión. In one scene, he attempts to shoot himself, but instead the
scene culminates with a bird’s-eye view of his living, breathing body, lying
next to the corpse of a castrated horse. In another scene, he asks the elderly
woman, Ascen, to have sex with him and she agrees. In the final sequence
of the film, the woman’s nephew comes to claim the foundation stones of
the barn supporting her house, and the townspeople arrive to assist him in
moving them. This will mean the destruction of the woman’s house. The
stones are loaded onto wagons and pulled down the hill by a tractor, with
Ascen sitting on top. We later learn of an accident, in which the woman
106 Susan Antebi

and many of the townspeople perish. At the end of the film, the camera
travels slowly over the landscape of fields, scattered stones, and railroad
tracks, to finally arrive at the body of Ascen. She wears a jacket she had
borrowed from the male protagonist, and her face is covered in a lace-like
pattern of blood (figure 5.1).
It may be reasonable to suggest that the film is not really about dis-
ability, or that disability is not its central focus. Indeed, critical work on
the film thus far has not explicitly emphasized disability. Then again, Japón
in some sense demands that we question the intention and nature of such
classifications. After all, the film is certainly not about the country Japan, nor
about anything Japanese. In an article on contemporary Mexican film, Geof-
frey Kantaris has noted that the seemingly misplaced title may be intended
to underscore this film’s “translocality,” as the urban character seeks out a
remote rural space in which to index or displace what he has lost (524–525).
Yet it is not in fact clear from the film whether anything has been lost,
or to what degree this is simply a matter of individual perception. In the
same sense, within the plot of the film the nature of this hypothetical loss
remains purposefully ambiguous, perhaps referring to sexual impotence, to
a physical condition that creates a limping gait, to an artistic or existential
crisis, or more generally to the alienation intrinsic to contemporary urban
life. Kantaris’s notion of translocality is useful here in the sense that it allows
for a reading of disability that does not insist on the fixed identification of

Figure 5.1. Following the accident, the body of Ascención lies among stones on
the railway tracks. The lace-like pattern of blood on her face suggests a textural
similarity to the lace shroud of the woman who had arrived, in a previous scene,
to announce her death. Japón © 2003 Distrimax S.A. All rights reserved.
 Cripping the Camera 107

a specific body, but instead operates through movements of and between

bodies, while layering each body with an index of potential and figurative
locations.
Thus, we might argue for the film’s disability focus by fixing our
attention on the way the camera, in more than one scene, seems to follow
the protagonist’s limping gait, at times limping along with him, at times
pulling back. We might also pay attention to a scene in which the elderly
woman assists another character in untying his shoes, as the camera focuses
on his limply curled hands. The woman, and the viewer, then focus in on
the woman’s own aged, arthritic but still strong, working hands, as she
holds them up toward the sunlight and rotates them so as to gaze on both
the backs of the hands and the palms (figure 5.2). Later on, she listens to
the male protagonist’s insinuated intention to kill himself, or as he puts it,
to “throw away what doesn’t work” and she responds: “I don’t like my old,
sick arms, but even so I wouldn’t cut them off.”
These seem to be the most explicit disability moments in the film,
in the sense that the camera focuses on specific bodies represented as dis-
abled—a man with an unconventional walk, or hands that cannot fulfill
the expected function of tying shoes, and hands that work despite age
and sickness. In addition, the narrative allows for reflection here on the
individual’s valuing of body parts and function, while tying the reflection
directly into the overarching theme of the film, namely the choice to com-

Figure 5.2. Ascensión gazes upon her hands in bright sunlight, fingers pointing
upwards. The scene emphasizes the aged and arthritic quality of the hands, and their
status as tools that create affective, intercorporeal ties to other characters. Japón ©
2003 Distrimax S.A. All rights reserved.
108 Susan Antebi

mit suicide. The suicide choice in this case becomes momentarily equated
with the hypothetical choice of cutting off a body part that doesn’t work
as well as it used to. The narrative sequence also places disability on a
relative scale here, so that the supposedly more extreme disability of the
hands that cannot tie shoes are contrasted with hands that are arthritic but
working. This value scale becomes central to the anti-suicide message, since
radical disability implicitly increases the value of the other, less-disabled
human bodies and lives with which it is compared. The representation of
radical disability, therefore, leads to the implied message that, considering
the purportedly unfortunate fate of someone with such a disability, others
should be happy they are relatively able-bodied, and therefore should not
take their own lives.
This narrative sequence and its clearly implied message are undoubt-
edly troubling from a disability studies perspective that emphasizes the value
and rights of individual human beings. Yet from here the camera quickly
travels, following Ascen’s gaze, to an extension of the same scene, one that
allows for a more complex proliferation of meanings surrounding the disabil-
ity represented thus far. After assisting Fernando, the secondary character, in
tying his shoes, Ascensión continues with her washing. Suddenly, she hears
the distinct sound of someone biting into an apple. She and the camera
turn and look toward the nearby river bank, where Fernando is seated, now
shirtless, eating an apple that he has pierced with a pointed stick so that
he can grasp the stick with his toes and bring the fruit toward his mouth.
Fernando relaxes in a seemingly carefree manner, surrounded by trees, water,
and the quiet buzz of nature. The scene is edenic, yet slightly disturbing, for
the depiction of leisurely eating seems calculated in opposition to Ascen’s
hard work of washing clothes by hand: she stands while he reclines, she is
clothed while he appears half-naked, she uses her hands to work while he
consumes. And he has access to his feet as tools only because she untied
his shoes for him.
The crudely traced economics of this scene situate the disabled person
in relation to production, consumption, and value, as one who does not
work. Yet disability itself does its own work here by disrupting the presup-
posed landscape of labor and leisure, and by linking bodies through an
unexpected intercorporeal exchange. We may note initially that the opposi-
tion between bodies reiterates a commonplace of history; the indigenous
woman works, her body tires, she ages, and these processes imbue her with
a combination of dignity and suffering. The man, in the meantime, eats and
rests, apparently at her expense. Disability, in this context, appears natural-
ized in the landscape, an element of passive enjoyment, but at the same time
troubles the scene by reminding the viewer of the relative values of bodies
 Cripping the Camera 109

according to their use and productivity. The violence of the filmic sequence
stems from the colonialist economy it cites, in recycling a familiar history of
bodies defined by a superficial rendering of their abilities and appearances.
In touching Fernando’s disabled body, and lending him her hands to
untie his shoes, Ascen reiterates and participates in this economy, defining
the value of her work and her body in relation to a body that implicitly
does not work. But at the same time, when the scene extends itself to the
moment of apple eating—as a secret pleasure, because Fernando remains
outside the frame until we hear the crunching sound and Ascen turns
her head to discover him—the intercorporeal exchange between the two
characters in turn extends itself. Because Ascen has served Fernando in a
prosthetic capacity, lending him her hands, she now shares this prosthetic
function with the stick that Fernando uses to eat the apple. The affective
experience of eating an apple thus passes between the two bodies, and links
them at the same time that it objectifies the hands of the elderly woman.
Instead of a substitution of hands based on their relative use value, the
scene now reveals an extended body, both singular and dual, continuous
and ruptured, in which manual labor transforms itself into pleasure, and
human flesh becomes a wooden stick, from one moment to the next. Evi-
dently, disability makes possible this unexpected extension of labor, and of
the functions, values and pleasures of the bodies in question.
This scene offers an explicit instance of disability representation, while
at once illustrating the notion of the interval, as discussed by Cynthia
Tomkins in her Deleuzian reading of Reygadas and other Latin Ameri-
can auteurs. The interval, in this sequence, or, “gap between action and
reaction” (30) requires the viewer of the film, following Ascen’s gaze, to
create a subjective perception (31) or more generally, to infer a particular
visual and logical continuity in the scene. Because of the interval, or gap,
highlighted here through the technique of an abrupt sequencing of shots,
which Tomkins calls a “paratactical structuring device” (164), there is a
delayed reaction, both for Ascen and the viewer. The delay, for Tomkins,
is what allows the interval to create something new. In the scene in ques-
tion, newness emerges from an unexpected perception and experience of
intercorporeal disability, linking and transforming bodies while restructuring
their relationships to an implied, and historically pre-inscribed economy
of labor and consumption. This particular interval would seem to coin-
cide most closely with the interval’s facet referred to as “affection-image.”
As Tomkins writes, “The affection-image arises in the subject as center of
indetermination, between a perception that is somewhat troubling and a
hesitant action. The affection-image may be a coincidence of subject and
object or a self-reflexive perception. In sum, it associates movement with
110 Susan Antebi

‘quality’ as lived state” (31).3 Disability here is this hesitation, this uncertain
experience, an association and disassociation between body, action, and self-
hood. In addition, the filmic creation of a new and unexpected body, made
possible by the delayed reaction of the interval, ultimately breaks with the
script of the presupposed neocolonial economy and the relative values it
ascribes to particular bodies.
The Deleuzian reading of this scene, in relation to the neocolonial
economy the film implicitly engages, finds echo in recent Deleuzian-
informed disability studies scholarship. In a 2006 article, for example,
Margrit Shildrick and Janet Price interweave contemporary globalization,
disability, queer corporeality, and readings of the work of Deleuze and Guat-
tari, in order to go beyond materialist approaches to global inequalities,
and to “mobilise a productive positivity that overcomes normative binaries,
breaks with stable identity, and celebrates the erotics of connection” (par. 3).
Thus, rather than focusing on the social and economic inequalities intrinsic
to globalization, the authors insist on a “global coming together of bodies”
(par. 4), which in turn demands an ethical relationship, a “corporeal gener-
osity” (par. 15).4 As they write: “Where on the one hand non-disabled and
disabled people are always co-implicated in a dis-organised flow between
both themselves and other others, the non-normativity active in that inter-
corporeality can elicit also a break, unforeseen lines of flight, a moment of
difference, within the interrelation between bodies” (par. 16).
Here Shildrick and Price refer to modes of contemporary global
capitalism as experienced primarily through market relations that bring
privileged Western consumers into contact with an unpredictable array of
economically underprivileged Others, many from the Global South. While
they do not focus specifically on the technology of film, nor on neoco-
lonial structures as those inscribed on the bodies depicted in Japón, their
emphasis on a Deleuzian flow, on intercorporeality, and on the “interval”
of differences, that may produce “unforeseen lines of flight,” does suggest
an affinity with Reygadas’s cinematographic enactment of disability in the
scene discussed above.
Reygadas’s cinematic articulations of disability, as analyzed here,
undoubtedly may be said to operate through a mode similar to the intercor-
poreal disability envisioned by Shildrick and Price, and alluded to—though
in rather different terms—in Tomkins’s Deleuzian study of Latin American
cinema. The sequence of the camera’s “limping” movement, discussed earlier,
that is revealed to coincide with the male protagonist’s limp, also underscores
this point. The camera creates a momentary identification between viewer
and disabled man, but at once insists—through use of a delayed reaction,
 Cripping the Camera 111

and a pulling back from the protagonist’s perspective—on our separation

from both the protagonist and the landscape he traverses.
The functions of disability and intercorporeality in the film, however,
are also inflected by this work’s participation in a specifically Mexican cul-
tural landscape, and a narrative tradition in which local and global econo-
mies of life and death play significant roles. Rowlandson’s article, cited at
the beginning of this chapter, explicitly locates the film with respect to Juan
Rulfo’s Pedro Páramo, highlighting, among other points, the troubled line
between life and death. As Rowlandson notes, in the conclusion of the novel
Pedro Páramo’s body is compared to a heap of stones. At the moment of
death, “He struck a feeble blow against the ground and then crumbled to
pieces as if he were a heap of stones” (Rulfo 123). Similarly, Ascen’s body
in the concluding sequence of Japón becomes, again according to Row-
landson “scarcely distinguishable from the ‘montón de piedras’ ” (heap of
stones) (1034). The comparison becomes especially apt when we consider
that the stones from the foundation of the barn supporting Ascen’s house
were literally essential to her survival there. Thus in their violent removal,
they ultimately rematerialize as equivalent to her dead body (figure 5.3).
Analysis of the role of fluid, troubled, ambiguous, or otherwise charged
divisions between the categories of life and death in Japón at once allows
for reconsideration of the roles of disability in the film. This is not simply

Figure 5.3. Stones from the foundation of the barn that once supported Ascensión’s
house lie strewn along the railway tracks. The house in pieces in a landscape of
human remains makes literal Juan Rulfo’s metaphor of the body as a heap of stones.
Japón © 2003 Distrimax S.A. All rights reserved.
112 Susan Antebi

to suggest a logic linking disability to death. Instead, witnessing instances

of blurred interchangeability between life and death requires the viewer to
reassess the values and expectations conventionally ascribed to particular
bodies and objects. In Japón, the economy of life and death arguably also
works in dialogue and tension with a Christian, and specifically Mexican
and Catholic narrative of sacrifice and redemption, which in turn inflects
the roles of disability in these texts. Here, too, situating disability in the
context of these overarching themes means going beyond a focus on par-
ticular instances of disability representation in the film, in order to recognize
that disability cannot necessarily be located and reduced to the contours of
an individual body, or even to a singular filmic sequence. Instead, disability
becomes central to an overarching narrative and cinematic operation, in
which the relative values of human—and at times, nonhuman—bodies and
lives are negotiated and contested.
Despite the fervent catholicism of Ascen, the female protagonist, and
the symbolic function of her name as prefiguration of her sacrificial death,
religious allegory does not necessarily offer a definitive structure to the role
of death in Japón, and in fact has been read in one case as subordinate to a
competing paradigm. In a recent article on this film, Craig Epplin suggests
that the work participates in a contemporary global and Mexican econo-
my of life and death, characterized primarily by the indifferent generation
of death as waste. In reference to Reygadas’s films released between 2002
and 2010, Epplin writes, “Japón foreshadows a trope that runs throughout
Reygadas’s oeuvre: the representation of death as something that cannot be
recuperated for collective purposes, death as a nonsacrificial event” (294).5
This reading of death in Reygadas’s work, but also in the broader sphere
of Mexican culture in relation to contemporary global capitalism, borrows
from the work of Octavio Paz and more specifically Claudio Lomnitz, who
reads this modern structure of death in relation to the lack of a future
vision or project for the Mexican nation.6 For Epplin, the role of death in
modern Mexico is exemplified in the murder of hundreds of women and
girls in Ciudad Juárez.7 At the same time, Reygadas’s cinematic aesthetics
in Japón suggest an expanded recognition of life forms and even inanimate
objects, such as rocks in the landscape. As Epplin describes, if New Latin
American Cinema incorporated greater recognition of marginalized human
subjects—such as the urban poor—into film, Reygadas takes “recognition” a
step further by lingering over animals and stones with the same, or greater
focused precision than what he projects on human subjects (297).
Such a reading of the film, in which death is part of an indifferent
and necessary production of waste, and humans and nonhumans become
equivalent elements, subjects, or objects scattered over an affective terrain,
 Cripping the Camera 113

suggests strong similarities with Mel Chen’s notion of “animacies,” as dis-

cussed in Chen’s recent book with the same title. Chen questions the divi-
sions and hierarchies that have conventionally defined “life” and “death,”
and construes affect as integral to material objects, whether living or dead.
As the author discusses, the flow of affective animacies is not ultimately
indifferent; instead, human and nonhuman matter is racialized, sexualized,
queered, and contoured according to able-bodiedness and disability (10–11).
Troubling expected or mainstream boundaries between the living and the
dead, or disturbing predetermined oppositions between subjects and objects,
might have everything to do with a disability studies-inflected reading of
the contemporary world, as is the case in Chen’s work. This is so because
animacy may grant previously unrecognized agency to nonhuman animals,
objects, and disabled people who had been formerly “stereotyped as pas-
sive” (3).8
Key differences between, on one hand, Epplin’s reading of the indif-
ferent production of waste as intrinsic to global capitalism and to cultural
articulations of death in contemporary Mexico, and on the other, Chen’s
approach to affective continuities between subjects and objects, living and
dead matter, point toward a central dilemma in reading disability in this
film, as well as in broader global contexts. Specifically, we might ask to what
extent the film offers at particular moments a potential, critical salvageability
for both the particular bodies and the affective, intercorporeal relationships
it portrays. The question is implicitly similar to the one suggested by Shil-
drick and Price when they imagine the possibility of an ethical approach
to disability and otherness in the context of globalization. Does rethinking
relationships between center and margins, humans and animals, prosthetics
and flesh, life and death, allow for a trangressive and celebratory intercor-
poreality, or rather does it lead to a flattening of distinctions, an indifferent
and violent objectification of all bodies? If the film itself offers no straight-
forward answers to this vexing question, it may be because the operation in
question, whether designated as the violent production of indifferent waste
or as the productive generation of animacy, tells only part of the story.
In my reading of the disability interval in the film, exemplified
through scenes of the limping protagonist, and of the shared pleasure of
the apple, discussed earlier, I insist on the tension between a neocolonial
backdrop structuring the roles of gendered, racialized, and disabled bod-
ies, and the production of a different, unpredicted body, a trangressive
intercorporeality that disrupts and “crips” visual expectations. Here, too,
in paying attention to the repetitive project of death in Japón, as a feature
relevant to both a uniquely Mexican cultural and narrative tradition, and to
a reading of contemporary globalization, as in Epplin’s approach, I note a
114 Susan Antebi

different, though related tension, this time between the obfuscation of the
lines that conventionally separate life from death, or human from animal,
and a lingering—and emotionally rich—religious economy of sacrifice and
transubstantiation. In other words, the blurred continuum of life/death,
human and nonhuman objects, acquires a certain emotional appeal due to
its links and contrasts with the more acutely felt violence of inequality and
injustice. Similarly, the interchangeability of bodies works in counterpoint
to the spiritual, and specifically Catholic catharsis of exchange as sacrifice.
In Japón, the death of Ascensión clearly replaces that of the man
who had intended to take his own life.9 The juxtaposition of the two main
characters is not likely to leave the viewer indifferent. As we have seen, the
male protagonist is a privileged, urban mestizo, who descends into a world
of rural indigenous poverty in order to seek his own death. His hostess and
lover is an elderly indigenous woman, who tacitly accepts that her home be
dismantled around her, stone by stone. The lengthy final sequence of the
film, in which the camera follows the railroad tracks, strewn with stones and
corpses, until it arrives at the body of Ascen, is set to the soundtrack of Arvo
Pärt’s popular In Memoriam Benjamin Britten. It is difficult to watch and
listen to this scene without falling sway to its emotivity. The music features
Pärt’s minimalist, signature technique, known as tintinnabuli. As Benjamin
Skipp explains, “Pärt’s search for tintinnabuli originated from a desire to
imitate the sensations brought about by hearing the tolling of church bells,
and he has commented to this purpose that the relationship between the
two voices ‘can be likened to the eternal dualism of body and spirit, earth
and heaven’ ” (3).10 The point here is not only that the concluding scene to
Japón, with use of this music, connotes a Christian spiritual tradition, but
in addition that the specific musical technique works through an explicit,
structural reference to religious allegory. The film’s economy of death goes
beyond the indifferent production of death as waste, because the bodies it
depicts are inevitably tinged with what’s left of this “eternal dualism,” and
the emotional weight it carries.
The affect rendered by the allegory of exchange as sacrifice does not
ultimately represent a strict opposition to the affect of “animacy,” whereby
life coexists in continuity with death, and the landscape offers up rocks
and human bodies interchangeably. Although as viewers we may note the
tension between these models, they also appear to work in tandem with
one another, so that the indifferent articulation of life and death, humans
and nonhumans, paradoxically underpins a more deeply rooted emotional
appeal, grounded in the duality of symbolic exchange. Thus, the meta-
phorical dismemberment of the elderly woman’s body, exposed in death
as the stones of her house, draws on the affective materiality of the stones
 Cripping the Camera 115

themselves. This circuit of emotions, oscillating from human to nonhuman

objects is driven by the bland interchangeability of subjects and objects,
life and death, but at the same time by the trace and pull of a religious,
humanistic affect. In other words, stones replace flesh—and vice versa—as
a body of Christ, and as the corpse of an indigenous female Ascensión
replaces that of a nameless, urban mestizo man with an unexplained limp;
the exchange is both emotionally loaded and strangely flat.
Here again, despite evident contextual differences, Japón echoes Pedro
Páramo. The novel, like the film, may be read as referencing the dilemma of
the affective materiality of a “heap of stones,” which is at once tied into an
overarching allegorical structure that separates spirit from flesh and stone,
or disembodied voices from layers of dust. Jorge Aguilar Mora implies this
dynamic, while privileging the subsumption of symbolism into pure matter
when he writes: “Pedro Páramo hides nothing, and his death is the spec-
tacle of a myth that returns to its matter, to its common origin with earth”
(226; my translation). This point of contact with Rulfo’s classic text and
the critical tradition surrounding it is significant in the sense that it binds
the film to a particular cultural landscape; thus the viewer’s experience may
be mediated by the additional layer of Mexican narrative history, and the
familiar dynamic of bodies and voices, living and dead, that it conjures.
The circuit of exchange in the film, inflected by a reference both to
allegory and sacrifice and to a blurring of oppositions, an apparent indif-
ference, repeats itself in numerous instances, creating a chain of associations
that is at times emotionally compelling, even as it renders a landscape of
seemingly interchangeable objects. In one sequence, a reverse angle reveals
two horses mating, and a group of young boys who watch them, even as
the boys also witness the camera documenting their emotions. The scene,
which is also witnessed by the male protagonist, prefigures the human sex
scene between the man and Ascen, an octogenarian woman. The awkward-
ness of this subsequent scene stems in part from its violation of more
mainstream cinematic conventions regarding sexual expression and desir-
able bodies, but also from the suggested partial exchangeability of horses
and humans, and the repeating reference to the exposure of the viewer in
a compromised position.
An additional sequence of symbolic substitution takes place at the end
of the film, when a woman wearing a black lace veil over her face comes
to tell the man of the accident, and the death of Ascen. The shot of the
woman’s head and face, shrouded in black lace, rehearses the film’s final
image, in which the blood covering Ascen’s face appears similarly lace-like. In
chronological time, the accident and subsequent death of Ascen necessarily
precedes the arrival of the lace-shrouded woman (figure 5.1). The sequence
116 Susan Antebi

of scenes thus creates a strange temporal reflexivity, in which blood and

lace simultaneously project one another backward and forward in time,
saturating the film’s conclusion with the symbolic weight of death, while
at once reducing lace and blood to a material equivalence, a visible texture.
The structures of symbolic exchange, and interchangeability, traced
through Japón allow us to read the economy of life and death and the
material affectivity of humans and objects in the landscape as additional
layers determining the possibility of a disability studies-inflected analysis of
the film. In a sense, particular sequences invite us to consider relations of
sameness and difference between various humans and objects, and implic-
itly to weigh the loss or death of one, and hence its value, in relation to
another, as well as to assess the potential for new juxtapositions of these
elements, hence the creation of new intercorporeal continuities. In addition,
as I have suggested, both the figurative and the literal landscapes of the film
are marked by a trajectory of coloniality, one that ostensibly determines
the relative values of bodies, and access to needed resources. Through and
against these structures, disability emerges at several key moments as the
representation of particular bodies, but most importantly through the tech-
nique of the filmic interval. I return briefly here to the early scene of the
handheld camera that navigates uneven ground, following the perspective of
the limping protagonist, in order to consider how the interval underscores
an affectively and historically loaded, yet potentially open-ended moment
of exchange, and hence a productively disabled intercorporeality.
The viewer experiences the landscape of grass and rocks through an
unevenly moving frame, and then, from a different angle, witnesses the limp
of the protagonist as he walks.11 We are thus reminded that we accompany
him on his journey, we make the film with him, forced to see through
his eyes while walking in sync with his gait. Yet by pulling back from a
fully fused first-person perspective, the camera both shows us the disabled
man, and shows us the body that we are, and cannot be. The calculated
indifference of this focal shift works because of a deeper and historically
specific economy of substitution and identification. As privileged viewers,
we can be the urban artist on his journey of self-discovery—the generic
cinema-goer par-excellence. Or in slightly different terms, we can be the
disabled wanderer who supposedly seeks his own death, just as his personal
suffering might seem to fuse with the landscape over which he travels, and
its inscribed injustices. But our gaze, our gait, and our intentions cannot
quite match his, even if we happen to experience some self-recognition.
And similarly, he himself remains an outsider to the community and the
landscape, displaced from the metropolis. The limp, as specific embodiment
and marker of disability, is the force of cohesion between shots and projected
 Cripping the Camera 117

identifications, for without this device we, as viewers, might not easily rec-
ognize that the character, cane in hand, is the same one whose perspective
we have embodied as we travel, limping over the landscape, watching the
film. At the same time, it is only through the moment of de-identification,
as the camera shows us the man in a full body shot, and eventually wanders
away, that disability becomes literal and apparent.
Despite the fact that disability as such does not appear initially to be
a major theme in Japón, nor for that matter in Reygadas’s other films, by
focusing on disability here as the central axis in my reading of the film,
my aim has been to propose an approach through which the interactions
and identifications between bodies and objects acquire social, political, and
historical significance, and project new possibilities. This approach centers
on the filmic interval from a disability studies perspective, and argues for
the centrality of disability as a facet of analysis in film viewing practices.
Reading disability in this case as the structure through which bodies and
objects emerge, interact with one another, and establish the possibilities and
limits of identification between viewers and characters, suggests its critical
applicability beyond the film in question.
The work of disability in Japón is ultimately to rehearse the conti-
nuities and ruptures of identification and de-identification, to produce and
reproduce both alliances and differences over a landscape whose objects
and bodies cannot be all the same. Disability, as a constellation of bod-
ies and actions in the film, works at certain points through reference to
religious allegory, or to allegories of historically ingrained oppression. Yet
these corporeal relations are not finally frozen in time. Instead, they ask us
to engage embodiment itself as an opening to new identifications, a fluidly
communicative process, with an as-yet-unmapped trajectory.

Notes

1. The verbal expression of “cripping” comes primarily from Robert McRu-

er’s analysis. See especially his Crip Theory 70–72.
2. Here again, I direct the reader to Tomkin’s emphasis on the interval, and
on Reygadas use of “paratactical articulation” (166).
3. Tomkins refers to Deleuze’s designation of “perception-images” as relat-
ing to nouns, “action-images” relating to verbs, and “affection-images” relating to
adjectives.
4. The authors invoke the work of Roslyn Diprose, specifically her book
titled Corporeal Generosity, the focus of which is more phenomenological than
Deleuzian.
118 Susan Antebi

5. Epplin argues that Reygadas’s other feature films, Batalla en el cielo (2005)
and Stellet Licht (2007) similarly feature nonsacrificial representations of death, as
does his short film, Este es mi reino (2010). Epplin does not discuss Reygadas’s 2012
feature Post tenebras lux as it had not yet been released.
6. Here Epplin mentions Lomnitz’s discussion of the 1982 debt crisis, and
subsequent failures of the government. As Epplin notes: “In such an atmosphere, the
sacrificial sublimation of the dead into the world of the living loses relevance” (292).
7. See Victoria Dickman-Burnett’s essay in this volume for analysis of the
Juárez femicides in relation to disability and global capitalism.
8. Chen’s reading of animacy indicates an affinity with the Deleuzian notion
of “becoming-animal” (146) and in this sense alligns with Shildrick and Price’s
similarly Deleuzian approach.
9. Her name, as she states at the beginning of the film, refers to Christ
who rose up to heaven “without any help from anyone,” as opposed to Asunción,
a reference to the Virgin Mary, whom the angels carried up to heaven.
10. The citation within Skipp’s description comes from Paul Hillier’s Arvo
Pärt.
11. As Tomkins writes: “The shaking image of the ground is almost dizzying,
yet it is naturalized when we notice that the man, who is nearly lame, walks only
with great difficulty, aided by a cane” (161).

Works Cited

Aguilar Mora, Jorge. “Novela sin joroba.” Revista de Crítica Literaria Latinoameri-
cana. 33.66 (2007): 225–248. JSTOR. Web. December 7, 2012.
Chen, Mel. Animacies: Biopolitics, Racial Mattering, and Queer Affect. Durham: Duke
UP, 2012.
Epplin, Craig. “Sacrifice and Recognition in Reygadas’s Japón.” Mexican Studies/
Estudios Mexicanos 28.2 (2012): 287–305. JSTOR. Web. December 13, 2012.
Erevelles, Nirmala. Disability and Difference in Global Contexts: Enabling a Trans-
formative Body Politic. New York: Palgrave, 2011.
Grech, Shaun. “Disability and the Majority World: A Neocolonial Approach.” In
Disability and Social Theory: New Developments and Directions. Edited by Dan
Goodley, Bill Hughes and Lennard Davis. New York: Palgrave, 2012, 52–69.
Hillier, Paul. Arvo Pärt. Oxford: Oxford UP, 1997.
Japón. Directed by Carlos Reygadas, Mexico, 2002.
Kantaris, Geoffrey. “Cinema and Urbanías: Translocal Identities in Contemporary
Mexican Film.” Bulletin of Latin American Research. 22.4 (2006): 517–527.
Web. December 15, 2012.
McRuer, Robert. Crip Theory: Cultural Signs of Queerness and Disability. New York:
New York UP, 2006.
Mitchell, David, and Sharon Snyder. Narrative Prosthesis: Disability and the Depen-
dencies of Discourse. Ann Arbor: U of Michigan P, 2003.
 Cripping the Camera 119

———. “The Eugenic Atlantic: Race, Disability and the Making of an International
Eugenic Science, 1860–1945.” Disability & Society 18.7 (2003): 843–864.
Taylor & Francis Online. Web. October 20, 2011.
Quijano, Aníbal. “Coloniality of Power, Eurocentrism and Latin America.” Nepantla:
Views from the South 1.3. (2000): 533–580. Project Muse. Web. December
15, 2011.
Rodríguez-Sarmiento, Víctor Manuel. “La colonialidad del placer: Experiencias
artísticas desde América Latina para un mundo queer.” South by Midwest
International Conference on Latin American Cultural Studies. St. Louis,
Missouri, March 28, 2013. Conference Presentation.
Rowlandson, William. “The Journey Into the Text: Reading Rulfo in Carlos Reyga-
das’ 2002 Feature Film, Japón.” The Modern Language Review 101.4 (2006):
1025–1034. JSTOR. Web. March 15, 2012.
Rulfo, Juan. Pedro Páramo. Translated by Lysander Kemp. New York: Grove, 1969.
Shildrick, Margaret, and Janet Price. “Deleuzian Connections and Queer Corporeali-
ties: Shrinking Global Disability.” Rhizomes 11/12 (Fall 2005/ Spring 2006).
Web. May 15, 2013.
Skipp, Benjamin. “Out of Place in the Twentieth Century: Thoughts on Arvo Pärt’s
Tintinnabuli Style.” Tempo 63.249 (2009): 2–11. Scholars Portal. Web. May
15, 2013.
Tomkins, Cynthia. Experimental Latin American Cinema: History and Aesthetics.
Austin: U of Texas P, 2013.
 Chapter 6

Bodily Integrity, Abjection, and the

Politics of Gender and Place in
Roberto Bolaño’s 2666

Victoria Dickman-Burnett

The story surrounding Vincent Van Gogh’s removal of his own ear has
contributed to a certain mythos of the “troubled artist”: a romantically
passionate fellow who totters on the brink of madness as he feels the pain
necessary to motivate him to produce the best possible artwork. Any less
pain, and the artist fades into mediocrity. In Roberto Bolaño’s novel, 2666,
English artist Edwin Johns takes the violation of his bodily integrity a step
further than Van Gogh when he severs his painting hand and displays it
with his final painting in an artistic exhibition. In doing this, Johns has
made the severing of his hand an act of performance art and established
a link between his arm and the embodied experience of painting. Johns’s
hand, like Van Gogh’s ear, raises the question of what is to be made of
the willful self-mutilation of bodily integrity and violence toward the body.
What does it mean to alter one’s own bodily integrity and what are we to
make of Johns’s act against his own body? Why, in a novel full of hidden
meaning is Johns’s self-amputation dismissed as either madness or publicity
stunt because he needed the money?
Within the discussion surrounding Johns’s hand lies the answers to
the violation of bodily integrity elsewhere in the novel, particularly that
of the women of Santa Teresa, a fictional version of the real life Ciudad
Juárez. Johns’s act of self-harm illuminates not only how we understand
bodily integrity within the novel, but also how such mutilation functions

121
122 Victoria Dickman-Burnett

in relation to place and power, reflecting the disproportionate privilege of

Europe and the Global North in relation to Santa Teresa as the gateway to
the Global South. Using critical disability studies to read both the treat-
ment of Johns’s body and the treatment of the murdered female bodies in
the novel enlightens the tenuous, troubled relationship between Europe
and Latin America that Bolaño often explores in his work. Onto the bod-
ies we can map privilege and disprivilege, wealth and poverty, agency and
invisibility; however, issues of disability and embodiment in 2666 cannot
be reduced to simple metaphors. Instead, the novel highlights the politics
of embodiment as indicator of related structures that shape both Bolaño’s
literary world and the world in which we live.
This essay begins with an exploration of Johns’s mutilation from a
disability studies framework, examining the possible explanations offered in
the novel for Johns’s actions. Using transability, a controversial issue in the
field of disability studies, to examine the conversation between Johns and
Piero Morini, a scholar and wheelchair user, better illuminates why Morini,
and consequently the other characters ultimately dismiss Johns’s actions as
incomprehensible or financially motivated. From here I shift focus to the
women of Santa Teresa, using Jasbir K. Puar’s idea of debility to argue that
the culture that made their violent deaths inevitable denies them bodily
integrity and renders them disposable, noting that the contrast between
body-as-art and body-as-waste demonstrates a fault line between Global
North and South in 2666.
Performance and art, abjection and uncanniness converge upon each
other in the self-amputation, but the characters that are familiar with Johns’s
story are unable to make meaning of his actions, and so he is relegated to
the realm of madness, the act treated first as incomprehensible and then
as purely capitalistic. We must move beyond both the conventional under-
standing of Johns’s act (as madness) and the co-opted understanding of the
act (as purely motivated by money), to an understanding that takes into
account the embodiment of abjection, the transformation into the uncanny,
and the control one exerts over one’s body in a context that is informed by
the existing systems of power in a transnational world. Because, as Lisa Jean
Moore and Monica J. Casper write, “Bodies are socially constructed within
social orders, including patterns of dominance and submission along lines
of race, ethnicity, gender, age, and physiological normativity” (1–2), we can
see the intersections of gender, race, and global capitalism crystalized in the
treatment of bodies in 2666.
Johns’s act is a voluntary amputation of bodily integrity and it raises
larger questions of what we make of acts of violence against one’s own body.
The novel offers several responses to Johns’s actions. The implied response
 Politics of Gender and Place 123

is to treat the act as an indicator of mental disability. Given that we later

find Johns in a psychiatric hospital and it is stated that he went mad after
severing his hand, it’s fair to say that there is a good chance that madness
was also a factor in his amputation, but that did not end Piero Morini’s
exploration of Johns’s motive, so it will not end ours. In Visions of Excess,
Georges Bataille explores the severed ear of Van Gogh and sacrificial muti-
lation. He briefly examines the idea of madness in relation to sacrificial
mutilation, stating “But how is it possible that gestures incontestably linked
to mental disorder (even if they can never be seen as the symptoms of a
specific mental illness) may be spontaneously designated as the adequate
expression of a veritable social function, of an institution as clearly defined,
as generally human as sacrifice?” (67). While Johns’s act may have been an
act of madness, like Bataille’s discussion of Van Gogh it can be understood
as a sacrifice, in this case, a sacrifice for Johns’s art, and therefore given
meaning beyond madness.
Couched in paradox, Johns’s actions cause both revulsion and curios-
ity. The commercial success of his exhibit signifies the public’s fascination,
perhaps a Nietzschean fascination with horror—the Dionysian aesthetic that
draws people to that which should repel them. Johns’s artwork is associated
with excess and decadence from his first introduction—he is associated with
the new decadence movement and English animalism, and the act of cutting
off the arm is perceived as an act of extreme decadence, which led other
artists to decadence as well (52–53).1 We see that what repulses the audience
also draws them in. Johns’s artwork spawns an entire movement, his exhibi-
tion is a commercial success, and the previously low-income neighborhood
in which he established his studio quickly becomes gentrified as a result of
his fame. The fascination with Johns outweighs the repulsion and fear, and
so his actions become co-opted by the art community. His hand becomes
a commodity, a piece of art that has monetary value.
As in the case of Van Gogh, Johns’s self-amputation is treated as artistic
eccentricity, though he ultimately uses it to turn a profit. Putting to the test
the old maxim that an artist’s work is more valuable when he is dead, Johns’s
amputation of his painting hand is symbolic suicide, as he has effectively
removed himself from the artistic world. Without dying, he has managed
to create the same level of fame—by more or less guaranteeing that he will
never paint again he has raised the value of his existing paintings, yet he
gets to enjoy this success in a way that no artist has before.2 At the same
time, by featuring his mummified hand prominently in an exhibit with his
last painting, he elevates the act of cutting off his hand into the realm of
performance art. By cutting off the hand for the purpose of the exhibit, he
has linked the hand that paints, his artwork, and his act of self-amputation.
124 Victoria Dickman-Burnett

In his exploration of the performance art of Bob Flanagan, Robert

McRuer examines how Flanagan’s sadomasochistic performance art that
incorporates signs of his cystic fibrosis such as hospital masks is counter-
hegemonic and transgressive in a way that suggests awareness of the pos-
sibility of cooptation of his work by mainstream culture (193). For Johns,
the transgressive performance of self-amputation has been co-opted by a
mainstream culture that has found enjoyment in the shock of the art-
ist’s exhibit while the commercial success of his artwork suggests that the
shock of the audience was also performed. The sterilized response to his
act shows how it has been co-opted, though Johns’s willingness to make
self-amputation into performance art suggests that he is also aware of this
potential and that he is not completely averse to this outcome. Because it
is clear that Johns severs his hand with the intention of displaying it in an
exhibit (he contacts a taxidermist to mummify it in advance and makes up
a story for the hospital after the severing), his art takes on a performative
dimension—he intends for the world to see what he has done to his body.
Like Flanagan’s performance art, Johns’s work also pushes the boundaries
of art, attempting to make his audience uncomfortable with the limits of
pain and the human body. Johns and Flanagan both perform disability as
part of their artwork in their own way—Johns even goes to the extreme
of acquiring a physical disability in the process of creating his masterpiece.
Rosemarie Garland-Thomson writes, “Disability, then, is the attribu-
tion of corporeal deviance—not so much the property of bodies as a product
of cultural rules about what bodies should be or do” (6). Johns’s artwork is
the performance of such corporeal deviance. Before he severs his arm, his
body (presumably) conforms in appearance to the cultural rules that mark
out the nondisabled person, whom Garland-Thomson calls the normate.
The implied presence of mental disability complicates Johns’s ostensibly self-
transformative act, yet in the act of cutting off his hand for his masterpiece,
Johns has transformed his physical body from conforming to deviant.
Johns’s hand has special significance precisely because it is the hand of
a painter, a hand used to create masterpieces. The hand is able to become a
work of art because it represents the ability to create artwork—Johns’s talent
and artistic genius3 is embodied in his hand. To put it simply, the hand is
elevated to the level of artwork because of its connection to artwork. Were
anyone who is not an artist to put his or her severed hand on display, it
would not be received the same way—the fact that it is an artist’s hand,
severed with the purpose of creating art makes it meaningful. Were we to
replace the hand of the artist with a hand severed in an industrial accident at
a maquiladora, for instance, the significance of the severed hand as artwork
 Politics of Gender and Place 125

would be lost, speaking to both Johns’s privilege as an artist in the global

North, and also to the painterly hand as the embodiment of its ability.
Piero Morini is perhaps the only character in the novel with an openly
discussed physical disability, as a wheelchair user who also experiences tem-
porary blindness at various times in the first section of the novel. He is also
the only character who interacts with Edwin Johns, and he soon chalks the
self-amputation up to purely financial motives (Bolaño 97). Ultimately, the
Morini/Johns encounter strikes a parallel with the conversation surround-
ing the idea of transability. On the subject of transability, Bethany Stevens
writes, “Transabled people are individuals who need to acquire a physical
impairment despite having been born or living in physically unimpaired
bodies” (“Interrogating Transability”). She links transability to art through
body modification, contending that disability can be body art and that
“Including transability within the spectrum of body modification provides
a useful point of departure to begin to consider disability as body art”
(“Interrogating Transability”). However, many people with disabilities are
resistant to the idea of transability, Stevens notes, adding that she herself
is hesitant and conflicted about the subject. The idea of disability as art is
especially useful when discussing Johns. Perhaps, the fascination and failure
to understand Johns that Morini experiences arises from similar skepticism
to the idea of voluntarily acquiring a new disability. When the two meet,
the first thing each notices about the other are the indicators of disability:
Morini’s wheelchair, the absence of Johns’s right hand (Bolaño 89). In the
exchange the two talk past each other, Johns asking twice, “Do you think
you’re like me?” and Morini responding that he is not, suggesting that nei-
ther is sure what to make of the other or how they should relate to each
other, mirroring disjunction between the disability rights community and
people who identify as transabled (Bolaño 91).
Johns’s act engages both abjection and the uncanny. For Julia Kristeva,
the point of intersection between these two is the corpse, which is of the
body, resembling the self, yet not the self. Kristeva says of corpses, “There
I am at the border of my condition as a living being. My body extricates
itself, as being alive, from that border. It is no longer I who expel, it is ‘I’
that is expelled” (3). The body without life is uncanny: it resembles the liv-
ing body but the element that makes it human—recognizable, familiar—is
gone. On this subject of death and the uncanny, Sigmund Freud writes,
“To many people the acme of the uncanny is represented by anything to
do with death, dead bodies, revenants, spirits and ghosts” (148). In sever-
ing his hand, Johns has created a hand-corpse, dividing his body (familiar)
from the newly amputated limb. The process of creating the hand-corpse
126 Victoria Dickman-Burnett

is a symbolic death. In Animacies, Mel Y. Chen notes the role hands play
as indicators of humanness, emphasizing a strong connection between the
hand and creativity. Johns’s “creative death” is thus twofold: in creating a
hand-corpse he has ended his creative capacity in the eyes of the world and
he has severed a symbol of his humanity (119).
Just as Kristeva treats the corpse as waste, the discovery that the non-
living body is nothing more than matter, that there is little separating a
living being from abject waste is intrinsically linked to Johns’s artwork.
Death transforms people into bodies—corpses—abject, lifeless matter. This
encapsulates the horror surrounding Johns’s hand: by cutting off his hand
he has not only harmed his body, he has also made his hand, a part of
himself, into an object, which he treats as a work of art rather than garbage.
However, other bodies throughout the novel are treated as garbage when
they are quite literally thrown away by their murderers.
Gloria Anzaldúa characterizes the border between Mexico and the
United States as an open wound (25), embodying the social problems that
arise at the intersection between Global North and South as a sore, a site
of pain. In 2666 the Santa Teresa murders, a loosely veiled fictionaliza-
tion of the real life murders in Ciudad Juárez, again shows the body as an
object, cast aside and removed from all life, with little evidence of previous
humanity. As Laura Barberán Reinares notes in her article no heroine ever
emerges in the novel, because we never meet the women who die, we only
find their bodies after the fact (62). The women of Santa Teresa are not
just disposable; they have already been thrown away. Reinares’s analysis of
2666 converges on Kristeva’s study of the corpse as the “most sickening of
waste,” paying special attention to the fact that only corpses remain. Johns’s
corpse hand is the first signifier—in symbolically murdering himself, Johns
has been left with a partial corpse, which he proudly displays for the world
as a work of art. In contrast women’s bodies are discovered only after they
have been discarded as waste.
If we compare the violent alteration of Johns’s bodily integrity to
the violation of the bodies of the women found in Santa Teresa, agency is
the key difference between the two. Motive aside, Johns’s self-amputation
was an autonomous act. Johns has chosen to cut off his own hand, and
regardless of the harm done to his body, he has had control of his course
of action. While he may have made himself abject in the process, he is the
one responsible for his actions. The women of Santa Teresa, on the other
hand, are disposable to their society. There will always be more than enough
people to work in the maquiladoras and the tasks that they perform there
are not so difficult that any one of them is indispensible. The intersection
of globalization and general capitalistic excess has created a world where an
 Politics of Gender and Place 127

entire class of people, mostly female, does not matter, and faces the margin-
alizing forces of global capitalism as it colonizes Santa Teresa. Johns wields
control over his body that the women of Santa Teresa will never experience.
The female bodies that continue to be found in Santa Teresa high-
light the disposability of the female body within the novel. In addition to
the sheer number of women who vanish, only to be found as corpses, the
narration of the novel further supports the claim that the female body is
disposable in Santa Teresa. “The Part about the Crimes” is devoted to the
account of the femicides. There is little central plot beyond chronicling the
bodies and the half-hearted attempts of the police to solve the murders of
women. The narration of the crimes is interrupted by an episode in which
the police officers tell sexist jokes about women that often advocate rape
or domestic violence (Bolaño 552–553). The episode does not advance the
plot in any way, but it highlights the prevailing attitudes toward women
by the police.
Zygmunt Bauman’s discussion of the increase of superfluous human
beings as the by-product of modernity offers explanation for the growth in
numbers of refugees and other displaced persons. While many of the young
women from Santa Teresa had individual families who were looking for
them, most of the murders go unsolved, because the police are unwilling
to devote department resources to finding their killers. Cynthia L. Bejarano
discusses the role of maquiladoras and globalization in the murders in Ciu-
dad Juárez, suggesting that global capitalism plays a role in the murder of
the women in Juárez.4 She contends,

I see these communities as an extension of myself and wanted to

expose the underbelly of “the new era of globalization and prog-
ress” veiled in the maquiladora industry, which is acted out—
unintentionally or not—through the exploitation and killing of
young brown women, while highlighting the “organic” lead-
ership powers emanating from subaltern/colonial shantytown
communities through the mothers of these disappeared young
women. The racialized, sexualized, and gendered practices along
the borderlands within and around the global economy and the
production of the maquiladoras prompted me to investigate these
social and cultural diseases. (405)

Bejarano identifies globalization as responsible for the localization of vio-

lence, noting that the maquiladoras give rise to shantytowns, impermanent
living conditions and displaced persons, a dynamic not overlooked in 2666
(404–405). Just as Bauman contends that refugees are lives gone to waste,
128 Victoria Dickman-Burnett

that is to say their displacement results in their inability to be productive

members of an increasingly globalized world, residents of a shantytown are
refugees of globalization itself. Global capitalism and the overabundance of
unskilled laborers for the maquiladoras have destabilized life in Juárez/Santa
Teresa, and made it possible for people to be refugees in their own land.
The skewed focus of the police leading to the murders of the women
of Santa Teresa going unsolved has further manifestations that can be seen
in “The Part about the Crimes.” For example, when the detectives of the
Santa Teresa police force pursue an unknown man given the pseudonym
“the Penitent” for defiling churches with excrement, the utter lack of power
of the women of Santa Teresa becomes evident. The targets of the Peni-
tent’s crimes are church relics, not people. Yet these crimes are taken more
seriously than the crimes against the women. This is because the church
holds more power in society than the women who work in the factories of
Santa Teresa. Additionally, the Penitent’s actions defile the holy relics of the
church, creating more fear in Santa Teresa because of the role those relics
play as part of the Catholic religion, which provides order and security
in Santa Teresa. Excrement plays a role in abjection because it is expelled
from the body; it is quite literally what the body rejects because it has no
use for it. The Penitent incidents exemplify the idea that when the abjec-
tion of excrement intersects with the idea of the sacred or holy, the result
is defilement.
Kristeva positions defilement as the “Two-Sided Sacred,” noting that
an object or ritual cannot be sacred without the possibility of being defiled,
with the possibility of defilement arising from a number of sources, specifi-
cally excrement and menstruation (57–58). She writes, “excrement and its
equivalents . . . stand for the danger to identity that comes from without:
the ego threatened by the non-ego, society threatened by its outside, life by
death” (71). Likewise, the Penitent is positioned outside of society, believed
to be harmless, yet hostile to religion (here representing order), and given to
impulses (Bolaño 382). In contrast to the defilement arising from excrement
is the defilement arising from menstruation, which she asserts, “stands for
the danger issuing from within the identity (social or sexual); it threatens
the relationship between the sexes within a social aggregate and, through
internalization, the identity of each sex in the face of sexual difference” (71).
Both the Penitent and the women of Santa Teresa represent a type of defile-
ment through abjection, and while conventional wisdom would suggest that
the murders of multiple women pose more of a threat than someone who
defiles holy relics, the police treat the Penitent as if his crimes have much
more gravity because he promotes abjection, while the murders dispose of
bodies, which have been deemed abject because of their femaleness.
 Politics of Gender and Place 129

The abjection of the women in 2666 makes them a source of fear in

Santa Teresa. Elvira Campos, the psychologist consulting the police in the
Penitent case offers the following opinion, “Or gynophobia, which is fear
of women, and naturally, afflicts only men. Very widespread in Mexico,
although it manifests itself in different ways. Isn’t that a slight exaggeration
[Juan de Dios Martinez interjects]? Not a bit: almost all Mexican men are
afraid of women” (382). Kristeva contends that women’s abjection leads to
fear of women because of her “generative power” as a mother. The fear of
women in Santa Teresa has led to widespread violence against them. The fear
of women that Campos discusses is responsible not only for the murders,
but for the fact that no one seems to care that women are being murdered.
“The Part about the Crimes” chronicles several hundred deaths, and while
the police do investigate the crimes, there is no acknowledgment of the
underlying problems that are responsible for the deaths of women. Elvira
Campos compares Juan de Dios Martinez’s denial of her claim of wide-
spread gynophobia in Mexico to symbolic optophobia (the fear of opening
one’s eyes). Dios Martinez is so afraid of what his admission of male fear
of women would say about him that he and the rest of the police force
are unable to admit to the problem. This is not because the information is
unavailable to them, but because they refuse to open their eyes.
Jasbir K. Puar introduces the idea of debility from Lauren Berlant’s
idea of slow death, which she defines as “the debilitating ongoingness of
structural inequality and suffering” (“The Cost of Getting Better” 177).
While debility or slow death has not been applied to violent environments
in the past, it stands to reason that there are certain types of inevitable
deaths that would also result in debility. The women of Santa Teresa illus-
trate such inevitable death—because they are superfluous, there is a sense
of inevitability to their death and subsequent disposal, as illustrated in the
second and third section of the novel when Amalfitano expresses his fears
for his daughter in this dangerous environment. Whether the women die
or survive does not change this debility, because all live with the constant
threat of a violent death, and as superfluous persons, they are interchange-
able, and any of the women who survive could have easily been one who
did not survive. They thus encounter “structural inequality and suffering,”
at the hands of global capitalism and modernity.
Debility is also apt when discussing the women of Santa Teresa
because it destabilizes the binary between disability and ability. As Puar
notes elsewhere,

The political mandate behind such rethinking about disability—

or, as I argue, a move from disability to debility—would not be
130 Victoria Dickman-Burnett

to disavow the crucial political gains enabled by disability activ-

ists globally, but to invite a deconstruction of what ability and
capacity mean, affective and otherwise, and to push for a broader
politics of debility that destabilizes the seamless production of
abled-bodies in relation to disability. (“Prognosis Time” 166)

Because, as Garland-Thomson notes, able-bodiedness has traditionally been

defined by male standards, a collapse of the binary between able-bodiedness
and disability is useful in examining the women of Santa Teresa. Debility
completely refigures how we look at embodiment and ability, and the wom-
en of Santa Teresa, as women, as persons in the Global South, as persons
made redundant through globalization and late capitalism, have diminished
capacity that partially excludes them from the realm of the able-bodied.
The narration of the fourth section of the novel, which is devoted
to the crimes themselves, can be difficult to follow because the murders
are detailed with clinical precision, stripped of the pathos associated with
murder, offering a factual depiction of the events of the murders that seems
more fitting for a police report than a work of fiction. However, the style of
narration employed in “The Part about the Crimes” emphasizes the abjec-
tion and disposable nature of the women. While this section attempts to
chronicle all of the murders that occur in Santa Teresa since the first body
was found, it begins with a caveat that suggests the larger problem:

This happened in 1993. January 1993. From then on, the kill-
ings of women began to be counted. But it’s likely there had
been other deaths before. The name of the first victim was Espe-
ranza Gómez Saldaña and she was thirteen. Maybe for the sake
of convenience, maybe because she was the first to be killed in
1993, she heads the list. Although surely there were other girls
and women who died in 1992. Other girls and women who
didn’t make it onto the list or were never found, who were
buried in unmarked graves in the desert or whose ashes were
scattered in the middle of the night, when not even the person
scattering them knew where he was, what place he had come
to. (353–354)

In hindsight, Esperanza Gómez Saldaña was the first of the bodies to be

counted not because she was the first murder, but because she was the first
murder that suggested that the murders of women were a trend. Her status
of being “the first victim” is contingent on the existence of other victims,
 Politics of Gender and Place 131

and it is the awareness of a pattern, not the first murder, that her death
commemorates. The narrator raises the question of the nature of the list,
revealing just how easy it is to throw away the women of Santa Teresa,
who wound up in unmarked graves, superfluous lives that were denied
acknowledgment.
While the narration about the bodies does not eulogize the lives of the
women, it reflects awareness about the women’s being treated as disposable,
and therefore serves to rectify the way their deaths seemed to “throw them
away.” While the narrator’s tone does not reanimate long-dead corpses, it
does offer details about the lives that would have been passed over in the
anonymity of unmarked graves. Not all of the women are identified, but
the narrator makes an attempt to reunite the bodies with the memory of
their former lives and with an awareness of their identities. It is difficult to
remember a single name given the sheer number of women who have been
murdered, but the accounts of the crimes make clear that these bodies were
at one time more than the “waste” they appear to be in their final state.
Because the women of Santa Teresa can be thrown away, we need not see
them alive, we need not get attached. As superfluous persons they have no
hope of survival; the individual lives before their deaths are measured by
the brief description of the bodies found mutilated in shallow graves.
Chen’s discussion of animacy hierarchies is particularly apt in a discus-
sion of the women of Santa Teresa. Because the women in the fourth section
are from the Global South and are superfluous persons in the perpetuation
of global capitalism, they are already lower on an animacy hierarchy than
Johns, a man from the Global North who is able to make a living as an
artist. The fact that the women are introduced as dead bodies gives them an
even lower standing on the animacy hierarchy than if they were alive when
introduced. The clear difference between the embodiment of Johns’s art and
the embodiment of the women of Santa Teresa is that they are inanimate
from the very beginning, which is a clear statement of the agency and value
of the women of Santa Teresa.
Johns is animate, he gets to speak, to act. The reader is introduced
to him and sees his death. In contrast the women of Santa Teresa are not
given a voice or even a live presence. Not only do they never speak, the
reader never as much as sees them silently going through their lives before
their murders. Never once do we see the “before” to compare it to the
gristly “after.” However, Bolaño subtly subverts the dichotomy of animacy
he has created, and while he reports the deaths with extreme detachment
and almost scientific precision, he manages to continually remind the reader
of the women’s humanity, giving them names and attaching humanity to
132 Victoria Dickman-Burnett

the bodies that have been discarded. The narrator often includes the reac-
tions of friends and family, allowing the reader to see that these women
were loved and valued by someone, often someone who can do nothing
about their deaths.
2666 presents the reader with a conundrum: the body is art, but the
body is also waste, and little separates the two. Is it the fact that Johns is
an artist and his painterly hand embodies the talent with which he painted
that makes his severed hand art while the bodies of the women of Santa
Teresa are discarded as waste? Is the hand art because Johns called it art and
people believed him? Does the fact that the hand is art mean that it is not
waste? And perhaps the most pressing question of all: in writing “The Part
About The Crime,” has Roberto Bolaño elevated the bodies of the women of
Santa Teresa to the realm of art in a fashion similar to that of Edwin Johns’s
elevation of his own severed hand? The parallels between Bolaño and Johns
carry the risk of undermining the subtle critiques of the violence toward
the women of Santa Teresa as an attempt to make art out of bodies. Johns
is not Bolaño’s perfect double, as the former uses his own body as material
for creating his masterpiece, while Bolaño has used the bodies of women
who are disenfranchised by where they are positioned geopolitically, bodies
that global capitalism has rejected, bodies discarded in deserts, and, per-
haps most importantly bodies that correspond to real bodies of the women
murdered in Ciudad Juárez. We can speak of Johns as elevating the body
to the realm of art, because it is his body, but when the bodies that make
up the art are those of the disenfranchised, who have no way of consenting
to be art and have become part of the work of art because of the violent
nature of their life, and the invisibility of their death, has Bolaño elevated
their bodies at the expense of devaluing their lives? Is Bolaño guilty of the
same dehumanization responsible for the environment that led to the violent
deaths of hundreds of women? There is no easy answer, but the accounts
of the misogyny of the policemen and the conversations between Campos
and Dios Martinez suggest a greater awareness of the problems in Santa
Teresa that led to the deaths. In his work, Bolaño often grapples with the
relationship between Europe and Latin America, Global North and South,
privilege and invisibility, and 2666 is no exception. Positioned at the inter-
section of all of these elements, the women of Santa Teresa illuminate the
complexity of how each relates to the others. Unfortunately the women are
never given the opportunity to speak, and so we do not see an exchange
between Bolaño (or his alter-ego Belano) and the women to mirror the
exchange between Morini and Johns. But it is not difficult to imagine the
writer asking the women “Are you like me?” only to be met with silence.
 Politics of Gender and Place 133

Notes

1. Such artistic movements do not exist outside the world of 2666. Although
there are artists whose work mirrors that of Johns, because we get no real description
of his artwork other than his mummified hand, to comment on his other artwork or
link him to real world artistic movements would involve a great deal of conjecture.
2. While Johns could learn to paint again in another way, he has at least
created the illusion of being unable to paint again.
3. If it exists. The reader is not informed of the quality of Johns’s other
paintings.
4. Because there is a clear link between Santa Teresa and Juárez in the
critical conversation surrounding 2666, scholarship regarding the women of Juárez
is applicable to my analysis of the role of women in 2666.

Works Cited
Anzaldúa, Gloria. Borderlands/La Frontera. San Francisco: Aunt Lute Books, 2007.
Bataille, Georges. Visions of Excess. Translated by Allen Stoekl. Minneapolis: U of
Minnesota P, 1985.
Bauman, Zygmunt. Wasted Lives. Cambridge: Polity Press, 2004.
Bejarano, Cynthia. “Las Super Madres de Latino America: Transforming Mother-
hood and Houseskirts by Challenging Violence in Juárez, México, Argentina,
and El Salvador.” In Violence and the Body: Race, Gender, and the State. Edited
by Arturo Aldama. Bloomington: Indiana UP, 2003, 404–428.
Bolaño, Roberto. 2666. Translated by Natasha Wimmer. New York: Picador, 2008.
Casper, Monica J., and Lisa Jean Moore. Missing Bodies: The Politics of Visibility.
New York: New York UP, 2009.
Chen, Mel. Y. Animacies: Biopolitcs, Racial Mattering, and Queer Affect. Durham:
Duke UP, 2012.
Freud, Sigmund. The Uncanny. Translated by David McLintock. 1919. New York:
Penguin, 2003.
Garland-Thomson, Rosemarie. Extraordinary Bodies: Figuring Physical Disability in
American and Literature. New York: Columbia UP, 1997.
Kristeva, Julia. Powers of Horror: An Essay on Abjection. Translated by Leon S.
Roudiez. New York: Columbia UP, 1982.
McRuer, Robert. Crip Theory: Cultural Signs of Queerness and Disability. New York:
New York UP, 2006.
Puar, Jasbir K. “Prognosis Time: Toward Geopolitics of Affect, Debility, and Capac-
ity.” Women and Performance: A Journal of Feminist Theory 19.2 (2009):
161–172. JSTOR. Web. March 15, 2013.
———. “The Cost of Getting Better.” The Disability Studies Reader. 4th ed. New
York: Routledge, 2013, 177–185.
134 Victoria Dickman-Burnett

Reinares, Laura Barberán. “Globalized Philomels: State Patriarchy, Transnational

Capital, and the Femicides on the US-Mexican border in Roberto Bolaño’s
2666.” South Atlantic Review 75.4 (2010): 51–52. JSTOR. Web. September
19, 2012.
Stevens, Bethany. “Interrogating Transability: A Catalyst to View Disability as Body
Art.” Disability Studies Quarterly 31.4 (2011): n.p. Web. April 15, 2013.
 Chapter 7

Violence, Injury, and Disability in

Recent Latin American Film

Victoria L. Garrett

Introduction

In the last decades Latin American film has met unprecedented international
success. Despite important changes in production and distribution methods,
as well as marked aesthetic differences, a significant number of films contin-
ue to advance the agenda of the New Latin American Cinema of the 1960s
and 1970s defined by Ana M. López as: “a pan-Latin American cinematic
movement dedicated to the people of the continent and their struggles for
cultural, political, and economic autonomy” (136). Although, as Luisela
Alvaray details in her incisive essay on contemporary Latin American film,
globalization has complicated the question of autonomy, the commitment
to probing Latin American social realities remains central to an important
body of films. Within this body, a number of such socially committed
films privilege the image of disability to carry out critiques of physical
and structural violence in the last half century. This chapter analyzes the
relationship between the representation of injured bodies and political and
social critiques in El violín (The Violin, directed by Francisco Vargas, 2005)
and La teta asustada (The Milk of Sorrow, directed by Claudia Llosa, 2009).
The disabilities of the protagonists of both films intersect with their racial,
social, aged, gendered, and/or political alterity to indict the social injustice
existing in their respective societies.
Through an analysis of these two films, this essay seeks to intervene
in critical debates on disability in postcolonial contexts to consider how

135
136 Victoria L. Garrett

recent Latin American cinema treats the injury that results specifically from
structural violence and violent States. The exemplary films El violín and La
teta asustada engage with key facets of two intricately connected periods:
the dirty wars of the 1960s through the 1990s and globalized societies after
neoliberal structural adjustments from the 1980s to the present. In these two
contexts, disability makes visible the processes by which authoritarian and
capitalist regimes actively produce precarious bodies. Moreover, by reading
cinematic fictions of human rights and neoliberalism through the lens of
disability studies, this essay examines the metaphor of healing to call for
future societies that produce more socially just conditions instead of injury.
Finally, I address the cultural solutions proposed in El violín and La teta
asustada as key to this metaphoric social healing.

Disability in Global Contexts

The field of disability studies is very much in dispute and has received
important critiques. Substantial claims have been made that since its emer-
gence in the 1980s and 1990s, the field has been dominated by the concerns
of white scholars, writers, and activists predominantly from the first world
(Bell 3). Clare Barker and Stuart Murray note that the field’s limited scope
is especially glaring in postcolonial contexts, where “the history of colonial-
ism (and its post/neocolonial aftermath) is indeed a history of mass disable-
ment . . . and the acquisition of disability may be tied into wider patterns
of dispossession—the loss of family, home, land, community, employment”
(230).1 They posit that adverse material environments and historical contexts
problematize key assumptions of the field, such as the blanket rejection of
medical discourses since the rise of the social model of disability, which
can hold importance for raising awareness of (neo)colonial abuses (230).
Likewise, in her groundbreaking study Disability and Difference in
Global Contexts, Nirmala Erevelles significantly expands the race-based cri-
tique of disability studies to consider also class and material inequality.
Though she focuses on case studies in the context of the United States, she
develops an important theoretical framework relevant for the Latin American
context. Drawing on political economy, theories of difference, queer theory,
and postcolonial theory, she “situate[s] disability as the central analytic, or
more importantly, the ideological linchpin utilized to (re)constitute social
difference along the axes of race, gender, and sexuality in dialectical rela-
tionship to the economic/social relations produced within the historical
context of transnational capitalism” (6). Noting that in advanced capitalism
 Violence, Injury, and Disability in Recent Latin American Film 137

one’s experience of disability and possibility of survival depend heavily on

economic realities conditioned by unequal social relations of class, Erevelles
argues that disability must be studied in tandem with the historical condi-
tions of diseases (12–17). She underscores the connection between high
rates of disability in the Global South and adverse conditions such as high
incidence of war, unhealthy living conditions, natural disasters, and pollu-
tion (18). Erevelles brings such historical material conditions to bear on
theories of disability in order to complicate postmodern theories of posthu-
manism, such as those of Gilles Deleuze and Felix Guattari, who embrace
the disabled subject as “an unstable and transgressive Body-without-Organs
(BwO)” for its capacity to deconstruct the norm (27). By considering physi-
cal and structural violence in relation to how disability is actively produced
in many cases, as well as how socioeconomic inequality affects access to care
and healing, she effectively exposes the limits of postmodern conceptions of
disability in contexts of violence (16). Wary of the pitfalls of ableism2 and
of an implicitly genocidal desire for the disappearance of disabled people,
she still cautions that disability can only be desired in a historic context
“that does not reproduce economic exploitation on a global scale” (29).
Erevelles blames transnational capitalism for exacerbating disability,
which makes it a problem to overcome rather than a difference to be cel-
ebrated. She coincides with critics from other fields, such as Tauti Heron
and Tina Mai Chen, in a strong critique of transnational capitalism as the
current global order that reproduces the social and economic exploitation
to which Erevelles attributes the production of disability. In her discussion
of how human agency has been diminished in the context of neoliberalism,
Tauti Heron recalls that violence and making certain bodies matter more
than others have been at the root of capitalism since its birth with the
colonization of the Americas in the sixteenth century. The neoliberal values
system that calculates worth based on the potential for capitalist accumula-
tion produces lives that do not matter in the Global South if they stand
in the way of accumulation (90).3 Tia Mai Chen signals another peril of
neoliberalism in the fantasy that equates “inclusion” (i.e., market integra-
tion) with liberation:

As critical feminists have long argued with respect to gender, and

which is equally applicable to race and ethnicity, inclusion does
not necessarily redress inequality nor does it produce equality.
Adding to a never-ending list of members in “the global village”
merely draws peoples into the capitalist system, complete with
racial, patriarchal, and global unevenness[, . . .] cedes too much
138 Victoria L. Garrett

ground to a universalized neoliberal subject[,] and ignores the

subject’s particular ideological, economic, and cultural location.
(13–14)

Though she does not mention disability alongside gender, race, and ethnic-
ity, her comments on the uneven power relationships in neoliberalism are
pertinent here. Her critique of inclusion undermines the premises of identity
politics sometimes associated with disability activism and scholarship but
actually parallels disability studies’ strong critique of reinforcing normalcy,
or ableism as constituting an affront to embodied diversity. Moreover, she
also signals the intricate relationship between neoliberal capitalism and mili-
tary force: “the coexistence of conspicuous consumption, free trade, and
military force, in the Cold War and now, is yet another internal relation
of globalization and popular culture” (12). As Erevelles argues, as long as
lives are evaluated based on the productive calculations of neoliberalism, the
lives of those with disabled bodies will continue to matter less than those
considered able-bodied, who are deemed a valued investment rather than a
liability to the State. Additionally, disability will continue to be produced
by the violence that sustains capitalist accumulation.
In the colonial period, the Cold War, and under globalization, Latin
America has been a select battleground of the West’s civilizing project, both
through military interventions and as a laboratory for neoliberal structural
adjustment experiments. As Erevelles and Heron have argued, both have
produced disability, exacerbated inequality, limited people’s access to modes
of redressing disability, and passed the cost of care onto the most vulner-
able sectors. According to the aforementioned critiques of neoliberalism and
globalization, neither the posthuman, which dissolves identity to celebrate
difference, nor identity politics, whose politics of inclusion lacks a critique
of the neoliberal subject, provide adequate models for addressing disability
in contexts of social injustice. Rather, one must engage the violence of
capitalism and its mechanisms for producing bodies and assigning them
value in order to advance an egalitarian, nonviolent ethos. In this way,
the above approaches resonate with Judith Butler’s critical concern with
why some bodies matter more than others. Though some disability studies
scholarship has drawn explicitly on Judith Butler’s Gender Trouble, drawing
parallels between performative identities of gender and ability (McRuer 10,
Meekosha and Shuttleworth 60), I argue that disability studies—at least in
postcolonial contexts—could also be enriched by her more recent writings
on the United States’ war on terror.
In her philosophical writings on torture after September 11, 2001,
Butler has called for an ethics grounded in the shared precarity of the body.
 Violence, Injury, and Disability in Recent Latin American Film 139

Such an ethics would recognize a universal human responsibility to care

equally for the vulnerable bodies and lives of others:

each of us is constituted politically in part by virtue of the social

vulnerability of our bodies—as a site of desire and physical vul-
nerability, as a site of a publicity at once assertive and exposed.
Loss and vulnerability seem to follow from our being socially
constituted bodies, attached to others, at risk of losing those
attachments, exposed to others, at risk of violence by virtue of
that exposure. (Precarious 20)

From this fragility, she argues, emerges the potential to “crucially reart-
iculate the possibility of democratic political culture here and elsewhere”
(40). In her subsequent text Frames of War, Butler posits the importance
of representation, or of framing lives in certain ways, to alter relationships
in which some matter more than others and thus are differentially exposed
to violence and injury. In the global context of armed conflict, it is pre-
cisely this differential exposure—which she terms “precarity”—to violence in
bodies that do not “matter” that produces injury and, thus, some forms of
disability. By drawing on Butler’s interventions on precarity, the perspective
of Disabilities Studies would shift from how disability is valued in society
to how one’s value determines one’s relationship to disability. This critical
approach would emphasize the shared condition of injurability as well as
advance a commitment to refrain from exploiting the vulnerability of others.
Through a privileged image of the disabled body, the recent Latin
American films studied here make such an intervention in the way lives
are framed and, consequently, valued. They foreground some of the ways
in which both the dirty wars of the Cold War period and neoliberalism
(as well as colonial legacies in which these are grounded) violently produce
disabled bodies in peasant communities.

War and Disability

Francisco Vargas’s 2005 critically acclaimed debut feature film El violín

addresses the Mexican guerrilla period (1960s to 1970s) to establish a direct
relationship between war and disability.4 The narrative of this neorealist
black-and-white low-budget film follows three generations of a family of
musicians and peasant corn farmers in their struggle against the Mexican
military occupation of their community’s land. Don Plutarco, patriarch of
the family, refuses to let his old age and injured body—he has no right
140 Victoria L. Garrett

hand—relegate him to the role of raising his grandson Lucio while his son
Genaro participates in the rebellion as a guerrilla leader.5 Instead, he uses
the pretext of tending to his cornfield to slip past the occupying soldiers
so that he can smuggle weapons out of the field, and he ends up playing
a vital role.
The film establishes an implicit link among socioeconomic inequal-
ity, war, and disability through Plutarco. His character is introduced in the
context of the Mexican guerra de baja intensidad in Guerrero, which took
place during the 1960s and 1970s in the broader contexts of widespread
Mexican State violence and of the Cold War.6 Though Plutarco is never
subjected to violence on screen, a parallel is established between the dispro-
portionate exposure to physical violence suffered by other peasants from his
community of corn farmers and his own injury. His old age and high level
of functionality (which suggests that he lost his hand in the distant past)
evoke the specter of the Mexican Revolution of 1910, when he would have
been a young man. His disability is thus linked to a tradition of subaltern
armed resistance in Mexico. In the film as in history, the regions of Mexico
with the largest indigenous populations and the highest rates of poverty,
malnutrition, and illiteracy coincide with both the strongest tradition of
rural guerrilla movements and the most pervasive military occupation and
repression (Montemayor 21–23). His charged silence when a military cap-
tain asks how he lost his hand, coupled with his interrogative response,
“When will you leave us in peace?”7 suggest that the conflict stems from
the nation’s historic cultural impasse that continues to inflict violence on
subaltern communities. His disability is thus both literal and symbolic, serv-
ing as a metaphor for the vulnerable social body of the Mexican peasants.8
In this way, his injurability and resulting physical alterity are inseparable
from his racial, aged, ideological, and socioeconomic marginality.
In addition to situating the armed struggle portrayed in the film with-
in the history of the continued struggle for land and freedom that motivated
peasants like Plutarco to fight in the Mexican Revolution, his character also
institutes powerful links between present challenges and colonial legacies
of structural violence, which perpetuate inequality and lead to continued
exposure to physical violence. El violín uses the trope of a scriptocentric
colonial encounter between Spaniards and the indigenous to illustrate these
links. After their village has been occupied, Plutarco and the young Lucio
visit the patrón (landowner) to ask to buy a donkey that, as the viewer
later discovers, Plutarco will use to ride back to his occupied fields in an
attempt to recover hidden munitions. The patrón and Plutarco address each
other with feigned mutual respect as they negotiate, agreeing verbally that
in exchange for the donkey Plutarco will bring this year’s corn harvest when
 Violence, Injury, and Disability in Recent Latin American Film 141

it is ready. The patrón, however, insists that Plutarco sign a blank document
as a guarantee, stating that he will fill out the contract later. In a perfor-
mative act that evokes the colonial scene in which indigenous people were
divested of their land on the pretext of not holding written titles—a tragic
consequence of their lack of access to the written word in the language of
the conquerors—this moment underscores that people like Plutarco are still
subject to such legal manipulations centuries later.9 The fact that this scene
takes place the day after Plutarco uses Mayan myths to explain to Lucio
their community’s current struggle as a direct continuation of the power
dynamic established in the colonial encounter strengthens this parallel and
highlights Plutarco’s social and political consciousness.10 He is fully aware of
his limited possibilities of maneuvering beyond the physical and structural
violence that mutually reinforce one another and keep indigenous people
in a heightened state of precarity.
Plutarco’s disability, then, intersects with the conceptual link that the
film establishes between the violent legacies of the colonial encounter and
the revolutionary present, as well as with its indictment of the intersection
of non-Western ethnicity and ideology with socioeconomic and physical
precariousness. The mutual reinforcement of these conditions exemplifies the
critical concept of intersectionality, which addresses overlapping structures of
marginality such as race, gender, and ability (Meekosha and Shuttleworth
61). In this context, his disability serves as a powerful visualization of how
the uneven distribution of precarity allows some populations to be differ-
entially exposed to violence.
Any concern with individual healing is conspicuously absent in El
violín. Plutarco is committed to the collective project of defending com-
munal lands, whether it cost him his hand or his life (as it presumably does
at the end of the film). Instead of focusing on individual security through,
for example, rehabilitation or prosthesis, El violín emphasizes the persis-
tence of the violent conditions that create and sustain Plutarco’s physical
precarity—along with that of thousands more like him—and that produce
disability. Instead of focusing on healing, the only solution presented in the
film is to continue resisting, inexorably, with the hope that future genera-
tions will triumph where the previous ones failed. Like the forms of physical
and structural violence that produce the peasants’ intersecting categories of
alterity, Plutarco’s strategies for resistance crisscross categories of socioeco-
nomic class, ethnicity, age, and ability. In Plutarco’s case, he overcomes the
limitation that his disability might have posed by making music, which he
does for both subsistence and resistance. His violin is a source of informal
work and a tool he uses to cross the military checkpoint and attempt to
recover weapons from his field. Though he remains in a position of inferior
142 Victoria L. Garrett

power, within certain limitations Plutarco exploits the soldiers’ prejudices

and presents himself as a harmless (re: old, weak, impotent), innocent man
only interested in continuing his work as musician and farmer. Moreover,
one night in the refugee camp he teaches his grandson a corrido,11 at first
seemingly as a way to alleviate Lucio’s fear, much like he does for all the
refugees on their first night in the camp after their village is raided. By the
end of the film, we discover that the corrido also transmits orally to Lucio
the story of the resistance, linking the guerrilla with “so many villages time
has drowned in oblivion” and thus preserving and transmitting an unofficial,
collective, historic memory of the conflict through song.12
The significance of this song as a cultural weapon inherited by Plu-
tarco’s grandson becomes apparent in the final scene of the film: Lucio
appears in a town, alone, playing his guitar and singing his grandfather’s
corrido. The song suggests that his father and grandfather have been killed,
but he continues their struggle by transmitting the song’s unofficial his-
tory to new listeners. The final shot is of Lucio and a young girl, another
presumably orphaned refugee, walking off together into the distance, with
Lucio armed with both a guitar and a gun (also his grandfather’s). The
potentially foundational couple and the open ending of this scene evoke
the hope for a socially just society-to-come. The couple’s success will depend
on the continued struggle to combat all the forms of violence to which
they are subjected, a struggle reliant on the physical and cultural weapons
Lucio inherits from previous generations. Until structural change is achieved,
he will continue to be differentially exposed to violence, thus forcing him
into the paradoxical position of resorting to violence to resist it. The fact
that these two children would be adults during the viewer’s present creates
a link with the current context, one in which the livelihoods and physical
security of Mexican peasants are still threatened.13 The film thus places a
demand on the viewer for ethical actions, which it spurs on through the
child as a symbol of hope for a nonviolent future created through historic
memory, popular culture, and armed struggle.

Trauma and Disability

While Vargas’s film revises the revolutionary period in Latin America to

evoke hope for an end to persistent structural and physical violence, La teta
asustada addresses the legacies of the same history in the present, focusing
directly on trauma, memory, and oblivion.14 The protagonist of Claudia
Llosa’s visually rich, highly stylized film embodies the traumatic effects of
war on the postconflict generation. Despite the temporal differences, there
 Violence, Injury, and Disability in Recent Latin American Film 143

are many striking similarities between La teta asustada and El violín. They
both employ subaltern perspectives, a minimalist style, a slow tempo, an
emphasis on music, and relatively little dialogue in their treatment of his-
toric State violence. Moreover, the two films’ treatment of disability invite
a productive comparison. Fausta’s disability, like Plutarco’s, is both literal
and symbolic. Fausta appears paralyzed by la teta asustada, a phenomenon
explained by the indigenous theory of how the psychological effects of
violence are transmitted through nursing to the victim’s child.15 According
to her family, her soul has hidden under the ground out of fear because
she was nursed by her mother, a direct victim of violence. Her symptoms,
which persist into young adulthood, include social isolation, frequent nose-
bleeds, and fainting spells. Fausta must confront three connected personal
challenges that both lead to her personal healing and resonate with broader
social concerns. First, she must overcome her fear of going out alone so that
she can bury her mother Perpetua. The latter dies at the beginning of the
film, and Fausta must earn money to transport the body to the hometown
they fled to escape the armed conflict in which Perpetua was raped and her
husband was killed. To do so, she takes a job as a housekeeper for Señora
Aida, a wealthy concert pianist whose class- and race-based abuse Fausta
must confront when Aida plagiarizes her songs and cheats her. Finally, Fausta
must overcome her visceral fear of men, learn to trust, and open herself to
a romantic relationship with the worthy suitor Noé, a Quechua-speaking
gardener who also works for Aida. Her healing process is complete when
she recovers her payment from Aida—pearls from a broken necklace—opens
herself physically and emotionally to Noé, and buries her mother.
Like Plutarco in El violín, Fausta and her mother also cross multiple
categories of alterity (gender, ethnicity, socioeconomic status, geographic
marginality), which increases their exposure to violence during Peru’s armed
conflict. Her trauma is a direct consequence of the widespread terror suf-
fered disproportionately by highland indigenous peasants during the years
of terrorist and state violence (1980–2000): her mother sings that Fausta
witnessed Perpetua’s rape from within the womb,16 and her aunt and uncle
attribute her trauma to la teta asustada. As with Plutarco, Fausta’s subaltern
status and trauma are linked to a violent state that actively produces dis-
ability in marginalized people through war. In the case of Fausta, the fact
that she was a fetus when the traumatic event occurred evokes a limit situ-
ation in which the victim is among the most absolutely vulnerable, but also
innocent, of society. She carries this trauma into her adult life, in which the
violation of her mother’s body lives on perpetually—as her name “Perpetua”
suggests—in Fausta. Even though she suffers no specific threat of rape in
the present, her visceral fear of men and of being alone in public spaces
144 Victoria L. Garrett

causes her to live as if the abuses of the past were repeated in the present,
as if history were cyclical.
As in El violín, such physical abuses are linked here to cyclical colonial
legacies of structural violence, again hinging on Fausta’s gendered, aged, and
ethnic alterity and symbolized by her lack of access to written authority. The
protagonist’s disadvantaged position with regard to the dominant culture
is first illustrated in her dealings with the Western medical establishment.
Fausta is excluded from any dialogue with the male doctor, who explains her
nosebleeds and fainting spells to her uncle Lúcido. The doctor—armed with
the authority of Western medicine—denies Lúcido’s non-Western explana-
tion of her fainting episodes in terms of la teta asustada, thus refusing to
recognize the family’s cultural understanding of her trauma. Instead, he
insists that her nosebleeds result simply from superficial capillary vessels,
but that she faints because she has a potato in her vagina, which is infected
and causes uterine inflammation. While the doctor assumes the potato is
intended as a form of contraception and Lúcido says it must have gotten
there by accident, Fausta insists that rather than a marker of her ignorance,
it is intended to protect her from rape. Independent of these competing
theories of her multiple symptoms, when Fausta has another nosebleed
and faints, the doctor denies her access to medical services for a seemingly
trivial reason that marks her cultural distance from the ineffective state
bureaucracy: she did not bring her medical record number.
These conflicts parallel Fausta’s relationship with Aida, in whose char-
acter colonial power legacies, the army (suggested though military portraits
of family members), and capitalist exploitation in an unregulated domestic
labor market intersect. Aida’s exploitation of Fausta’s songs hinges on the
lack of a written contract documenting their agreement, an already unequal
exchange that in addition to denying Fausta’s authorial rights to her cre-
ations also carries an extreme emotional cost for Fausta. When coerced into
singing what will become Aida’s signature song, Fausta must overcome tears
and trembling to meet the demands of her patron, who remains impervi-
ous while she passes Fausta her first pearl. Moreover, as the indigenous
girl trades her treasure for trinkets,17 the absence of a contract later allows
Aida to throw her out of the car after the concert—subjecting Fausta to
psychological trauma and potential bodily harm—for breaking her implicitly
required silence as an invisible subordinate. The film thus underscores how
colonial legacies allow structures of inequality to persist in new guises, such
as domestic work, the commercialization of indigenous culture for the profit
of the elites, and differential exposure to violence.
At the same time that Aida functions as an agent of neocolonial exploi-
tation, her demand for Fausta’s songs sets in motion the latter’s healing. As
 Violence, Injury, and Disability in Recent Latin American Film 145

for Plutarco, music plays a crucial role in empowering Fausta by serving as

a form of economic gain, transmission of collective, cultural memory, and
personal comfort. As Gastón Lillo has argued in his analysis of memory and
oblivion in the film, Aida “activates the process of memory that contributes
to Fausta’s resuming a relationship with the cultural objects of her past, the
memories she shares with her community, which will help her to repair her
wounded identity” (443). At the beginning of the film, both Fausta and her
mother sing in Quechua of their personal trauma, and Fausta sings to her
mother (both alive and dead) about the preparations for her funeral (washing
her so she will not smell of sadness, going to heaven to pick flowers, and
taking her back to the village so her father will no longer be alone with the
maggots). In these moments, her songs respond to her mother’s demand to
keep memory alive, a demand first expressed when she sings, “I’ll eat if you
sing to me and freshen my drying memory. I don’t see my memories, it’s as
if I no longer lived,” and later visually when she lies on a pillow embroidered
with the words “no me olvides” (don’t forget me).18 When Fausta sings for
her mistress, she refers directly to overcoming fear and to the process of
healing.19 Fausta struggles between her mother’s demands for memory that
tend to perpetuate Fausta’s traumatic experience, her mistress’s demand for
songs-as-commodities, and the men in her life’s insistence that she break
free from the weight of the past: Noé’s insists that she can choose whether
to live in fear, and her uncle accosts her to shock her into breathing and
fighting to live. These events unleash a transformative sequence in which
Fausta finally overcomes her fear and sneaks into the house to “steal” the
pearls that she had earned, embraces Noé when he finds her passed out
in the driveway, and wraps her legs around him to be carried off to get
the potato removed from inside her, thus literally opening herself to him.
When her healing process is complete, she releases her mother’s embalmed
corpse to the sea and steps out of her cyclical, closed-off life by singing,
“Look at the sea, Mum. Look at the sea.”20 She thus releases herself from
the demand of her village and opens herself to a new life on Lima’s coast.
Lillo argues that Fausta’s healing provides a positive model for postcon-
flict societies: her contact with her cultural memory (through music, Que-
chua, and Noé) allows her to process her memory, to comprehend it, and
then to liberate herself from her traumatic paralysis. In this regard, La teta
asustada’s treatment of disability in contexts of violence differs significantly
from that of El violín, despite other remarkable parallels. Both protagonists
and the cultures with which they identify have faced intersecting forms of
physical and structural violence from the colonial encounter to the present
under nominally democratic regimes. Their markers of disability are inex-
tricable from other forms of marginality that situate them among society’s
146 Victoria L. Garrett

most vulnerable members. It is no coincidence that both characters evoke

the specter of rural peasants caught in the crossfire of the Cold War who, like
each of these characters, are direct or indirect victims of the military’s dirty
war tactics. Thus, they lay bare the parallels between physical and structural
violence, making visible the way both colonialism and modern capitalism
create disabled subaltern bodies. Likewise, they employ any number of sub-
altern strategies, including physical and cultural weapons such as song and
collective memory, to survive. Despite these powerful parallels, Fausta is,
in effect, restored to physical normativity through an operation, and her
individual emotional healing is evidenced in her receptiveness to Noé, both
before her operation and after. The film ends with an image of fertility as
Fausta accepts the gift of a flowering potato plant from Noé. Unlike El
violín, in which the structures that produce disability remain unchanged, La
teta asustada suggests that structural change can be enacted in unison with
the healing process through cultural agency.21 In the absence of explicitly
political solutions, the cultural space represented by music provides Fausta
with the agency to process her memory and thus liberate herself from the
scars of the past, as well as to confront her exploiter. In the context of
posttraumatic societies lacking historic memory and with unclosed processes
of mourning, this emancipatory healing carries a positive value for those
afflicted by the legacies of postcolonial violence.

Conclusions

The films studied here form part of a common project based on the use of
protagonists with injured bodies to advance a critique of persistent colonial
legacies of structural violence as well as military violence. The central issue
is social justice, which is intricately tied up with making visible past and
present abuses. As Erevelles has persuasively argued, disability does not exist
independently of the material conditions in which it is produced. As we
have seen, the critical concern of these films is not aligned with a tradi-
tional U.S. disability politics of inclusion or of valuing disabled people, but
neither does it imply the disappearance of disability. Rather, the focus is
on military and market structures that violently produce disability as one
among many other categories of marginality. El violín and La teta asustada
critically underscore the oppressive nature of a global society that relies on
systematic violence to produce disproportionately higher incidences of injury
and disability in subaltern populations. In this context, disability acquires a
central cultural significance and functions as a tool of resistance. The films
share a common project of producing a powerful desire in the viewer to
 Violence, Injury, and Disability in Recent Latin American Film 147

imagine, and thus make possible, more just conditions free of violent abuses.
Recognition of these disabling conditions as well as disability’s political and
cultural potential is crucial for both films’ framing projects.

Notes

1. Helen Meekosha and Russell Shuttleworth, as well, signal that “[d]isabled

people in the majority world have been marginalised often as a result of colonisa-
tion, colonial rule and post-colonialism; these cases constitute 80 percent of the
650 million disabled people in the world. The UN reports that for every child
killed in warfare, three are injured and permanently disabled (UN 2006). Inva-
sion, war, nuclear testing, mining, the export of pollution and the militarisation
of the globe have all contributed to the increasing number of disabled people in
the global south” (64).
2. “Ableism” refers to discrimination against people with disabilities. Central
to disability studies is a critique of compulsory normalcy or able-bodiness, which
functions similarly to compulsory heterosexuality (McRuer 7–10).
3. Heron maintains a loosely defined opposition between Western (capital-
ist, individualist) and non-Western (noncapitalist, collective) societies. She recog-
nizes, however, that the relationship between the spaces of capitalist exploitation and
accumulation can be reconfigured and reterritorialized in different circumstances.
The structure of the relationship matters more than the geographic location of the
relationship between these two loose categories.
4. For the production, distribution, and reception history of the film, see
Alvaray 74 and Mraz 247–250, and especially Spaner 205–218.
5. Don Plutarco is played by Ángel Tavira, a nonprofessional actor whose
outstanding performance earned him the 2006 Cannes Film Festival’s Best Actor
Award in the Un Certain Regard section. His musical talent and work toward pre-
serving traditional music from Tierra Caliente is documented in Francisco Vargas’s
2004 documentary Tierra Caliente.
6. For in-depth historical studies on Mexican social movements and guer-
rilla struggles, see Laura Castellanos’s México armado, 1943–1981 and Carlos Mon-
temayor’s La guerrilla recurrente; for a documentary account of Lucio Cabañas,
professor and guerrilla leader in Guerrero alluded to by the name of Plutarco’s
grandson Lucio, see La guerrilla y la esperanza: Lucio Cabañas. Because of the wide-
spread use of torture, summary executions, and forced disappearances, this conflict
is also referred to as the Mexican Dirty War, which situates it in relation to the
better-known Dirty Wars of South America that took place at the same time in
the context of the Cold War.
7. I quote the films’ English subtitles throughout this essay.
8. Though scholars such as David Mitchell and Sharon Snyder criticize
the use of disability as a metaphorical “crutch” for literary narratives (49), Barker
and Murray persuasively argue that in narratives culturally situated in postcolonial
148 Victoria L. Garrett

contexts, “[d]isability metaphors may be meaningful . . . as part of foundational

cultural and historical disability narratives” (233). Noting that “in communities
experiencing mass disablement (due to war, disaster, or industrial accident) people
with disabilities often constitute a numerical majority,” the Western category of
“normal” might be drastically altered, thus problematizing disability studies’ criti-
cism of narratives of healing as expressing desires for normalcy (229). They argue
for reading practices that “highlight how particular disability experiences can shape
cultural histories and are written into artistic and representational practices” (234).
9. This kind of manipulation of peasants to circumvent Mexico’s constitu-
tional commitment to land reform is traced in Warman’s essay “El neolatifundio
mexicano: Expansión y crisis de una forma de dominio.”
10. Plutarco recounts: “In the beginning of time the Ancient Gods created
the earth, the sky, fire, the wind, and all the animals. Then they created man and
woman. They all lived in harmony. But one of those Gods was mischievous and he
gave mankind envy and ambition. When the other Gods found out, they punished
the mischievous god. Then they removed the ambitious people of the earth. But
some of them were accidentally left behind. Then there were more and more, and
more, and they wanted to own everything. They deceived the good people, and
little by little, they took away what they owned, until they owned everything. They
drove them out of their forests. They good people felt this was not fair, so they
turned to the Gods for help. But the Gods told them to fight on their own, that
their destiny was to fight. The ambitious people had become powerful, so the good
people decided to wait. And their land became dark and desolate. . . . Then, the
good people returned to fight for their land and their forest, because it belonged
to them. Because their parents had given it for their children, and the children of
their children. And that’s what we’ll do, we’ll go back.”
11. The corrido is a traditional musical genre used to transmit orally the
exploits of popular heroes. Vargas has emphasized the importance of the corrido as
a motif, stating that the film itself is a corrido (Guillén).
12. Plutarco’s use of music to perpetuate his cultural memory and conscious-
ness contrasts with the military captain, whose lack of music is directly connected
with forgetting and with his participation in the occupation: “I would have liked
to learn how to play but it wasn’t possible. . . . When my father was killed, I was
only a kid and from that moment it was an everyday fight. We didn’t even have
enough food, so, music, you can imagine. . . . Then I got involved in this, and
you see, you forget.”
13. For example, the deepening of Mexico’s neoliberal policies motivates the
EZLN’s continued activity in Southern Mexico. In the time between this chapter’s
composition and its publication, the Mexican State’s complicity with the drug cartels
that disappeared forty-three students in Guerrero and put countless others in mass
graves has sparked renewed conflict in the region.
14. Although La teta asustada, Llosa’s second feature film, received mixed
reviews in Peru, it was internationally acclaimed. Its more significant awards include
the Berlin Golden Bear, the Guadalajara International Film Festival, the Montreal
 Violence, Injury, and Disability in Recent Latin American Film 149

World Film Festival, and the Havana Film Festival, as well as its nominations to
the Goya Awards and the Oscar for Best Foreign Film.
15. It is well documented that Claudia Llosa’s film was inspired by Kimberly
Theidon’s work on la teta asustada in Ayacuchan communities affected by terrorist
and state violence, and published in her book Entre Prójimos (2004) (Largaespada,
Chauca et al. 46, Sitnisky 263).
16. Though the film does not specify which armed group victimized Fausta’s
family, military forces more often practiced the kind of group rape suffered by
Fausta’s mother (Ugaz). Moreover, Fausta’s visceral reaction to an official military
portrait in Aida’s bedroom suggests that she holds the national army responsible.
For important historical studies of the conflict, see Gorriti, Manrique, Theidon, and
Degregori. See also the Final Report of the Truth and Reconciliation Commission
of Peru, which estimates the number of dead and disappeared people at 69,280.
17. Sitnisky and Lillo have both noted the parallel between the pearls and
the glass beads and mirrors of the early Spanish conquistadors.
18. When Noé and Fausta clean up the pieces of Aida’s piano, which the
latter had shoved out the window in frustration, Noé tells Fausta in Quechua, “It’s
broken, but it still sings. Can you hear it?” Memory, music, and Quechua culture
are thus linked in opposition to Aida’s sterile attempts at composition.
19. She sings, “we must sing to hide our fear, cover our wound,” and later,
“My little lost dove, you ran away out of fear and you lost your soul, little dove.
I’m sure your mother brought you into the world during the war, and perhaps your
mother gave birth to you with fear. Even if they hurt you there, you shouldn’t walk
crying, there’s no reason to walk suffering. Search for, look for your lost soul, look
for it in the darkness, look for it in the earth.”
20. Bloch-Robin notes that the extradiegetic music of the film, a repetitive
ostinato, evokes Fausta’s obsessive enclosure and highlights the film’s cyclical tempo-
rality. Velez reads this final liberation as a necessary form of matricide that allows
Fausta to assume her independence from her mother’s injuries (38).
21. Likewise, Theidon emphasizes in a published interview the importance of
economic reparation and justice for the healing process: “I would like to add that
when I think of healing I think of justice, of the lack of justice, and of impunity.
Because for me, a part of healing would include sentencing the rapists, and economic
and symbolic reparitions for these women. Justice can be very healing. And none of
the women I know have found justice, many still suffer from rage” (Largaespada).

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the Popular.” Cultural Critique 58 (2004): 1–29.
Davis, Lennard J. Enforcing Normalcy: Disability, Deafness, and the Body. New York:
Verso, 1995.
———. Bending Over Backwards: Disability, Dismodernism, and Other Difficult Posi-
tions. New York: New York UP, 2002.
Degregori, Carlos Iván. Qué difícil es ser Dios. El Partido Comunista del Perú-Sendero
Luminoso y el conflicto armado. Lima: Instituto de Estudios Peruanos, 2011.
El violín. Directed by Francisco Vargas Quevedo. México: Cámara Carnal Films,
2007. DVD.
Erevelles, Nirmala. Disability and Difference in Global Contexts. New York: Palgrave
Macmillan, 2011.
Garland-Thompson, Rosmarie. Extraordinary Bodies. New York: Columbia UP, 1996.
Gorriti Ellenbogen, Gustavo. The Shining Path: A History of the Millenarian War in
Peru. Chapel Hill: U of North Carolina P, 1999.
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ber 31, 2007. Web. November 28, 2012.
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Web. November 28, 2012.
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humano. n.p. October 25, 2010. Web. February 18, 2013.
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Revista de Crítica Literaria Latinoamericana 37.73 (2011): 421–466.
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History Review 41 (1988): 93–116.
 Violence, Injury, and Disability in Recent Latin American Film 151

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Nueva Imagen, 1979, 39–63.
 Part III

Embodied Frameworks
Disability, Race, Marginality
 Chapter 8

Sô Candelário’s Inheritance
Leprosy as a Marker of Racial Identity in
João Guimarães Rosa’s Grande Sertão: Veredas (1956)

Valéria M. Souza

Grande Sertão: Veredas (GSV, 1956) is the story of Riobaldo, a former jag-
unço (or hired bodyguard) in the Brazilian sertão (backlands). Now elderly
and disabled by rheumatism, Riobaldo relates his autobiography to a silent
male visitor from the city. The novel is intimately shaped by disability
and populated by large numbers of disabled characters. Yet disability and
disabled characters in the text are often overlooked or, when not ignored,
conveniently allegorized away by canonical critics. Within the fictional
universe of Riobaldo’s sertão, the majority of disabled characters fall into
two categories—those with what I refer to as either “biblical” or “mod-
ern” afflictions (Souza 129–35). Leprosy, though technically an overlap of
“ancient” and “modern,” remains one of Grande Sertão: Veredas’ “biblical”
afflictions. These interlocking, at once complementary and contradictory
representations of leprosy, are embodied in the novel in the persons of the
anonymous backwoods “lazar” and the venerated jagunço chief Sô Can-
delário, respectively. In this chapter, I first read the powerful but critically
neglected episode of the “lazar” by examining how it dialogues with and
reworks ancient and medieval representations of leprosy. I then explore links
between Gilberto Freyre’s doctrine of Lusotropicalism and the central tenets
of tropical medicine, arguing that Lusotropicalism and the medical designa-
tion of leprosy as a “tropical” (read: nonwhite) disease cannot be logically
disentangled from one another. A close reading of relevant passages involving
Sô Candelário reveals that, in the modern Brazilian literary, cultural, and

155
156 Valéria M. Souza

medical imagination, leprosy became a coded way to talk about tensions

and ambiguities of race and racial identity.1
I opt throughout for “leprosy” in favor of the more revisionist “Han-
sen’s Disease,” because “Hansen’s Disease” lacks the etymological, cultural,
and historical richness with which “leprosy” is imbued. The disease featured
in João Guimarães Rosa’s novel is undoubtedly leprosy (or, better yet, an
amalgam of several different “leprosies” rooted in more than one histori-
cal period) and it is important to note that this condition—with all of its
biblical and medieval subtext—differs substantially from the microscopically
constructed, late nineteenth-century bacillus discovered by Gerhard Armauer
Hansen. At this juncture, readers may wonder why leprosy should even
qualify as a “disability” at all, as well as how my analysis of leprosy will
prove relevant to Disability Studies. This brings me to the issue of “dis-
ability” versus “illness.” Much of Disability Studies theory draws a clear
distinction between illness and disability, although some critics including
Susan Wendell make an excellent case for illness-as-disability (19–33). For
reasons on which I elaborate further in my discussion of GSV’s “miracle
girl,” I use “disability” to refer broadly to any deviation from bodily norms,
including (but not limited to) cognitive impairments, blindness, deafness,
amputation, paralysis, disfigurement, deformity, physical wounds, chronic/
acute illnesses, and speech disfluencies. Where other terminology like “dis-
ease,” “condition,” “ailment,” and so forth appears, it is solely to avoid
excessive repetition and should always be understood as falling under the
rubric of “disability” as defined here.2
In Rosa’s novel, the narrator-protagonist’s encounter with the “lazar”
unfolds toward the end of the narrative, as Riobaldo recounts how, in the
wake of a minor spat with his love interest and fellow jagunço, Diadorim,
he wanders farther away than usual from the band of jagunços:

And I met [the lazar]. He looked as though he were lying in

wait, hiding in the top of a tree, like an ararambóia snake. It
gave me a start. He was [a man] covered with disgusting sores,
truly leprous—[done for]. I’d rip my eyes out not to see things
like that! I reached for my revolver. That thing suddenly shrank
back, trembling; it trembled so violently that the branches of
the tree coiled up the sound of a strong wind. He didn’t scream
or say a thing. Did he have any voice whatsoever left? I had to
crush that inhuman thing. (400, trans. altered)3

The “lazar,” according to Riobaldo, is poised atop a tree—concealing him-

self in order to hunt or kill, which suggests a degree of malice and hos-
 Sô Candelário’s Inheritance 157

tility. However, the man may just as well be hiding out of fear of the
approaching narrator-protagonist.4 Riobaldo likens the lazar to an emerald
tree boa [ararambóia], a nonvenomous, arboreal species of snake found in
the Amazon rain forest. This clue implies that the narrator has wandered
into the Meio-Norte region of Brazil, if not the actual rainforest. He is
“outside of civilization” in relation to the sertão, in much the way that the
sertão represents the “outside of civilization” for characters like Riobaldo’s
urban interlocutor. The comparison to this particular snake is noteworthy
for another reason: its scales are emerald green, save for the many alabaster
“lightning bolt” patches covering its back. The shape, size, distribution,
and (white) discoloration of these patches strongly resemble those found
on patients with borderline leprosy (BB).5 According to Ridley and Jopling,
pioneers in leprology, borderline leprosy is the most unstable form of the
disease. Its manifestations make it difficult to determine whether patients
are at the tuberculoid or lepromatous side, but they will generally progress
with time to one or the other (Ridley and Jopling 255–261; Jopling 7–43).
The narrator continues, painting a picture of this lazar who is, at
minimum, a borderline case, but more than likely has full-blown lepro-
matous leprosy (LL)—as evidenced by the presence of “disgusting sores”;
he is “truly leprous—[done for].” As Riobaldo reaches for his gun, the
leper recoils and trembles, and the narrator scorns him via the third-level
demonstrative aquele.6 “That one” or “that thing,” he says, describing how
the lazar shrinks back, withdrawing into the tree. The choice of the verb
“to coil (up)” (enroscar in Portuguese) reinforces the idea of the leper as
serpentine. In fact, since the original text’s expression cobra ararambóia is
already redundant—akin to saying “emerald tree boa snake” in English—
the use of coil (up) marks the third instance of a snake metaphor in less
than a paragraph. This phenomenon of “stacking” or repetition in GSV
performs an augmentative function similar to the Lusophone suffixes –ão/
zão and –ona/zona.7
Riobaldo emphasizes the leper’s silence, noting that he neither screams
nor says anything, and wonders if he has any voice left at all. As leprosy
progresses, it is known to cause hoarseness via “obliteration of the vocal
cords and changes in the trachea and larynx” (Boeckl 12). More than just
a clinical symptom, the lazar’s muteness is also tied to his nonhuman sta-
tus. Like an enormous serpent in the treetops, the character communicates
through motion and physical behavior, but seemingly lacks the capacity for
speech. Indeed, Riobaldo affirms his desire to “crush that inhuman thing”
(emphasis mine). The overall description of the character situates him within
the medieval tradition of so-called wild lepers (not to be confused with
their counterparts, the “tame lepers”). Wild leper was an epithet attached
158 Valéria M. Souza

to itinerant diseased people, many of whom traveled about in order to beg

for alms. The moniker encapsulated ecclesiastical and urban fears regarding
the communicability of leprosy and its potential “movement” from town to
town, country to country, or even leprosaria to leprosaria (Rawcliffe 86–87,
284–285).
The episode continues with another “leper story” Riobaldo recalls over-
hearing: “[. . .] Medeiro Vaz spotted a leper like this one in a guava tree.
The man had [come] to lick the ripe guavas on the tree, one by one, in
order to pass his disease on to [other people] who would later eat the fruit.
Some do that” (400, trans. altered). This jagunço tale is a reworking of an
infamous fourteenth-century French legend, according to which hundreds
of lepers maliciously plotted to infect all of France by poisoning the nation’s
drinking water (Boeckl 49; Edmond 1). Allegedly, “[t]his would be done by
poisoning the wells with a mixture of reptile parts and human excrement”
(Watts 61). There was no truth to the rumor, but Philip V responded by
ordering that all lepers be investigated and, if found guilty, burned at the
stake. His decree resulted in a ruthless wave of violence against anyone
suspected of having leprosy. In GSV, the storyline has been adapted to the
sertão, with a guava grove replacing wells and fountains but virtually every
other detail unchanged. Riobaldo makes clear that he believes the incident
recounted by Medeiro Vaz doesn’t just pertain to an individual leper, but
is rather characteristic of lepers in general: “Some do that.” Vaz, mirroring
Philip V’s actions, assassinates the leper—a decision Riobaldo deems “just
and correct” (Rosa, Devil 400).
The tale about the leper in the guava grove remains at the forefront
of the narrator-protagonist’s mind as he tries to determine what to do about
the lazar in the tree:

[What they’d told me] was echoing in my ears now. The revul-
sion in me, strong fear: the lazar probably stank, and wherever
he might be, no matter where he went, he probably left a slimy
trail worse than a gigantic slug, contaminating everything with
his cursed disease. Such that all the guavas of every guava grove
in existence would turn into poison fruit . . . — and as for
pulling my trigger, there was Medeiro Vaz’s example. . . . (400,
trans. altered)

The remark “the lazar probably stank” (with feder as the original verb) calls
forth an entire classical and medieval vocabulary associated with leprosy.
Luke Demaitre observes that leprosy “[. . .] was called ‘feda,’ an adjective
whose meaning ranged from ‘ugly’ and ‘foul’ to ‘hideous’ and ‘abominable’ ”
(98). The term feda is related to the Latin fetor, or “stench,” from which
 Sô Candelário’s Inheritance 159

feder in turn derives. Prior to the Renaissance, when authors and physicians
began to stress the visually unappealing aspects of the disease, they focused
primarily on its olfactory symptoms. Hence, the sick were described as hav-
ing “fetid breath,” body odor (Boeckl 97), and “fetid ulcers” (Demaitre 99).
Riobaldo touches on the leper’s appearance when he mentions “disgusting
sores,” but what really bothers him—provoking feelings of intense fear and
revulsion—is the thought of how the man must smell. It is the mention of
scent that leads Riobaldo to expand on Medeiro Vaz’s story and conclude
that the lazar is worse than a gigantic slug and that he will infect “every-
thing,” poisoning all existing guava groves.
Riobaldo wants to kill the leper but struggles to do so, imagining
what Diadorim might say (Rosa, Devil 401–402). Before long, Diadorim
appears, while the narrator-protagonist continues mulling over which course
of action to take:

As long as a lazar like that existed, even far away, in this world,
everything remained sickly and dangerous, for that man hated
all that was human. Condemned and damned by every law,
that wreckage of a man was. Marked: his body, his blame! For
otherwise, why did he not rid himself of the evil, or allow the
evil to do away with him? That man, he was dead already. (402,
trans. altered)

Riobaldo cannot stand the thought of the lazar existing in the world—
but why? Why is the narrator so convinced that a single leper will render
everything “sickly and dangerous”? Here, the narrator slightly modifies his
position by ceasing to label the “lazar” as “inhuman,” instead referring to
him as a “man” (albeit one who harbors hatred for his fellow man). Yet he
also obviously blames the leper for his disability, branding him “condemned
and damned,” in addition to “that wreckage”—someone who has been cor-
poreally “marked” as a result of his own “fault.” The narrator rationalizes
this attribution of blame by questioning why the lazar doesn’t simply cure
himself or, alternately, “allow” himself to perish from the disease. Surely if he
is not to blame for being leprous he must choose one of these two options.
For the narrator, the mere fact that the man continues living with a chronic
disease constitutes proof of his “guilt” in becoming and remaining disabled.
In the narrator’s eyes, the man is already dead, his very survival an affront
to the universe.8 Riobaldo pictures Diadorim playing devil’s advocate, argu-
ing that the lazar is a living entity no different from any other (Rosa, Devil
402). The narrator-protagonist, however, vehemently rejects this proposal,
preferring instead to view the man as defective—as a thing that needs to
be corrected or eliminated.
160 Valéria M. Souza

Riobaldo’s momentous encounter with the backwoods leper can be

paired with an earlier episode that tells of a young girl who becomes ill, stops
eating, and avoids fluids save a few drops of holy water per day. Miracles
begin to happen all around her, and a government-sponsored intervention
soon follows:

But the regional chief of police came, bringing along his sol-
diers, and ordered the people to disperse. They took the girl to
an insane asylum in the capital, and it is said that there they
force-fed her through a tube. Did they have the right to do
that? Were they justified? In a way, I think it was a good thing.
Because, in no time at all, thousands of invalids condemned to
die appeared there, seeking to be cured: leprous lazars, horribly
deformed cripples, people covered with sores, the staring blind,
madmen in chains, idiots, consumptives, the dropsical, all sorts:
creatures that stank [. . .] And those people screamed, clamoring
to be healed at once, praying aloud, arguing with one another,
despairing of their faith—what they wanted was only to be
cured, they had no interest in Heaven. (48)

The episode is semantically linked to that of the lazar via the reference
to “leprous lazars,” but also through terminology including “condemned”
(which recurs on page 402) and the verb “to stink” [feder]. It acts as an
important parable in that it wrestles with differing models of and responses to
disability—in this case folk/religious versus medical/institutional. The com-
munity’s reaction to the girl who exhibits what would probably be classified
as anorexia (according to the criteria of the DSM-IV-TR) consists of nonin-
vasively observing the miracles with which she is credited. Essentially, the girl
is treated like a saint. Her decision not to eat and to limit what she drinks
is honored. But once the regional police inspector arrives everything changes.
The official avails himself of military power and orders those gathered around
the girl to disperse. She is then seized and committed to a mental institution
where she is force-fed through a gastric tube. The twofold brutality of the
inspector’s actions needs to be stressed: not only is the girl dislocated—ripped
from her native, presumably rural community and shunted into an urban
institutional setting—she is also subjected to an aggressive medical interven-
tion (force-feeding) that some characterize as torture and by which she is
viciously denied agency over her own body (Barnes n.p.).
Riobaldo remarks that he “more or less” approves of what was done.
He opines that forced treatment is a positive solution, because it motivates
 Sô Candelário’s Inheritance 161

other disabled people in the community to voluntarily seek out medical

attention. It turns out to be a dubious “blessing,” though: following the
incident with the girl, swarms of people suddenly come forward demand-
ing to be cured. The description of this group is crucial because it lumps
together individuals with a vast array of disabilities, including chronic and
acute illnesses, physical deformities, and mental illnesses. Among those listed
are “leprous lazars,” cripples, people covered in sores, the blind, madmen in
chains, “idiots,” consumptives, and people with dropsy (now called edema).
In one fell swoop, Rosa’s novel situates a wide range of ailments within a
single category—that of “the condemned sick [. . .] creatures that stank.”
On GSV’s terms, there is no difference between illness (chronic or acute,
mental or physical) and disability (congenital or acquired).9
Sô Candelário ostensibly suffers from the same condition as the back-
woods lazar, but the two characters and the narrator-protagonist’s relation-
ship to them could not be more different. To begin with, Sô Candelário
is a well-respected jagunço chief. As documented in GSV’s canonical criti-
cism, little is known about Candelário’s origins (Galvão 44). However, the
text provides numerous hints that can be used to (re)construct a portrait
of this individual, whose personality is closely tied to his family legacy
of leprosy. Candelário is introduced at the beginning of the book in a
random comment interspersed with Riobaldo’s jumbled and still quasi-
incoherent monologue.10 In a statement that could serve as the epigraph
to Candelário’s biography, the narrator-protagonist says: “Sô Candelário
endeviled himself, thinking he had an evil disease” (11, trans. altered). The
character’s race is touched on briefly when he is described as “the color
of blue wheat, almost black, with a yellowed beard” (200, trans. altered),
implying that Candelário is not white, and is most likely of Afro-Brazilian
and/or indigenous descent.
Riobaldo delivers the next bit of significant information pertaining to
Sô Candelário’s origins when he muses: “Where was he from, where had he
come from? They told me: Bahian deserts” (203, trans. altered). Like the
comparison to the emerald tree boa that locates the backwoods lazar in either
the Meio-Norte region of Brazil or, deeper still, in the Amazon rainforest,
Bahia serves as a topographic marker that furnishes data about more than
just Sô Candelário’s homeland. The designation “Bahian deserts” is at the
same time culturally specific and geographically ambiguous. It is geographi-
cally ambiguous because Bahia is a state, as opposed to a town or city, and
furthermore, because an impressive 68 percent of Bahia’s territory—includ-
ing its sertão—is classified as having a semi-arid or “steppe” climate (“Bahia”
n.p.). Technically, these regions are regarded as “intermediate zones” between
162 Valéria M. Souza

pure desert and humid climates (“Köppen-Geiger” n.p.). However, “hot

semi-arid” zones such as Bahia (and, for example, areas of the Australian
outback) are virtually indistinguishable to the layperson from desert land.
Saying “Bahian deserts” is similar to saying “forests of the rain forest” in
the sense that all of the rain forest is comprised of forest and, indeed, the
vast majority of Bahia hypothetically qualifies as “desert.”
“Deserts” appears three times in GSV, two of which are relevant to
this chapter: the reference to Sô Candelário’s birthplace (cited above), and
its mention in an early description of the Sussuarão Desert (Rosa, GSV
50; Devil 26–27), a place that—like “Bahia” in this strictly geographical
and climatological sense—represents a nonplace, a foucauldian heterotopia
(“Spaces” 184–185). In multiple ways, Sô Candelário hails from a place out-
side of place: he could be from anywhere in Bahia and as such is not from
any particular place in Bahia. The overall impression is that Sô Candelário is
from a remote, unknown location whose geographical limits are very loosely
delineated and identifiable based more on climatic features than on maps
or names. This is because where Candelário is from geographically matters
far less than where he “comes from” genealogically. For if the label “Bahia”
is geographically indistinct, it is anything but culturally vague. Going by
Diadorim’s birth certificate (Rosa, GSV 620; Devil 489–490) and a hand-
ful of other contextual clues, the narrative of GSV is set in the República
Velha, between the late nineteenth and early twentieth centuries (Galvão
63–64). During the period in question, Bahia had already established itself
demographically as an Afro-Brazilian province (Romo 4). In short, Rio-
baldo’s phrase “deserts of Bahia” bolsters the hypothesis that Sô Candelário
is most likely Afro-Brazilian, making this commentary on the character’s
origins less about geography than about race and/or ethnicity.
Within the same passage, the narrator fleshes out his sketch of Can-
delário, confiding in his interlocutor some rumors he has heard about the
jagunço chief:

[. . .] what Sô Candelário hunted was death. He drank, almost

constantly, his strong cachaça. Why? I’ll tell you: he was afraid
he might be leprous. His father succumbed to it, and his broth-
ers too, afterwards and afterwards—the ones that were older.
Leprosy—say no more: that’s when a man licks at the wound
of cursed punishment. Punishment, what for? Because of that,
certainly, Sô Candelário was possessed by hatred. He lived with
his mind afire. Leprosy takes time, retarded in the body, then
suddenly sprouting forth at any moment, taking many forms.
(203, trans. altered)
 Sô Candelário’s Inheritance 163

According to buzz in the backlands, Sô Candelário seeks out death, spurred

on by fears of leprosy. This anxiety is grounded in the idea of the disease
as a “family curse,” a trope whose import should not be underestimated.
The narrator suggests that leprosy is self-explanatory (“say no more”) with
a set of preunderstood meanings based on biblical leprosy, which is con-
sistently depicted as divine punishment for sin (2 Kings 15). Yet Riobaldo
also challenges scriptural readings of the disease when he indicates that Sô
Candelário is angry because he cannot understand for what reason(s) he and
his family are being “punished.” The narrator underscores his empathy for
Candelário’s predicament when he wonders aloud, “Punishment, what for?”
and remarks that it was “because of that, certainly”—with “that” referring to
unwarranted castigation—that the jagunço is filled with rage. Candelário is
furious because he and his family have done nothing to “deserve” leprosy,
notwithstanding biblical ideology, which locates blame for this illness in
individuals and their families.
In the passage’s conclusion, Riobaldo identifies leprosy as characterized
by temporality, even as he delivers another subtle nod to Candelário’s origins.
Leprosy is a disease both slow and sudden, anticipated and surprising. It is
delayed in the body, ever-lurking but invisible until the moment it erupts.
Riobaldo’s description is clinically accurate because Mycobacterium leprae is a
slow-growing bacillus and, as the narrator notes, can present in a variety of
ways (Boeckl 8–23). Leprosy’s latent presence in the body may also be seen
as referring to nineteenth-century conceptions of Bahia, viewed by the Bra-
zilian elite as “backward” due to its predominantly nonwhite racial makeup
(Romo 14). The “backwardness” of leprosy mirrors the alleged backwardness
of the Afro-Brazilian region that—we are led to surmise—is Sô Candelário’s
birthplace. That the disease is simultaneously foreseeable and unpredictable
relates back to the matter of family history. Having watched his older male
relatives develop the disease, Candelário, too, is expecting to fall ill. If (or
when) he does, though, it could still come as a shock: having proliferated
inside his body for years, the disease will give the impression of striking
swiftly via the eruption of cutaneous lesions or other disturbing symptoms.
The disease is linked explicitly to the patriarchal branch of the Candelário
line; no female family members are ever declared leprous. Leprosy in GSV
is a masculine affliction, an unexpected finding given that it was associated,
in most other literary and cultural (con)texts, with women (Edmond 56).
Riobaldo expounds on how Sô Candelário’s disease affects every facet
of his life and identity:

Sô Candelário had a habit: he was constantly lifting up his shirt,

staring at his arms, the tip of his elbows, and scratching at his
164 Valéria M. Souza

skin until it bled. And he carried a little mirror in his pocket,

in which he would steal glances at himself. Totally damned. We
knew he took certain remedies—he was the first one up every
morning at daybreak, and he’d drink theriac and then head down
toward the edge of the creek going naked, naked, like a Jabiru’s
leg. (203–204, trans. altered)

The character is consumed by fear of his “family curse” and is continuously

peeking under his clothing, inspecting his bare flesh, even clawing at his
skin to the point of drawing blood—as if desperately trying to excise the
leprosy from within. Candelário probably uses his pocket mirror to inspect
areas of his body that would otherwise be impossible to view (for example,
his shoulders or back, or the backs of his limbs). Riobaldo says that Sô
Candelário “steals” [furtar] glances at himself, suggesting an element of fear,
shame, or some combination thereof at play in this behavior. The jagunço
may secretively sneak glimpses of his body because he’s frightened of what
he’ll find, or concerned that others will see him scrutinizing his flesh and
label him leprous. Based on Riobaldo’s previous comments, Sô Candelário’s
family legacy is well known in the backlands, but what remains unclear is
the extent to which Candelário knows that others possess this knowledge.
The “family curse” may be the subject of gossip behind his back, leading
him to erroneously believe that his comrades are less aware of his predica-
ment than they actually are.
Despite the jagunço chief ’s secrecy, it is common knowledge that he
takes “certain remedies.” The character’s daily ritual consists of rising at
dawn, imbibing theriac, and bathing nude in local streams. That theriac is
a central part of Candelário’s regimen is germane to this analysis because of
the drug’s ancient and medieval provenance, list of ingredients, and history
of use. Originally formulated by the Greeks, its name means “pertaining
to animals” (Rawcliffe 220). Because one of the four humoral types of
leprosy was identified with snake-like characteristics, theriac, with its ser-
pentine components, was thought to be a particularly effective therapy for
the prevention and treatment of the disease (221). Rawcliffe emphasizes the
drug’s role as “a central pillar in medieval pharmacopoeia” (220). Its pro-
duction was tightly regulated, restricting use of the panacea to the wealthy,
although knockoffs—what Rawcliffe refers to as “bastardized” versions—
were available to individuals of varying socioeconomic backgrounds (221).
Theriac was available for purchase as late as 1884 and, since no effective
treatment for leprosy emerged until the mid-twentieth century, continued
to enjoy popularity as a homeopathic medication up until the end of the
nineteenth century. Sô Candelário’s diligent bathing is another important
 Sô Candelário’s Inheritance 165

signal, as medieval leprosy patients were often advised to bathe and scrub
vigorously at their skin in an effort to “restore lost feeling to desensitized
limbs” (Rawcliffe 227).
The combination of approaches that the jagunço employs in order
to detect, monitor, and prevent or treat leprosy reveals quite a bit. Given
the high price and difficulty in obtaining theriac, it is fair to assume—bar-
ring the usage of bastardized formulas—that Candelário is well-connected
and at least reasonably affluent. The character’s status as a leper, like his
birthplace and race—both attributes with which his leprosy is inextricably
bound up—is ambiguous (does he already have the disease or is he merely
paranoid about developing it because of his family history?), and his choice
of theriac and morning baths do nothing to dispel this uncertainty, because
these methods were used prophylactically and therapeutically. Candelário’s
chosen regimen situates him squarely on the divide between ancient/medi-
eval and contemporary: during the period in which the narrative of GSV
unfolds, leprosy was still articulated, by and large, as an “ancient” or “bib-
lical” disease, with the only available treatments antiquated remedies that
happened to persist into the modern era.
It is by returning to the issue of race that we can begin to probe in
greater detail the “modern” dimension of the jagunço’s disease. In the passage
cited earlier, Sô Candelário’s race is reintroduced via the comparison to a
Jabiru bird. What is most memorable about the beast is the color scheme
of its feathers and body: its head, upper neck, and legs are featherless and
black, whereas its plumage is typically white. This chromatic pattern, like
that of the emerald tree boa, vividly evokes biblical “white leprosy” (2
Kings 5:27; Numbers 12:10; Demaitre 177–178) and the often dramatic
presentation of hypopigmented, hairless patches or spots on the bodies’ of
darker-skinned victims of tuberculoid leprosy. Candelário’s nudity is likened
to the Jabiru’s leg, in what is perhaps a comment on his race (Afro-Brazilian)
and build—long and slender.
During the late nineteenth and early twentieth century, leprosy was
becoming increasingly racialized and sexualized (Edmond 9). Nancy Leys
Stepan, who pioneered research on international constructions of “the tropi-
cal,” notes that “the category ‘race’ was removed from the Brazilian national
census after 1890,” adding: “Since no census was held in 1900 or 1930,
and race was not counted in the censuses of 1910 and 1920, [race] was
not counted as a factor in the Brazilian population for 40 years” (131).
Paradoxically, even as this category was being removed from the national
census, Brazilian physicians were becoming increasingly embroiled in a series
of debates on the subject of race and the transmission of leprosy, which
played out in a dramatic fashion in the pages of the Gazeta Médica da Bahia
166 Valéria M. Souza

(Romo 25). One camp downplayed the role of race in epidemiology, while
their detractors swore by racially deterministic models of disease transmis-
sion. Unlike European leprologists, Brazilian experts complicated the neat
separation of people into totally distinct racial categories like “black” and
“white,” preferring instead to make vaguely defined “intermediate” racial
groups—in particular mulatos—the nuclei of their projects, as the principal
figures onto whom disease was projected (Rodrigues 20: 105–113).11 Brazil-
ian sociologist and anthropologist Gilberto Freyre is notorious for having
based an entire theory of national identity—Lusotropicalism—on racialized
tropes of family. Lusotropicalism emphasized “hybridization” as a tool of
nation-building that originated with the Portuguese in Europe and was
then carried over into Brazil via Portugal’s colonial enterprise (66–69). For
Freyre, the history of Brazilian mestiçagem is intimately bound up with that
of certain diseases such as syphilis and leprosy. What racial hybridization
introduces is the possibility of the uncertain—the “intermediate”—a cat-
egory whose propagation became synonymous with the spread of disability.
Members of the international scientific community, including Brazil-
ians like Freyre, shared a common understanding of the “tropical”—that
is, the concept of environment and race as interconnected, with special
differences in how “tropical” versus “temperate” zones acted on white and
nonwhite bodies who inhabited “the tropics” for any length of time. In this
sense, the work of Brazilian thinkers and the development of tropical medi-
cine as a discipline cannot be logically disentangled from one another. Just
as Freyre’s Lusotropicalism depends on the enmeshment of geographical and
genealogical factors, tropical medicine departs from the principle that most
Europeans, by virtue of their origins in “temperate” climates, are inclined
to become sick when traveling or living for extended periods in “tropical”
zones, to which they are (culturally and racially) maladapted. Both models
posit racial characteristics as climatologically dependent, with different races
best suited to the climates that originally produced them and the “hybrid”
offspring of various races portrayed as hazardous disease vectors. In addi-
tion, both Freyre’s doctrine and tropical medicine share a vision of “the
tropics”—and by extension their progeny—as fundamentally “unhealthier”
than “temperate” zones (Freyre 78), a perception that would later become
refigured in Brazilian literature as the “sick rural” (Klanovicz 49–51).
This digression brings us full circle, back to the two characters through
whose stories the central tenets of tropical medicine and Lusotropicalism
play out in Rosa’s novel. Sô Candelário and the lazar are in many ways polar
opposites, but it would perhaps be more accurate to say that they exist along
a spectrum—one that incorporates a variety of overlapping and frequently
contradictory beliefs about the nature, clinical manifestation, and modes of
 Sô Candelário’s Inheritance 167

transmission of leprosy. Riobaldo’s interaction with the lazar can be regarded

as a postcolonial encounter because it inverts the power dynamic of the
stereotypical “first encounter” found in classics such the Carta of Pêro Vaz
de Caminha. If—as I have been asserting throughout this essay—constructs
of race and leprosy are interconnected in GSV, then all signs point to the
lazar being white. Though the lazar’s race is never identified, this is perhaps
due to what some scholars call the “invisibility” of whiteness (Garner 42–46;
Frankenberg 72–96). There is only one substantive indication of the lazar’s
race: he suffers from lepromatous leprosy (LL), the subtype most common
among Caucasians of European descent (Boeckl 9).
If the character is indeed white, then Riobaldo’s meeting with him is
effectively a rendezvous with Brazil’s “European granddaddy”—the colonizer
who invaded and brought leprosy with him, both directly in the form of
his own infected body and indirectly through the importation of West
African slaves he had sickened earlier in his travels, prior to the eighteenth-
century boom in the slave trade (Monot et al. 1040–1042; Grimm 936).
The lazar, viewed from this perspective, would be the patriarch of leprosy
in Brazil. Since Riobaldo is probably not white (Bolle 276–277) and the
lazar probably is, the men’s chance meeting in the forest rewrites the “first
encounter”: instead of Europeans disembarking on Brazilian soil and marvel-
ing over the sight of scantily clad “natives,” the narrator-protagonist, himself
of native blood, ventures into the periphery of the sertão and accidentally
discovers the horrifying sight of a (European) leper in the advanced stages
of the most aggressive form of the disease. And, like European colonizers
who regularly compared indigenous and African peoples to beasts and who
sought to dominate and control their bodies, Riobaldo envisions the man
in the tree as serpentine and wrestles with the desire to exert the ultimate
form of control over him by ending his life.
Sô Candelário and the lazar embody, as characters, various facets of
leprosy. If the lazar is a classic “wild” leper, Candelário is a “tame” one.
Like the two furthest extremes of the Ridley-Jopling scale, Sô Candelário
is “tuberculoid” (TT) and his counterpart is “lepromatous” (LL). While
the lazar is more clearly associated with medieval and ancient ideas about
leprosy—cementing his status as archaic—Sô Candelário incorporates over-
lapping elements of both medieval and modern notions of the disease. The
racialized component of leprosy, in conjunction with other textual clues,
reinforces the idea that the lazar is white and Candelário is at least part Afro-
Brazilian. As the jagunço chief scours his flesh in search of “spots”—lighter
areas of discoloration that are often the first manifestation of tuberculoid
leprosy—he evokes (Luso)tropical theories about the “whitening” and “dark-
ening” of Brazil (Skidmore 64–69). At any moment, a tinge of “whiteness”
168 Valéria M. Souza

may peek through Candelário’s darker skin—or be subsumed by his overall

coloring of “blue wheat, almost black” (Rosa 200, trans. altered). The threat
of these lighter “spots” for which the jagunço searches exhaustively (even as
he dreads finding them) can also be read as traces of the lazar waiting to
sprout forth. For while the lazar’s disease is contagious, the jagunço chief ’s
is undeniably inborn. With the colonization of Brazil regarded as a “family
affair” à la Freyre’s doctrine of Lusotropicalism, leprosy “runs in the family”
more broadly speaking. Sô Candelário’s inheritance may well come from his
father and older brothers, but farther back—way back in the woods, at the
very edge of the sertão—it descends from the branch of a much older tree.
It is Brazil’s colonial legacy, passed down from Europe.

Notes

1. It was within this cultural and historical milieu of beliefs about “the
tropical” that a young João Guimarães Rosa came of age. Born in Minas Gerais
in 1908—just a decade after the publication of Manson’s Tropical Diseases—the
author began his education at the College of Medicine of Minas Gerais University
in 1925. In his career as a medical student, a practicing physician, and eventually
a Brazilian diplomat traveling through Europe and Latin America, Rosa would have
been widely exposed to the burgeoning new field of tropical medicine, along with
prevailing theories about relationships between race, climate, and illness espoused
in texts by Freyre and his contemporaries
2. The impairment/disability binary posits “impairment” as an underlying
biological or medical condition and “disability” as the position of subjugation cre-
ated by environments hostile towards non-normative modes of embodiment. The
problem with the biologically deterministic formulation of “impairment” is that,
like the “sex” of feminism’s sex/gender binarism, it presumes a neat separation of
“biological” and “social,” which arguably cannot be said to exist. Just as “sex, by
definition, will be shown to have been gender all along” (Butler 11), “impairment”
and “disability” can be conceptualized as synonyms, each referring to an interactional
configuration simultaneously biological and social in nature (Schriempf 68).
3. All English translations have been adapted from James L. Taylor and
Harriet de Onís’ 1963 version of Rosa’s work.
4. The British Medical Journal reported, as late as the nineteenth century,
that “lepers instinctively hide themselves” (“Spread” 1056).
5. Although there are several different systems for classifying leprosy, it is
helpful to think of the disease in terms of two basic subtypes: tuberculoid and
lepromatous. Individuals with low or no resistance to leprosy are most likely to
develop the more aggressive lepromatous form (LL), whereas those with some or
high immunity are prone to the potentially benign tuberculoid variety (TT). His-
torically, lepromatous leprosy was most common among Europeans, indicating that
genetics play a role in immunity or lack thereof (Boeckl 9).
 Sô Candelário’s Inheritance 169

6. GSV’s most despised characters are consistently referred to using either

the third-level demonstratives aquele(s)/aquela(s) or the second level demonstratives
esse(s)/essa(s), both of which mean “that one” or “that thing.” João Adolfo Hansen
identifies this pattern as a revamping of the Latin deictic iste, used to connote
contempt (147).
7. These suffixes (with –ão/zão being masculine and –ona/zona feminine)
function by conveying the idea of amplification or intensification—usually to com-
municate that a given noun is “bigger” than average, but sometimes also adjectivally
to indicate that something or someone is extra “impressive,” “powerful,” and so on.
Some concrete examples include: livro/livrão (a book/a big book); mulher/mulherona
(a woman/a striking woman).
8. Foucault famously asserted that medieval lepers were “declared dead”
(Madness 6–7), but this is not historically accurate (Rawcliffe 13–43). Interestingly,
lazarar-se appears once in GSV as a reflexive verb meaning “to die” (Rosa, GSV
37), but this does not reflect its overall meaning in Rosa’s work.
9. The novel thus anticipates and, in its own unique way, responds to
ongoing contemporary debates in Disability Studies regarding the taxonomy of
“illnesses” versus “disabilities.”
10. Besides featuring a nonlinear narrative with no chapter or section breaks
for more than 600 pages, GSV is exceedingly difficult to read (much less translate)
as a result of having been written in an artificial language, comparable to Homeric
Greek, which uses Brazilian Portuguese as a base but incorporates elements from
dozens of other languages and freely mixes archaic and colloquial registers. For this
reason, it is somewhat absurd to suggest that Riobaldo’s monologue becomes any
less “jumbled and quasi-incoherent” as the book progresses, but it in fact does. The
first 50 to 100 or so pages of the 600-plus page text are the most incomprehensible,
reading like a discombobulated stream-of-consciousness written, as one Brazilian
student aptly put it, “in Hungarian” (Hansen 119, trans. mine).
11. See also Rodrigues 20: 205–211, 301–314, 358–368, 404–409 and 21:
121–132, 225–234, 255–265, 445–455.

Works Cited

“Bahia.” November 1, 2014. www.bahia.com.br/en/page/geography

Barnes, Djuna. “How it Feels to Be Forcibly Fed.” Web. November 1, 2014.
Boeckl, Christine M. Images of Leprosy: Disease, Religion, and Politics in European
Art. Kirksville, MO: Truman State UP, 2011.
Bolle, Willi. grandesertão.br. São Paulo: Duas Cidades, 2004.
Butler, Judith. Gender Trouble: Feminism and the Subversion of Identity. New York
and London: Routledge, 1990.
Demaitre, Luke. Leprosy in Premodern Medicine: A Malady of the Whole Body. Bal-
timore: Johns Hopkins UP, 2007.
Edmond, Ron. Leprosy and Empire: A Medical and Cultural History. Cambridge:
Cambridge UP, 2006.
170 Valéria M. Souza

Foucault, Michel. Madness & Civilization: A History of Insanity in the Age of Reason.
New York: Vintage, 1965.
———. “Different Spaces.” In Aesthetics, Method, and Epistemology. Edited by James
D. Faubion, translated by Robert Hurley et al. New York: New Press, 1998,
175–185.
Frankenberg, Ruth. “The Mirage of an Unmarked Whiteness.” In The Making and
Unmaking of Whiteness. Edited by Birgit Brander Rasmussen, Eric Klinen-
berg, Irene J. Nixeca, and Matt Wray. Durham, NC: Duke UP, 2001.
Freyre, Gilberto. Casa Grande & Senzala: Formação da Família Brasileira sob o Regime
da Economia Patriarcal. 51a ed. revista. Apresentação de Fernando Henrique
Cardoso. São Paulo: Global Editora, 2006.
Galvão, Walnice Nogeuria. As formas do falso: um estudo sôbre a ambigüidade em
Grande Sertão: Veredas. São Paulo: Editôra Perspectiva, 1972.
Garner, Steve. Whiteness: An Introduction. New York: Routledge, 2007.
Grimm, David. “Global Spread of Leprosy Tied to Human Migration.” Science
308.5724 (May 13, 2005): 936–937.
Hansen, João Adolfo. O o: A ficção da literatura em Grande Sertão: Veredas. São
Paulo: Hedra, 2000.
Jopling, W.H. Handbook of Leprosy. 2nd ed. London: Heinemann, 1978.
Klanovicz, Jó. “O Brasil no mundo rural doente: A construção do agricultor na
literatura em dois momentos da história brasileira (1914 e 1970).” Luso-
Brazilian Review 44.1 (2007): 45–60.
Monot, Marc et al. “On the Origin of Leprosy.” Science 308. 5724 (May 2005):
1040–1042.
Rawcliffe, Carole. Leprosy in Medieval England. Woodbridge, UK: Boydell Press,
2006.
Ridley, D. S., and W. H. Jopling. “Classification of Leprosy According to Immu-
nity: A Five-group System.” International Journal of Leprosy 34.3 (1966):
255–273. PDF file.
Rodrigues, Raimundo Nina. “Contribuição para o estudo de lepra no Estado de
Maranhão.” Gazeta Médica da Bahia 20 (1888–1889): 105–113, 205–211,
301–314, 358–368, 404–409. Web.
———. “Contribuição para o estudo de lepra no Estado de Maranhão.” Gazeta
Médica da Bahia 21 (1889–1890): 121–132, 225–234, 255–265, 445–455.
Web.
Romo, Anadelia A. Brazil’s Living Museum: Race, Reform, and Tradition in Bahia.
Chapel Hill: U of North Carolina P, 2010.
Rosa, João Guimarães. The Devil to Pay in the Backlands. Translated by James L.
Taylor and Harriet de Onís. New York: Knopf, 1963.
———. Grande Sertão: Veredas. [1956]. 19th ed. 3rd printing. Rio de Janeiro:
Nova Fronteira, 2001.
Schriempf, Alexa. “(Re)fusing the Amputated Body: An Interactionist Bridge for
Feminism and Disability.” Hypatia 16.4 (Fall 2001): 53–79.
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Skidmore, Thomas E. Black into White: Race and Nationality in Brazilian Thought.
Durham and London: Duke UP, 2005.
Souza, Valéria M. “Challenging Bodies: Representations and the Aesthetics of Dis-
ability in João Guimarães Rosa’s Grande Sertão: Veredas (1956).” Diss. U of
Massachusetts Dartmouth, 2013.
“The Spread of Leprosy.” British Medical Journal 2.1402 (November 12, 1887):
1054–1056.
Stepan, Nancy Leys. Picturing Tropical Nature. London: Reaktion, 2001.
Thomson, Rosemarie Garland. Extraordinary Bodies: Figuring Physical Disability in
American Culture and Literature. New York: Columbia UP, 1997.
Watts, Sheldon. “Dark Hidden Meanings: Leprosy and Lepers in the Medieval
West and in the Tropical World Under the European Imperium.” Epidemics
in History: Disease, Power, and Imperialism. New Haven and London: Yale
UP, 1997, 40–83.
Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability.
New York and London: Routledge, 1996.
“World Maps of Köppen-Geiger Climate Classification.” Web. November 1, 2014.
 Chapter 9

“A solidão da escuridão”
On Visual Impairment and the Visibility of Race

Melissa E. Schindler

It has been more than sixty years since the first staging of Nelson Rodrigues’s
controversial play, Anjo Negro (Black Angel), in Rio de Janeiro, yet its content
remains as inflammatory as ever.1 Anjo Negro depicts the torturous marriage
between Ismael and Virgínia, a black man and a white woman, characters
whom Abdias de Nascimento describes as “monsters created by racism” (De
Nascimento, “Teatro experimental” n.p.). Full of hatred for his own skin
color, Ismael blinds his white brother; rapes the woman who would become
his wife and then locks her away so she can see no other white people; and
then blinds his daughter, Ana Maria, so she won’t know he is black, only to
teach her to hate all black people, sleep with her, and lock her away, too.
His wife, Virgínia, successively murders three of their mixed-race children,
citing their skin color as a motive, and then has sex with Ismael’s blind
brother, Elias, in an attempt to exact revenge on Ismael. In order to “know”
race, the play suggests, one must see it. More significantly, it claims that in
order to hate someone because of his or her race, one need not see at all.
If Anjo Negro exposes and criticizes the truth of racism in mid-twen-
tieth-century Brazil, it only succeeds in this critique because it also portrays
visual impairment. Blindness makes the entire piece possible; it functions as
an analog for metaphorical short-sightedness and serves as the crux of the
play’s irony. Visually impaired characters Elias and Ana Maria act as indices
against which the audience is meant to measure the depth of metaphorical
blindness—in this case, the immorality and ignorance that produces racism.
The play denounces racism by casting racist people as “blinder” than those

173
174 Melissa E. Schindler

who are physically blind. Anjo Negro operates by a particular kind of irony,
one that is derived from the juxtaposition of three widely held assumptions:
that knowledge of self and other is achieved through physical sight (also
known as “ocularcentrism”), that race is always and only visibly marked on
the body, and that “blindness” is a pejorative term.
Anjo Negro raises the question: What is the relationship between race
and disability? More specifically, what is the relationship between race and
visual impairment?2 Robert McRuer has effectively shown that disability,
like gender and non-normative sexuality, had to be made visible on the
body in order for heterosexual able-bodiedness to become compulsory (10).
Although scholars and activists have long argued that race is a social con-
struction, one of the impediments to changing people’s perceptions of race is
the fact that the effects of racism are often physical, especially “in the histori-
cal context of transnational capitalism, where bodies encounter each other
often in violent collision such that captivity and mutilation are no longer
metaphors” (Erevelles 28). This is exacerbated by the casting of nonwhite-
ness as a disability. Historically, nonwhite bodies have been described vari-
ously as hyper-able (e.g., the hypersexualized African man), incapable (e.g.,
the myths of the so-called primitive, savage, uncivilized “native” invented
to justify colonial and imperial presence), or, finally, physically dis-abled
(e.g., science’s numerous attempts to map out racial inferiorities through
physiognomy). Race and disability, therefore, have always been inextricably
linked. This is especially true of the Americas, where, as Nirmala Erev-
elles argues, the institutionalized enslavement of people of African descent
“imbricated . . . race and disability in [the] collective formation of the black
disabled body” (39).
Given the wealth of twentieth- and twenty-first-century scholarship
dedicated to deconstructing the depictions of enslaved peoples and their
descendants in the Americas, the relative dearth of work on the intersec-
tion of race and disability comes as a surprise. Little has been published
on the subject since Leonard Kriegel’s landmark essay “Uncle Tom and
Tiny Tim: Some Reflections on the Cripple as Negro” (1969). In addition
to Robert McRuer’s and Erevelles’s earlier-cited monographs, the work of
the late Chris Bell perhaps most conspicuously addresses the relationship
between blackness and disability. Bell highlights and deconstructs this glar-
ing lacuna in an essay for the second edition of The Disability Studies Reader
(2010), in which he makes a “modest proposal” that we change the name
of the field to “White Disability Studies” to reflect its current audience
and object of study (275). While these publications certainly point to a
growing interest in the study of the intersection of race and disability in
 “A solidão da escuridão” 175

the United States, scholars like Bell and Kriegel struggle with the task of
“speak[ing] to both [Disability Studies and African American Studies] on
their own terms” (Newman n.p.).Within the Brazilian context, examination
of the intersection of disability and blackness in a text such as Anjo Negro
is made even more challenging by the relative newness of both disability
and Afro-Brazilian identity and history as recognized areas of study. And
much of what makes these fields “new” has less to do with a recent surge
in their academic popularity—as the concepts of disability and blackness are
recognized as subjects that scholars in other countries take up—and more
to do with concerns about what those concepts will mean in and for Brazil.
As the title of this chapter suggests, some Brazilian authors perceive a kind
of overlap between the experiences of blackness and of disability. Through
the phrase “a solidão da escuridão,” or the “loneliness of darkness,” Afro-
Brazilian author Miriam Alves equates the darkness of blindness with that
of blackness, pointing to a shared perspective based on a mutual experience
of sociocultural isolation. Indeed, I would like to suggest that by bringing a
Brazilian perspective to the junction of disability and African diaspora stud-
ies, as well as by limiting the concept of disability to visual impairment, we
gain an example of how to speak productively and simultaneously to both
fields in the Americas. If race is popularly thought to be a physical char-
acteristic, then people with visual impairment stand to make a significant
contribution to notions of race. Meanwhile, if sight is popularly construed
as the foremost avenue to knowledge, then Afro-Brazilian approaches to
the way that black identity is both envisioned and embodied likewise add
much to our notions of visual impairment.
To that end, this chapter examines how a range of texts represents
the relationship between blackness and blindness. The first section analyzes
a narrative by a European medical doctor in the nineteenth century who
treated enslaved Africans afflicted with visual impairment caused by the
Middle Passage journey. The second section looks at the short story from
which this chapter takes its title, Miriam Alves’s “A Cega e a Negra—Uma
Fabula,” in order to think about how contemporary authors are reposition-
ing blackness and blindness with respect to one another. The third section
discusses the way that a children’s book, The Black Book of Colors,3 conceives
of sight and color through the juxtaposition of what Vera Godoy has called
the book’s “three scripts,” that is, its use of Braille, Roman alphabet, and
drawings. Though in some cases separated by centuries, together these texts
confirm that blackness, to the degree that it is supposedly visible, and blind-
ness, to the degree that it is supposedly characterized by a lack of vision,
are undeniably linked in our discourses about race in the Americas.
176 Melissa E. Schindler

“Victims of a Physical Darkness”

The texts chosen for this study span different centuries, countries, and
artistic genres, and the scope of this heterogeneous archive attests to the
cross-cultural, transhistorical and cross-linguistic nature of the assumed link
between blackness and blindness. That being said, conceptualizations of
blackness and blindness in Brazilian literature and philosophy make a unique
contribution to the discussion about how race and disability are mutually
constituted. Due to Brazil’s largely mixed-race population, the country has
long cultivated a definition of race that differs from that most prevalent in
the United States. Whereas the “one-drop rule” rendered blackness hyper-
visible in the United States, insomuch as the identification of supposedly
visible characteristics of race could expose and incriminate those who sought
to “pass” as white, Brazil instituted no such legal code or social norm. In
theory, one could not be “outed” as an African, black, or Afro-descendent
individual attempting to “pass” as white if the expectation was that everyone
would strive to whiten themselves, either through miscegenation or through
nongenetic markers like education, wealth, marriage, and the accumulation
of property. By the beginning of the twentieth century, social and genetic
whitening (embranquecimento) had quite literally become a national project,
and today, many Brazilians continue to allege that a “one-drop” identifica-
tion would be moot in a country where the “new race”—a Brazilian, mestiço
race—emerged from the mixing of African, European, and Native American
genes, cultures, and social codes.4
Theoretically, then, race cannot be sighted on a Brazilian body, and
so the myth goes that racism does not exist (or exists differently) in Brazil.
Yet the same is not true in practice. In “the [so-called] ‘racial democracy,’ ”
Gizêlda Melo Nascimento writes, “there’s no need to ask what color a favela
is, or what is the color of the pain of being poor and discriminated against
in this society, which may hold many democratic festivities but meanwhile
can’t manage to eliminate fully its slavocratic practices” (G. Nascimento
51). In other words, there may not be an equivalent to the “one-drop
rule,” but racism is still marked visibly on the Brazilian body. Due in part
to the complex definitions of race and racism in Brazil and their perceived
relationship to the same concepts in the United States (or lack thereof ),5
Afro-Brazilian movements have not simply taken up U.S. parameters for
combating prejudice. Rather, scholars and activists strategically employ the
notion that race in Brazil has historically been defined as a discursive iden-
tity instead of as an innate trait. If race cannot be identified, then people
must claim it. Because popular criticism of affirmative action argues that
Brazilians are so socially and genetically mixed as to render categorization
 “A solidão da escuridão” 177

impossible, activists have begun to encourage people to “out” themselves as

black, often whether they identify as such or not.
Therefore, if the discourse of mestiçagem (cultural and genetic mixing)
has historically conveyed the notion that people could and should whiten
themselves, both literally and figuratively (something understood as virtu-
ally impossible in the United States), then the same goes for “blackening”
or “yellowing” oneself. Genetics does not assign race to you—you own up
to your race, just like you own up to any other characteristic. Brazilians
frequently employ the same Portuguese verb, assumir, to lay claim to any
identity trait. Whether you’re coming out of the closet, admitting to par-
ticular religious beliefs, publicly recognizing a biological child, accepting
a personality trait, taking on a new responsibility, or openly acknowledg-
ing your race (especially if you are identifying as black), you will use
the same word to perform all of these actions. One must assumir such
elements of identity, meaning that the act of accepting, owning up to,
declaring, or taking on an identity is a choice, not a biological given. No
one else can expose your ancestry and “assume” it for you.6 For advocates
of Afro-Brazilian identity, then, the objective is to encourage people to
assumir their blackness. When an individual “assumes” his or her black-
ness, asserts Elisa Larkin Nascimento, he or she “speaks from a point-of-
view that is articulated as a black person who understands him/herself as
something that has an inherent value.” And this perspective, this “internal
gaze . . . makes it such that someone can be Afrocentrist even though s/
he is white or Chinese or Japanese or Indian. But this person must assume
the gaze genuinely” (Duarte and Fonseca 26). For this reason, Maria Naza-
reth Soares Fonseca points to the example of white Africans who took on
black identities and voices during the struggle for independence in African
countries: “eram brancos, mas assumiam-se como negros”/ “they were white,
but they identified as black” (Duarte and Fonseca 51). Establishing one’s
black identity as separate from phenotype means taking on a way of see-
ing that is metaphorical; it means cultivating a worldview that recognizes
how race is socially constructed, how racism is embodied, and how sight is
both a literal and a figurative capacity. To return again to the title of this
chapter, it means, in other words, moving blackness away from the color
of one’s skin or, in the case of blindness, away from visual impairment,
to a shared social experience of “the loneliness of darkness” understood as
the loneliness of marginalization.
Sight has long served as a metaphor in literature and politics concern-
ing race in the Americas, yet the Brazilian notion of “assuming” an identity
is unique, not just in rethinking race but also in rethinking how race and
sight intersect. It avers that racial identity is not simply defined by how one
178 Melissa E. Schindler

is seen by others, but instead that race and sight are mutually constitutive.
“Assuming” a black identity requires first adopting the “internal gaze” that
Elisa Larkin Nascimento describes. In turn, assuming a black identity also
engenders a new vision of the external world. And here is where the Brazil-
ian concept of assuming one’s race becomes especially useful for the present
analysis of race and sight, because it moves away from ocularcentrism, the
notion that “vision is a necessary condition of knowing” (Bolt 541) to sug-
gest that race is not a visible characteristic and sight is not a natural capacity
of the eyes alone. With this understanding, then, we are better positioned
to understand how Brazilian texts containing blind and/or black characters
might be especially suited for contextualizing the transnational trope of
blindness and blackness in literary and historical documents.
The title of this section, “Victims of a Physical Darkness,” points to
the early historical convergence of visual impairment and race’s visibility. It
comes from a nineteenth-century account by Thomas Nelson, an English
medical doctor who boarded an illegal Brazilian slave ship and found that
hundreds of the enslaved people had lost their sight during the voyage
(Conrad 44). The doctor’s words are tellingly abstract. Meant to humiliate
and degrade those slave traders (and nations) that still practiced slavery—
that is, the aforementioned immoral “physical darkness”—the phrase also
betrays the way the doctor himself conflates physical darkness with a sup-
posed physiognomic one. That is, the “darkness” of slavery is akin to the
darkness of being blind, for both of which the so-called darkness of skin
serves as a visible metaphor. Thus, when the doctor bemoans the fact that,
“on the appearance of the negroes, no pen can give an adequate idea,” he
means that the effects of slavery cannot be articulated in written form, but
he also alleges, inadvertently or not, that race cannot be written; it can
only be seen (45).
Documentation of the nineteenth-century slave trade is rife with the
language of sight: vision’s excesses, its role in “enlightened” thought, and
the literal and figurative import of its absences. According to abolitionists,
one could only comprehend the horrors of slavery by seeing them (i.e., by
seeing Africans enslaved), and slavery, at its worst, lay in the figure of the
slave whose experience of the Middle Passage had robbed him or her of
sight. In the following excerpt, taken from the same medical doctor’s records,
note his excessive and interchangeable use of the language of vision loss and
squalor with respect to enslaved Africans (emphases mine):

On every side, squalid and sunken visages were rendered still

more hideous by the swollen eyelids and the puriform discharge
 “A solidão da escuridão” 179

of a virulent ophthalmia {a dangerous eye inflammation}, with

which the majority appeared to be afflicted; added to this were
figures shriveled to absolute skin and bone, and doubled up in
a posture which originally want of space had compelled them to
adopt, and which debility and stiffness of the joints compelled
them to retain.
On looking more leisurely around, after the first paroxysm
of horror and disgust had subsided. . . . The most of them des-
titute even of the decency of a rag, and all presenting as woeful
a spectacle of misery as it is possible to conceive. . . .
Not the least distressing sight on that pest-laden deck was
the negroes whom the ophthalmia had struck blind, and who
cowered in seeming apathy to all that was going on around. This
was indeed the ultimatum of wretchedness, the last drops in the
cup of bitterness. Deprived of liberty, and torn from their native
country, there was nothing more left of human misery but to
make them the victims of a physical darkness as deep as they
had already been made of a moral one. (44)

Among the many observations one might make about this quotation, two
are perhaps most significant. First, the passage clearly corroborates Robert
McRuer’s argument that “disability (and nonheterosexual identity) must be
visibly located elsewhere to allow for” what he calls “the epiphany of hetero-
sexuality” to occur (McRuer 24, 16). In order to normalize heterosexuality
and able-bodiedness, and in order for heterosexuals to out themselves as
such, disability and nonheterosexuality had to become excessively visible
(thereby “safely contained—embodied—in others” [24]). It seems nearly
impossible to talk about othering and embodiment without discussing the
construction of race and, certainly, this doctor declares his whiteness by
declaring his able-bodiedness. “The normalcy of ‘the sighted,’ ” contends
David Bolt, “depends on a notion of deviance in ‘the blind’ ” (543). Thus,
in contrast to the “squalid and sunken visages” of the “negroes whom
the ophthalmia had struck blind,” in contrast to their “hideous” appear-
ance, their “swollen eyelids” and the “debility” caused by their excessively
cramped quarters, the medical doctor simply “looks around” with “leisure.”
For the doctor, the “spectacle” is “distressing” and causes “paroxysms of
horror and disgust,” but, for the Africans he is describing, the reality of
that situation has taken their sight. Blindness in enslaved Africans enables
the white, European doctor to see, just as their hypervisibility as disabled
and black establishes his invisibility as a white man. Indeed, this example
180 Melissa E. Schindler

gives new meaning to Bolt’s assertion that “the metaphorical light in the
life of the [sighted]” rests on a “notion of darkness in that of [the blind]”
(543).
The next thing one takes away from this passage is a subtle slip in
the doctor’s discourse; intending to articulate horror at the Africans’ loss of
sight, he instead expresses horror at the sight of Africans. In other words,
what “pest” purportedly ladens the deck of the ship: the illness or the ailing
people curled up on it? And why does he suggest that women and children
who are “destitute” of clothing present “as woeful a spectacle as it is possible
to conceive?” Undoubtedly, the sheer number of people whose health has
been mortally compromised must have seemed overwhelming, but surely
this medical doctor had seen other people from his own country who were
equally sick. Dea Hadley Boster informs us that while “many abolitionists
relied on powerful images of disability . . . to represent the institution of
slavery,” in fact, it was not slavery itself so much as “the fear of disability,
defect and helpless reliance that accompanied enslavement” that fanned the
flames of their “moral outrage” (67–68). Well-intentioned or not, this doctor
drew on the collective fear of so-called physical abnormality to condemn
slavery, thereby linking blackness with disability.
The doctor writes that “the sight of negroes . . . struck blind” consti-
tutes the “ultimatum”—the limit—“of wretchedness.” He rightfully suggests
that what leads to the ophthalmia only accentuates the suffering that must
have accompanied the enslaved people’s illness and loss of vision. Yet his
is not a mere expression of sympathy, since his sentimentalist discourse, as
focused as it is on reproducing the sight of mass blindness, ultimately posi-
tions black, disabled bodies at the extremity of squalor. Indeed, he makes
this abundantly clear in his earlier description of arriving on the boat, for
which the preparation of his “experience, aided by . . . imagination, fell
short of the loathsome spectacle which met [his] eyes.” The loathsome spec-
tacle in question is not the sight of sick people, but rather the sight of “three
hundred and sixty-two negroes, with disease, want, and misery stamped upon
them with such painful intensity as utterly beggars all powers of description”
(43). Meant to act as a synonym for the effects of enslavement, the “pain-
ful stamp” is in fact the confluence of disability and blackness, constructed
so that the doctor might situate himself at the center of so-called human-
ity, while enslaved Africans “scarcely retain the form of [it]” (45). Even if
abolitionists would later rework the metaphor of blackness in order to cast
the trade in human commodities as a “moral darkness,” what nevertheless
remained was a link between squalor, sightlessness and the construction of
blackness mapped onto the slaves thought to embody all three.
 “A solidão da escuridão” 181

Synesthetic Language and Afro-Brazilian Metaphor

As we have seen, in the nineteenth century, literature inspired by the slave

trade tended to pathologize race and disability by articulating one through
the other. Even in abolitionist texts that decried the immorality of slavery,
the disabled, black body always served as a visual signifier for slavery’s dete-
rioration of the moral fabric. By describing the sight of bodies without sight,
traders and abolitionists alike attempted to establish their own normativity.
In the twentieth century and the beginning of the twenty-first, however,
new articulations of blackness and blindness gained popularity—figures that
are predicated on supplementing the “lack” attributed to race and disability
with the capacity for “magic.”
In the United States over the last fifty years, the term “magic/al negro”
entered popular discourse as a reference to a specific, stereotyped black
figure in film and literature. Nnedi Okorafor-Mbachu describes the “Magi-
cal Negro” as a “black character—usually depicted as wiser and spiritually
deeper than the white protagonist—whose purpose in the plot was . . . to
help the protagonist realize his own faults and overcome them.”7 This char-
acter has no interior or separate life of his or her own. His or her wisdom,
spirituality, and magical powers exceed the norm, but he or she only uses
them for the good of the main (white) character. Although no one has
extended this critique of stereotype to blind film or literary characters, there
is no doubt that a type of Magical Blind Person8 often performs a similar
function in stories about white protagonists. Alternately dis-abled and super-
(dis)abled, the “Magical Blind Person” endeavors to make his peers and the
audience see “differently.” Like the wisdom of the Magical Negro, the acuity
and overly developed senses of super-disability exists only to serve others.
In other words, the Magical Blind Person makes possible the “heteronorma-
tive epiphanies” that give other characters a “sense of subjective wholeness,
however illusory” (McRuer 12).
In Brazil, while contemporary representations of blindness and the ste-
reotype of the blind visionary rely in part on the import of international film
and literature, Afro-Brazilian spiritual practices cultivate an alternative rep-
resentation of human sight and its association with knowledge production.
Visual representations of the figures known as orixás, deities who are part
of the West African/Christian/American syncretic practices called Umbanda
and Candomblé, often show them with their eyes obscured by strings of
pearls or other coverings. Claudio Marcio de Carmo, a university professor
and pai-de-santo (the head of an Umbanda house of worship), explains the
depiction of orixás thus: “An orixá sees with divine eyes. Furthermore, it
182 Melissa E. Schindler

sees much more than earthly eyes, which remain closed in order to highlight
the earthly limitation that does not affect the orixás. As such, aside from a
decoration, pearls falling in front of the eyes actually echo and reflect the
divine vision that exists beyond human knowledge” (personal communica-
tion). That is, human sight makes possible a particular, limited kind of
knowledge. Pearls and eye covers suggest that in order to “know” the world
more profoundly than humans, the orixá must “see” differently. And in
that way, Afro-Brazilian syncretic religious practices actually destabilize the
presumed link between knowledge production, light and visual ability, and
lead to new versions of identity formation and knowledge production that
are not predicated on sighting blackness or race, but rather on engaging
with the world through blackness.
The depictions of the orixás’ sight can be contextualized through Leda
Maria Martins’s groundbreaking ethnography, Afrografias da Memória (Afro-
graphias of Memory). In this text, Martins puts forward the notion that an
Afro-Brazilian religious celebration known as a congado is characterized by its
use of what she calls “synesthetic language.” That is, denied the tools to write
and record their own histories, Afro-Brazilians created a language based on
synesthesia: the intersection and crossing of senses. Although on the one hand
a practice of cultural resistance, “synesthetic language” is also an alternative
process for producing knowledge about the world, one that notably relies on
more than sight alone. She describes this language as blending “together the
words, gestures, music and enchantment that are inherent to and present in
the signifyin(g) and significant materiality of the congado’s songs and celebra-
tions; a diction that [doesn’t] elide the subject and the object, the breath and
the blade, the rhythm and the color” (Afrografias 20). Synesthetic language
does not posit a kind of supernatural or superhuman site of knowledge; it
merely promotes a fuller one. Similarly, the obstruction of human sight in
the orixás does not mean to attribute “magic” to the visually impaired. It
simply moves the social and literary imaginary away from knowledge and,
by extension, metaphor as primarily visual phenomena.
The notion that metaphor is mutually and synesthetically constructed
is the precise lesson of Miriam Alves’s short story, “The Blind Woman and
the Black Woman—a fable,” published as part of her 2011 collection Mulher
Mat(r)iz. Upon first examination, it would seem that the story merely uses
“the language of disability” as Chris Ewart suggests, “to affirm (an often-
subordinate) voice to elucidate agency and figurative empathy for other
oppressed and exploited populations” (Ewart, qtd. in Erevelles 39). Actually,
there is something more complex going on in Alves’s story, based in part
on the fact that the relationship between blackness and blindness has its
own, unique, historical-materialist manifestation in Brazil.
 “A solidão da escuridão” 183

The story describes the meeting of Cecília, a Brazilian woman of Afri-

can descent, and Flora (short for Floresta Brasilia), a blind, presumably white
woman. It begins in a moment of crisis for Cecília. Due to an unexpected
event at the bank, in which a fed-up Cecília refuses to accept the subtle
targeting of system(at)ic racism, the two women form a sudden friendship.
In the midst of her musings, Cecília recalls how quickly their friendship
grew, based in part on a pleasurable sense of mutual benefit. “Cecília,” we’re
told, “interpreted the world of sight for Flora” (34). Meanwhile, Flora liter-
ally “opened doors” for Cecília, because as a white, blind woman, she had
more privilege than her friend.9 They had literally met at the door to the
bank: a door that had been historically closed to Cecília but subsequently
opened for her when accompanied by Flora. Their interdependence is not a
disabling codependence, but a relationship that gives both of them unprec-
edented physical access to the world.
One day, at lunch, a casual event tests their relationship. Cecília
accompanies Flora to the bathroom, and on the way, a man starts to walk
menacingly down their same path. A lifetime of experience tells Cecília that
she should make way for this individual, who will not make way for her
(as a black woman), but suddenly, the man moves aside. The waiter had
caught the man’s eye, conveyed that the black woman was leading a blind
woman, and the change in his behavior “took place through the subtlety
of glances” (35). Cecília suddenly felt alienated from her friend, who, not
having witnessed the conversation of glances, didn’t perceive what had hap-
pened. But Flora has certainly perceived a change in Cecília’s temperament,
as she withdraws from Flora, and proceeds to immerse herself in her reflec-
tions about their relationship.
Later, having spent hours contemplating a spider spinning its web,
Cecília has a revelation. She understands that a spider moved between the
two women, spinning a “web of life,” built of individual strings. And this
web is composed of “fragile, beautiful symmetries.” Thus the story ends
with a black woman’s epiphany, brought on by a blind woman. “Beauty. It
was this: beauty!” Cecília realizes. “[She] and Flora . . . transformed their
painful destiny, the stigmas (just as Flora insisted in reminding her), into
the pleasure of sight. It was this: sight!” (36). When Cecília calls Flora to
narrate her encounter with the spider, the metaphor of its web, and their
shared pleasure in sight, Flora simply tells her friend that she already knew
the “web’s secret.” Once again, the person who is visually impaired seems
to function as a person empowered with mystic vision. But unlike typical
depictions of blind characters, in this story, the blind individual and the
one who has the revelation share a “painful destiny” and the experiences of
being stigmatized. This is not an example of what Carrie Sandahl calls the
184 Melissa E. Schindler

“overcoming narrative,” where a “previously whole person adjust[s] to the

‘brokenness’ of disability by getting over a bad attitude” (584). Nor is it
an instance of using a blind character to show a sighted person how to see
differently or to be grateful for her sight. The story posits neither of these
characters as in need of fixing or rehabilitation.
Instead, Cecília and Flora share a visual understanding of the world.
Rather than “focus[ing] on eliminating disability,” this story suggests that
the characters might “revel” in it, finding in their shared experiences of
stigmatization a mutual, imaginative language (Sandahl 584). Certainly,
Alves depicts Flora as taking on seeing eyes through her interactions with
Cecília—through her friend’s descriptions of her surroundings. But that
does not mean that Flora needs to sit and watch the spider to understand
the metaphor of its web, or that Flora won’t describe the web of interracial
and interabled friendship as an object that can be seen, using a vocabulary
filled with terms pertaining to vision. When Cecília excitedly tells her friend
about the invisible web that connects them, Flora’s response that she “already
knew” does not allude to some kind of superhuman blind omniscience,
but simply to the fact that she, too, has read and interpreted the metaphor
of the web. By the end of the story, we understand that the two women
have adopted—assumed—a vision that starts from within. It is an “internal
gaze,” one made uniquely possible by the meeting of blackness and blind-
ness. Unlike the Magical Negro and the Magical Blind Person—and unlike
the “characters” who appeared in the accounts of abolitionists—Cecília and
Flora demonstrate a method of knowledge production that neither elides
the differences between them nor reduces either one to a mere plot device
in the other’s transformation.

Between black and Black in The Black Book of Colors

Another way to approach the notion that the metaphors of race and blind-
ness are written and read through multiple senses is to articulate new under-
standings of reading and writing. In advancing a concept of “three scripts”
(três escritas), Vera Godoy has done just that. Based on her research of
the work of blind Brazilian author, Elizete Lisbeth, Godoy contends that
those books that employ drawn images, text written in Portuguese script,
and text written in Braille, offer an expanded kind of reading experience.
Meant for blind and sighted children alike, Lisbeth’s work makes readers
aware that we assimilate metaphors through more than just our eyes. And it
accomplishes this by physically changing the way people read. The presence
of Braille—which, according to Godoy, both sighted and blind readers use
 “A solidão da escuridão” 185

when they read the books—is only the most immediate example of how
we experience metaphors through multiple senses. Children who sit and
read with adults (blind or sighted), take in the images through the sight,
smell, touch, sound, and, in some cases, even the taste of the texts at hand.
If the social and political process of learning racism requires that we
forget everything about reading except the language of visual characteristics
that supposedly identify race, then books utilizing three scripts force us to
remember how metaphors develop through more than words and images.
Though not written by Lisbeth, The Black Book of Colors (O livro negro das
cores), by Menena Cottin and Rosana Faría, is one such book. Presumably
intended for children, this text sets out to define colors. Yet the paper, the
Braille, and the images embossed on it are completely black, and the words
written in Portuguese are typed in a white font. In the story, a single char-
acter—Tomás—describes various colors by associating objects and sensations
with them. “Red,” for instance, “is a little bit tart, like a strawberry, and
sweet like watermelon, but it hurts when it appears on a bruised knee.”
Yellow “tastes like mustard,” green “smells like recently cut grass,” and blue
“is the color of the sky when the sun heats the tops of our heads.” Every
definition is illustrated threefold, but ultimately, only in black and white.
Both in word and in fact, the book demands an overt interaction with our
bodies, through its use of words as well as its three scripts.
Besides reminding readers of how metaphors are created and perceived
through our various physical experiences of the world, this particular transla-
tion of the book (from Spanish into Portuguese) makes an intriguing state-
ment about race. Portuguese distinguishes between the color “black” and
the sociopolitical category “Black”; the first is preto and the latter is negro.
For a Portuguese speaker to refer to a person of African descent as preto
is generally considered offensive, whereas negro or negra is not. Thus, in
using negro rather than preto in the title of The Black Book of Colors, the
translator, Rafaella Lemos, taps into the potential embodied in three scripts
to make blindness talk about race.
There is no doubting the intent behind Lemos’s translation. After all,
the Portuguese version of the book has been published with Pallas Editora,
a respected Brazilian publishing company whose website locates it “in the
vanguard of Afro-Brazilian culture.” But beyond that official affiliation, the
book itself also recognizes the difference between black and Black (preto
and negro). When Tomás defines black, “the king of all the colors,” he uses
the word preta, thereby separating the Black (Negro) of the title from the
black (preta) of the color spectrum. As a result, readers come to under-
stand “Blackness” as a way of seeing that is intimately and inextricably
interwoven with blindness, because the book casts blindness and blackness
186 Melissa E. Schindler

as non-normative methods of knowing the world. The Black Book of Colors

establishes itself as an instruction manual for the process of reading vis-à-
vis a variety of senses—for the perspective that one cultivates through the
act of “assuming” blackness. The book is not necessarily a lesson in seeing
past race—though race is undoubtedly one of the metaphors that it seeks
to deconstruct. Rather, it posits an internal vision, achieved through the
employ of various sensory capacities, where blindness and blackness meet.
The intent is neither to do away with color nor to do away with sight,
but rather to suggest that both consist of more than visual language would
make them seem.

Coloring the World, Blackly

Nirmala Erevelles’s critique of posthumanism sounds an apt, convincing, and

timely warning against the overreliance on discursive tools like metaphor
in scholarly theorizations of disability and blackness. Her analysis is most
pointed when it works within a framework that recognizes how “disability/
impairment and race are neither merely biological nor wholly discursive”
(48). That said, discourse and biology are not a binary, as the meeting of
blindness and blackness repeatedly reminds us. Critics of the social model of
disability, which argues that disability is not an innate characteristic but rather
emerges through our discursive and physical interactions with the world,
contend that this model sometimes overlooks the way that disability is lived
and embodied. Along these lines, as Tanya Titchkosky proposes: “our on-going
textual encounters with disability are interactive scenes where we can engage
and scrutinize the contemporary cultural organization of embodiment” (11).
Similarly, works like The Black Book of Colors foster embodied, interactive
“textual encounters.” Indeed, because Brazilian notions of racial identity are
not wholly dependent on sighting the raced body but instead on “assuming”
blackness in text or speech, discursive portrayals of blackness and blindness
in Afro-Brazilian literature often propose a practical use for discourse.
To wit, in an interview about Afro-Brazilian literature, scholar Oswaldo
de Camargo elegizes the “unique and metaphorical vision” of Afro-Brazilian
writing, a vision that shapes literature, “coloring it blackly” (colorindo-a
negramente) (Duarte and Fonseca 42). Colorindo, which is the gerundive
form of the verb colorir, has several meanings. On the one hand, it can
simply mean to give color to something. But an object that is colorido can
be either “colorful” or “multicolored.” Regardless of how one interprets
colorindo, however, the adverb “Blackly” (recall the distinction between
preto and negro) nevertheless functions as the most significant word of the
 “A solidão da escuridão” 187

phrase. Afro-Brazilian writing is marked not by the skin color of the person
penning the text, but rather by the “unique and metaphorical” perspective
it adopts of the world. Consider how Conceição Evaristo10—writer and
longtime collaborator of Alves—echoes Camargo’s ideas in a description of
her development as a writer:

I believe that the genesis of my writing came out of the accu-

mulation of everything I heard since my infancy . . . I would
close my eyes . . . and then I turned on all of my other senses.
My whole body received words, sounds, murmurs, voices that
were laced with pleasure or pain. . . . With my eyes closed, I
would mould the faces of my characters, real and speaking. It
was a game of writing in the dark. In the body of night. (Duarte
and Fonseca 390)

Evaristo marks the “beginning” of her writing process with the closing of her
eyes and “turning on” of her senses so that her “whole body” might receive
the sound-images of her texts. It is no accident that Evaristo draws on the
double entendre of writing “in the dark”; like Camargo, she undermines
the pejorative associations with vision impairment and black identity to
involve the whole of her body in creating a perspective of the world that
is colored Blackly.
As we have seen, assuming a black vision necessitates redefining vision
itself. In fact, we would do well to take the notion of seeing Blackly as a
critical response to the “second sight” of double consciousness so famously
elaborated by W.E.B. Du Bois in The Souls of Black Folk. For Du Bois,
an African American person is “born with a veil and gifted with a second
sight”—a double consciousness that gives him or her the “sense of always
looking at [his/her] self through the eyes of others” (qtd. in Gilroy 134).
According to Paul Gilroy, Du Bois is ambivalent about the implications of
that second sight, suggesting variously that it either hinders or empowers
black Americans. Gilroy glibly remarks that, “it matters little . . . whether
this ‘second sight’ is a true privilege rather than some sort of disability”
(134). Here he too quickly casts the internalization of racist ideologies as
a visual impairment, espousing a variant of epistemological ocularcentrism
that he perhaps does not intend (i.e., one must “see” one’s Self completely
in order to know it). Indeed, it matters a great deal whether we interpret
second sight as a privilege or a disability, and the choice sets up a false
and pejorative dichotomy. The notion of seeing Blackly reminds us that
rather than being a convenient or tangential metaphor for conceptualizing
blackness, disability is instead fundamental to it.
188 Melissa E. Schindler

If we are to move away from the notion that people of African

descent are merely “victims of a physical darkness,” we must likewise move
away from the idea that people with visual impairment are “victims” in
the same sense. Following Brent R. Henze, “Outsiders wishing to sup-
port the liberatory work of the oppressed,”—and here we might recall that
the category “outsiders” may include oppressed individuals depending how
the term “oppressed” is defined—“must form responsible and imaginative
alliances . . . grounded in appropriate reconceptions of their experiences
in relation to others” (qtd. in Sandahl 600). In other words, rather than
celebrate texts that make “imaginary identifications” that allege a “sameness”
between people “without regard for the real differences in [their] experi-
ences and lives,” we might take Alves’s work and The Black Book of Colors
as models for how to make “imaginative identifications of ourselves with
others.” These texts encourage us to “interrogate our own experience, seeking
points where common ground or empathy might be actively constructed
between us while remaining conscious of the real differences” (600). To
color something Blackly, to assume blackness, to write and read about the
world as if everyone had access to metaphor, regardless of their degree of
sightedness: these are practical capacities that encompass the language of
vision-as-knowledge without simply depending on it.

Notes

1. Refer to Editora Nova edition of Anjo Negro (2012). Unless otherwise

noted, all translations from Portuguese are mine.
2. I limit my discussion of race in this chapter to African descendants in the
Americas. As such, the conclusions derived in this chapter may or may not apply to
other groups of people in the Americas or elsewhere who do not identify as white.
3. The Black Book of Colors, written originally in Spanish by Venezuelan
authors Menena Cottin and Rosana Faría, is a children’s book that has been trans-
lated into various languages, including English. Here I use the Portuguese edition
published in Brazil. All translations are my own and may differ from the published
English translation of the book.
4. Over the course of the nineteenth century, Brazil sought to consolidate
national identity by producing a “new race” (a raça nova) that would result in a
mixed population. In the twentieth century, the sociologist Gilberto Freyre theorized
the history of race relations in Brazil as the foundation for a “racial democracy” (a
democraçia racial). Despite the horrors of enslavement, Freyre contended that as a
result of the conjugal relations and physical proximity endemic to slave labor, Brazil
would become a country free of racism. Throughout the twentieth century, leaders,
citizens, and foreigners alike claimed that Brazil was a “racial paradise.”
 “A solidão da escuridão” 189

5. Discussions of racism and white privilege in Brazil, though present

throughout the twentieth century, have increased dramatically over the past decade.
As Sales Augosto dos Santos has argued, the notion of Brazil as a “racial democracy”
had largely fallen out of favor by the end of the twentieth century. When Afro-
Brazilian activist groups began demanding social change in the form of affirmative
action policies, the “racial democracy” theory experienced a revival and was attached
to particularly vitriolic attacks on the ideas behind affirmative action. Although
Brazilians may now be more likely to admit to the existence of racial prejudice and
privilege, many resist the idea that races can be neatly divided in the country and
suggest that race-based policies are therefore ineffective.
6. To be clear: just because identity traits are “assumed” in Brazil does not
mean that people don’t try to “out” one another.
7. Okorafor-Mbachu indicates that she takes this definition from a talk
given by Steve Barnes at the Clarion East Science Fiction and Fantasy Writers’
Workshop in 2001.
8. Kennith Jarnigan and Carrie Sandahl have examined common tropes
of blind characters in literature and film. Jarnigan identifies one trope, “blindness
as compensatory or miraculous power,” that is perhaps closest to the notion of a
Magical Blind Person.
9. Though Alves never explicitly states that Flora is white, her privilege
makes itself apparent at various points in the story. The title suggests that Flora
is not black, or at least that race is not her most prominent feature—a privilege
of invisibility consistent with whiteness. Neither the third-person narrator nor the
characters intimate that Flora shares Cécilia’s experiences of race-based prejudice. If
Flora is not white, her blindness effectively renders her so.
10. Evaristo is arguably the most well-known contemporary Afro-Brazilian
author. Scholars have yet to examine fully the intersection of disability and Afro-
Brazilian identity in her celebrated first novel, Ponciá Vicêncio (2003).

Works Cited

Alves, Miriam. “A Cega e a Negra—Uma Fábula.” Mulher Mat(r)iz. Belo Horizonte,

Brazil: Nandyala, 2011, 32–36.
Bell, Christopher. “Introducing White Disability Studies: A Modest Proposal.” In
Disability Studies Reader, 2nd ed. Edited by Lennard Davis. London: Rout-
ledge, 2006, 275–282.
Bolt, David. “From blindness to visual impairment: terminological typology and
the Social Model of Disability.” Disability & Society 20.5 (2006): 539–552.
Boster, Dea Hadley. “Unfit for Bondage: Disability and African American slavery
in the United States, 1800–1860.” PhD Thesis, University of Michigan,
2010. Proquest.
Carmo, Claudio Marcio de. Personal communication. December 3, 2014.
190 Melissa E. Schindler

Conrad, Robert E. Children of God’s Fire: A Documentary History of Black Slavery

in Brazil. University Park: Pennsylvania State UP, 1994.
Cottin, Menena, and Faría, Rosana. O Livro Negro das Cores. Translated by Rafaella
Lemos. Rio de Janeiro: Pallas Editora, 2011.
De Figueiredo, Fernanda Rodrigues. “A mulher negra nos Cadernos Negros: autoria
e representções.” MA thesis Universidade Federal de Minas Gerais, 2006.
Web. November 1, 2012.
De Nascimento, Abdias. “Teatro experimental do negro: trajetória e reflexões.” Estu-
dos Avançados 18.50 (January/April 2004): n.p. Web. November 1, 2012.
Duarte, Eduardo d. A., and Fonseca, Maria N. S. Literatura e Afrodescendência no
Brasil: antologia crítica; Volume 4: História, teoria, polêmica. Belo Horizonte,
Brazil: Editora UFMG, 2011.
Erevelles, Nirmala. Disability and Difference in Global Contexts: Enabling a Transfor-
mative Body Politic. New York: Palgrave Macmillan, 2011.
Godoy, Vera. “Elizete, um olhar sobre a literature infantil” (presentation, IV Coló-
quio Mulheres em Letras, Belo Horizonte, May 31, 2012).
Jarnigan, Kenneth. “Blindness: Is Literature Against Us?” National Federation of
the Blind Annual Convention. Chicago, July 3, 1974.
Kriegel, Leonard. “Uncle Tom and Tiny Tim: Some Reflections on the Cripple as
Negro.” American Scholar 38.3 (1969): 412–430.
Lemon, Alex. “And Now I See.” In Beauty is a Verb: The New Poetry of Disability.
Edited by Jennifer Bartlett, Sheila Black, and Michael Northen. El Paso, TX:
Cinco Puntos Press, 2011, 167–168.
Martins, Leda Maria. Afrografias da Memória. Belo Horizonte: Mazza Edições, 1997.
McRuer, Robert. Crip Theory: Cultural Signs of Queerness and Disability. New York:
New York UP, 2006.
Mitchell, David T., and Sharon L Snyder. Narrative Prosthesis: Disability and the
Dependencies of Discourse. Ann Arbor: U of Michigan P, 2001.
Nascimento, Gizêlda Melo. “Grandes Mães, Reais Senhoras.” In Guereirras de Natu-
reza: Mulher negra, religiosidade e ambiente. Edited by E. L. Nascimento. São
Paulo: Selo Negro, 2008.
Newman, Adam. “Introducing Black Disability Studies: A Modest Beginning.” Dis-
ability Studies Quarterly 32.2 (2012). n.p. Web. April 14, 2013.
Okorafor-Mbachu, Nnedi. “Stephen King’s Super-Duper Magical Negroes.” n.p.
October 25, 2004. Web. November 1, 2012.
Rodrigues, Nelson. Anjo Negro. Rio de Janeiro: Editora Nova Fronteira.: 2012. New
edition of 1946 text.
Sandahl, Carrie. “Black Man, Blind Man: Disability Identity Politics and Perfor-
mance.” Theatre Journal 56.4 (2004): 579–602.
Tanya Titchkosky. Reading and Writing Disability Differently: The Textured Life of
Embodiment. Toronto: U of Toronto P, 2007.
 Chapter 10

Mythicizing Disability
The Life and Opinions of (what is left of) Estamira

Nicola Gavioli

Foreword

I write about a dead person, Estamira Gomes de Sousa (1941–2011), who

would have hardly had access to this essay or been able to engage in conversation
with me. Perhaps these notes on ethics and testimony might have sounded lofty
to her ears. Estamira’s life and opinions—the core of an eponymous Brazilian
documentary by Marcos Prado—are now the subject of academic discourse.
Questioning the choices by which a filmmaker gives shape to his material does
not protect me from criticism: the concern I have about using the portrayal of a
real person for academic purposes, abstracting from real-life experience, pervades
this study. Although Estamira’s voiceover permeates the two-hour documentary,
her “voice” remains remote. I hope in this project to honor some of Estamira’s
lived experience, even as it is dissected in Prado’s filmic biography.
Recently, a friend who works in the film industry brought to my attention
how common it is in Q&A sessions to find hard-core activists in the audience
focusing more on the integrity of the director rather than the filmmaking itself.
These questions are the favorite domain of the ignoramuses, my friend cynically
argued. “They have no clue about the art of the documentary.” I could not
disagree more with his essentialist perspective (not to mention his trivialization
of ethical concerns). What about the real lives of the film subjects, their need
for privacy and the imperative to seek consent, a question that becomes especially
salient in the case of people with mental disabilities?

191
192 Nicola Gavioli

Introduction

“The doctor asked me if I still hear the voices. I hear the stars, the things,
the presentiment of things.” The documentary Estamira (Brazil, 2004) by
Marcos Prado is a repository of poetic intuitions (and enigmas) emphati-
cally delivered in flashes by an old woman who spent many years collecting
garbage in the infamous Jardim Gramacho, a dump near Rio de Janeiro,
recently closed.1 Diagnosed as mentally ill, Estamira is regarded by her
community as a living question mark. Workers and relatives know all too
well that one wrong word can detonate an inflammatory reaction. Estamira’s
speeches, belligerent monologues addressed to God and nature with frequent
and sudden explosions of rage and profanity, touch universal themes—the
meaning of life, the fall from grace of humankind, the existence of hid-
den truths behind appearances in the natural environment—but they also
engage in secular matters, such as how psychiatry sedates patients through
the consumption of pharmaceuticals. The index of her biography displays
unhealed guilt over her mother’s internment in a squalid mental institution,
a gallery of turbulent encounters with men, episodes of abuse, betrayals by
her husband, and the experience of a painful mental condition.
After its theatrical distribution, Estamira was commercialized in a pack-
age of two DVDs, containing interviews with the director, the crew, a second
complementary film, Estamira para Todos e para Ninguém, and unusual extras,
like a collection of Estamira’s best roaring laughs (“Gargalhadas Estamirais”).
The mythopoetic operation by Marcos Prado and producer José Padilha gave
rise to an award-winning play, Estamira-Beira do Mundo, directed by Beatriz
Sayad, interpreted by actress Dani Barros. These manufactured representa-
tions of Estamira, a person both culturally and physically dislocated from the
edit rooms of the entertainment industry, strive to mold the life of a human
being into a mythical form. This chapter reflects on the ethical issues inherent
in filmmaking disability through the contradictions, problematic aesthetic
choices and incoherencies among materials. The core issue explores what is
left of Estamira, a witness of her own mental and material conditions. Is
the act of exposing oneself on camera sufficient to meaningfully bear testi-
mony? Is her consent merely implied? Finally, does her filmic representation
reinforce, subvert, or vacillate between stereotypes of disability?

Ethical Criticism and Documentary:

Is the Implied Author of Estamira Going Solo?

Literary critic Wayne C. Booth has observed the fundamental misconception

about ethical criticism in his essay “Why Ethical Criticism Can Never Be
 Mythicizing Disability 193

Simple:” in pectore, ethical critics are would-be censors of true art. Notori-
ously, Oscar Wilde could not tolerate this category of judgmental readers.
Nevertheless, this is a simple-minded notion of what it means to engage in
an ethical reading of a text. As Booth explains, “Of all the mistakes made
by the enemies of ethical criticism, the most absurd is failing to recognize
that a great proportion of what we call literary works are not only implicitly
ethical . . . but explicitly designed to elicit ethical responses” (30). Not all
works of literature ask readers to prioritize ethical inquiry with the same
intensity. Nevertheless, ignoring the political message in George Orwell’s
1984 or the solicitation to listen and react to Toni Morrison’s Beloved’s “ever-
present penetrating thought” would be “offensive to the author–at least to
the implied author” (31). Resisting the invitation to focus on ethical matters
is akin to amputating these texts at their core. It is unlikely that neutrality
inhabits a text, even one considered “above morality or immune to ethical
criticism” (33). How can the author’s gaze be neutral? Or: How and why
should we avoid recognizing a peculiarity of tone, an idea about the world,
expressed at least in the phantasmatic implied author? Even though Booth
refers to literature, we can extend his reflections to the art of film and,
more particularly, to the domain of documentaries in which understanding
the director’s intentions is indeed relevant to shaping the critical debate
and positioning the audience. The focus on the narrator and author(s)’
intentions and responsibility is intensified in the art of the documentary,
in which the protagonists not only evoke, obliquely and metonymically,
real people but are recognizable individuals (although documentary film-
making also embraces fictional elements as a tool for narrative). Subaltern
people, minorities, struggling individuals are often chosen as privileged sub-
jects in contemporary documentaries (Oscar-winner short Inocente, 2012;
To Be Heard, 2010; and Dzi Croquettes, 2009 are three recent and notable
examples). They may tell incisive, inspiring, and surprising stories. Their
points of view are unusual and sometimes underrepresented in society and
other media. Disability is one of these categories.2 How might one address
the representation of disabled people in documentary through an ethical
reading approach? And who practices this form of criticism in Brazil? In
recent years, the preoccupation with ethical issues in literature, cinema,
and other arts has gradually grown in Brazil. The society finds itself at a
political juncture in which the demand for shedding light on the years of
military dictatorship has allowed for the appearance of forms of criticism
concerned with human rights and the representation of silenced and abused
individuals. Paradigmatic in this sense is the collective work Escritas da
Violência (Projeto Temático FAPESP 2006–2010), coordinated by Márcio
Seligmann-Silva, Francisco Foot Hardman, and Jaime Ginzburg, which orig-
inated two edited volumes in 2012. The scholarly work of Jaime Ginzburg,
194 Nicola Gavioli

in particular, has given emphasis to the enduring authoritarian tendencies

subtly or proudly displayed in Brazilian culture, from the poetry by José
de Anchieta to popular movies by contemporary filmmakers. The recent
debate over Monteiro Lobato, a beloved children’s storyteller for generations,
and his “Negrinha” and Caçadas do Pedrinho, stories that are embedded
in racial prejudice, gained new weight after the publication of Monteiro
Lobato’s correspondence displaying sympathies for racist organizations and
approval for eugenic theories.3 From now on, approaching “Negrinha” with-
out considering the agenda of its historical creator looks like a hypocritical
omission and an ideological gesture. In “Negrinha” we can trace a coherent
continuity between the author’s ideas and the text. The focus on hidden
meanings, ideology, and values in the text by an “implied author” appears
to us as irrevocably and rightly conditioned by what we know through
historical documentation. More interesting is to consider works of literature
and cinema in which this extra-textual information (in this case, Marcos
Prado’s interview) seems to collide with aspects of the work itself. This is
particularly relevant in social-issue documentaries.
In this chapter, after revealing incoherencies between Marcos Prado’s
verbal statements and the implied author’s fluid purposes through the film,
I focus on Estamira’s self-expression through personal and enigmatic codes
of communication, both verbal and nonverbal, which I read as testimonial
acts by a socially subaltern, physically abused, and mentally ill woman. In
particular, through a disability studies reading, I question whether capturing
on camera and technically highlighting the subject’s moments of secret com-
munication replicates and reinforces negative stereotypes about disability or
contributes to a new approach entirely. With Estamira, Marcos Prado offers
strong material for reflecting on the intersecting dilemmas of authorship,
ethics, and disability representation.
Marcos Prado began documenting the biggest dump in Brazil in the
photographic volume Jardim Gramacho (2004). During the preparation for
this volume, completed over an entire decade, Prado met Estamira. On
the official website of the movie, Prado recalls this encounter in a written
statement (in English) about the origin of his documentary: “I approached
her asking if I could take her portrait. She consented and told me she
had lots of ‘things’ to say to me: ‘my mission is to reveal and reclaim the
truth,’ ‘you are common, I am not.’ . . .” Prado describes his serendipitous
encounter with Estamira as giving insight to his initial conception: “The
first motivation I had on doing this film was Estamira’s life and existence.
Living like a prophet of the dump, screaming out the values lost in our
society, fighting against religion, sanity, hypocrisy, creating neologism and
 Mythicizing Disability 195

poetic philosophical metaphors to express herself ” (my emphasis). In this

short description, the emphasis on the subject’s linguistic creativity and the
choice of the word “prophet” are significant. Representing the mentally ill
as individuals speaking in strange and unconventional ways is a stereotype
and a recurring artistic trope. Sander L. Gilman writes about the persistent
stigmatization of different “Others” through history on the basis of the
general perception of a different way of speaking. The mentally ill have
been represented for centuries as individuals who express bizarre and at
times prophetic utterances in odd languages (242). Whether consciously or
not, Marcos Prado followed in his documentary a stereotypical association
between disability and prophecy, although he claimed that what he saw in
Estamira was primarily an inspired creative mind, and secondarily a woman
with a mental disorder.
Prado’s written statement reveals his vision for this project: a character-
driven documentary wrapped up in a mystical atmosphere. Nevertheless, the
direction of the film changed course, as Prado suggests: “In the beginning
of the shootings I discovered Estamira was starting a public psychiatric
treatment with medicines for the first time in her life. That was one of the
reasons that made me believe I had to spend a long time following her. I
wanted to see the results of the medicine in someone living in such conditions
as Estamira” (my emphasis). The character-driven portraiture is gradually
replaced by another vision. Estamira becomes the vehicle for addressing
broader issues: mental health, medicine, poverty, and marginality.
The long interview with Marcos Prado demonstrates the director’s
high level of awareness about possible critiques of Estamira. He systemati-
cally anticipates questions and concerns related to the ethics of his film-
making. Prado emphatically addresses an unseen interviewer saying “Don’t
even ask me” about ethics, as if this aspect were an obvious imperative for
him since the very start. This staged Q&A is a strategically crafted captatio
benevolentiae, an archive of good intentions, aiming to reinforce the idea of
Estamira’s resolute agency through the project and to explain the coherence
between aesthetic choices and content of the film. These are Prado’s words
on these two delicate aspects:

A. Aesthetic “excess”

The narrative of the film is entirely poetic, philosophical. For this

reason, any excess of beauty, of beautification, of aesthetics, of
perfection would be allowed. Of course if it was a film with no
parallel narrative in contact with the excess of aesthetics, I think
196 Nicola Gavioli

it would be bothersome. But the film largely follows Estamira’s

magic, poetic speeches, with her cosmology of life . . .

As Prado has also remarked, the opening song, “Janela de apartamento,”

by Décio Rocha, evocative and unsettling, is considered “a metaphor for
the entire film . . . all this juncture of beautiful images, intense songs and
Estamira’s anthologic and magic narrative, all that makes up this film that
leads you, if you give yourself to it, to unknown places.” Marcos Prado
defends his artistic choices as a faithful representation of Estamira’s cosmol-
ogy. Vortexes of clouds, flames of fires, dramatic skies and landscapes, black
and white grainy shots, a pseudo-archaic preverbal litany all contribute to
re-create Estamira’s perception of the world. For Prado, the truth of the film
resides precisely in the baroque display of its larger-than-life artificiality that
endeavors to evoke Estamira’s inner world. At moments, the operation verges
on romanticizing mental illness as an overwhelming poetic furor engaged
in a struggle against the universe. Prado’s poetics seem close to the ideas
of German director Werner Herzog, who wrote on the art of documentary
filmmaking that “There are deeper strata of truth in cinema, and there
is such a thing as poetic, ecstatic truth. It is mysterious and elusive, and
can be reached only through fabrication and imagination and stylization.”4
However, if we compare Prado’s vision and words with the final film, we
hardly find coherence. At moments, the search for beauty—which Prado
locates in the orchestration of larger-than-life visual effects and poetic meta-
phors—goes astray, displaying a taste for abjection and the representation
of repulsive details, such as the focus on trash as nutrition and sustenance
for Estamira and her family.5 As a result, the film suffers an identity crisis,
as it follows diverging aesthetic paths. The implied author’s purposes (and
values) inscribed in this project look fluid, unstable, and contradictory if
confronted with the statements by Marcos Prado. As noted earlier, a second
crucial aspect is addressed in the interview. The director reiterates that the
genesis of his artistic project is legitimated by the approval (and “predisposi-
tion”) of the film subject.

B. Estamira’s agency

In 2000, I realized that there were photos that could tell the
story. What was lacking was getting a bit closer to the people.
And during that visit in 2000, with this goal in mind, I found
a lady sitting in her campsite. I asked her permission to take a
picture of her. She gladly consented and said: “Sure you can,
 Mythicizing Disability 197

but then you sit here by my side because I wanna talk to you.”
This lady was D. Estamira.

In the straightforward recollection of their first encounter, the director intro-

duces elements of a fairy-tale narrative (“She told me she lived in a castle
all decorated with things taken from the trash”). He characterizes Estamira
as the possessor of a mysterious wisdom (“She began to sound more meta-
physical”). For Prado, Estamira is constantly extraordinary. Sometime later,
Marcos Prado visits Estamira at her barraquinho:

I kept D. Estamira in my mind for more or less than a month

thinking what a fantastic woman she was. I wanted to make a
documentary about her. I started looking for her. . . . Finally I
arrived at her home. . . . D. Estamira turned and said to me:
“You came late but you don’t fail.” I told her “I came here to
ask for your permission to make a movie about your life.” She
said: “I have been waiting for this for a long time.” . . . There
was a predisposition in D. Estamira in wanting to tell her story.

Estamira’s serendipitous willingness to participate in the project, a long-

awaited occasion by her as Prado describes it, is presented as a sign of
destiny. Between the lines it is suggested that Estamira welcomed both
Prado and his vision for the film. Nevertheless, Prado’s relaxed and seem-
ingly unproblematic recollection of the spontaneous approval by Estami-
ra raises the fundamental question of informed consent in documentary
filmmaking.

Informed Consent, Documentary, Disability:

Estamira on the Phone

The debate on the ethics of documentary filmmaking is complex. The 2009

study “Honest Truth: Documentary Filmmakers on Ethical Challenges in
Their Work” by eminent documentary scholars Patrícia Aufderhaide, Peter
Jaszi, and Mridu Chandra presents the results of forty-five interviews with
documentary professionals. According to the authors of the study, many
filmmakers share a common uncertainty: “They daily felt the lack of clar-
ity and standards in ethical practice. They also lacked support for ethical
deliberation under typical work pressures” (2). This fascinating study offers
examples of critical moments in which directors had to choose whether
198 Nicola Gavioli

to shoot a great scene or protect their subjects. Some filmmakers confess

experiencing regret over such decisions (3).
In the relationship between filmmaker and subjects there are crucial
variables involving power and mutual trust. To what degree is a filmmaker
responsible for respecting the people who provide the stories she or he
needs? Informed consent is the backbone of this relationship: subjects must
be informed of the purposes of a project and consciously and autonomously
decide to be on camera. According to scholar Kate Nash, “While there is
a growing body of research focused on the documentary maker, relatively
little is known about the participant’s experience of documentary produc-
tion or the interpersonal relationships on which documentary depends” (2).
The issue of informed consent is essential but not simple. In Introduction
to Documentary, film professor Bill Nichols shows the inherent complexities
of this principle: “Of exactly what consequences or risks should filmmakers
inform their subjects? To what extent can the filmmaker honestly reveal his
or her intentions or foretell the actual effects of a film when some intentions
are unconscious and many effects are unpredictable?” (54). These already
challenging questions get exponentially more complicated when the partici-
pants are diagnosed as mentally ill individuals. How properly informed is this
category of subjects? How do they process and understand this information?
Is there real intention in the consent they give? How does the filmmaker
perceive the participants’ ability to give consent?
Insisting on Estamira’s agency in the already mentioned interview,
director Marcos Prado asks: “Is it unethical to film a person who has no
self-control? D. Estamira was completely free to come, go and do whatever
she wanted, by herself. . . . Although diagnosed mad, D. Estamira is not
mad. She has a very lucid mind.” In two moments in the film, Estamira
affirms that “I can distinguish mental disturbance” and “mental disturbance
is not a disability, right?” Estamira’s disability does not cut her off completely
from conventional reality. She demonstrates awareness and insight about her
condition. She shows the urgency of delivering an important message. The
director is not stealing her story: Estamira is present, engaged in conversa-
tion, looking straight at the camera. In this instance, then, informed consent
is a more nuanced matter than, say, in Werner Herzog’s Land of Silence and
Darkness (1971), a gripping documentary on different forms of physical and
mental disability. A long scene in Herzog’s movie captures a moment in
the life of Vladimir Kokol, a twenty-two-year-old deaf and blind boy who
received no special training to adapt to his disabilities. “It was never tried
to awaken him,” the director informs us. Vladimir cannot walk and cannot
communicate with the external world. He lies on the floor, stands up, pro-
duces unarticulated sounds with his lips, picks up a ball and beats himself
 Mythicizing Disability 199

with it. All of Vladimir’s gestures respond to solicitations from his inacces-
sible inner world. Herzog gives us an extreme example in which informed
consent by a subject is unattainable. Originating from a fundamental lack,
Herzog’s decision to keep the scene blurs boundaries: it is both an act of
exclusion and a call for exception in the name of a higher educational cause.
The issue of informed consent is problematic in Estamira. Some scenes show
disruption of the pact between Marcos Prado and Estamira:

A. In a moment of anger, Estamira shows her lower back in

front of the camera. Although the gesture has no shock value
per se, and the nudity revealed is motivated by the protago-
nist’s dramatic memories of a medical surgery, questions are
raised about whether Estamira wanted this moment immor-
talized on camera.
B. Several members of Estamira’s family are interviewed on
camera. They broaden the audience’s understanding of the
documentary subject, presenting anecdotes about her life
before and beyond her disability. Nevertheless, as Marcos
Prado disclosed (“Entrevista com o diretor”), Estamira was
not initially aware of her family’s participation in the proj-
ect and, as a consequence, she became deeply disappointed
with Prado. She was not estranged from her family, but
she resented the lack of information. How did Prado con-
vince the subject’s family to participate? Was there monetary
contribution involved? Are the words of relatives necessarily
reliable and accurate in telling Estamira’s stories?
C. Several scenes in the film reveal Estamira losing control. This
happens whenever people in her family mention the name
God or Jesus. She screams aloud and insults anybody who
dares to contradict her about religious matters. These private
moments seem less problematic, however, than the scene
in which Estamira appears totally disconnected from reality,
captured in a trance, with her eyes searching for an indefi-
nite object. The camera meticulously captures this moment
through extreme close-ups of her face and mouth. In the
following scene, she is “visited” by an invisible presence call-
ing for her attention. She pieces together a phone from the
surrounding trash and starts communicating out loud in an
unintelligible private code. The phone call lasts for nearly two
minutes in which Estamira’s mood transitions from aggressive
200 Nicola Gavioli

to surprised and finally content. The communication with

the director is abruptly broken. During this time, it appears
that Estamira is not the same individual who made a pact
with Marcos Prado. The director focuses on her delirium,
offering a shocking and memorable scene for the audience at
the expense of Estamira’s consent. Prado claimed that Esta-
mira was the first person to watch the final version of the
film. She was invited for a private screening and left alone
in the room. Interestingly, she claimed she did not remember
being in some of the scenes shown to her (“Entrevista com
o diretor”).

Editing material for a documentary project is often focused on the construc-

tion of a narrative. The editor is a storyteller who selects and re-creates stories
and characters according to various factors: personal aesthetics, sensitivity,
ideology, and even marketing strategies. In this laboratory of manipulation,
the subjects of a documentary may be particularly affected by choices that
escape their control. As G. Thomas Couser writes, in reference to the related
context of life writing, “Co-authoring another’s life can be a creative or a
destructive act, a service or a disservice, an homage or an appropriation”
(36). Couser emphasizes how the vulnerability of the subjects can be the
result of different levels of imbalance: “in race, culture, gender, class, age,
or (in the case of narratives of illness or disability) somatic, intellectual, or
emotional . . .” (37). Filmmakers know that there are risks involved. After
the release of a documentary film, subjects can express their complaint
through the media: frustration, disappointment, and resentment. They can
denounce on TV, or write letters to newspapers claiming they were betrayed.
In the majority of cases, the documentary continues its commercial life with-
out being touched by these polemics: it is in fact common practice for the
director, before or after shooting interviews, to ask subjects to sign a release
form that authorizes free artistic work based on their stories. What we know
about Estamira’s reactions to the film is a collection of quotes and anecdotes
that Prado reported. Disapproval of the final project by Estamira is entirely
hypothetical. Even so, we might wonder whether the media would have
treated her as capable of expressing criticism based on factual experience
or rather as a fundamentally unreliable individual living in a fantasy world.
If the goal of Estamira was to present a portrait of an extraordinary indi-
vidual, it achieved this through radically alienating the subject from her own
image on screen. This scission is an example of what German philosopher
Günther Anders described as a “phantom” relation. Anders’s study focused
on the effects of television and radio on mass consumers and is a precur-
 Mythicizing Disability 201

sor to contemporary debates on the effects of visual arts and the Internet
on their audiences. Anders’s commentary on the media’s influence on the
individual is prophetic: “When the world is perceivable, but no more than
that, i.e. not subject to our action, we are transformed into eavesdroppers
and Peeping Toms” (20). Estamira and her disability emerge as an exception,
a freak show, a curiosity, a possibility of life from which the majority of
viewers was spared, a dark fairy tale with an opaque agenda that does not
call for real intervention. Did Estamira herself, alone in her private screening
room, perceive the film as an interesting and unusual product with special
visual effects and some fascinating lines? For Anders,

—When the event is no longer attached to a specific location

and can be reproduced virtually any number of times, it acquires
the characteristics of an assembly-line product; and when we pay
for having it delivered to our homes, it is a commodity.

—When the actual event is socially important only in its repro-

duced form, i.e., as a spectacle, the difference between being and
appearance, between reality and image of reality, is abolished.
(20)

The metamorphosis of Estamira into a character is apparent in the extra

“Gargalhadas Estamirais,” a collection of the very “best moments” of Esta-
mira’s laughs. Close-ups of her face, de-contextualized repetitions, and funny
sympathy-seeking sketches are all utterly disembodied. The documentary
subject disintegrates into abstraction. She is even molded into an adjective:
Estamiral.
Anders’s notes on media are further relevant to Estamira’s story. The
adaptation of Estamira into a stage play by Beatriz Sayad is a predictable
follow-up to Marcos Prado’s documentary. Not the repetition by media,
but the representations on stage turn Estamira’s story into a commodity.
When the stage curtain drops, is it the words or the human experience of
Estamira (the poverty, the disease) that resonate in the audience’s memory?
After Medea, King Lear, and Beckett’s Winnie: the memorable drama of
Estamira in the events calendar.

Testimony: The Eloquence in the Hand

Estamira also endeavors to be a film of testimony, akin to Spanish American

testimonio narratives. Focusing on an exceptional character is an occasion to
202 Nicola Gavioli

address the larger issues of poverty, marginalization, and mental disorder in

contemporary Brazil. This programmatic choice by Prado is what I would
call the first level of testimony present in the film: a filtered or manufactured
testimony. Prado’s film finds its own justification in addressing urgent mat-
ters through beautiful shot-making. Estamira’s speeches denounce various
forms of abuse. The most salient is violence against women perpetrated by
men, and especially fathers and husbands. During several periods in her
life, Estamira experienced episodes of sexual exploitation and betrayal. Vivid
memories of these abuses shape her visceral attacks against male domination
and, in particular, against God, the quintessential representative of patriarchy.
Estamira complains about the devastating effects that capitalist con-
sumerism has on the environment and on human beings. Urban popula-
tions waste goods and resources that eventually find their way to Jardim
Gramacho, where “invisible” workers risk their health picking through
mounds of trash. The social dimension of the documentary is amplified in
a second video created by Marcos Prado and included in the extra of the
film: Estamira Para Todos e Para Ninguém. Estamira is presented here as a
more down-to-earth individual, able to articulate coherently and express
political messages. For example, she recalls having sent a letter to former
president José Sarney inquiring about why the majority of Brazilian citizens
were living less freely than the military minority. This video juxtaposes the
voice of Estamira with that of other workers and subalterns of society.
The result is a collection of micro-portraits in which the themes of social
injustice, race-based discrimination, and unemployment emerge. Estamira
Para Todos e Para Ninguém focuses on the material aspects of working in
Jardim Gramacho, on the heavy chores and the miserable remuneration.
There is no future here, says one of the youngsters. The video emphasizes
practical challenges such as eating trash for survival and avoiding contact
with health-threatening hospital waste.
Estamira and Estamira Para Todos e Para Ninguém dramatically address
the issue of mental illness in Brazilian society. One psychiatric patient shares
her overwhelming anxiety in relation to hospitals and doctors. She fears her
family will ultimately relocate her to a mental institution. “Illness can reach
anybody,” she complains. She believes a malignant red flower in the house is
responsible for her disgrace. This subject plays as counterpoint to Estamira,
who expresses her rage against the drugs that her doctor prescribes. After a
visit with her psychiatrist at the José Miller Psychosocial Clinic, Estamira
shows the pills that are prescribed to her. These pills, Estamira claims, do
not help. On the contrary, they make her feel worse. “I am not a robot of
blood, I am not a robot.” This is one of the strongest scenes in the film:
Estamira’s speech resembles a political attack on pharmaceutical cures and
 Mythicizing Disability 203

the lack of true empathy among health care providers. Estamira’s distrust
grows, exploding in the scene:

My doctor prescribed the remedy for anger (laughs). I was very

disappointed, very sad. Very deeply angry at her for saying such
a thing. And you know what she said? . . . That it is magic,
telepathy, media and the fuck. . . . She offended me way too
much. . . . I know doctors, doctors, doctors . . . good ones.
She is a copycat. I am her friend, I like her. I like everybody,
but she is a copycat. They are, you know, doing what? Doping
whoever, with only one drug. They cannot do it. The remedy
wants to know more than Estamira? Pay attention. About the
remedy I say: Do you feel well? Then stop it. Give it a break.
If it hurts, go there to complain, as I did three times. At the
fourth time they received me . . . they create addictions, dop-
ing . . . the amount of medication, all has a limit . . . dope to
blind people.

In Estamira’s account, Doctor Alice mixes science with irrational refer-

ences to magic. Alice is called a copycat: her speech and her cures are unorig-
inal and predictable. The visit and subsequent prescription are perceived as
a violent imposition. Estamira refuses to be explained by and reduced to a
category taken from the psychiatry manual. This scene works to differentiate
this documentary from many “impairment-oriented films” in which “the
individual with an impairment becomes circumscribed by his or her body”
(Darke 103). Prado leaves a space for his subject to express doubts about
the nature of her mental condition and about the efficacy of standard medi-
cal prescriptions. Estamira’s complaint might be seen as a reaction against
the passive acceptance of an essentialist definition of herself molded by
the medical and the social discourses. Doctor Alice is considered a copycat
by her patient because she seems to repeat a script. The patient’s critique
against standard cures (or “doping”) leads the viewers to pay attention to
the problematic line between being and being perceived mentally incapable.
If Estamira can articulate her precise critique, whereas medicine classifies
her as insane, the audience is asked to reflect on and contest the limits of
“shared cultural scripts of disability” (Snyder, Mitchell 186) that often equate
mental illness with utter passivity. Prado’s film suggests that there are varia-
tions within the generic category of madness, challenging the cultural binary
between sanity and insanity. As Shayda Kafai efficaciously illuminates there
is a fluidity in madness that is often obscured by the repetition of stereotypes
and by self-censorship: “The stigmas of madness, the falsity of the sane/
204 Nicola Gavioli

mad binary and the assumption that one cannot exist simultaneously in the
border spaces of sanity and madness are all perpetuated by silence . . .” (9).
Estamira exemplifies the concept of “mad border body” (Kafai 1): although
ill, she is a vital character, opinionated, fighting to be treated with respect,
content at times, and capable of work. In addition, her mix of metaphors,
virulent and abrupt verbal attacks, colorful expressions, syncopated sounds
and neologisms give shape to a rich language: a fascinating, strange and
irreproducible form of communication. As Tobin Siebers puts it, “disability
aesthetics embraces beauty that seems by traditional standards to be broken,
and yet it is not less beautiful . . . disability enlarges our vision of human
variation and difference” (3). The film does not suggest that death would
liberate Estamira from the burden of living, as if she were irremediably dam-
aged by illness, a message that other films on disabilities convey (Darke).
Although the film does not seem to advocate demedicalization of mentally
ill patients, Estamira’s blast against doctors is also accompanied by black
and white images showing queues of people waiting to be treated outside
the José Miller clinic. Emphasizing the slow movement of a multitude of
patients asking to be heard and saved by doctors, as if on a pilgrimage, the
director raises interesting questions: how much attention and time does
each patient receive? Are psycho-pharmaceuticals prescribed after accurate
diagnoses? What happens in the doctor-patient relationship when patients
refuse to follow the medical prescriptions?
The film touches on a variety of relevant issues; nevertheless, the lack
of focus weakens its testimonial power. Estamira is invested by her biog-
rapher in too many endeavors: she is a prophetess and an oral poet, the
denouncer of different human wrongdoings and the communicator of the
experience of her mental condition all together. Nevertheless, the film raises
even more questions about a genuine act of testimony when Estamira is
able to communicate the experience of illness. This channel of personal
expression escapes even the director’s control and is located in the mysterious
gestures of Estamira’s right hand and in the articulation of the sounds of
an imaginary language (in which a few Portuguese words are discernible).
Only she owns this space. “I have a computer in my finger,” she explains,
tracing invisible signs in the air. This form of nonverbal communication
remains unexplored by the director. He scans Estamira’s gestures in a few
moments but it is apparent that he does not know how to incorporate them
into his narrative(s). They are left as sporadic tics.
As philosopher Giorgio Agamben describes there are levels of testi-
mony that camp survivors located in disorganized, unintelligible forms of
expression. Agamben recalls the obscurity that Auschwitz survivor Primo
Levi found in the poetry of Paul Celan, compared by him to “an inarticulate
 Mythicizing Disability 205

babble or the gasps of a dying man” (37). Later on: “In Auschwitz, Levi had
already attempted to listen to and interpret an inarticulate babble, something
like a non-language or a dark and maimed language” spoken by Hurbinek,
a young child prisoner in the concentration camp. Agamben quotes from
Levi’s writings: “Hurbinek . . . was paralyzed from the waist down, with
atrophied legs, as thin as sticks; but his eyes, lost in his triangular and wasted
face, flashed terribly alive, full of demand, assertion, of the will to break
loose, to shatter the tomb of his dumbness” (37). The passage from Levi
talks about the double lacuna of testimony: while Hurbinek passed through
mental and physical annihilation without a recognizably human language
with which to communicate, Levi survived, and possessed a language (but
lacked the full experience of destruction in the camp). Bearing witness
must acknowledge the fundamental impossibility of bearing complete wit-
ness. Still, part of that experience can be communicated. Levi writes that
Hurbinek “bears witness through these words of mine” (38). For Levi, it is
by proxy that witnessing can occur, while Agamben further problematizes
this issue, arguing that “whoever assumes the charge of bearing witness” in
the name of the drowned, “knows that he or she must bear witness in the
name of the impossibility of bearing witness” (34).
Marcos Prado cannot represent Estamira’s experience by proxy: his
film displays a confused agenda, meanders in too many directions, aims to
produce wonder, often distracting from the testimony of Estamira’s story
of mistreatment and mental condition. In spite of that, whenever Estamira
speaks her invented language or whenever she draws signs in the air, she
seems to delineate a margin of freedom that eludes Prado’s agenda and
his supposed pact with her. The already mentioned phone call scene, pre-
sented by the filmmaker as shock-inducing, provides Estamira real space in
the film to communicate freely, although in enigmatic and unconventional
ways. Perhaps the imperfect translatability of Estamira’s mental world into
common language is the legacy that she leaves for the viewers of the film.
Paradoxically, we may ask what is left intact of the “authentic” Estamira if
not those impenetrable writing and speaking acts?
On the other hand, it would be disingenuous to consider this relative
freedom of the documentary subject as untouched by the editing process.
The director orchestrates all the elements of his film. What he cannot control
and subvert are the articulation and the meaning of the sounds produced
by his protagonist. The close-up of the face and mouth of Estamira while
delivering her speech on the phone is also a problematic choice: invasive
as it is, it gives preeminence to the character’s secret code, directing the
concentration of viewers exclusively on it. Prado determines both the inclu-
sion and the long duration of this scene. The audience cannot deduce how
206 Nicola Gavioli

often Estamira experiences similar episodes, but given the duration of the
scene, common recurrence is implied. A disability studies–informed focus
on cinema, as exemplified by the contributors to the volume The Problem
Body: Projecting Disability on Film, refines our attention to the ambivalence
of such a scene. The image of a woman speaking differently and in vehe-
ment tones with a nonexistent interlocutor might reinforce the association of
Estamira with unintelligible or frightening alterity. On the other hand, the
duration of the scene and the close-ups produce a counter-effect, gradually
accompanying and disclosing a variety of emotional reactions by Estamira.
The expressivity of her face and the changing tones of her voice appear to
make her more familiar: she is recognizably a member of our community.
Marcos Prado’s Estamira offers much food for thought on the practice of
documenting disability in contemporary Brazil. Prado’s film is also paradig-
matic of the possible contradictions between aesthetic aspirations of a direc-
tor and the urgency of communication by a subject with disability. Crucial
issues of power and trust between director and participants become more
complex when the primary subject has been diagnosed as mentally disabled.
Informed consent is, in these cases, an opaque territory that is difficult to
delimit. This reading also reveals the complexity of determining whether
Estamira contributes to the perpetuation of stereotypes, fears, and distor-
tions about mental illness or to the presentation of disability as a human
experience in which creativity and social commitment are kept alive.

Notes

I would like to thank Thomas C. Shepard, Dante Noto, and Meg Moritz for their
suggestions. All translations from the film and the extras are mine.
1. Jardim Gramacho was officially closed in June 2012.
2. Some notable examples of documentaries on disability are: Twitch and
Shout (1993) by Laurel Chiten; Freedom Machines (2004) by Richard Cox, Janet
Cole, and Jamie Stobie; Murderball (2005) by Henry Alex Rubin and Dana Adam
Shapiro; The Key of G (2007) by Robert Arnold; Praying with Lior (2008) by Ilana
Trachtman. Recent Brazilian documentaries on disability include: Clarita (2007) and
Dois Mundos (2009) by Thereza Jessouroun; Além da luz (2010) by Yves Goulart;
Arte na Deficiência (2010) by Carolina Pessôa. A good source for Brazilian short
documentaries and feature films telling stories about disabilities is the website Porta
Curtas (portacurtas.org.br).
3. Brazilian writer Ana Maria Gonçalves wrote a powerful piece on racism
in the works of Monteiro Lobato and on the disingenuous attempts to defend
Monteiro Lobato from criticism in “Carta Aberta ao Ziraldo” (www.idelberavelar.
com/archives/2011/02/carta_aberta_ao_ziraldo_por_ana_maria_goncalves.php).
 Mythicizing Disability 207

4. Serbian director Goran Radovanovič, auteur provocateur, represents the

extremes of this search for a poetic truth in documentary filmmaking. In the 2009
interview “Art is a lie that makes us realize the truth” available online (Doc online
website), Jeanete de Novais Rocha asked Mr. Radovanovič: “What kind of ethical
problems could the use of reality cause as a background to construct your films?”
He assertively replied: “Since I am an artist who wants to tell my artistic truth,
there are no ethical problems. In my documentary films I am not trying to tell any
other truth but artistic one. That is why I am not afraid to reconstruct and recre-
ate the reality which is far away from the rough reality! In this sense there are no
ethical problems that could appear during the process of documentary filmmaking.
Ethical problems could only appear if my artistic manipulation of the reality is bad
aesthetic” (138). The open question is why the documentary (and not the feature
film) should be the ideal form for artistic manipulation of reality.
5. The Brazilian short documentary Vidas no Lixo by Alexandre Stockler
(2008), available on the Porta Curtas website (portacurtas.org.br) presents the same
problematic choice. The first scene of the film focuses on a young worker selecting
and eating pieces of trash. It is unclear if the scene was filmed with the consent
of the subject.

Works Cited

Agamben, Giorgio. Remnants of Auschwitz: The Witness and the Archive. Translated
by Daniel Heller-Roazen. New York: Zone Books, 1999.
Anders, Günther. “The World as Phantom and as Matrix.” Translated by Norbert
Guterman. Dissent 3 (1956): 14–24.
Aufderheide, Patricia, Peter Jaszi, and Mridu Chandra. “Honest Truths: Documen-
tary Filmmakers on Ethical Challenges in Their Work.” Center for Social
Media (2009). Web. June 22, 2013.
Booth, Wayne C. “Why Ethical Criticism Can Never Be Simple.” In Ethics, Litera-
ture, Theory: An Introductory Reader. Edited by Stephen K. George. Lanham:
Rowman & Littlefield, 2005, 23–34.
———. “Who is Responsible in Ethical Criticism?” In Ethics, Literature, Theory:
An Introductory Reader. Edited by Stephen K. George. Lanham: Rowman
& Littlefield, 2005, 79–97.
Couser, Thomas G. Vulnerable Subjects: Ethics and Life Writing. Ithaca: Cornell
UP, 2004.
Darke, Paul. “No Life Anyway: Pathologizing Disability on Film.” In The Prob-
lem Body: Projecting Disability on Film. Edited by Sally Chivers and Nicole
Markotić. Columbus: Ohio State UP, 2010.
Gilman, Sander L. Disease and Representation. Images of Illness from Madness to AIDS.
Ithaca: Cornell UP, 1988.
Gonçalves, Ana Maria. “Carta Aberta ao Ziraldo.” O biscoito fino e a massa. Web.
June 22, 2013.
208 Nicola Gavioli

Herzog, Werner. “Minnesota Declaration: Truth and Fact in Documentary Cinema

Lessons of Darkness.” Translated by Moira Weigel. Werner Herzog Film: Home.
Web. June 22, 2013.
Kafai, Shayda. “The Mad Border Body: A Political In-betweeness.” Disability Studies
Quarterly 33.1 (2013): n.p. Web. June 22, 2013.
Nash, Kate. “Telling Stories: The Narrative Study of Documentary Ethics.” New
Review of Film and Television Studies 10 (2012): 1–14. Taylor & Francis.
Web. June 22, 2013.
Nichols, Bill. Introduction to Documentary. Bloomington: Indiana UP, 2010.
Prado, Marcos. “Director-Statement.” Estamira official film website. Web. June 21,
2013.
Rocha, Jeanete de Novais. “ ‘Art is a lie that makes us realize the truth:’ An Interview
with Goran Radovanovič.” DOC-online: Revista Digital de Cinema Documen-
tário. (“Dossier Documentário e Ética”). Web. June 22, 2013.
Seligmann-Silva, Márcio, Jaime Ginzburg, and Francisco Foot Hardman, eds. Escri-
tas da Violência. Vol. I: O Testemunho. Rio de Janeiro: 7 Letras, 2012.
———, Márcio, Jaime Ginzburg, and Francisco Foot Hardman, eds. Escritas da
Violência. Vol. II: Representações da Violência na História e na Cultura Con-
temporâneas da América Latina. Rio de Janeiro: 7 Letras, 2012.
Siebers, Tobin. Disability Aesthetics. Ann Arbor: U of Michigan P, 2010.
Snyder, Sharon L., and David T. Mitchell. “Body Genres: An Anatomy of Disability
in Film.” In The Problem Body: Projecting Disability on Film. Edited by Sally
Chivers and Nicole Markotić. Columbus: Ohio State UP, 2010.

Filmography

Dzi Croquettes. Directed by Tatiana Issa and Raphael Alvarez. Canal Brasil, 2009.
“Entrevista com o diretor.” Extras. Estamira Para Todos e Para Ninguém. DVD.
Zazen Produções, 2007.
Estamira. Directed by Marcos Prado. Zazen Produções, 2004.
Estamira Para Todos e Para Ninguém. Directed by Marcos Prado. Zazen Produções,
2007.
Inocente. Directed by Sean Fine and Andrea Nix Fine. Salty Features, Shine Global,
Fine Films, 2012.
Land of Silence and Darkness. Directed by Werner Herzog. Werner Herzog Film-
produktion, 1971.
To Be Heard. Directed by Amy Sultan, Roland Legiardi-Laura, Edwin Martinez,
and Deborah Shaffer. Dialogue Pictures, 2010.
 Chapter 11

“En ninguna parte”

Narrative Performances of Mental Illness
in El portero by Reinaldo Arenas
and Corazón de skitalietz by Antonio José Ponte

Laura Kanost

In the 1980s and 1990s, at the same time that mental health care reform
was gathering momentum in Latin America1 and disability studies was devel-
oping as a discipline in the United States and Britain, Cubans identified as
mentally ill were exiled to the United States in the Mariel Boatlift along
with criminals and political dissidents, and the post-Soviet political and eco-
nomic crisis known as the “Special Period” exacerbated experiences of mental
illness on the island.2 These Cuban crises help to illustrate how the very
real—and mutable—relationship between the political and the personal can
destabilize clichéd metaphors of mental illness: as exile, as homelessness, as
dictatorship. In late twentieth-century Latin American literature and society,
the physical and conceptual spaces accessible to persons with mental illness
were shifting: asylums and large psychiatric hospitals were being replaced
with community-based mental health care, and fixed categories of difference
were opening to more dynamic models.3
To consider this state of flux, I borrow the concept of liminality, used
by Jeffrey Willett and Mary Jo Deegan to describe the social position of
disability as a space with the potential to reconceptualize the physical and
sociocultural barriers that serve to “other” people with disabilities. Willett
and Deegan argue that, similar to the liminal stage of a rite of passage origi-
nally postulated by anthropologist Victor Turner, people with disabilities
often experience a lack of a clear social or gender role, social invisibility or

209
210 Laura Kanost

literal seclusion, symbolic association with death and contamination, and

socioeconomic outsiderhood. Despite this multitude of hardships, Willet
and Deegan make the case that the liminal position has a transformative
power because, from the unique vantage point of liminality, a person “is
forced to think about the established social structure as they prepare to re-
enter that structure” (n.p.).
Within this context, this chapter discusses El portero (1989)4 by Rein-
aldo Arenas and Corazón de skitalietz (1998) by Antonio José Ponte, Cuban
narratives that both represent and perform the sociocultural liminality of
mentally ill characters. By foregrounding diverse ways of perceiving, under-
standing, and feeling, these texts compel readers to occupy an uncomfortable
but potentially transformative parallel space of indeterminacy, creating an
opportunity to rethink what it means to be mentally ill, and by extension,
what it means to be disabled. The protagonists’ atypical perceptions and
thought processes—what would be considered “impairments” under the
social model of disability—are not easily separated from their sociopolitical
contexts, where the social model would point to the emergence of “dis-
ability.” Dichotomies such as impairment/disability, mind/body, “normal”/
disabled fall apart, recalling Lennard Davis’s concept of dismodernism, Ato
Quayson’s aesthetic nervousness, and what Fiona Kumari Campbell calls
“decentering abledness.”

On the Threshold

Wandering, placelessness, and liminality have long been tropes associated

with the spatial and rhetorical othering of mental illness, both—paradoxi-
cally—as a lack of subjectivity and as an unparalleled form of creativity
and subversiveness.5 The liminal states of exile and mental illness have been
conceptually linked for centuries, most extensively through the medieval
motif of the ship of fools, which Michel Foucault discusses in Madness
and Civilization. Confined to the ship, from which there is no escape, the
“madman is delivered to the river with its thousand arms, the sea with its
thousand roads, to that great uncertainty external to everything. He is a
prisoner in the midst of what is the freest, the openest of routes” (Foucault
11). Always adrift, not belonging to any place, the ship of fools keeps “mad”
others away from “normal” society. In El portero and Corazón de skitalietz,
the mentally ill protagonists experience this liminal social and political posi-
tion as tremendously isolating, but simultaneously, as a space of agency and
possibility. The use of narrative focalization in both texts requires readers
 “En ninguna parte” 211

to drift along with the protagonists.6 The Mariel Boatlift of 1980, a key
contextual element for El portero, mirrors the ship of fools icon: among
this exodus of 124,776 Cuban dissidents and criminals (García 46) were
a number of patients from psychiatric hospitals, making literal the long-
standing metaphorical association between mental illness and exile. In fact,
according to María Cristina García, the port of Mariel became known as
the “Bay of Fools” (60). García discusses the intensely negative response in
the United States to the perception that the Cuban government had used
the boatlift as a way of purging the island of criminals and people with
developmental and psychiatric disabilities.7 Compounding the liminal status
of these disabled immigrants was what García calls a “state of limbo” (75)
that resulted because the United States denied the Mariel Cubans the official
refugee status long awarded to Cubans arriving on U.S. shores and housed
them in processing camps; “the government labeled the Cubans with the
rather ambiguous term ‘entrant,’ which allowed them to remain temporar-
ily in the United States until a more permanent status—if any—could be
defined” (García 69). Long after setting foot on U.S. soil, the “marielitos”
remained adrift in terms of political and social status, and the public widely
perceived them as morally, physically, and mentally defective.
It is against this sociopolitical backdrop that Reinaldo Arenas (1943–
1990), a Mariel exile himself, constructs the tale of El portero. The epony-
mous doorman, Juan, is a liminal figure in terms of his occupation—which
literally places him on a threshold—his Mariel exile identity, and his appar-
ent mental health problems. The plot of the first half of the novel revolves
around Juan’s failed attempts to show his New York apartment building’s
quirky tenants to a mysterious other door, one that he believes leads to
another plane of existence. In the second half, Juan suddenly is able to
converse with the tenants’ various pets, and together they plan to escape the
building and go in search of utopia. When the tenants have Juan commit-
ted to a psychiatric hospital, the animals rescue him and, apparently, they
succeed in carrying out their planned exodus.
Just as Juan is constantly relegated to various thresholds through-
out the novel, the reader of this text is caught between psychological and
supernatural explanations for Juan’s extraordinary perceptions of the world,
placing the novel within the fantastic genre as defined by Tzvetan Todorov.8
In his memoir, Antes que anochezca, Arenas describes Cuban identity as an
experience of liminality:

And for Cubans who, like us, have suffered persecution for twen-
ty years in that terrible world, there is really no solace anywhere.
212 Laura Kanost

Suffering has marked us forever, and only with people who have
gone through a similar experience can we perhaps find some
level of understanding. (308, emphasis added)9

Through its fantastic elements, El portero creates a space for communication

by compelling its readers to inhabit, albeit only indirectly and temporarily,
the thresholds that Juan occupies both as a Mariel exile and as a person
who is perceived as mentally ill. The trope of uncertainty pervading the
novel’s narration, plot, and genre extends to its readers, who may temporarily
inhabit a liminal space of fantastic vacillation.
The limitations and potential of Juan’s liminal status are suggested by
his relationship to the text’s narrators and his interactions with in-between
spaces. El portero is narrated with a peculiar mix of omnipresent surveil-
lance and persistent uncertainty, implying that the reader, who performs a
secondary sort of surveillance over the world of the novel, is likewise limited
in the ability to make Juan an object of knowledge. The narration is told
in anglicized Spanish through the collective narrative voice of the local pre-
Mariel Cuban exile community, already successfully assimilated into U.S.
society. This “we” presents its narration as testimony about Juan’s failure to
integrate. The testimony, situated in the year 1992 (postdating the novel
itself ), claims to be based on evidence gathered through a comprehensive
system of surveillance, as well as Juan’s own writings. Although the narrat-
ing “we” cannot have immediate access to Juan’s perceptions and thoughts,
the focalization sometimes seems to do just that: the narrating agent usu-
ally highlights its inability to know Juan’s inner life, but at other points
it seems that Juan has become the focalizer, ostensibly due to the work of
psychologists who the narrators say have been hired to reconstruct Juan’s
psychological states (106). Juan is initially introduced as “a young man who
was dying of grief ”—a condition that the narrating agent cannot explain
or even adequately describe—and immediately thereafter as a Cuban exile
living in the United States, thus establishing from the very beginning of
the novel an association between the state of psychiatric distress and that
of exile from Cuba (3).
The panoptical presence of the narrators recalls Arenas’s accounts in
his memoir, Antes que anochezca, of the Castro regime’s omnipresent sur-
veillance network. Juan is subjected first to the narrators’ watchful eye, and
later to confinement in the physical structure of a psychiatric hospital. Yet,
although the narrators—and in turn, the reader—see and hear all, they
are ultimately unable to make any firm conclusions about Juan. Likewise,
Juan soon escapes from the hospital, in spite of all the obstacles meant to
control him. This indirect association between government surveillance and
mental health care facilities has direct referents in the context of Cuban
 “En ninguna parte” 213

politics. While vast improvements in La Mazorra, then the country’s only

public psychiatric hospital, were a triumph of the Revolution, Marxist ide-
ology infuses the Cuban mental health care system’s approach to mental
illness and its treatment (Collinson and Turner). The Cuban government
has been accused of using its psychiatric facilities to confine and torture
political dissidents (Brown and Lago), and under the Castro government
it has become a commonplace for critics to liken the entire island to an
insane asylum that holds its occupants by force.10 Ever on the threshold,
the doorman cannot be confined by the Cuban government, the Cuban
exile community, or the New York psychiatric hospital. His social liminal-
ity brings him great loneliness, but it also allows him to slip between the
cracks of oppressive apparatuses.
Further underscoring Juan’s liminality is the fact that he constantly
occupies liminal physical spaces—the boat, doorways, the psychiatric hospi-
tal, and the unresolved final journey—and, not coincidentally, also experi-
ences liminal mental states and social positions. The narrators present him
as a person who, “unlike us, could not or would not adjust to this practical
world. On the contrary: he explored absurd and desperate paths.” Worse
yet, the narrators say, Juan attempted to take everyone he met along with
him (4). Having had difficulty holding down previous jobs due to spells
that the narrators call “illumination or madness” (5), as a doorman, Juan
feels called to show the tenants the way through another sort of door, a
door leading out of the constricted spaces of everyday life to another plane
of existence, to what he calls “timeless regions with no material limits” (7).
After establishing this situation, the first half of the novel focuses on
Juan’s attempts to gain the tenants’ trust so that he can steer them toward
this special door. As the tenants are introduced one by one, it becomes
apparent that this apartment building is home to an unusual number of
liminal people: many of the tenants are Cuban exiles, and all of them are
quirky if not disturbed: obsessive, addictive, delusional, suicidal. In fact, the
narrators refer to almost all the tenants as mad at one point or another,
and throughout the first part of the novel, Juan does not stand out as any
more unconventional than anyone else in the building. Like Juan, the ten-
ants each have latched onto an ideology or metanarrative through which to
navigate life, and many of them are obsessed with converting others. Thus,
Juan is unsuccessful in his proselytizing, but just as he sinks into despair,
the pets that live in the building begin to speak to him, and the second
half of the novel deals with their democratic discussions of how to escape
from the tenants and set out on a journey.
The tenants spy on Juan’s now increasingly bizarre behavior, and decide
to have him committed to a psychiatric hospital. Ironically, Juan’s interac-
tions with the other patients parallel his previous interactions with the
214 Laura Kanost

tenants. In the hospital, each patient is known by a number instead of a

name, and drugs often impede interaction, but, like the tenants, the patients
are a series of obsessive, quirky personalities who won’t listen to Juan. One
by one, the narrative characterizes each patient through a defining mania,
perhaps the most striking being “el profesor,” who believes that the hospital
is actually a ship that has run aground, conjuring the image of a stationary
ship of fools. This catalog of sorts is contained, in the Spanish text, within
one extraordinarily long paragraph (three and one-half pages), suggesting the
group living conditions in the psychiatric institution. Indeed, the hospital
is unequivocally portrayed as a Goffmanian total institution, where the
patients are expected to surrender all control over their bodies, minds, and
identities: they are physically restrained, given large doses of sedatives, and
renamed with numbers like prisoners.11
Although the novel portrays the psychiatric hospital as an oppressive
institution, it also seems to suggest that Juan’s very liminality allows him
to escape its clutches. His unique ability to communicate with the animals
from the apartment building becomes his way out. The pets rescue Juan,
and they all set off on a journey. Thus, the end of the novel finds Juan yet
again in a liminal position, in search of his destination, an idyllic mountain.
The group travels across the United States, arriving at the Pacific coast. As
they continue south along the coastline, searching for the mountain, the
travelers are joined by more and more animals. The narrators continue
their surveillance, using a telescope to observe from afar, until the group
reaches the equator (187). There, they shrewdly break off the narration,
announcing that Juan is their secret weapon, because “a people forced out
of their country and persecuted, a people in exile and who consequently
suffer humiliation and discrimination, live for their day of revenge” (189).
The narrators’ menacing conclusion thus leaves Juan stranded in a state of
potentiality at an imprecise geographical location.
Yet El portero extends two pages beyond the ending of the official
testimony. Immediately following the narrators’ conclusion is a section titled
“La puerta,” “The Door,” which apparently is narrated by Juan himself—the
only time in the novel that Juan speaks directly without his words being
italicized or placed within quotation marks. A paragraph narrated entirely
in the conditional tense describes how each of the animals would pass
through a door to a perfect habitat, a place where “nobody could spy on
them through telescopes, or have them followed by undercover agents” (156
in the Spanish, my translation). Following this paragraph is a single sen-
tence, now in the future tense: “That is, all except me, the doorman, who
on the outside will watch them disappear forever” (190). These verb tenses
underscore the sense of potentiality surrounding Juan’s fate, and since he
 “En ninguna parte” 215

remains forever waiting for his turn to go through the door and thus reach
some kind of conclusion, the novel is suspended, even at its conclusion, in
the liminal realm of the fantastic. The last page of the novel presents a lost
dog ad that seems to confirm that, at the very least, the dog Cleopatra has
disappeared without a trace.
Thus, even at its conclusion, El portero refuses to release the reader
from fantastic suspension; consistently indeterminate narration and focaliza-
tion rule out any coherent psychological, supernatural, or allegorical inter-
pretation of Juan’s experiences. Although the narrators somehow manage to
observe Juan’s every move, they also highlight their own inability (or refusal)
to interpret the cause of the phenomena. The narrators claim, for example,
to know that on the liminal night of New Year’s Eve, Juan concluded that
his life was meaningless and he needed to abandon the universe, but they
explicitly do not decide whether this was a moment of lucidity or insanity
(104–105). Similarly, when the dog Cleopatra first speaks to Juan, the nar-
rators interrupt to tell the reader directly not to expect a neat explanation
of any kind (105–106).
At the same time, the novel’s narration maintains fantastic vacillation
on a more subtle level, using focalization to limit the reader’s access to
evidence that would explain away Juan’s adventures. Although the narrators
seem to watch Juan’s every move, most of the novel seems to be focalized
through Juan himself, often without outside perspectives that might cor-
roborate or contradict his perceptions. Even when the narrators do present
an outside perspective or quote his unconventional speeches, it is not clear
whether Juan’s behavior can be considered pathological. The crux of the
fantastic vacillation in El portero is the question of whether Juan’s interac-
tions with the animals can be attributed to mental illness. Excluding the
narrators, the other characters in the book seem never to entertain any
other explanation. Clearly, the tenants decide that Juan requires urgent
mental health care, because they call an ambulance to take him to a psy-
chiatric hospital. Confronted with surveillance video of the conversations
between Juan and the animals—which has picked up the various voices—
the psychiatrists go to the extreme of diagnosing Juan with a brand new
disease, “magnetic ventriloquism” (164). This diagnosis is later changed to
schizophrenia because the original symptoms do not reappear once Juan is
in the hospital, separated from the animals (170). If the change in Juan’s
“symptoms” in the absence of the animals is not enough evidence for a
supernatural explanation, magic certainly seems to be at work when the
animals rescue Juan from the hospital. The narrators state that, through
their “discreet surveillance,” they know how Juan was able to escape (176).
High above the city streets, a throng of animals work together to remove
216 Laura Kanost

the bars from Juan’s hospital window, and they all escape through it, the
orangutan carrying Juan as though he were its baby (177).12
El portero defies rigid classifications and compels its reader to do the
same by exploring liminality on various levels. The doorman, keeper of the
threshold, also occupies a liminal sociopolitical space as an exile and as a
person with unconventional thought processes and behavior. The complex
nature of Juan’s liminality is encapsulated in his confinement to the psy-
chiatric hospital; his liminality causes him to be placed in a dehumanizing
total institution, but it is also the reason why Juan ultimately cannot be
restrained. The reader, too, experiences a sort of liminality through the
novel’s unwavering fantastic uncertainty. Unable to know for certain whether
Juan’s experiences can be explained by psychology or magic, or perhaps a
little of both, the reader may feel uncomfortably powerless, but may also
open up to more complex perspectives on the experiences of mental illness
and exile. Thus, the fantastic genre may be effective in representing a char-
acter’s mental illness as a fluctuating or transitory experience rather than a
fixed otherness, precisely because it does not allow for an easy categorization
of people as either “normal” or “mad.”

“En ninguna parte”

Antonio José Ponte (b. 1964) wrote his 1998 novella Corazón de skitalietz
years before being exiled, and his representation of an experience identified
as mental illness reflects both the physical and emotional stress of scarcity
that took place in post-Soviet Cuba and the island’s leading role in the
community-based restructuring of mental health care services in the late
twentieth century. In Ponte’s novella, an unemployed historian known as
Escorpión and an astrologer named Veranda bond while wandering their
native Havana, displaced within a once-familiar space due to recurring Spe-
cial Period blackouts and shortages as well as to their personal marginality.
The word skitalietz in the title refers to this state of being displaced within
one’s own homeland, which here represents not only the experience of living
in Special Period Cuba,13 but also the vicissitudes of the body: Veranda is
dying of cancer, and Escorpión is receiving treatment for a mental illness
at a day clinic.
The narrative, focalized almost entirely through Escorpión, is itself
disorienting. The protagonist’s often unconventional perceptions wander in
and out of dreams, medicated states, and critical contemplation of his situ-
ation. In his first meeting with Veranda, for example, they are having an
unremarkable conversation when suddenly “[e]yes opened in the cushion his
 “En ninguna parte” 217

elbow was resting on and the cushion turned into a cat. ‘Historian?,’ asked
the cat in a very clear voice,” at which point Escorpión tries to remember
how many pills he has taken, and when (83). Here and when he returns
to his apartment to take a pill, the focalization does not allow an external
viewpoint to clarify what is happening. Readers perceive the world of the
novella as Escorpión does, including a sense of uncertainty about whether
these perceptions can be trusted. Escorpión similarly reflects on the reli-
ability of his own thought processes in a conversation with his supervisor
at work: “Scorpio admitted to himself that he must have been in a very
bad state to repeat the words of a dream to his boss” (87). The boss’s reac-
tion—asking Escorpión to go on vacation—suggests that he, too, thinks
Escorpión’s behavior is unusual, a symptom of stress that could be alleviated
by rest (87). By filtering the narrative through Escorpión’s unstable percep-
tions, Ponte foregrounds the experience of wandering at home, of reflecting
on one’s own inner space as though foreign. Blackouts, scarcity, physical and
mental instability, and reading all entail a defamiliarizing impulse that brings
varying degrees of confusion, discomfort, innovation, and wisdom. “La fic-
ción ocurre en ninguna parte,” (fiction occurs in no place), Ponte writes in
the “epilogue” that precedes the narration (viii in the Spanish): placelessness,
liminality, and crisis form spaces of both distress and potentiality.
The physical spaces through which Escorpión wanders correspond,
then, to this very human experience of skitalietz, which the protagonist
himself comes to identify as his professional occupation (118). By nam-
ing his crisis, Escorpión strongly affirms his own subjectivity. His range of
possible actions is limited by the geography of the island, the availability
of resources, and the community’s perceptions of him as mentally ill, and
contrary to the conventional discourse that excludes the “mad” from the
position of subject, Escorpión is undeniably a thinking and speaking subject.
In The Practice of Everyday Life, Michel de Certeau describes a similar tactic
by which individuals negotiate apparently fixed systems: “without leaving
the place where [the consumer] has no choice but to live and which lays
down its law for him, he establishes within it a degree of plurality and
creativity. By an art of being in between, he draws unexpected results from
his situation” (30).
Such a creative appropriation of space occurs in Escorpión’s visits to
the day hospital, where he and the other clients engage mental health dis-
course to discuss their own diagnoses and treatment options, demonstrating
a well-developed knowledge of medications (89–90). The doctors are inten-
tionally excluded from these conversations because they lack the embodied
experience necessary to understand the issue: “It was understood that their
knowledge was only theoretical. Not one of those white coats had gone to
218 Laura Kanost

bed with medication” (18 in the Spanish, my translation). When Escorpión

asks one of the most experienced patients if anyone there ever got well, he
answers by contrasting his personal experience with a reference to Thomas
Mann: “Of course. What did you think? This is not the sanitarium of
The Magic Mountain” (90). In this prerevolution mansion converted into a
day hospital, the patients analyze the relationship between Cuban politics
and their personal crises: in group therapy, Escorpión complains of lack of
interest in his job, and a fellow patient, “one of the experts,” diagnoses him
with “professional anemia,” a condition that could surely be remedied by
reviving his identity as a worker (18 in the Spanish, my translation). One
patient links his own feeling of fragmentation to recurring Special Period
blackouts: “When there’s no electric light in the darkened house, I’ve had
the security of knowing that another someone like me, another me in
some illuminated part of this same city does things for me, lives my life”
(91); Escorpión, however, is uncertain whether this is “the true language of
wisdom” or just the paranoid discourse of “un loco” (92). When Escorpión
is informed that he has been laid off of his job, and is offered “the chance
to go live in an agricultural camp,” he surmises that this “wouldn’t be very
different from a day clinic. More sweat, fewer pills. More confidence in the
therapeutic virtues of work” (95).
Veranda and Escorpión rewrite these sociopolitical expectations by not
working, not following an expected path or remaining within an enclosed
space. The unpredictability of their movements becomes an art: they show
one another the most beautiful places they know, and they curate a “revista
de la calle” or “street journal” made up of found papers (36 in the Spanish,
my translation). As Veranda and Escorpión wander the city together, hav-
ing synchronized their medication schedules, they grow to resemble “locos”
more and more, both in their own self-assessment and in the reactions of
others (111–115). Escorpión draws a distinction between physically wan-
dering and mentally wandering, demonstrating what seems by now to be
an uncharacteristic lack of self-awareness: “Scorpio could live in the street,
stop shaving, but he knew that the moment his ideas began to wander he
would be on the road toward stupidity or madness” (115). Readers can only
follow along on this errant narrative path.
The limits on Escorpión’s wanderings become much tighter when the
rest of society decides that such unconventional trajectories are the symptom
of an ill that must be treated. The police and a social worker attempt to
bring Escorpión back into line by taking him to a homeless shelter; there
he gives his occupation as skitalietz, and when they ask if he is Russian,
he critically assesses their perception of him: “they want to make a nut out
of me” (118). This is a temporary shelter for various types of wanderers
 “En ninguna parte” 219

who will then be sent on their respective ways back to socially acceptable
spaces and behaviors: “Passage through the ambulant home ended in detox
centers, old people’s homes, psychiatric hospitals, return to families. As for
him, they’d dispatch him off to a madhouse, he was almost sure” (119).
While Veranda is in the hospital near the end of her life, she and Escor-
pión observe flies buzzing around the room, and reflect on the meaning
of freedom within a limited space: “Freedom can consist of a closed space
that’s a little larger” (122). Escorpión and Veranda are able to—and obliged
to—move in and out of the spaces of the hospitals as a function of their
socioeconomic marginality. Their ability to contemplate this condition is in
itself an appropriation of the subjectivity that is implicitly denied by the
authorities who treat Escorpión like a homeless loco who needs someone
else to impose limits.
Through the experience of displacement, Escorpión and Veranda con-
sciously and painfully occupy the bodies and identities that have become
their only home. When Escorpión finally leaves the city limits after Veranda’s
death, he does not find freedom, but rather, the discomfort of liminality. He
is well aware that his placelessness in society is related to his unconventional
thought processes—and this experience is self-aware and utterly corporeal:
“Opposite the shore most of the liquid residues of the city were emptied
out. Sweat, saliva, blood, urine, semen, shit, all mixed there with the salt
water. At that point Havana life ended” (127). This tragic final scene reaches
out to its readers, the spectators whose eye Escorpión feels watching him:
“He had the feeling that someone was watching him, that he was part of
an exterior shot on a film set. He didn’t know what to do before God or
the camera” (49 in the Spanish, my translation). The anguish of liminal
subjectivity carries with it a unique perspective from which to envision and
catalyze otherwise unfathomable social and cultural change (Willett and
Deegan). The conclusion of Ponte’s text, however, emphasizes the anguish.
With narratives focalized through characters considered to be mentally
ill, both El portero and Corazón de skitalietz ask their readers to temporar-
ily inhabit their placelessness, to imagine the defamiliarizing vantage point
of a ship adrift. This mechanism affords an opportunity to perceive ways
that mental illnesses exist as a complex relationship between bodies, minds,
discourses, cultures, and sociopolitical structures. Like a photograph of an
outwardly visible disability, these narrative performances of psychological,
emotional, and physical wandering ask readers to become aware of their own
relationship to and assumptions about mental illness. As Michael Berubé
points out, a disability perspective can open new views on narrative itself:
“rereading narrative from the perspective of disability studies, [. . .] leads us
to reread the role of temporality, causality, and self-reflexivity in narrative
220 Laura Kanost

and to reread the implications of characters’ self-awareness, particularly in

narratives whose textual self-awareness is predicated on the portrayal of
cognitive disability” (576).
By reading narratives like El portero and Corazón de skitalietz, we are
also led to rewrite existing models of disability. Mental illnesses have them-
selves occupied a liminal position within the field of disability studies, since
these conditions do not easily fit the influential social model of disability.
As Anna Mollow has convincingly argued in her study of depression,

[. . .] the strategy of maintaining a focus on social oppression

rather than personal suffering—or on “disability” as opposed to
“impairment”—risks reifying a dichotomy that does not easily
apply to disorders like depression [. . .] Moreover, analyses that
privilege disability over impairment deflect attention from the
political nature of impairment itself [. . .] the oppression of
disabled people is not merely “something imposed on top of ” a
pre-existing impairment; rather, the production of some impair-
ments is itself a political process. (76–78)

Inclusion of mental illness is vital in disability studies precisely because it

complicates models that are too simple to be inclusive of a wide range of
experiences of bodily difference taking place in a wide range of cultural
and political contexts.
Mental illness is especially critical to the development of Latin Ameri-
can disability studies because of the prevalence of these experiences in the
region and the way that they intertwine physical, social, and political fac-
tors. Robert Kohn and coauthors explain that the percentage of disabilities
identified as mental illnesses more than doubled in Latin America and the
Caribbean from 1990 to 2002: “it was estimated in 1990 that psychiatric
and neurological conditions accounted for 8.8% of the disability-adjusted
life-years (DALY) observed in Latin America and the Caribbean. In 2002,
that burden had increased to more than double, 22.2%” (my translation).
That study states that this shift might be due to a transition from commu-
nicable to chronic illnesses, greater attention given to emergent disorders,
and a population shift that has meant that greater numbers of people reach
the age that puts them at risk of developing adult mental disorders (230).
Going on to provide detailed numbers on how people are affected by dif-
ferent disorders in the region, the study finds that in many, perhaps most
cases, the majority of people affected by mental illness in Latin America
and the Caribbean are not served by a mental health care system.
 “En ninguna parte” 221

Cultural narratives of mental illness represent, and have an effect on,

ways of understanding these experiences, and are an important part of the
ongoing change in how people with mental illnesses are perceived and the
spaces they are able to occupy. Disability rights are far from equal in Latin
America, and contemporary Latin American popular and literary culture still
includes essentializing, clichéd representations of mental illness and other
disabilities. At the same time, however, accessibility is gaining momentum,
and texts like El portero and Corazón de skitalietz align with Fiona Kumari
Campbell’s call for cultural producers to “recover and apprehend the life-
worlds of humans living peripherally,” forming “disability imaginaries”:

Ontological differences, be that on the basis of problematical sig-

nifiers of race, sex, sexuality and dis/ability, need to be unhinged
from evaluative ranking and be re-cognised in their various
nuances and complexities without being represented in fixed
absolute terms. It is only then, in this release that we can find
possibilities in ambiguity and resistance in marginality. (14–15)

El portero and Corazón de skitalietz contribute to a Cuban disability imagi-

nary the anguished potential for creativity in a state of physical and cogni-
tive-emotional disorientation.

Notes

1. Cuba has been a leader in the process of reformulating national mental

health care systems that took place beginning in the 1990s to respond to interna-
tional recommendations for protecting human rights of mentally ill people. These
reforms, which in many countries coincided with a renewed emphasis on human
rights following the fall of dictatorial regimes, involve restructuring the mental health
care system with a new emphasis on community-based and preventive care rather
than large in-patient institutions (Caldas de Almeida and Horvitz-Lennon 219).
Throughout Latin America, however, policy reforms were not always reflected in real
infrastructure: “available information indicates generally low levels of implementation
of mental health plans. [. . .] In most countries the majority of mental health care
resources continue to be allocated to psychiatric hospitals, and community-based
services are insufficiently developed” (Caldas de Almeida and Horvitz-Lennon 220).
2. Margaret Price maps the usage, connotations, and overlap of various terms
(e.g., mad, survivor, mental illness, neurodiverse, psychosocial disability), ultimately
preferring “mental disability,” which groups together intellectual, cognitive, and psy-
chiatric differences. I agree with Price that “psychosocial disability” is a more accurate
222 Laura Kanost

and less medicalizing term than “mental illness,” but like her, I believe it is not in
wide enough use to be commonly understood. For lack of a succinct and broadly
recognizable alternative, I consider “mental illness” acceptable because many people
who experience differences in cognitive and emotional functioning do feel great
relief when they learn to cope with them through therapy, medication, and the like.
3. I have argued elsewhere that late twentieth-century Latin American lit-
erature often represents the asylum or psychiatric hospital as a problematic and
contested space, signaling a crisis in the concept of mental illness. If the function
of the asylum is to partition mentally ill people off from the rest of society, thereby
emphasizing their otherness, a literary or real-life crisis in the structure or role of
the asylum denotes a crisis in that society’s conception of mental illness; an asylum
that is permeable or crumbling is a structure that does not neatly contain mental
illness as a mark of inherent otherness. This change is part of a shift in the concept
of the self, an ongoing transition from a model of subjectivity founded on a myth
of bodily perfection, to a subjectivity relying on a concept of the body as constantly
changing, adapting, and interacting with its surroundings in complex ways.
4. El portero was written in New York from 1984 to 1986, was published
first in French in 1988, and was subsequently published in Spanish in Barcelona
in 1989 and in Miami in 1990. I refer to the 1990 Universal edition, and to the
1991 English translation by Dolores M. Koch.
5. For in-depth criticism of the madness-as-subversive cliché in the context
of gender studies, see Caminero-Santangelo and Kanost “Re-Placing.”
6. The concept of focalization, first proposed by Gérard Genette in 1972,
allows for a distinction between the narrating voice that tells the story and the
agent(s) whose perceptions act as a filter determining what information is available
to that voice.
7. Twenty-six thousand of the refugees were labeled as criminals, while “an
estimated fifteen hundred had mental health problems or were mentally retarded”—
a telling lack of distinction—and another “sixteen hundred had chronic medical
problems such as drug and alcohol abuse, tuberculosis, or cardiovascular disease”
(García 64). Approximately 2.5 percent of the Mariel immigrants had disabilities,
then, and about half of these were developmental or psychiatric disabilities.
8. My discussion of the fantastic is informed by Tzvetan Todorov’s model,
which hinges on the reader’s projected response to the imaginary world of the text,
for a fantastic text “must oblige the reader to consider the world of the characters
as a world of living persons and to hesitate between a natural and a supernatural
explanation of the events described” (33). Todorov stipulates that if the “laws of
reality” can explain the phenomena, then the work is classified in the uncanny
genre, whereas if “new laws of nature” must be adopted, the work belongs to the
marvelous (41). Because the fantastic exists on the border between the uncanny
and the marvelous, it has an affinity for themes of liminality.
9. Unless otherwise indicated, all English quotations of works originally
written in Spanish are from the published English translations.
10. An Internet search of the terms “Cuba” and “manicomio” or “madhouse”
turns up pages of examples of this rhetoric. An early instance comes from a 1963
 “En ninguna parte” 223

Time magazine article: “Last week a new boatload of 750 refugees landed in Miami
with reports of ever higher prices, tighter rations and lower wages. ‘Cuba is a
madhouse,’ said one bitter arrival” (“Becoming Destructive”). More recently, during
Castro’s severe illness in late 2006 and early 2007, reflections on the legacy and
future of the revolution have reiterated the madhouse imagery. For BBC Mundo,
Carlos Alberto Montaner suggests that “such a crazy, excentric guy remained in
power for so long” because Castro “created a hermetic institutional cage with no
way out,” and speculates that when Castro dies, reformers and opposition democrats
“will begin an organized and peaceful process of dismantling that anachronistic
madhouse” (“Fidel Castro: Palabras mayores,” my translation).
11. Arenas writes in his memoir that Juan’s character is based on his good
friend, fellow Mariel exile Lázaro Gómez Carriles. Antes que anochezca is thus a
key intertext for El portero: “Lázaro finally had to enter the psychiatric ward of a
city public hospital, where he stayed several months. I went to see him every week
during visiting hours. The ward atmosphere was Dantesque in the worst sense; all
possible types of insane people were screaming all the time, day and night. When
I entered that building I had an overpowering feeling of bewilderment and anxiety”
(307–308). Arenas continues, “He was unemployed for a while and then landed
a job as a doorman. We were no longer the same; we had witnessed the horror
of a New York mental hospital, the craziness, the misery, the mistreatment, the
discrimination.” (308). El portero is dedicated to Lázaro.
12. Other critics have not focused on issues of mental illness, the fantastic,
or disability in El portero, but many have discussed the book’s genre and relate it
to the political context of Arenas’s life (Soto, Álvarez Borland, Luis, Cacheiro).
Alina Camacho-Gingerich suggests a psychological explanation, pointing out that
Juan escapes from the psychiatric hospital immediately after falling into a deep,
medication-induced sleep, and therefore his subsequent waking and escape may be
read as only a dream (84). However, the narrators consistently limit their observa-
tions to information that could be gleaned from omnipresent surveillance.
13. Loss situates the novella and the Russian term skitalietz within the Spe-
cial Period context, culturally, politically, and economically. Lygia Navarro’s article
“Tropical Depression” chronicles widespread suicide and self-medication in contem-
porary Cuba: “After the fall of the Soviet Union, the island fell into its own Great
Depression, which Castro euphemistically dubbed “the Special Period in Times of
Peace,” and suicides spiked to more than double the already-high rate of 1959,
becoming the second-leading cause of death for Cubans ages fifteen to forty-nine.
[. . .] Official numbers do show that, in a country of 11 million people, annual
consumption of only three sedatives [. . .] is 127 million tablets.”

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483–490. Web. February 26, 2013.
224 Laura Kanost

Arenas, Reinaldo. El portero. Miami: Universal, 1990.

———. The Doorman. Translated by Dolores M. Koch. New York: Grove, 1991.
———. Antes que anochezca. Barcelona: Tusquets, 1992.
———. Before Night Falls. Translated by Dolores M. Koch. London: Serpent’s
Tail, 1993.
“Becoming Destructive.” Time May 31, 1963. Web. February 3, 2007.
Bérubé, Michael. “Disability and Narrative.” PMLA 120. 2 (March 2005): 568–576.
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Caminero-Santangelo, Marta. The Madwoman Can’t Speak, Or Why Insanity Is Not
Subversive. Ithaca: Cornell UP, 1998.
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Abledness. New York: Palgrave Macmillan, 2009.
Certeau, Michel de. The Practice of Everyday Life. Translated by Steven F. Rendall.
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Collinson, S.R., and T.H. Turner. “Not Just Salsa and Cigars: Mental Health Care
in Cuba.” The Psychiatrist 26 (2002): 185–188. Web. February 21, 2013.
Davis, Lennard. Bending over Backwards: Disability, Dismodernism and Other Difficult
Positions. New York: New York UP, 2002.
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Translated by Richard Howard. New York: Vintage, 1988.
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Florida, 1959–1994. Berkeley: U of California P, 1996.
Genette, Gérard E. Narrative Discourse: An Essay in Method. Translated by Jane E.
Lewin. Ithaca: Cornell UP, 1983.
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Inmates. New York: Anchor, 1961.
Kanost, Laura. “Political Asylums: Locating Mental Illness in Latin American Lit-
erature (1980–2000).” Diss. University of Kansas, 2007.
———. “Pasillos sin luz: Reading the Asylum in Nadie me verá llorar by Cristina
Rivera Garza.” Hispanic Review 76.3 (2008): 299–316.
———. “Re-Placing the Madwoman: Irene Vilar’s The Ladies’ Gallery.” Frontiers: A
Journal of Women Studies 31.3 (2010): 103–115.
Kohn, Robert, Itzhak Levav, José Miguel Caldas de Almeida, Benjamín Vicente,
Laura Andrade, Jorge J. Caraveo-Anduaga, Shekhar Saxena and Benedetto
Saraceno. “Los trastornos mentales en América Latina y el Caribe: asunto
prioritario para la salud pública.” Revista Panamericana de Salud Pública
18.4/5 (2005): 229–240. Web. February 26, 2013.
Loss, Jacqueline. “Skitalietz: Traducciones y vestigios de un imperio caduco.” In La
vigilia cubana: Sobre Antonio José Ponte. Edited by Teresa Basile. Rosario,
Argentina: Beatriz Viterbo, 2009, 95–109.
Mollow, Anna. “ ‘When Black Women Start Going on Prozac’: Race, Gender,
and Mental Illness in Meri Nana-Ama Danquah’s ‘Willow Weep for Me.’ ”
MELUS 31.3 (Fall 2006): 67–99. Web. February 26, 2013.
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Montaner, Carlos Alberto. “Fidel Castro: Palabras mayores.” BBC Mundo. Web.
February 3, 2007.
Navarro, Lygia. “Tropical Depression.” Virginia Quarterly Review Winter 2009:
26–47. Web. February 26, 2013.
Ponte, Antonio José. Corazón de skitalietz. Cienfuegos, Cuba: Reina del Mar, 1998.
———. “Heart of Skitalietz.” In In the Cold of the Malecón and Other Stories.
Translated by Cola Franzen and Dick Cluster. San Francisco: City Lights
Books, 2000.
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Edited by Lennard J. Davis. New York/London: Routledge, 2013, 292–299.
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by Richard Howard. Ithaca: Cornell UP, 1975.
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(2001): 137–152. Web. February 26, 2013.
 Part IV

Imagining Other Worlds

 Chapter 12

The Disability Twist in Stranger Novels

by Mario Bellatin and Carmen Boullosa

Emily Hind

The difference between noting a bodily sensation and organizing those sen-
sations as symptoms pertaining to a diagnosis aligns with the difference
between meditating and narrating. In meditation, sensations that arise in
the body and thoughts that pass through the mind receive judgment-free,
passive observation. By contrast, narrative seeks out and assigns meaning
to thoughts and sensations, and often works to group them into stories
with plot arcs. Narrative tends to prefer diagnoses and cures—the opposite
goal of the meditation that values impassivity and acceptance of things as
they are. Disability scholar Lennard Davis anticipates the affinity between
diagnosis and narrative habits when he describes the traditional novel as a
journey through the artificially constructed abnormal state that concludes
with an equally manipulative, reinstated ability or cure: “A normal situation
becomes abnormal, and by the end of the novel, normality or some vari-
ant on it is restored” (Bending Over Backwards 98). The traditional novel,
according to Davis, imagines certain qualities as “average” and claims this
portrait of the “normal” as verisimilitude; in Davis’s memorable wording for
this formula, “real means average” (Bending Over Backwards 93). For readers
interested in disability topics, the conflation of verisimilitude and the notion
of the average causes problems not only because human complexity exceeds
mathematical formula, but also because impairment tends to be excluded
from the novelistic norm. Some ten years later, Davis updates his influential
analysis and begins The End of Normal by arguing that even though lan-
guage fashions have changed and the word “normal” has fallen from favor,
a simple replacement has emerged for the offensive term: “diversity is the

229
230 Emily Hind

new normality” (1).1 This new normalcy continues to define itself against
impairment: “We want diversity in all things, but not insofar as medical-
ized bodies are concerned. It is in this realm that ‘normal’ still applies with
force” (7). Giorgio Agamben’s ideas regarding devalued bare life (zoe) and
entitled specific life (bios) prompt Davis’s “ultimate question” here regarding
“whether diversity can ever encompass disability, which is another way of
asking whether diversity can ever encompass abnormality or whether bios
under neoliberalism can ever encompass zoe” (6). The radical difference
between bare life and entitled life anticipates the finding in the present
chapter that even experimental novelists fail to manage such inclusivity.
Still, a literary scholar’s best hope for resistance to the confusion of non-
threatening diversity and the “real” might lie with experimental fiction that
gestures toward meditation and not just diagnosis.
Mario Bellatin (Mexican born, Peruvian raised, now residing in Mexi-
co City) and Carmen Boullosa (Mexican born and raised, currently residing
in New York) craft what can be called “stranger” novels because the charac-
ters’ wild impairments, a collection of unstable symptoms that pertain to an
uncertain diagnosis, make the physical conditions weirder than the known
courses of human illness; if readers insist on diagnosing these characters, they
will soon realize that these strange figures cannot be confused with the “real.”
Against the truism that human longevity inevitably triggers disability—or,
as Davis puts it for the benefit of the temporarily able-bodied audience,
“ ‘them’ is actually ‘us’ ”—the physiques designed by Boullosa and Bellatin
present impossible exoticism (Bending Over Backwards 4). Bellatin’s Biografía
ilustrada de Mishima (Mishima’s Illustrated Biography) (2009) presents the
experiences of a headless novelist and downplays any resulting impairment.
In the context of the present essay, that sense of humor presents a sort of
flaw, because the jokes allow Bellatin to remain faithful to the novelistic
norm of the “average,” now presented as amusing diversity, despite Bellatin’s
effort to break the narrative into meditative fragments. For her part, Boullosa
repeats a scene of fantastic bodily mutation in three novels, Cielos de la Tierra
(Heavens on Earth) (1997), La novela perfecta (The Perfect Novel) (2006),
and El complot de los Románticos (The Romantic Plot) (2009). These scenes
present a kind of free-form visual meditation that confounds the narrators,
who gape, horrified, at what they consider abject impairment and the very
embodiment of zoe. Despite the narrators’ fear of these stranger abilities in
each of the three novels, the reader can identify the meditative possibilities
accessible in the unashamed bodily redesign, against the narrative approach
that seeks diagnosis and cure.
If the experimental novels fall short of addressing Davis’s worry that
disability “undergirds our very idea of diversity,” they do successfully refuse
facile notions of “progress” (The End of Normal 8). Bellatin’s meandering Bio-
 The Disability Twist in Stranger Novels 231

grafía ilustrada de Mishima proves difficult to encapsulate in a plot summary

because the novel does not “go” anywhere; it does not progress according
to the standards of diagnosis. Bellatin installs this anti-progressive structure
by avoiding hierarchical distinctions between principal and secondary levels
of data. To name just one example of this confusing approach that declines
to make some details “count” more than others, Bellatin ends a paragraph
about a swimming ritual among monks with a seemingly extraneous detail:
During the monks’ trance, the yellow bus remained motionless in the yard
where it had been parked. (15). The bus, under the rules of neutral obser-
vance privileged in meditation, forms a detail as important, or unimport-
ant, as nearly any other data available in the text. To a lesser degree, the
multiple frames and juxtaposed voices of Boullosa’s Cielos de la Tierra work
toward an indigestible novel, though the text still contains a semblance of a
narrative arc that enables synopsis. In the same style, La novela perfecta—as
anticipated by the parenthetical subtitle (Un cuento largo) (A Long Story)—
features an intercalated short story and failed meta-plot for a novel, but still
permits Vertiz, the protagonist, to undergo a familiar development arc: from
suspicion, to acceptance, to rejection of the virtual technology behind the
“perfect novel.” Finally, with El complot de los Románticos Boullosa achieves
a profusion of competing narrators and events that becomes so elaborate
as to defy adequate plot summary. If Boullosa voices suspicion of progress,
she sometimes locates her objection in the feared triumph of the image over
the word. Unexpectedly perhaps, Bellatin’s and Boullosa’s divergent levels
of open-mindedness toward stranger impairment correlates to their degree
of openness to visual mediums. Boullosa’s three texts explicitly dread the
imagined victory of the image over intellectual coherence, and the narrators
in these novels articulate a defense of the necessity of literature against the
abject disability conjured by excessive reliance on the image. By contrast,
Bellatin’s Biografía ilustrada de Mishima concludes with fifty photographs,
making the number of pictures roughly equal to the number of pages of
written text, all couched in the context of ongoing jokes. The destabilizing,
meditative approach of Biografía ilustrada de Mishima questions the slide
between the real and the normal, and yet Bellatin’s endgame seems merely
to twist diversity into sameness in a banal gesture that fails to defy the
concept of the “norm.”

Mario Bellatin and Biografía ilustrada de Mishima

For the reader unfamiliar with protagonist Yukio Mishima’s historical biog-
raphy (1925–1970), I should explain that the Japanese writer committed
hara-kiri and then died of decapitation by sword-blade at the hand of a
232 Emily Hind

friend, Morita, who, both in factual history and in Bellatin’s retelling of

events, subsequently shot himself.2 In the novel, death for the writer does
not come in a “definitive” manner. In a chicken-or-the-egg paradox, Bellat-
in’s text attributes Mishima’s indefinite death to headlessness: “if [Mishima]
had a head like everyone else he would be dead in the same way that the
rest die: definitively” (47). The collection of reproduced photographs pres-
ent the historical, black-and-white image of Yukio Mishima’s severed head
and a photo of Bellatin himself, captioned as an analyst who worked on
Mishima’s case. These captions manage to cite a reality known to the reader
and challenge the veracity of that historical narrative with new informa-
tion. Bellatin’s intentionally clumsy stab at diagnosis jokes that Mishima
seeks help in counseling, which justifies the photo of Bellatin, along with
a female companion, as analysts. Hilariously for the reader attuned to the
sensibility here, Mishima falls victim to a depression twenty days after his
suicide, which he initially tries to treat with medication (52). The psycho-
logical counseling involves lying on a couch, in silence, while two analysts
watch him. As Bellatin explains, tongue in cheek, the analysts consider
this meditative exercise to wield “the eloquence of silence as a more than
infallible method” (53). Bellatin’s nod to meditative possibilities never quite
moves into an exploration of the terrain of disability, as it is imagined to
connote zoe in neoliberal diversity values, and therefore Biografía ilustrada
de Mishima laughs at the tactics of diagnosis, even as it retains them.
This is not to say that Bellatin ignores the topic of impairment. Bel-
latin was born with only one hand and thus might agree with Davis’s early
support for the social model of disability that locates the dilemma of the
disabled not with the individual, but in “the way that normalcy is constructed
to create the ‘problem’ of the disabled person” (Enforcing Normalcy 24).3
The “problem” of disability is only tenuously present in Biografía ilustrada
de Mishima. When the reader learns that Mishima has penned many of Bel-
latin’s famous titles, one implied joke teases that true disability is not located
with the one-handed Bellatin or the headless Mishima, but in the reader’s
prejudice. In a related detail, the novel briefly recounts an allegorical farm-
yard experiment carried out by Mishima’s uncle: a newly hatched chick with
a ribbon tied to one leg is pecked to death in a matter of minutes by the
intolerant chicks (41). Although the social model of disability would account
for this death as a consequence of discrimination, the allegory does not hold
for the rest of the novel. Because Bellatin’s meditations defy the stability
needed for allegorical interpretation, the sensitive reader cannot consistently
apply allegorical explanations to decipher Mishima’s experience as a headless
writer. No single reliable understanding of Mishima’s headless state appears
in the text. Now viewed as inspiring gift, now as dangerous difference, now
 The Disability Twist in Stranger Novels 233

as sideshow attraction, now as banal medical issue, the exact nature of the
character’s “problem” as a decapitated writer is never dependably defined. This
imaginary “problem” of decapitation allows Bellatin to flirt with meditation
in addition to constantly changing the diagnosis. The lack of a narrative arc
means that the meditation engages rapid-cycle fluctuations between diversity
and sameness, which ultimately obey a realism/normalcy aesthetic.
A diversity-to-sameness twist that excludes actual disability—or “that
kind of difference” according to Davis’s careful italics in The End of Nor-
mal—hints that disability today becomes difficult to name. The critic rumi-
nates, “Thus ‘we are all different; therefore we are all the same’ becomes ‘we
are all the same because we aren’t that kind of different’ ” (The End of Normal
13–14). Davis struggles to articulate disability here, perhaps as a conse-
quence of the silencing and invisibility that help to exclude the category he
wants to recognize. Even if he, too, fails to name the excluded disability,
Bellatin marvelously captures the twisting of diversity-into-sameness, and the
longing of boring sameness to twist into admirable diversity. For instance,
Biografía ilustrada de Mishima reviews an invented custom, in which the
headless writer exchanges shoes with a female friend from college: “Almost
without speaking to one another they practice a peculiar exchange of shoes”
(10). This mysterious ritual intimates a kind of physical equality between
the headless male and the female friend. In another example of diversity
presented as more of the same, and sameness as somehow also representing
a desirable diversity, when Mishima fails to convince a medical authority
that his condition is owed to Thalidomide, the savvy nurse dismissively
writes Decapitated on the paper that she gives him (38). This diagnosis
prevents Mishima from fraudulently collecting a settlement that would allow
him to buy a coveted type of prosthetic head, but the diagnosis does not
otherwise affect him. Part of Bellatin’s game here is to take what seems a
chronic condition—for example, headlessness as disability—and treat it as
a case of acute pain—for example, headlessness as diversity—that could be
“remedied” with a prosthetic. After failing to acquire the desired prosthetic,
Mishima perceives that the only true element in his life is that of absence:
“The only true thing in life was a void. An empty space, impenetrable and
infinite” (40). In case the reader manages to miss this key idea, it repeats:
“The only real thing was a void” (53). Diversity bound into sameness leads,
in the headless character’s most perceptive moments of meditative insight,
to the relief of nothingness. The implication that bios achieves enlighten-
ment by sensing the void does not pose a particularly optimistic viewpoint
from narrative standards, but it should delight the meditators. On this edge
of nothingness bios and zoe might encounter one another, but Biografía
ilustrada de Mishima does not develop Mishima’s awareness of the void; he
234 Emily Hind

is otherwise occupied with measuring his diverse yet assimilated individuality

in relation to the sameness of others around him.
Bellatin’s protagonist does not necessarily cross a category bound-
ary when his strange impairments are revealed, and this sameness can be
described through the image of the Möbius strip. In the mid-1990s, Eliza-
beth Grosz’s Volatile Bodies famously used a Möbius strip to reimagine the
Cartesian duality of mind and body.4 A Möbius model can be formed by
taking a strip of paper, giving it a half twist, and taping together the result-
ing loop. The resulting surface that possesses only one side helps to imagine
a boundaryless relationship between two states of health, here defined as
diversity and sameness. If you trace the Möbius strip, your finger will touch
what were two previously distinct sides of the paper without slipping off or
crossing a boundary. However, as Grosz cautions, the Möbius model does
not easily represent “modes of becoming, modes of transformation” (210).
Her warning suggests that in Bellatin’s game, sameness and diversity impli-
cate one another from the start, and the loop itself and not the appearance of
a journey converts diversity into acceptable equality or bios; bare life remains
beyond the loop. Understandably, given his reluctance to engage with the
abject difference of disability under neoliberal imaginings, Bellatin decorates
the diversity-to-sameness strip with ironically nostalgic references to the
false solution of the prosthetic. The road to sameness is studded with fake
heads, the novel seems to counsel, mocking the very symbol of embodied
wisdom. As the headless protagonist’s efforts to hit upon the properly diverse
prosthetic become more stylish, and thus ever more acceptably “diverse”
under neoliberal dependence on perpetually renewed consumer expression,
Mishima moves from wearing a rudimentary prosthetic head, which elicits
negative reactions, to using a rhinestone-encrusted mask (45–46). Bellatin
thus pushes impairment toward a fashion discussion, which rewards stylistic
diversity, and works to ignore disability.
As mentioned, Mishima fails to acquire a “professional head” through
the fraudulent scheme to sue for fetal Thalidomide damage, although he
does collaborate with an artist who makes him a series of “head-pieces”
(46). Disability critics David Mitchell and Sharon Snyder define the verb
“prostheticize” as the effort “to institute a notion of the body with a regime
of tolerable deviance” (Narrative Prosthesis 6–7). Bellatin’s Mishima hints at
familiarity with Mitchell and Snyder’s analysis, as the character negotiates
within the regime of the prosthetic and its struggle to dictate the normalcy
codes. As predicted by Mitchell and Snyder’s attribution of the quality of
the prosthetic to all novels, Biografía ilustrada de Mishima cannot exit the
loop that binds the diverse Mishima to the conformist Mishima. His urge
to view absence as the only trustworthy element in the novel leads to a
 The Disability Twist in Stranger Novels 235

statement of tight contradiction regarding prosthetics: “Head and the cre-

ation of words. Mishima had perceived, especially in recent times, that there
could not be one without the other. Or, more exactly, that one could not
exist without the absence of the other” (47). In these consecutive sentences,
Bellatin manages to accumulate ideas without constructing a reliably logi-
cal statement. If only, Biografía ilustrada de Mishima seems to wish, it were
possible to eliminate diagnostic narrative and close the gap between mind
and thought, between body and intellect, thereby creating a steady and spon-
taneous flow of experience-as-word-as-all, a point of sameness so total that
it stands indivisible from nothingness. Sadly for Mishima and fortunately
for writers, the division between mind and thought, word and experience,
cannot be permanently soldered. Head and words, self-consciousness nar-
rative and in-the-moment flow, continuously substitute the other, and their
alternating presence implicates the unavoidable prosthetics of presence in
representation. In the end Biografía ilustrada de Mishima is still narrated,
even if it never “goes anywhere” novelistically.
In one last observation that prepares my reader to turn next to Boul-
losa’s concerns about the image and technology as they threaten narrative,
that is, as the digital and the posthuman threaten to fill the gap between
“head and words,” I should note that from the start Bellatin frames his novel
as the gloss of a “film of reality.” That is, the novel insinuates itself as a record
of a series of “real” images, “a kind of film of reality” watched by an “us”
defined as “the attendees” (10). This film opens with the very location from
where the audience watches: “The first image to appear is the schoolyard
where we are gathered” (10). The spontaneity and immediacy of such a film,
reflective of the very reality that the audience experiences, perhaps means to
challenge the process of narrative. Just as the desired film is hinted to form
impenetrable sameness with the “reality” of the text, the supreme form of
writing imagined in the novel seems to long for absolute unification with the
written. Or, to put this ideal in terms of Diana Palaversich’s seminal article,
the essence of Bellatin’s narrative aims to harness the “writable” and not the
“readable” (37). Apparently for Bellatin, the question of how to write the
desired literary text ends up seeking to eliminate the established binaries of
the real and unreal, impairment and sameness, and the categories of writing
and reading. This point is not as convoluted as it seems. Biografía ilustrada de
Mishima, along with many of Bellatin’s other novels, struggles with longing to
connect the tool of writing with the “real” and thereby eliminate the aspect
of “tool-ness” or the “prosthetic” in writing, or the distraction of narrative
in meditation. One way for Bellatin to curtail the risk of pushing the novel
too far and publishing an unreadable set of anti-norms is to gesture toward
this possibility of pure writing, a creation that is never a supplement and
236 Emily Hind

therefore never a prosthetic. This pure writing as sameness, or the void, once
again neatly sidesteps the question of the disability as bare life that lies just
beyond the diversity loop, but then again, meditation does not claim to
provide answers but merely relief from narrative.
True to Bellatin’s perpetual, inexhaustible games with switching out
the diagnostic arc in favor of spontaneous meditation and its idealized cul-
mination in pure writing, the fictional academic who presents the “film of
reality,” identified this time as, “a kind of reflection of reality” comes to
deny the reality of his subject (54). More specifically, the expert affirms
Mishima’s nonexistence: “The impeccable Japanese professor finished his
intervention for that afternoon by affirming that Mishima has never really
existed” (54). Not every novelist dares Bellatin’s self-amused approach to
the diversity twist that only seems to stop short when it hits upon the pos-
sibility that what really exists is nothing. This reality of nothingness, and
the shifting, uncertain body of knowledge that leads the mind to perceive
it, entails precisely the sort of uncertainty that terrifies Boullosa’s narrators.

Carmen Boullosa and the Stranger Novels

Boullosa’s narrative voices differ from Bellatin’s example because they wield
moralistic judgments and tend to favor allegorical interpretations. These
narrators belong in analysis informed by disability studies because they inter-
rogate facile notions of progress, and for disability scholars, the connection
between progress and normalcy is perpetually ripe for questioning. Histo-
rian Douglas Baynton locates the origin of the disability-rejecting concept
of “normality” in its modern sense in the mid-nineteenth century, when it
arose “in the context of a pervasive belief in progress” (36). Boullosa’s texts
tend to attribute the imagined, frightening new bodily abilities to thought-
less applications of technology, or a naïve belief in the linear march of
progress. La novela perfecta illustrates this point. The “perfect novel” of the
title turns out to be a virtual narrative machine that creates a “real” illusion
through technology, in a vague parallel with Bellatin’s “film of reality.” As
the informed reader can predict, given Boullosa’s insistent defense of the
literary word, the attempt by narrator Vertiz to harness the technology of
the “perfect novel” and synchronize his imagination with the virtual image
proves disastrous. Vertiz’s creativity works along partially intuitive, medita-
tive lines, and he needs to be able to write down ideas in order to arrange
them later along a stricter narrative arc. Without the process of writing,
and perhaps even better said, without the written negotiation that balances
spontaneous fantasy and planned narration, Vertiz loses control over his art.
 The Disability Twist in Stranger Novels 237

His flight of fancy expressed through first-draft-is-final technology ends up

killing its scientific creator and forming an allegorical tableau of characters
that captures the “essence of contemporary man”: “Broken all, like dispos-
able beings, repeated, forgotten that they are each a unique world, they
ended up being slayed by that fabulous machinery, the vertigo of diamonds,
the vertigo of money, the splendor of money” (150). Sameness, expressed
here as having forgotten that everyone belongs to a unique world, nearly
wins out. Boullosa hints that the void triggered by this sameness is not Bel-
latin’s ideal, but an apocalypse. Though the chaos achieves a certain splendor
before it winks out, the figures horrify Vertiz: “[. . .] they remained also
filled with nonsense, insanity, repetition, violence, horror” (148). Boullosa’s
narrators need to believe in interpretative stability, and they express faith in
the reliable presence of the prosthetics of writing with a fervor that Bellatin
might label as naive. Because this vision of imagined mutilation, harboring
the end of writing and the beginning of abysmal sameness, repeats in Boul-
losa’s oeuvre, it seems worthwhile to cite at length from an example of the
malfunction of narrative technology in La novela perfecta:

No one realized who was the other, or the space each occupied,
or the place; no one was anything to one group or to the other;
no one knew who he was, nor whom she attacked; and as much
as they penetrated each other, they also hit each other, they also
kissed each other, without anything seeming to make any sense,
and immediately the ones and the others began to. . . . How
should I explain it? They dismembered themselves or the others,
some ate the others or themselves within themselves, without
any of those acts meaning anything either. (143)

The confusion produced with the use of vague pronouns and the absence
of possessives indicates that Boullosa intends to build horror in these scenes
by stripping out individualistic understandings of bodies and their borders.
For narrator Vertiz, the body merging lacks morality, or in his words, an
author: “I was not the author of that. I could not be the author of that.
It was, above all, an image WITHOUT an author” (144). Vertiz requires
diagnosis, a linear narrative arc, for meaning to emerge; when confronted
with the meditative, nonprogressive, interdependence, Vertiz knows that his
status as author, as diagnostician, critic, and moralistic observer, is threat-
ened. Under conditions of free-for-all meditation, narrators are not needed.
Given Boullosa’s staid interest in allegory, it perhaps comes as no sur-
prise that even as her narrators reconsider the intellectual, environmental,
and community damage caused by errant notions of progress, the narrators
238 Emily Hind

cling to an ideal of the “normal.” Across Boullosa’s stranger novels, the lonely
narrators give the impression that they view themselves in terms of Rose-
marie Garland-Thomson’s concept of “normate” as “the constructed identity
of those who, by way of the bodily configurations and cultural capital
they assume, can step into a position of authority and wield the power it
grants them” (8). The self-appointed, implicit demarcation of the normate
appears with Lear of Cielos de la Tierra, Vertiz of La novela perfecta, and the
principal narrator of El complot de los Románticos. These malcontents tend
to lack children, living romantic partners, and promising careers. They are,
thus, “diverse” from the mainstream and yet not abject; despite their discon-
tented and hypercritical personalities, constantly primed to a bad mood and
always alert to problems, they do not assess themselves as impaired, much
less disabled or representative of bare life—that kind of difference applies
to the posthuman or digital figures that horrify them. In addition to their
privileged condition as bios, staked on their literary tastes if not skills, the
narrators revel in their individuality as normates and emphatically recoil at
scenes of unfamiliar bodily sameness or exchangeability.
To give another instance of this “normate” narrative, Boullosa’s Cielos
de la Tierra includes a posthuman race, the “Atlántidos,” that decides to give
themselves a language-destroying lobotomy. According to holdout narrator
Lear, the language-free Atlántidos promptly exile themselves from stable
chains of cause and effect, linear time, and expected spatial relations. Lear
stays behind in the world of words, of narrative arcs, and of moralistic judg-
ment, which allows her to diagnose her compatriots as hopelessly disabled.
The postsurgical Atlántidos live in pure meditation, a mind without words,
a state that Lear cannot view as freeing. Lear describes the Atlántidos’ new
abilities as gruesome, such as the scene in which the female character Carson
removes, bloodlessly, one of her own arms; she opens herself up and sticks
the arm into her torso, ultimately extending the fingers through her ear,
nose, and mouth (352). Lear is repulsed by the grotesquely reformed body:

The wonder and the horror would not allow me to keep my

eyes closed. The opening left by the fringe of skin that now was
hanging from her [Carson] in a frontal tail, exposed the arm
that had entered through the hole, plus a countless number of
things. Not of guts, but of things, things of different colors and
shapes, things arranged in a rigorous order and economy of space
within her body. (353)

Lear anchors the negative aspect of this uncertain diversity—that is, that
kind of difference, or disability as bare life—in her companions’ lack of
 The Disability Twist in Stranger Novels 239

shame over their new bodies. In fact, Lear seems less bothered by the bodily
experimentations themselves than by the Atlántidos’s insufficient embarrass-
ment over their contortions, including wanton sexuality, which she describes
in moralistic tones as “filthy acts” (353). To the Atlántidos’ credit, it must
be observed that the pro-lobotomy vote comes about because the Atlántidos
cannot bear their state of perfect health. They seem poised for immortality,
as long as they protect themselves from radiation, but they apparently can-
not resist the desire for a “normalcy” plot. Just as Lennard Davis’s formula
predicts, the Atlántidos manufacture a situation of abnormality out of their
perfection that needs solving, and so to eliminate the “problem” of lies and
confusion, they eliminate language. Yet, this elected “cure” manages to kill
the novel—a problem for the narrator. Lear finds her final solution in the
abstract and places herself into a book: the “Heavens on Earth” of the title.
To surmise from this meditation (a posthuman realm of perfect health)
turned to plot (the lobotomy) turned toward meditation (the end of the
novel), it would seem that no alternative to narrative exists in the novel:
Lear’s attempted construction of another “real” narrative platform constitutes
merely another pass within the diversity loop, another embrace of carefully
defined narrativized sameness, created by excluding disability, that incorpo-
rates two other narrators—Estela and Hernando—against the willing bypass
of separated bios and zoe that her compatriots dare. Estela and Hernando
are included in the embrace of narrativized sameness because—note the near
paradox—they express uniqueness fashionable under a diversity discourse.
Their difference is not that kind of difference but the winking sameness of
acceptable diversity.
The sixteenth-century chair-bound narrator Hernando provides a case
in point. Lear and the narrator from the 1990s, Mexican academic Estela,
independently discover a text by elderly, largely immobile Hernando, who
attracts the other narrators’ platonic love. Hernando’s impairment does not
frighten Lear or Estela, probably because unlike the Atlántidos’ postlobot-
omy state, the oppressed indigenous man’s inability to walk or twist his
head toward the sky does not threaten established relationships with nar-
rative. Hernando’s younger self, also described as metaphorically impaired,
similarly fails to scare Estela or Lear. Despite Hernando’s insistent image of
having lost his hands, a symbol of the loss of his family’s native culture in
the colonial oppression of New Spain that leaves him with only a tongue
through which to apprehend the world, he remains respectable in Boullosa’s
diagnostic manual (142–144). Hernando’s literate isolation may underpin
his appeal for Lear and Estela. This loneliness supplies a sort of “diversity
chic” that defines a narrator’s outlook as distinctive and yet within the limits
of “normate-tivity.”
240 Emily Hind

As a final example of moralistic rejection of meditative body melding

and mutation in Boullosa’s novels, I cite El complot de los Románticos with
its dead writers’ conference held in Madrid. The organizer of this confer-
ence is also the main narrator of this experimental novel, and she blames
the location for spurring the revived authors to turn too “alive” (211). That
is, instead of writing or presenting papers as individuals on a reprieve from
mortality in Madrid, the setting gets to them and they start “mixing it
up.” The result of this uncontrolled joie de vivre involves the catastrophic
fusing of bodies:

And the anomalous gymnastics turned sinister: the celebrated

authors threw parts of themselves from themselves: a head
launches itself to attack the foot of its own body; hands work
loose, they turn into pinchers, they open chests, take out hearts,
replace their locations; the legs walk without torsos; a shoulder
wanders over there; the spinal column of every one of those
present—except for we two mortals—became one column of
vertigo, the feet were the hooves of imagination. Instead of
grammar, there were muscles. It would be unthinkable, if we
did not have the referent of comic books. In any case: horripid!
So much so that even among the toughest of the mob, some
felt moved. (249–250)

The scene does not require detailed interpretation because it fits with the
previous citations of bodily confusion and mutation. Boullosa’s narrator once
again fears the ominous privileging of the image over the word, that is,
“muscles” over “grammar,” and the body part mêlée proves grotesque enough
to put a permanent end to the yearly writers’ conference. Apparently, the
conference-curtailing threat has to do with the possibility that meditation
and its retooled expectations for diagnosis, narrative arcs, and interpersonal
relations threaten the very need for writers, whether dead or alive—and
perhaps even for normates, those narrators who are not famous dead writ-
ers, but wish that they were fashionably exceptional enough to be like
them.
Why don’t Boullosa’s narrators in Cielos de la Tierra, La novela per-
fecta, and El complot de los Románticos shake off the conventions of shaming
diagnosis, break free from the compulsory judgment of the normate, and
indulge the newly ungoverned and recombinant physique? The answer links
Boullosa’s intentionally limited experiment with that of Bellatin.
 The Disability Twist in Stranger Novels 241

Conclusion

Given the brisk pace of technological developments—from new pharma-

ceuticals to prosthetics and surgeries—Bellatin’s decapitated novelist and
Boullosa’s detachable body parts may one day strike readers as not so far-
fetched. The hypocrisy of the neoliberal diversity twist teaches with only
pretend tolerance that unfamiliar bodily stylings are welcome. However,
because Bellatin and Boullosa tinker with the structure of the novel, from
within the structure of the novel, the very genre that according to Davis
creates the problem of the realist average, their literary experimentations
do obey certain constraints. If Bellatin and Boullosa cannot craft texts that
exit the disability twist, this constraint may reflect the origin of novelistic
protagonists as artificial abnormals made to “do the twist” and end up
normal. The idea of bare life incorporated into the textual focus, into bios,
to the extent that such a notion surfaces at all, in Bellatin’s case seems to
point toward a paradisiacal void of pure writing, and in Boullosa’s novels
seems to threaten the end of writing. Still, fiction matters to them both.
In the final analysis, a literary critic finds herself hard pressed not agree.
Whatever its limitations, narrative invites us to think again, even as it seems
to want to think for us.

Notes

1. The change in language sustains the original point of instituting the

imaginary norm as reality; the novelistic formula means to ignore the fact that
the “normal” is “not a static or peaceful, but a dynamic and polemical concept”
(Canguilhem 239). Likewise, the inverse is true, and to cite one critic’s wording,
“Disability, as a category, is fundamentally unstable” (Hall 12).
2. Henry Scott Stokes’s history explains that Morita did not get the job
done and a fourth and final head-severing blow was delivered by the unruffled
accomplice Furu-Koga, a messy detail not recovered in Bellatin’s text (Stokes 31).
3. An impressive line of scholarship has cataloged Bellatin’s fascination with
strange bodies and seems to take inspiration in Bellatin’s impairment. For example,
in his Spanish-language prologue to a reprinted collection of Bellatin’s novels, Ariel
Schettini applies the English-language label “freak” and notes that Bellatin’s odd
figures use their physical difference as a means for integration into a community
(9). Schettini lists some of Bellatin’s stranger characters, such as the paralyzed man
from Perros héroes [Hero Dogs] (2003), the one-handed writer from Lecciones para
una liebre muerta [Lessons for a Dead Hare] (2005), and the long-nosed protagonist
from Shiki Nagaoka: una nariz de ficción [Shiki Nagaoka: A Nose for Fiction] (2001).
242 Emily Hind

This last title concerns a brilliant chapter in Susan Antebi’s groundbreaking book on
disability in Latin American fiction, and in a foundational article that first prepares
the way for Antebi’s and Schettini’s thought, Diana Palaversich creatively juxta-
poses Rosemarie Garland Thomson’s review of freak shows and Bellatin’s portrayed
genetic human mutations in Flores (Flowers) (2000), the decomposing characters’
bodies in Salón de belleza (Beauty Salon) (1994), and the odd bodily practices that
obsess characters in both Poeta ciego (Blind Poet) (1998) and La Escuela del dolor
humano de Sechuán (The School of Human Pain of Sichuan) (2001) (36). Palaver-
sich observes that the experimentation with characters’ physiques never denotes the
abject in Bellatin’s texts, and merely disturbs notions of unified identity. Because
the aforementioned critics have not yet taken up Biografía ilustrada de Mishima, I
chose that title for my analysis.
4. Kristin Lindgren cites Grosz’s use of the Möbius strip in Volatile Bodies
(1994) in order to articulate the notion in autobiography of illness, aka pathography,
that imagines a postillness self “not as a distinct, bounded entity entirely separate
from the old self but as a fluid configuration in which elements of old and new,
self and other, inside and outside, exist concurrently” (148). Joy Cypher and Deb
Martin use the Möbius strip to model the goal of critical thinking in the disability
studies classroom. They praise the flux and lack of endpoint in the Möbius strip,
which for their purposes came to be “not a thing but rather an undulating activity”
(Cypher and Martin).

Works Cited

Antebi, Susan. Carnal Inscriptions: Spanish American Narratives of Corporeal Differ-

ence and Disability. New York: Palgrave Macmillan, 2009.
Baynton, Douglas C. “Disability and the Justification of Inequality in American
History.” In The New Disability History: American Perspectives. Edited by
Paul K. Longmore and Lauri Umansky. New York and London: New York
UP, 2001, 33–57.
Bellatin, Mario. Biografía ilustrada de Mishima. Buenos Aires: Entropía, 2009.
Boullosa, Carmen. Cielos de la Tierra. México: Alfaguara, 1997.
———. La novela perfecta. Un cuento largo. México: Alfaguara, 2006.
———. El complot de los Románticos. México: Siruela, 2009.
Canguilhem, Georges. In The Normal and the Pathological. 1966. Translated by
Carolyn R. Fawcett. Introduction by Michel Foucault. New York: Zone
Books, 1989.
Cypher, Joy and Deb Martin. “The Mobius Strip: Team Teachers Reflecting on
Disability Studies and Critical Thinking.” Disability Studies Quarterly 28.4
(2008): n.p. Web. May 16, 2013.
Davis, Lennard J. Enforcing Normalcy: Disability, Deafness, and the Body. London
and New York: Verso, 1995.
 The Disability Twist in Stranger Novels 243

———. Bending Over Backwards: Disability, Dismodernism and Other Difficult Posi-
tions. Foreword by Michael Bérubé. New York and London: New York UP,
2002.
———. The End of Normal: Identity in a Biocultural Era. Ann Arbor: U of Michi-
gan P, 2013.
Garland-Thomson, Rosemarie. Extraordinary Bodies: Figuring Physical Disability in
American Culture and Literature. New York: Columbia UP, 1997.
Grosz, Elizabeth. Volatile Bodies: Toward a Corporeal Feminism. Bloomington: Indi-
ana UP, 1994.
Hall, Alice. Disability and Modern Fiction: Faulkner, Morrison, Coetzee and the Nobel
Prize for Literature. New York: Palgrave Macmillan, 2012.
Hayden, Deborah. Pox: Genius, Madness, and the Mysteries of Syphilis. New York:
Basic Books, 2003.
Lindgren, Kristin. “Bodies in Trouble: Identity, Embodiment, and Disability.” In
Gendering Disability. Edited by Bonnie G. Smith and Beth Hutchison. New
Brunswick, NJ: Rutgers UP, 2004. 145–165.
Mitchell, David T., and Sharon L. Snyder. Narrative Prosthesis: Disability and the
Dependencies of Discourse. Ann Arbor: U of Michigan P, 2000.
———. Cultural Locations of Disability. Chicago and London: U of Chicago P,
2006.
Oliver, Michael. Understanding Disability: From Theory to Practice. 2nd ed. New
York: Palgrave Macmillan, 2009.
Palaversich, Diana. “Apuntes para una lectura de Mario Bellatin.” Chasqui. 32.1
(2003): 25–38.
Schettini, Ariel. “Prólogo. En el Castillo de Barbazul: El caso de Mario Bellatin.” Tres
novelas: Salón de belleza, Jacobo el mutante, Bola negra. Mérida, Venezuela:
El otro el mismo, 2005. 7–18.
Shakespeare, Tom. Disability Rights and Wrongs. London and New York: Routledge,
2006.
Stokes, Henry Scott. The Life and Death of Yukio Mishima. Revised edition. New
York: Farrar, Straus and Giroux, 1995.
Thompson, Clive. “The Rules of Panic: Why Some Technologies Seem Benign and
Others Scare the Bejesus Out of Us.” Wired 20. November 11, 2012: 70.
 Chapter 13

The Blur of Imagination

Asperger’s Syndrome and One Hundred Years of Solitude

Juan Manuel Espinosa

The idea for this chapter began with an image, that of a lonely man sitting
at his desk in front of old documents, enthralled by the deciphering of
their hidden meanings, all the while the world is tearing itself apart. That
is the final scene of Gabriel García Márquez’s One Hundred Years of Solitude
(Cien años de soledad, 1967) in which Aureliano Babilonia, the last living
descendant of the Buendía family, deciphers Melquíades’s parchments long
after several generations of Buendías had tried and failed to do so. When
he does, the parchments reveal to him and to the novel’s readers that he is
reading what has been in fact happening in real life (Rodríguez Monegal
486). This is an image of painful loneliness, not simply because of the
contingent circumstances that surround the character—Macondo will soon
be swallowed by a hurricane—but because, just as Babilonia understands
the story that explains his world, his family and himself, said world is being
destroyed. The moment of recognition of an order of the world is the same
moment in which the hurricane destroys that world and its order. It is a
weird ending. The real world inside the book loops into the parchments,
and because it is the end of the book itself, it seems to hint that there is
some kind of ending of the real world as well.
Fast-forward forty years and we find Aureliano Babilonias everywhere,
in books, films, and other registers of popular culture: an awkward person
with difficulties in relating to others, who has a limited set of interests but
cultivates them with extreme intensity, a person who could continue read-
ing even if the world were to be blown away. In popular parlance today,

245
246 Juan Manuel Espinosa

this outsider character has several names: the geek, the freak, the nerd, the
outcast. All the versions of this character suffer the same painful loneliness: as
soon as they understand the order of the world, the world seems to change.
If these traits were previously attributed to and understood as idiosyn-
crasies at best or defects at worst in a person’s character, with the medical-
ization of culture (Conrad 3–19) we have now attached a formal diagnosis
to this new cultural icon. If we were to overlap these characteristics into a
Venn-Diagram we would find, at their meeting point, the current cultural
image of a person with Asperger’s syndrome (AS): a person who seems to
be always looking for the meaning of the world in the social cues of others,
for a rule-based understanding of their own surroundings, for a place in a
world that is constantly changing. As we see below, Asperger’s has become
a trait with high cultural value today.
The cultural reception of the medical diagnosis constitutes a very
broad and rough interpretation, one which we find in all types of cultural
artifacts. However, even if inaccurate, the relation to imagination that this
diagnosis has within culture is what I place on center stage, as it is what
connects the cultural valences of AS to One Hundred Years of Solitude. In this
chapter, I am not proposing to apply symptoms of Asperger’s diagnosis to
fictional characters and to their reactions to narrative events. Rather, I think
through the role of imagination as constructed by two different concepts:
Asperger’s syndrome and Magical Realism. In both phenomena I believe
imagination—what it means and how it works on fiction and on the ways
we understand each other—is transformed in unexpected ways. It is this
transformation that forces us to understand Magical Realism as a particular
genre and enjoy its flourishes, but also, regrettably, it makes us separate
nontypical ways of understanding the world and diagnose them as “condi-
tions.” Magical realism has infused literature beyond its particular point of
origin, be that One Hundred Years of Solitude or its predecessors and it has
shaped how we read today. Asperger’s syndrome is no longer exclusively a
medical condition to be treated, but rather it has been transformed into
an identity to be embraced, and a character trait used in fiction, movies
and cultural discourse. Nevertheless, these new uses come at the price of
misunderstanding, particularly because the medicalization of culture has
progressively become the only way we deal with mental differences.
In this chapter, instead of medicalizing Asperger’s syndrome, I attempt
to explain it as a particular way of mentally organizing—imagining—the
world, and I draw a connection to a way of reading One Hundred Years of
Solitude. I do this by briefly addressing the history of the concept of imagi-
nation: how it transformed from the faculty that allows us to apprehend
the reality around us, into a cherished ability to escape the limits of that
 The Blur of Imagination 247

reality, and how this new iteration has been applied in medicine and culture,
turning its absence into a symptom for the former, and into a character
trait for the latter. Then I describe Asperger’s syndrome, paying particular
attention to the ways imagination works—in AS people and, crucially, in
their diagnosis. Finally, I read the first page of García Márquez’s novel in an
Asperger’s-like key, that is, while paying particular attention to the moments
when readers bear witness to the creation of an imaginative world that
does not follow preestablished categories, and when the text forces readers
to release those received ideas and patterns and create a new image of that
“new” world. If there is something to be learned from reading the page
this way, it is to allow us to understand the real-life process of creating a
new image of a new world that people with AS do continuously, not as
a disorder or mental condition, but as a genre in the repertoire of world-
organization that humans are capable of carrying out.

Imaginations

In his Critique of Pure Reason (1781/1787), when Immanuel Kant refers

to imagination, he uses the term as it was most commonly employed at
the time, as an ability every mind has of integrating multiple sensory data
when perceiving them. The following passage captures this sense of the
faculty of imagination.

Because every appearance contains a manifold, so that different

perceptions are in themselves encountered in the mind sporadi-
cally and individually, these perceptions need be given a com-
bination that in sense itself they cannot have. Hence there is
in us an active power to synthesize this manifold. This power
we call imagination: and the act that it performs directly on
perceptions I call apprehension. For the imagination is to bring
the manifold of intuition into an image. (CPR 167 [A 120])

After Kant, however, with the rise of Romanticism, another mean-

ing—which had existed parallel to the first one—came to the forefront: the
mind’s ability to be creative, to produce analogies, to be fanciful, to create
images not based on—or independent from—reality. Both may be active
mental powers, but while Kant’s understanding of imagination is a necessary
capacity for all human beings, the Romantic imagination is only attributed
to certain gifted people. This is fancy, the realm where imagination stops
being a faculty of the mind and starts being a social, cultural, or artistic
248 Juan Manuel Espinosa

quality that provides an escape from one’s immediate surroundings. Kant’s

broader sense of imagination has receded to the background, since then
reappearing only sporadically, and it is my belief that in order to understand
Magical Realism and Asperger’s syndrome, and to change how we confront
these two phenomena, we need to bring Kant’s meaning back into view.
The change from the Kantian definition to the understanding of
imagination as mere fancy is not an innocent one. As Lorraine Daston has
shown in “Fear and Loathing of Imagination in the Arts”:

This early nineteenth-century confrontation of individualistic,

brashly subjective art with collective, staunchly objective science
was not simply the collision of some timeless faith in the imagi-
nation with an equally timeless faith in facts. Rather, it signaled
a mutation in the meanings both of imagination and of facts
that still shapes the moral economy of science. (17)

Daston shows how imagination at first was seen as controllable by

reason, by facts, and by a clear communication between scientists—the rise
of objectivity as an array of commitments to a set of instruments, procedures
and standards (23). But later on, this cautionary view began to give way to
a loathing of imagination. Quoting again from Daston:

The power of the imagination had long awakened fear among

scientists—and theologians, poets, artists, and doctors, to boot—
because it could make up a world of its own that was livelier,
lovelier, or more logical than the real world. In extreme cases
the imagination could conquer the body as well as the mind,
leading not only to madness but also to violent somatic crises.
But Enlightenment theorists of the imagination had been con-
fident in the right and competence of reason to discipline the
imagination. (27)

The Kantian aspect of imagination was coalesced into fancy, the faculty of
drifting away from facts. The fear and loathing of imagination in the sciences
has navigated into the realm of culture, and although there is no such thing
as a fear and loathing of imagination pure and simple in the arts, there is
an everyday treatment of imaginary objects and texts according to heavily
regulated protocols and surrounded by an array of cautionary tales. These
tales are based precisely on the idea that some genres, motifs or ideas are
based “on reality” (realism and naturalism, for example) and others are an
escape from it (fantasy and speculative fiction and all its subgenres).1 In this
 The Blur of Imagination 249

dyad, realism carries all the weight of seriousness, relevance and intellectual
and cultural authority, while fantasy is at best relegated to child’s play (or to
children’s literature). Fantasy is the genre of entertainment where imagina-
tion is given free reign, while realism is the genre that can deal with truths
and facts precisely because imagination is kept in check.
When readers first encountered Gabriel García Márquez’s novel One
Hundred Years of Solitude, something that did not exist before appeared in
their consciousness, something that thanks to the media was popularized
under the term magical realism.2 What appeared before the reading public
was not simply a literary genre; it was a different way of organizing a
manifold of perceptions, a different way of imagining the world. What was
new in this novel, and what a magical realist text and Asperger’s syndrome
have in common is that the readers—and non-Asperger’s individuals—are
forced into understanding imagination in Kant’s sense. That is, they are
confronted with a singular way of organizing perceptions that is different
from our culture’s shared imaginative practices.
The historical reason for this meeting point between a syndrome and
a narrative genre, is that the drive for objectivity and communicability
in the sciences was also at the core of nineteenth-century and twentieth-
century philological and literary history projects—and therefore the way
we traditionally ascribe order to literary genres. The need to separate fact
from fiction and the scientific from the artistic rehashed the old idea of a
dualistic notion of the world divided into the everyday world and the world
of ideas that can be traced back to Plato. The borders between these two
terms have been constantly put into question, deconstructed and reviewed in
both Continental and Anglophone philosophical traditions—albeit in differ-
ent ways—and in literary studies, but in this analysis I am interested in the
moment when a reader experiences that dyad not in terms of separation, but
in the blurring and mixing of worlds. Magical Realism is a nowhere land,
or better yet, a land that embraces the dyad of reality and the imaginary,
and where there is no hesitation regarding the difference between them.
Right at the moment when the novel ends by turning in on itself,
readers are left with the realization that the world has changed. In the last
sentence of the final chapter they understand that the text has bled into
reality; the fiction has surreptitiously infused itself into the pillars of what
is for everybody “real,” blemishing the clean-cut separation between reality
and imagination. This is the impasse of imagination that we find both in
the novel and in the interpretation of AS traits. Readers today, in their
constant need to understand a world that changes before it is completely
comprehended, have grabbed onto the magical realist blurring of fantasy
and reality; at the same time they feel represented by characters whose
250 Juan Manuel Espinosa

traits bring the loneliness of a lack of a communicable imagination to the

fore. From this point of view, it is in this impasse and blurring of differ-
ent versions of imagination that we can locate the reasons why readers and
viewers find a novel like One Hundred Years of Solitude and the portrayal
of the lived experiences of people with AS so enticing: it is their chance
to see imagination (in Kant’s sense) at work, creating individual noncom-
municable worlds, while at the same time empathizing with the solitude
and alienation that comes out of that process of imagining a world (a more
Romantic reaction).

Asperger’s Syndrome

Asperger’s syndrome is classified as one of five pervasive developmental dis-

orders, “a group of disorders characterized by delays in the development of
socialization and communication skills” (National Institute of Neurological
Disorders and Stroke [NINDS]). The main symptoms that need to be pres-
ent to diagnose someone as in the pervasive developmental disorders spec-
trum are problems with language, difficulty relating to people and events;
and, in the case of Asperger’s, a limited but very intense interest in a par-
ticular topic. Due to stark differences in diagnostic criteria, the prevalence
estimates of Asperger’s disorder in the population vary greatly, but according
to Ehlers and Gilberg it can be said that 2.6 persons per thousand have
this condition. It is not, then, a very common diagnosis.
Nonetheless, the cultural prevalence of Asperger’s would seem to tell
a different story. In the science fiction TV series Alphas, a character with
Asperger’s was able to visualize all electromagnetic signals. In TV sitcoms,
we only need to think of The Big Bang Theory, where we find Sheldon
Cooper, a character with Asperger-like traits, or Abed Nadir in Commu-
nity, who had a strong proclivity to seeing and understanding everything
around him as if it were a TV show. In nonfiction, Oliver Sacks, probably
the most visible figure in the fraught process of popularization of medical
cases, helped undermine long-established prejudices against mental disorders
while also smoothing out the path to the medicalization of social and cul-
tural phenomena.3 While Sacks does not focus his attention exclusively on
AS, a whole array of other writers have published bestsellers on the topic.
Irish psychiatrist Michael Fitzgerald has written several books that try to
make the case for Asperger’s as the origin of creativity in many famous
figures throughout history. Persons diagnosed with the syndrome have also
penned their own books about their life experiences (Grandin, Tammet,
and Elder Robison), and movies and documentaries have started to appear
 The Blur of Imagination 251

with increasing frequency. In terms of fiction the most notable examples

are Mark Haddon’s Curious Incident of the Dog in the Night-time, and in
Mexico, Sabina Berman’s Me, Who Dove into the Heart of the World. [La
mujer que buceó dentro del corazón del mundo].4
The diagnostic criteria of the AAA (Adult Asperger Assessment) require
three or more symptoms of qualitative impairment in verbal or nonverbal
communication (lack of emotional reciprocity, difficulties understanding
social situations, apparently inflexible adherence to specific nonfunctional
routines and rituals, repetitive motor mannerism are some of them) and at
least one symptom of what are considered to be impairments of imagination:5

1. Lack of varied, spontaneous make-believe play appropriate

to developmental level.
2. Inability to tell, write or generate spontaneous, unscripted
or unplagiarised fiction.
3. Either lack of interest in fiction (written, or drama) appropri-
ate to developmental level or interest in fiction is restricted to
its possible basis in fact (e.g. science fiction, history, technical
aspects of film). (Attwood 50)

As many of the forum postings in online support pages for per-

sons within the PDD spectrum and their families show, there is a cru-
cial misunderstanding regarding imagination.6 When the AAA fixes lack of
“make-believe” play “appropriate to developmental level” as a symptom and
understands fiction as “spontaneous, unscripted and unplagiarised,” and its
proper reception as not “restricted to its possible basis in fact,” it is leaving
behind the general faculty of imagination described by Kant and reach-
ing towards the concept of fancy, prevalent thanks to Romantic notions
of the self as autonomous producer of fantasy. There is no such thing as
an impossibility or impairment of imagination if it is understood as the
faculty of synthesizing multiple sensory perceptions into mental images of
the world. These mental images do not need to be flights of fancy to be
creative; they are creative in the sense of being a personal or exclusive rear-
rangement of an individual’s perceptions of the world. Therefore, we could
say that the difference between AS and neurotypical imaginations relies on
how communicable this uncommon rearrangement in fact is. In the case
of a person with Asperger’s, this rearrangement could be understood as not
following the preestablished codes or categories that allow for the sharing
or communicability of the rules of such an imaginative world. However, it
does not mean this type of imagination is not creative, but rather simply
252 Juan Manuel Espinosa

that it cannot be easily classified according to conventional communicable

categories, one of which, used in the AAA, is the division between reality
and fantasy.
It seems ironic then that the sciences, characterized by Daston by an
alleged “fear and loathing of imagination,” define a disorder according to a
lack of imagination. Imagination then has suffered another transformation.
If once, according to Kant, it was a general faculty to make sense of the
manifold of appearances, and then under the Romantics, it was a quality
that only some brilliant people have, today the lack of this second and more
exclusive definition is being used as a symptom of a disorder.
This is why a simple reading in a certain key can help us find a dif-
ferent path to understanding AS: not as a disorder but as a variation in the
repertoire of how humans mentally organize the world around them. If we
do not define AS as a mental deficit but as a genre in the multiple ways
of imagining how the world works, then we will not be limited to under-
standing AS in diagnostic terms, but as a variation in human experience.
How can we imagine inhabiting that construct? The following reading
may suggest a way to do so.

One Hundred Years of Solitude

García Márquez’s novel starts with one of the most recognized and memo-
rized sentences in world literature today: “Many years later, as he faced
the firing squad, Colonel Aureliano Buendía was to remember that distant
afternoon when his father took him to discover ice” (1). Much has been
said about its apparent simplicity, and about how it hides a strange difficulty
in ascertaining the position from which the narrator is telling the story:
Is he talking to us after the Colonel’s death, or years before, through that
strange grammatical construction “había de recordar”—roughly translated as
“was to remember”?7 Furthermore, the childhood remembrance immediately
throws us back into the first years of Macondo, showing us the Colonel’s
parents and town founders José Arcadio Buendía and Úrsula Iguarán. Only
once again in the opening chapter will we readers be informed of anything
else about the Colonel—although we will begin to know a little about his
childhood—while the chapter will end by recovering that initial image of
seeing ice for the first time.
Others have seen in that same first sentence a quick and powerful
move by the author to transport readers to a time—far gone by now for
many of them—when refrigerators were not just uncommon but completely
unknown, and to a place—very different also from the usual cosmopolitan
 The Blur of Imagination 253

sites of 1967’s reading public—where winter did not exist, or if it did it was
never cold enough to freeze water. In such a remote time and place, many
years later, a firing squad would nevertheless appear. This means that within
a single lifetime a town has gone from discovering ice to being faced with
guns, military organizations, and political institutions—after all, Aureliano
is a colonel. Within a single lifetime, the sentence is also telling us, this
town has gone from existing in a mythical place and time to becoming a
participant in history and in the historical accident we call “war.”
Readers understand the plot of the first chapter even if they do not
know exactly what kind of fictional universe they have entered, because
they are able to deploy theories and interpretations, create emotional and
mnemonic links, without ever feeling that the novel is pushing against their
expectations. The novel seems to let readers riff their own interpretations
about the categories under which they should classify the narrative, without
telling them they are not right. There are no communicable patterns or
standards of what imagination and facts should be, as there are in science
(Daston 27).
Let us return to the end of the first sentence to see how this blurring
of categories comes to be: Here, the readers’ musings regarding Aureliano’s
psychology—why is that particular memory so important for him—imme-
diately go off-board upon coming across the following sentence: “At that
time Macondo was a village of twenty adobe houses, built on the bank of
a river of clear water that ran along a bed of polished stones, which were
white and enormous, like prehistoric eggs” (1). It starts as a simple, properly
realist and descriptive sentence, with all the gritty stuff needed to classify it
as such: the materials the houses are made of and the town’s location along
a riverbed. It would remain a simple descriptive sentence if it were not for
that last simile: the riverbed’s huge white rocks like prehistoric eggs. The
narrator then knows more than the characters: he knows about evolution
and prehistoric time––while for Aureliano, seeing ice for the first time was
a world-changing moment and a long-lasting memory. The mythical time
and place that were evoked in the first sentence start to dissipate when the
narrator brings forth a wisp of scientific discourse just by using the word
“prehistoric,” even if “prehistoric eggs” is a flight of fancy indeed.
However, the scientific discourse that would have made so much sense
in a nineteenth- or early twentieth-century naturalist novel with its minute
descriptions and empirically based explanations, is in turn quickly trumped
by the next sentence: “The world was so recent that many things lacked
names, and in order to indicate them it was necessary to point” (1). With
this hyperbole the narrator seems to be mocking his readers: a narrator who
knows about prehistoric times cannot immediately state that the world is
254 Juan Manuel Espinosa

recent, and even less, that humans can communicate without names for
objects. That uncertainty regarding the exact position in time from which
the narrator is speaking, the same effect the first sentence produced by
means of grammar, the narrator is now producing in readers thanks to the
coalescence of cultural discourses that usually do not meet, or if they do
it is only to contradict or argue against each other: the scientific discourse
and the mythical or religious one. Nevertheless, something seems to be tying
them together for the moment.
In this land of nowhere and at this uncertain point in history, an
event familiar to every reader takes place: the arrival of something differ-
ent from what we commonly see, the arrival of the New. Be it the arrival
of the circus, the fair, a ship, the press talking about the city’s underbelly,
the release of a summer blockbuster, a new technological device or the
introduction of the next iPhone, all of these instances are brought from
an “outside” into our familiar space and mindset. In the case of the novel,
those who introduce the new are the quintessential outsiders for almost any
European or American reader: gypsies. “Every year during the month of
March a family of ragged gypsies would set up their tents near the village,
and with a great uproar of pipes and kettledrums they would display new
inventions. First they brought the magnet” (1). Here, just when readers,
because of the contradiction of discourses in the narrator’s voice, could
start to distance themselves from this world—it could easily seem to be not
real enough, too much inside the sandbox of fantasy—the arrival of the
gypsies is portrayed in such generic terms that it works in readers’ minds
as a mnemonic wildcard, connecting itself with any particular memory of
seeing something new in a strange place.
According to the traditional understanding of what magical realism
means, people in Macondo do not experience or recognize a strict separation
between what is customary and normal and what is new and marvelous.
This blurring of the separation is accomplished by the blemishing of cultural,
geographic or historical ideas we readers use to organize our world, rules
we have agreed on or have had imposed onto us. Every time gypsies arrive
to town in this chapter the narrator describes their marvels with facets of
both premodern alchemical ideas and modern scientific discourses. At the
end of the chapter, when the travelers bring the ice, a new moment of blur-
ring between myth and science appears, as they declare ice to be the “most
startling discovery of the sages of Memphis” (16). An alchemical train of
thought may bring us to the conclusion that they are referring to Memphis,
the ancient capital city of Egypt, but at the same time they could easily be
referring to Memphis, Tennessee, or any other North American city whose
name appeared, in small letters, on the name tag of every new machine
 The Blur of Imagination 255

arriving early in the twentieth century to small Caribbean towns through

U.S. expansion. “What do ancient cities like Memphis or Syracuse have to
do with technological innovation?” is the question flabbergasted readers,
cued by a corpus of common knowledge, would ask themselves: the com-
mon assumption is that cities of the Ancient World should not have any
relevance in the arrival of a technological wonder to a small tropical town.
By mixing references to arcane traditions and ancient cities along with
perfectly explainable scientific phenomena, the text is stripping away the
monopoly that science has had on wonder since the beginning of modern
times and creating a semblance of a place that is ancient and modern at
the same time. The reconfiguration of discourses and organizing categories
is one of the crucial aspects that have attracted readers to One Hundred
Years of Solitude and to Magical Realism.
While this effect is marvelous for readers, it should also remind us
of the solitude of understanding the world differently. The sense of won-
der that people bring to the written page is left there when they close the
book, and when it comes to dealing with people who accomplish the very
same procedures on a daily basis, they automatically return to a medicalized
understanding of phenomena. When categories of knowledge and patterns
of imagination are constructed but not shared, that is when solitude is
experienced—a solitude not due to an excess of imagination (as is the case
for some of the novel’s characters) or a lack of it (as for people with AS
according to the AAA), but due to an imagination that is not communicated
to others. This solitude will continue to be experienced due to the com-
mon misunderstanding of the always singular, often difficult-to-share images
of the world in each AS person’s mind. Beyond more precise diagnostic
practices, then, we need to recover the Kantian, non-Romantic notion of
imagination and regard imagination as a fundamental human characteristic
that is exercised in many different ways. Close engagement with texts such
as One Hundred Years of Solitude may provide an opening to these insights.
In his 1982 Nobel acceptance speech, García Márquez addressed Span-
ish America’s troubled relationship with imagination and history, and how
the region has been traditionally misunderstood by the West:

Poets and beggars, musicians and prophets, warriors and scoun-

drels, all creatures of that unbridled reality, we have had to ask
but little of imagination, for our crucial problem has been a
lack of conventional means to render our lives believable. This,
my friends, is the crux of our solitude.
And if these difficulties, whose essence we share, hinder
us, it is understandable that the rational talents on this side of
256 Juan Manuel Espinosa

the world, exalted in the contemplation of their own cultures,

should have found themselves without valid means to interpret
us. It is only natural that they insist on measuring us with the
yardstick that they use for themselves, forgetting that the rav-
ages of life are not the same for all, and that the quest of our
own identity is just as arduous and bloody for us as it was for
them. The interpretation of our reality through patterns not our
own, serves only to make us ever more unknown, ever less free,
ever more solitary.

If we were to replace in our minds “Spanish America” with the AS

experience of the world for a moment (that is, a combination of individual
imagination, medical diagnostic practices, and the cultural construction of
AS in literature, film and other media), the abandoning of the Kantian
sense of imagination reveals its consequences. Therefore, we need to recover
the rich complexity of the epistemological concept of imagination, if we
are to try to comprehend the AS lived experience of world-imaging (and
of epistemological solitude, according to García Márquez). Only if we push
the limits of our definitions of what imagination means will we be able to
include these cases of blurrings of imagination into our ethical and politi-
cal lives. Then, my suggestion is simple but extremely difficult at the same
time: read Asperger’s syndrome like a magical realist fiction, letting AS
imaginations marvel us and teach us how varied and wonderfully complex
the organization of the world may be.

Notes

1. Although it has changed in recent decades, grown-up literature was real-

ist literature, a useful genre because it dealt with real-life problems. In a certain
sense, the definition—and the lack of prestige—of imaginative and/or children’s
literature depends on the traditional division made between childhood and adult-
hood, wherein the adult has to deal with problems they face in real-life, instead of
retreating “like children” into imaginary worlds.
2. Magical realism as a term already existed in visual arts with Frantz Roh, in
Spanish-American literature with J.L. Borges, A. Carpentier, and A. Uslar Pietri, and
in Spanish-American literary criticism by Ángel Flores and Luis Leal (Cf. Zamora
and Faris 1–19). My purpose here is not to go against the grain of literary his-
tory, but to shed light on a moment of the history of a literary text. It is García
Márquez’s book, and others that came after, that bring to most readers’ mind the
idea of Magical Realism, not Roh’s work or Flores’s criticism.
 The Blur of Imagination 257

3. He has also been seen as taking advantage of the cases for his own career
(Shakespeare 137), and being in a troublesome, nowhere position where the ethical
codes of anthropology and medicine do not apply (Couser 7).
4. According to a Wikipedia entry, the appearance of characters in films,
movies, video games, and comics who have AS and other degrees of the PDD
spectrum grows every year (“List”). The list may not be complete, and if complete
it is difficult to determine the objectivity of its contributors, but its very existence
is a telling sign in itself.
5. Developed by Simon Baron-Cohen at the Autism Research Centre at the
University of Cambridge (www.autismresearchcentre.com/arc_tests).
6. Autismsupportnetwork.com, Wrongplanet.net, Aspiesforfreedom.com are
the most active.
7. Early on in the United States by McMurray (1969), and since then usu-
ally covered in monographs like Wood.

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———. Me, Who Dove into the Heart of the World. Translated by Lisa Dillman
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———. The Genesis of Artistic Creativity: Asperger’s Syndrome and the Arts. London:
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Rabassa. New York: Harper Perennial Modern Classics, 2006.
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———. “Gabriel García Márquez-Nobel Lecture: The Solitude of Latin America.”

Nobelprize.org. n.p. Web. February 25, 2013.
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———. The Way I See It: A Personal Look at Autism & Asperger’s. Arlington, TX:
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———. Embracing the Wide Sky: A Tour Across the Horizons of the Mind. New
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 Epilogue
#YoSoy

Robert McRuer

Libre Acceso: Latin American Literature and Film through Disability Studies
is not only an apt title for this important volume: the concept of “libre
acceso” also points to the Latin American hopes and aspirations that have
captured the attention of the world over the past few years. In this brief
epilogue, I weave the critically disabled project of this volume—which after
all concludes with a section “Imagining Other Worlds”—into those Latin
American/global hopes and aspirations.
The title of my epilogue evokes the hashtag made famous on Twitter
by the Mexican student movement that emerged in 2012: #YoSoy132 (I
am 132). On May 11, 2012, Enrique Peña Nieto, the future president of
the country and then-presidential candidate for the Partido Revolucionario
Institucional (PRI), spoke to a group of students at the Ibero-American
University in Mexico City. He was questioned by some of the students about
civil unrest and charges of police brutality that occurred in San Salvador
Atenco in 2006, when—as governor of the state of Mexico—Peña Nieto
called in police to shut down a protest by local flower vendors and their
supporters. The protestors had barricaded the highway leading from Atenco
into a local market where the vendors had been prohibited from selling
their wares. Peña Nieto called in the police to break up the protest; in the
ensuing clash, two protestors were killed. Peña Nieto defended his 2006
actions as governor, but the Ibero students were not satisfied. They sharply
critiqued his campaign in particular and state violence in general, and later
uploaded a video of their confrontation with the candidate to YouTube.

259
260 Robert McRuer

When the major Mexican news outlets covered the events at Ibero,
they reported, contrary to the facts, that the vocal critics of Peña Nieto
were not actually enrolled students of the university. Legitimate students
were, in other words, unrecognized and delegitimized by dominant media.
In response, 131 students published another video on YouTube identifying
themselves with their Ibero-American University identification cards. The
video was circulated across the city, country, and world, eliciting the hashtag
#YoSoy132. The statement “I am 132” indicated support for the students
as well as for a burgeoning movement against police brutality, corruption,
and institutionalized political power. Although in 2012 the PRI had been
out of power for more than a decade, it was still perceived by the students,
along with its primary rival (the Partido Acción Nacional, or PAN, which
had held power since 2000), as both entrenched and corrupt. Perhaps most
importantly, #YoSoy132 marked collective resistance to the ways in which
the dominant media had colluded with political power structures that are—
in the view of the students and their supporters—undemocratic and brutal.
#YoSoy132 imagined other worlds and other representations. It also called
for recognition that was necessarily both individual and transindividual. “I
am” the hashtag shouted, demanding recognition and condemning willful
misrecognition. But “I am” simultaneously and paradoxically meant “we
are.” Like students in Chile from 2011 on demanding free and accessible
education for everyone, or protestors across Brazil in 2013 calling for hos-
pitals and schools rather than multimillion dollar stadiums, the Mexican
student movement insisted that “we” have another, collective, vision of open-
ness, access, democratic inclusion, justice, and freedom.
#YoSoy132 was not, at least on the surface, a disability action, but
Libre Acceso, this volume, similarly pivots between the call for individual
recognition (and a concomitant refusal of ongoing, systemic misrecogni-
tion) and the expansive affirmation of a collective (and here, openly and
generatively disabled) existence. It is, I would argue, not merely coincidental
that this volume, even as it examines almost a century of cultural produc-
tion, emerges from a specific historical moment when varied agents across
the region are demanding and working to materialize freer, more accessible
futures. Indeed, this volume posits, those imagined futures are necessarily
disabled, in that they can and must take into account the full diversity
of bodies and minds that compose the social both in Latin America and
globally. The volume works through what Juan Manuel Espinosa calls in
his chapter “an impasse of the imagination that we have not yet explored
thoroughly enough.” “We need,” Espinosa insists, “to expand our notion
of what imagination means and to use this expanded idea when trying to
understand others’ worldviews.” We also need, as Nicola Gavioli’s chapter
 Epilogue 261

on the implicit violences of documentary filmmaking makes clear, to call

out (as the Mexican student movement did in 2012) misrepresentations or
willful misrecognitions.
Thus, the volume essentially says, “Yo soy,” meaning with that implicit
assertion, all at once, I am, we are, and we can imagine something else,
something beyond the here and now. The editors in fact structure this
pivot—from individual identification or self-realization to collective rein-
vention—into the volume’s organization. Contributions by Lina Meruane,
Kevin Goldstein, and Beth Jörgensen open Libre Acceso, considering the
varied ways in which specific authors (including Jorge Luis Borges, Meruane
herself, Gabriela Brimmer, Ekiwah Adler-Beléndez) think with and through
individual experiences of blindness or cerebral palsy. Attending to the work
of those “who produce art from a situation of disability,” Jörgensen insists
in her chapter, can expand “our understanding of the complexities and
the possibilities of negotiating geographies of exclusion and access in Latin
America.” Her consideration of both the life writing and the activism of
the Mexicans Brimmer and Adler-Beléndez leads into the second major
part of the book.
Following these opening chapters, essays by several contributors theo-
rize the collective, considering what Susan Antebi calls in her chapter “an
affectively and historically loaded, yet potentially open-ended moment of
exchange, and hence a productively disabled intercorporeality.” Valerie M.
Souza and Melissa Schindler, in chapters that specifically examine cultural
production in Brazil, focus on how this disabled intercorporeality is neces-
sarily racialized, on how (in Schindler’s words) “the discourses of race and
disability are co-constitutive.” Victoria L. Garrett, similarly, in her over-
view of the New Latin American Cinema of the 1960s and 1970s, locates
“injurability and resulting physical alterity” as “inseparable from racial, aged,
ideological, and socio-economic marginality.” Libre Acceso the volume, and
“libre acceso” more generally, thus depend on acknowledging and articu-
lating both individualized disabled experiences and collective and varied
experiences of intercorporeality.
Some of the chapters in Libre Acceso speak to tensions between the
individual and collective or, even more provocatively, interrogate the ways
in which certain forms of recognition (particularly within the context of
neoliberal capitalism and globalization) are bound up with misrecognition,
dispossession, and displacement. In Latin America, which continues to sus-
tain some of the highest levels of inequality in the world, what anthropolo-
gist João Biehl calls “zones of social abandonment”—“where living beings
go when they are no longer considered people” (2)—coexist with, and in
many ways depend on, other zones where difference (including, at times,
262 Robert McRuer

disabled difference) is acknowledged, recognized, and incorporated in lim-

ited ways. Biehl writes about both Brazil and impairment/disability, openly
considering, for example, “how life-enhancing mobilizations for preventing
and treating AIDS could take place at the same time that the public act of
allowing death proliferated” (4). The public act of allowing death is evident
for Biehl in the zone of social abandonment that is the specific focus of his
study (a Porto Alegre asylum called Vita). Many Brazilians, however, had
similar thoughts about a gap between state-sanctioned rhetoric and lived
reality in 2013. They took to the streets and demanded, beneath the banner
(and hashtag) of #OGiganteAcordou (“the giant has awoken”), that the state
not simply cater to the whims of transnational capital as it prepared for the
2014 World Cup and 2016 Olympic Games, but rather take into account
the needs (and intercorporeality) of all its citizens. Brazilians were protesting
the fact that total expenditures preparing for the upcoming games could
top $3 billion and that such expenditures would benefit only the few while
millions of others faced inadequate care and support and lacked basic social
services. When the football star Ronaldo Luís Nazário de Lima—popularly
known as “il Fenômeno”—crassly suggested that “you host a World Cup
with stadiums, not hospitals,” one father of a child with disabilities posted
his own retort on YouTube, saying that his daughter did not walk, see, or
speak and that it was for citizens such as her that protestors were taking
to the streets (“Em video”).
Biehl’s analysis resonates with the complex and contradictory ways
in which embodiment and impairment materialize across Latin America.
The day before International Disabled People’s Day and the day after his
December 1, 2012, inauguration, at the presidential residence of Los Pinos
in Chapultepec Park in Mexico City, Peña Nieto—in his first official act as
president—awarded the Premio Nacional de Deportes to (among others)
Gustavo Sánchez, a Paralympic swimmer who won two gold medals, one
silver, and one bronze at the 2012 London Games: “Este es el momento
de México y vamos a hacerlo realidad. Quiero una nación sana, y fuerte, y
ustedes, los deportistas son el mejor ejemplo a seguir” (“Entregan”). (“This
is Mexico’s moment and we are going to make it reality. I want a nation
healthy and strong and you, the athletes, are the best example to follow.”)
Mexico’s moment (a moment on December 2, 2012, of disabled recogni-
tion and incorporation), however, was inevitably haunted by what had come
before and what the students had called out: corruption, state violence,
and the willful misrecognition of embodied students, citizens, and activists.
Victoria Dickman-Burnett’s chapter in this volume effectively con-
veys this double move of incorporation and dispossession. Dickman-Burnett
attends to and questions Roberto Bolaño’s representation in 2666 of, on one
 Epilogue 263

side, the spectacle of an individual artist, Edwin Johns, who severed his hand
as an act of performance art and, on another side, the dozens and dozens
of anonymous, maimed, and mutilated bodies of women left in fields and
alleys and trash dumps in Santa Teresa, the novel’s fictional version of Ciu-
dad Juárez: “The intersection of globalization and general capitalistic excess
has created a world where an entire class of people, mostly female, does not
matter, and faces the marginalizing forces of global capitalism as it colonizes
Santa Teresa.” Many of those who do not matter in the borderlands, or who
work in the maquiladoras, or who have been murdered in Ciudad Juárez,
are or were also disabled, even if their impairments have not been recog-
nized as disabilities by the state in the same way as, say, Gustavo Sánchez’s.
“Unusually high” rates of depression, for example, have been noted among
women working and living in the borderlands (Brenner et al. 286). As Laura
Kanost makes clear in her own contribution to Libre Acceso, “Mental illness
is especially critical to the development of Latin American disability studies
because of the prevalence of these experiences in the region and the way
that they intertwine physical, social, and political factors.” Indeed, I would
venture to say that a Latin American disability studies, in part because of
the ways in which Latin American literature and film have long engaged
these issues, is primed to lead the field in a turn that it is now taking
away from a central or representative focus on physical impairments and
to a more thorough consideration of other impairments, including mental
illness and mental disability. As Ryan Prout’s chapter on Alzheimer’s and
María Novaro’s 2010 film Las buenas hierbas implies, this reorientation of
the field can and should come with a sharp critique of current geopolitics
(in Prout’s analysis, of cultural imperialism and a globalized biomedicine).
Latin America has given the world, however, from the first World
Social Forum held in 2001 in Porto Alegre, Brazil, the idea that “Another
World Is Possible.” And Libre Acceso indeed concludes with an exploration of
alternative forms, modes of being-in-common, and caring for and attending
to each other. Even as Emily Hind’s contribution in the final section makes
clear that the forces of normativity in cultural forms, particularly the novel,
are strong, it also demonstrates that Latin American novelists such as Mario
Bellatin and Carmen Boullosa continue to reach for “boundary-defying”
forms and structures. This boundary-defying volume rewrites both Latin
American studies and disability studies in its exploration of new representa-
tions and its novel approaches to old representations. Both interdisciplinary
fields have arguably misrecognized each other in the past few decades, to
judge by how much cross-fertilization remains to be done. Yet, over and
over again, Libre Acceso essentially presents readers with disabled figures
insisting “Yo soy”—I am, we are, and we can imagine something different.
264 Robert McRuer

Works Cited

Biehl, João. Vita: Life in a Zone of Social Abandonment. Berkeley: U of California

P, 2005.
Brenner, Joel et al. “Neoliberal Trade and Investment and the Health of Maquiladora
Workers on the U.S.-Mexico Border.” In Dying for Growth: Global Inequality
and the Health of the Poor. Edited by Jim Yong Kim et al. Monroe, ME:
Common Courage Press, 2000, 261–290.
“Em video, pai dá resposta comovente à polêmica declaração de Ronaldo ‘Fenô-
meno.’ ” Hoje em Dia June 6, 2013. Web. January 4, 2014.
“Entregan PND en Los Pinos.” Plano Deportivo December 2, 2012. Web. January
4, 2014.
 Contributors

Susan Antebi is associate professor of Spanish and director of the Latin

American Studies Program at the University of Toronto. She works in the
areas of contemporary and twentieth-century Mexican cultural production
and disability studies, and is the author of Carnal Inscriptions: Spanish Ameri-
can Narratives of Corporeal Difference and Disability (2009), and co-editor of
the volume, Digital Media, Cultural Production and Speculative Capitalism
(2011). Her current book in progress seeks to contextualize disability and
the project of disability studies as integral to reading Mexican cultural and
public health history, with emphasis on eugenic discourses of the post-
Revolutionary period.

Victoria Dickman-Burnett is a PhD student in education and community-

based action research at the University of Cincinnati. Her research interests
include theory-driven activism and writing and action research

Juan Manuel Espinosa is chair of Seminario Andrés Bello, Instituto Caro y

Cuervo, Bogotá. He focuses on Caribbean and Latin American intellectual
and cultural histories, specifically on how sense perception gets reconfigured
in these regions as they come in contact with aesthetic and epistemological
theories.

Victoria L. Garrett is teaching assistant professor of Spanish and director

of Latin American Studies at West Virginia University. She is co-author of
The Improbable Conquest: Sixteenth-Century Letters from the Río de la Plata
(2015), and she is completing a monograph on the performance of everyday
life in early twentieth-century Argentine popular theater. Her articles on
Latin American literature and cinema have appeared in Arizona Journal of
Hispanic Cultural Studies, Hispania, and Romance Quarterly.

265
266 Contributors

Nicola Gavioli is assistant professor of Portuguese at the Florida Interna-

tional University in Miami, Florida. He holds a PhD in Hispanic Languages
and Literatures with an emphasis in Portuguese and Brazilian studies from
the University of California Santa Barbara. Among his research interests:
Portuguese and Brazilian novels; ethics, human rights and literature, and
witness literature. On these topics he has published articles in academic
journals in the United States and in Brazil.

Kevin Goldstein is a doctoral candidate in comparative literature at New

York University. His research interests include the literature of the Americas,
disability studies, oral poetics and mnemonics, and cognitive approaches to
literature. His dissertation concerns the influence of late-onset blindness on
the work of several American writers, including Jorge Luis Borges, María
Josefa Mujía, and João Cabral de Melo Neto.

Emily Hind is associate professor of Spanish at the University of

Florida, Gainesville. She specializes in Mexican studies. Her publications
include: Femmenism and the Mexican Woman Intellectual from Sor Juana
to Poniatowska: Boob Lit (2010), Entrevistas con quince autoras mexicanas
(2003), and a second book of interviews titled De Abenshushan a Xoconostle
(2013) featuring Mexican writers born in the 1970s. Authors treated in
her recent articles include Sabina Berman, Bernardo Esquinca, Guadalupe
Loaeza, Fabio Morábito, Cristina Rivera Garza, Guadalupe Amor, Carlos
Fuentes, and Asunción Izquierdo Albiñana.

Beth E. Jörgensen is professor of Spanish at the University of Rochester.

Her primary research interests include the work of Mexican women writers,
the genre of the chronicle, and disability studies in Mexico. In addition to
journal articles, Jörgensen is the author of The Writing of Elena Poniatowska:
Engaging Dialogues (1994) and Documents in Crisis: Nonfiction Literatures in
20th-Century Mexico (2011), which was awarded the LASA Mexico Section
Book Prize in the Humanities for 2010–11. She is co-editor with Ignacio
Corona of The Contemporary Mexican Chronicle: Theoretical Perspectives on
the Liminal Genre (2002).

Laura Kanost is associate professor of Spanish at Kansas State University.

Her studies of constructions of gender and disability in Latin American
literature have appeared in journals such as Hispanic Review, Frontiers, and
Hispania. She is co-author with Elvira Sánchez-Blake of a forthcoming
(2015) volume on representations of madness in narratives by contemporary
Latin American women writers.
 Contributors 267

Robert McRuer is professor of English and chair of the Department of

English at George Washington University, where he teaches critical theory,
disability studies, and queer theory. He is the author of Crip Theory:
Cultural Signs of Queerness and Disability (2006), The Queer Renaissance:
Contemporary American Literature and the Reinvention of Lesbian and Gay
Identities (NYU, 1997), and Crip Times: Disability, Globalization, and
Resistance (forthcoming). He is co-editor of several volumes, including (with
Anna Mollow) Sex and Disability (2012) and (with Merri Lisa Johnson) two
special issues of the Journal of Literary and Cultural Disability Studies on the
theme of “Cripistemologies.”

Lina Meruane is a Latin American fiction writer and scholar with a PhD
from New York University. Her fiction has been awarded prestigious grants,
international prizes, and has been translated into several languages. Her
scholarly book, first published in Spanish, was translated by Palgrave Mac-
Millan as Viral Voyages, Tracing Aids in Latin America (2014). Meruane cur-
rently teaches at the Global Liberal Studies Program at New York University.

Ryan Prout is senior lecturer in Spanish at Cardiff University’s School

of Modern Languages. His publications include a monograph on Juan
Goytisolo, a co-edited volume titled Seeing in Spanish: From Don Quixote
to Daddy Yankee—22 Essays on Hispanic Visual Cultures (2011), and a
forthcoming book on neuro-diversity in Spanish film and comics. He is
a member of the advisory board for Film Matters and contributes reviews
and festival reports to Film International.

Melissa Schindler is a doctoral candidate in English at the State University

of New York, Buffalo. She has been a Peace Corps volunteer in Mozambique
and a Fulbright scholar in Brazil. Her dissertation compares literatures of
the African Diaspora in Sri Lanka, Mozambique, and Brazil.

Valéria M. Souza holds a PhD in Luso-Afro-Brazilian Studies & Theory

from the University of Massachusetts Dartmouth. She is currently a lecturer
of Portuguese at Washington University in St. Louis. She has published
scholarly articles with Routledge, Brasil/Brazil and Portuguese Literary &
Cultural Studies and is co-editor, with Victor K. Mendes, of Garrett’s Travels
Revisited. Her doctoral dissertation examines representations and the aesthet-
ics of disability in Brazilian author João Guimarães Rosa’s novel Grande
Sertão: Veredas.
 Index

Abbot, Bernice, 32 agency, 58, 64, 66, 68, 69–70, 113,

abjection, 122, 125, 126, 128–29, 122, 126, 131, 137, 146, 160, 182,
130, 196, 230, 231, 234, 238, 242 195, 196–98, 210
ableism, 10, 68, 69, 137, 138, 147n2 allegory, 103, 104, 112, 114–15, 117,
abnormality, 64, 180, 229–30, 239, 155, 215, 232, 236–37
241. See also normality alterity. See otherness
“academic neocolonialism,” 13 Alves, Miriam, 175, 182, 184, 187,
access, 4, 6, 9, 16, 21n14, 55, 63–64, 188, 189n9; “A Cega e a Negra—
73, 76, 85, 105, 108, 116, 137, Uma Fábula,” 175, 182–84
138, 141, 144, 183, 188, 209, 221, Alzheimer’s disease, 16, 22n20, 83–84,
260, 261 87, 89, 91–94, 96, 98, 263
Adler-Beléndez, Ekiwah, 16, 63–64, amnesia, 84, 93, 97
72–76, 261 Amores Perros (González Iñárritu),
“aesthetic nervousness” (Quayson), 13, 22n29
210 anagnorisis, 51, 53
affect, 2, 7, 16, 22n29, 104, 105, 107, Anders, Günther, 200–201
109, 112–13, 114–15, 116, 130, Anderson, Edward, 88
261 Angelino, María Alfonsina, 21n11
“affection image” (Tomkins), 109–10, Antebi, Susan, 16, 21n15, 68, 71,
117n2 77n11, 241–42n3, 261
affective politics, 7 Anzaldúa, Gloria, 126
African American and Africana studies, Aramayo Zamora, Manuel, 4
4, 175 Arenas, Reinaldo, 18, 39, 210, 211–
Afro-Brazilian: culture, 18, 161–62, 12, 223nn11–12; El portero, 210–
163, 165, 167, 175–77, 181–82, 16, 219–21, 222n4, 223nn11–12
185; identity, 161, 165, 177, Argentina, 5, 8, 20n6, 20n8; La
189n10; literature, 186–87, 189n10 Revolución Libertadora in, 48, 59n2
Agamben, Giorgio, 204–205, 230; bare Asperger’s syndrome (AS), 19, 22n20,
life (zoe), 230, 232, 233, 234, 236, 246–47, 248, 249–52, 255–56,
238, 239, 241; specific life (bios), 257n4; solitude and, 250, 255–56
230, 233, 234, 238, 239, 241 authenticity, 18, 83, 205

269
270 Index

authoritarianism, 13, 136, 194 49, 53, 185; darkness and, 41, 49,
authority, 30, 41, 144, 233, 238, 249 51, 175, 177, 178, 180; as gift,
authorship, 30, 56, 194 52; gnosis and, 48, 50, 51; inner
autobiography, 8, 15–16, 18, 34, vision and, 48, 52–54, 59, 186; as
49, 50, 63, 67–68, 70, 72, 77n8, instrument or tool of art (Borges),
77n10, 155, 242 29, 48, 52, 56; late-onset, 51, 55;
as mode of being, 48–49; “secret
Badianus codex (Codex de la Cruz- power” of, 15, 40, 189nn8–9;
Badiano), 16, 83, 86–87, 89, 90, “seeing” race and, 18
91, 92, 95, 96 body, 7, 9, 12, 14, 15, 16, 21n16,
Balch, Trudy, 68, 77n7 33–34, 36–39, 43, 48, 50, 51,
Barker, Clare, 13, 136, 147–48n8 55, 59, 64, 68, 69–71, 74, 75,
Bataille, Georges, 123 77n12, 84, 94, 95, 105–109, 110,
Bauman, Zygmunt, 127 111–12, 113, 114–15, 116, 121,
Beckett, Samuel, 32, 201 124, 125–28, 132, 138; as art, 122,
Bejarano, Cynthia, 127 125, 132, 159, 160, 163–64, 167,
Bell, Christopher, 22n30, 174 174, 187, 203, 210, 216, 222n3,
Bellatin, Mario, 18, 39, 230–37, 240– 229, 234, 235, 237, 238, 240–41,
41, 241–42nn2–3, 263; Biografía 248; blindness and the, 43, 174 (see
ilustrada de Mishima, 230–36, also blindness); the disabled, 12,
241–42n3 59, 139, 174, 181; the female, 126,
Berubé, Michael, 66, 219 127, 132, 263; mind and, 9, 10,
Biasin, Gian-Paolo, 45n1 84, 210, 214, 219, 234, 235, 248,
Biografía ilustrada de Mishima 260; modification, 125; race and
(Bellatin), 230–36, 241–42n3; the, 174, 176, 181, 186; reflection
headlessness in, 230, 232–34 and the, 55; spirit and, 114, 115;
biography, 32, 161, 191, 192, 230, 231 as waste, 122, 126, 132. See also
biomedicine, 16, 84, 89, 94, 95, 263 corporeality, embodiment
biopolitics, 3, 15, 16, 36 body-without-organs (BwO), 137
blackness, 18, 49, 174–78, 180–82, Bolaño, Roberto, 17, 121–22, 131–32,
184, 185–88; assuming, 177–78, 262; 2666, 17, 121–32, 133n1,
184, 186, 187, 188, 189n6; 133n4, 262
blindness and, 18, 175–76, 181, Boom (Latin American literature), 12
182, 184, 185, 186; disability and, Booth, Wayne C., 192–93
174–75, 180, 186; as metaphor, 180 border, 11, 17, 125–27, 204, 222n8,
blindness, 12, 15, 18, 22n20, 29–33, 237, 263
35–36, 38, 39–42, 44, 45n4, Borges, Jorge Luis, 15, 29, 32, 40, 44,
47–49, 50–52, 54, 55, 56–58, 59, 47–59, 59n2, 60n4, 256n2, 261;
86, 125, 156, 173–74, 175–76, dictation as writing and, 53, 58, on
177–78, 179, 180–81, 182, 184, the face in the mirror, 50, 53–55;
185–86, 189n8; blackness and, 18, “reader’s and writer’s sight,” 47, 48,
175–76, 181, 182, 184, 185, 186, 57
261; Borges and, 32, 47–49, 50–51, Boullosa, Carmen, 18, 230–31, 235–
52, 54, 55, 56–58, 59; color and, 41, 263; Cielos de la Tierra, 230,
 Index 271

231, 238, 240; El complot de los collectivity, 3, 5, 7, 13, 14–17, 19, 32,
Románticos, 230, 231, 238, 240; La 91, 97, 112, 141–42, 145, 146, 147n3,
novela perfecta, 230, 231, 236–37, 174, 180, 193, 212, 248, 260, 261
238, 240 Collins, Patricia Hill, 17
Braille, 175, 184–85 Colombia, 8, 12, 20n2, 20n8
Brazil, 8, 20n2, 20n8, 157, 161, 166, colonialism, 13–14, 104, 109, 136,
167–68, 173, 175, 176, 181, 182, 146, 147n1
188n4, 185nn5–6, 193, 194, 202, coloniality, 105, 116
206, 260, 261, 262, 263; mestiçagem coloniality of power (Quijano), 6,
(cultural and genetic mixing) in, 21n15, 104, 105
166, 176–77 community, 11, 14, 15, 56, 57, 63,
Brimmer, Gabriela, 16, 63–64, 67, 64, 72, 105, 116, 123, 125, 136,
68–70, 72, 75, 76, 77n8, 77n10, 140, 141, 145, 160–61, 192, 206,
261; Gaby Brimmer, 16, 63–64, 209, 212, 216, 217, 221n1, 237,
67–69, 71–72 (see also Poniatowska, 241n3
Elena) El complot de los Románticos (Boullosa),
Brogna, Patricia, 4–5, 21n14, 76n5 230, 231, 238, 240
Butler, Judith, 138–39, 168n2 Coronil, Fernando, 13
corporeality, 7, 16, 34, 110, 117,
Cabrera, Rafael, 20n4 124, 159, 219; collective, 16; queer,
Calasso, Roberto, 31, 45n1 110. See also body, embodiment,
Calcáneo, Karla, 64 intercorporeality
Campbell, Fiona Kumari, 210, 221 Couser, G. Thomas, 50, 66–67, 68,
capitalism, 13, 14, 17, 36, 104–105, 77n12, 200
110, 112, 113, 118n7, 122, cripping, 105, 113, 117n1
126–32, 136–38, 144, 146, 147n3, cripple, 21n18, 68, 160, 161
174, 202, 261, 262, 263 “crippled saint,” 21n18
Castro, Fidel, 212–13, 222–23n10, Cuba, 8, 18, 20n8, 209–13, 216, 218,
223n13 221, 222–23n10, 223n13; Mariel
Celan, Paul, 50, 204 Boatlift, 209, 211–12, 222n7,
cerebral palsy, 15, 16, 22n20, 63, 65, 223n11; mental health care in, 209,
67, 69, 70, 72, 73, 261 212–13, 215, 216, 220, 221n1;
charity, 1–2, 64–65 “Special Period,” 209, 216, 218,
Charlton, James, 3, 6, 20n9 223n13
Chavez Penilla, Facundo, 21n13 cultural studies, 3, 7, 15, 16, 19
Chen, Mel, 113, 118n8, 126, 131
Chile, 1–2, 3, 8, 20n2, 20n8, 35, 260; Daston, Lorraine, 248, 252, 253
Chilean “economic miracle,” 2–3 Davidson, Michael, 11, 22n22
Cielos de la Tierra (Boullosa), 230, Davis, Lennard J., 10, 19, 22n23,
231, 238, 240 2101, 229–30, 232–33, 239, 241
Cioran, Emil, 39, 43 death, 36, 39, 45n5, 58, 73, 106,
class, 8, 17, 136, 137, 141, 143, 200 111–16, 118n5, 122, 125–26, 128,
cognitive disability, 9, 10, 18, 66, 70, 129, 130, 131–32, 163, 204, 210,
76n4, 84, 156, 220, 221–22n2 219, 232, 262
272 Index

death drive, 35 cognitive disability); construction of,

debility, 4, 122, 129–30, 179 3, 8, 9, 11, 14, 18, 22n21, 66, 122,
decolonization of disability analysis, 137, 138, 256; cure and, 9, 19,
13 64, 71, 89, 93, 159, 229, 230; as
Deegan, Mary Jo, 209–10, 219 deficit, 49, 64–65, 252; defining, 9,
defect, 9, 10, 64, 86, 159, 180, 211, 15, 19, 156; as diversity, 4, 9, 10,
246 11, 19, 65, 84, 138, 229–30, 233–
Deleuze, Gilles, 104, 109, 110, 34, 238, 239, 241, 260; identity
117nn3–4, 118n8; affection image, and, 8, 10, 11, 22n22; as metaphor,
109, 117n3 14, 17, 66, 92, 93, 114, 122, 140,
dependence, 43, 74 147–48n8, 173, 174, 209, 211,
depression, 32, 34, 220, 232, 263 239; medicalization of, 84, 250;
Derrida, Jacques, 40, 41–42, 45n3, medical model of 5, 9, 11, 64, 71,
45n5, 50 72, 86; narrative function of, 11–12,
diagnosis, 11, 16, 19, 32, 33, 47, 84, 66–67, 92, 147–48n8, 216–17,
89, 91, 93, 94, 97, 192, 198, 204, 219–20, 221, 249; otherness and,
206, 215, 217–18, 229–33, 235, 14, 19, 65, 113, 216, 222n3;
236, 237–40, 246–47, 250–51, 252, “overcoming” disability, 1, 2, 11,
255, 256 57, 67, 137, 141, 184; “people-first”
Dickens, Charles, 22n24 terminology and, 20n5; performance
Dickman-Burnett, Victoria, 17, 118n7, of, 48, 124, 138, 181; as personal
262 tragedy, 1, 2; prophecy and,
difference, 59, 110, 116, 136, 137, 194–95, 204; representations of,
138, 204, 209, 232–33, 234, 238, 1–4, 8, 9, 11, 12, 13, 14, 16, 17,
239, 261–62; cognitive, 7, 66; 18, 22n21, 48, 49, 50, 63, 66–67,
corporeal, 71, 220, 241n3; disability 98, 104, 105, 108, 109, 112, 135,
as, 49, 59, 232–33, 234, 238, 239, 147–48n8, 155, 181, 192, 193–94,
262; racial, 14, 18; sexual, 128 196, 216, 221, 262–63; resistance
disabled body, 12, 59, 139, 174, 181. and, 6, 7, 8, 14, 35, 36, 141, 146;
See also body rights (see disability rights); social
disabled people, 2–3, 4–5, 6, 8, model of, 5, 9, 20n9, 48, 60n3,
9, 10, 13, 18, 20nn5–6, 21n18, 77n12, 84, 136, 186, 210, 220,
50, 64, 67, 75, 85, 110, 113, 232; studies (see disability studies)
137, 146, 147n1, 161, 193, disability rights, 1–4, 20n6, 60n3,
220; discrimination against, 2, 3, 63–65, 67, 68, 72, 76, 76n1, 76n3,
4, 7, 64, 147n2, 223n11, 232; 98, 125, 221, 221n1
institutions for, 3, 18, 20n6, 160, Disability Rights International, 20n6
192, 202, 214, 216, 221n1 disability studies, 3–15, 17–19, 20n5,
disablement, 13–14, 136, 147–48n8 21nn11–12, 21nn16–17, 22n22,
disability: activism, 1, 3, 4, 5, 6, 16, 22n30, 50, 64, 66, 69, 72, 76, 104,
20n9, 60n3, 63, 67, 70, 72, 76, 108, 110, 113, 116, 117, 122, 136,
76n1, 76n3, 130, 136, 138, 261, 138, 139, 147n2, 147–48n8, 194,
262; as advantage or gift, 15, 29, 206, 209, 219–20, 236, 242n4,
48, 52, 56, 65, 232; cognitive (see 263; in Latin America, 4, 10, 21n17
 Index 273

diversity, 4, 9, 10, 11, 19, 65, 84, film, 4, 5, 7–8, 11, 13, 16–17, 18,
138, 229–30, 233–34, 238, 239, 19, 22n29, 67, 68, 83–85, 87–89,
241, 260; sameness and, 231, 233, 90–98, 98–99n1, 99n5, 103–17,
234 118n5, 118n9, 135–36, 139–47,
Donoso, José, 12 147n4, 148n11, 148–49n14,
Droguett, Carlos, 44 149nn15–16, 149n20, 181, 189n8,
Du Bois, W.E.B., 187 191–206, 207nn4–5, 219, 235–36,
251, 256, 261, 263; documentary,
embodiment, 7, 8, 11, 15, 16, 17, 8, 18, 94, 147nn5–6, 191–206,
42, 56, 67, 74, 104–105, 116–17, 207nn4–5, 261; women and
121–22, 124–25, 130, 131–32, 138, Mexican, 90
168n2, 175, 177, 179, 186, 217, Flanagan, Bob, 124
230, 262; “complex,” 11, 16 Fleischmann, Federico, 3, 65, 76n3
Epplin, Craig, 112–13, 118nn5–6 Foucault, Michel, 22n21, 162, 169n8,
ethnobotany, 16, 83–85, 88, 90, 93, 210
94 Fraser, Benjamin, 21n17
equality, 4, 43, 85, 137, 233, 234; Freud, Sigmund, 125
racial, 4. See also inequality Freyre, Gilberto, 155, 166, 168,
Erevelles, Nirmala, 17, 22n30, 104– 168n1, 188n4
105, 136–38, 146, 174, 182, 186 fund-raising, 1–2
Espinosa, Juan Manuel, 19, 260 Furst, Peter, 90
Estamira (Prado), 18, 191–92, 194–97,
198–206 Gamboa, Federico, 12
ethical criticism, 192–93 García Márquez, Gabriel, 12, 19, 245,
ethics, 18, 36, 38, 138–39, 181, 194, 247, 249, 252, 255–56, 256n2; One
195, 197 Hundred Years of Solitude, 12, 19,
ethnicity, 10, 122, 137, 138, 141, 245–46, 249–50, 252–56
143, 144, 162 Garland-Thomson, Rosemarie, 21n18,
eugenics, 105, 194 22n21, 22n30, 70, 124, 130, 238
exclusion, 2, 63–64, 66–67, 68, 76, Garrett, Victoria L., 17, 261
105, 199, 261 Gavioli, Nicola, 18, 260
exile, 209–14, 216, 238; mental illness gaze, 30, 410, 41, 42, 70, 71, 73, 85,
and, 210–11, 216 104, 108, 109, 116, 177, 178, 184,
193
feminism, 22n30, 67, 90–91, 98, 137, gender, 4, 8, 10, 17, 22n22, 42, 84,
168n2 89, 90, 98, 105, 113, 122, 127,
femininity, 43, 85, 90, 91, 169n7 135, 136, 137, 138, 141, 143,
Ferrante, Carolina, 4–5, 20n7 144, 168n2, 174, 200, 209; gender
fiction, 8, 11, 15, 18–19, 33, 34, 38, studies, 4, 17, 222n5 (see also queer
44, 45n4, 49, 56, 121, 126, 130, studies, women’s studies)
136, 155, 193, 217, 230, 236, 241, geography/geographies, 5, 58, 64, 76,
241–42n3, 246, 248, 249, 250–51, 143, 147n3, 161–62, 166, 214,
253, 256, 263; experimental, 18, 217, 254, 261
230. See also science fiction geopolitics, 5, 14, 16, 132, 263
274 Index

Getino, Octavio, 96 imagination: facts and, 248–49,

Gilroy, Paul, 187 253; Kantian understanding of,
Gimmel, Millie, 95, 96 19, 247–50, 255, 256; Romantic
di Giovanni, Norman Thomas, 56 understanding of (fancy), 247–50,
Gligo, Agata, 37 251, 253
Global North, 4, 17, 122, 125, 126, impairment, 9, 18, 32, 48, 54, 67, 69,
131, 132 70, 72, 85, 86, 125, 156, 168n2,
Global South, 5, 6, 13, 17, 110, 122, 203, 210, 220, 229–32, 234, 235,
126, 130, 131, 132, 137 238, 239, 241n3, 251, 262, 263;
globalization, 11, 13, 15, 16, 17, 19, disability and, 48, 168n2, 210, 220,
83, 88, 91, 94, 97, 99, 110, 113, 262; visual, see blindness
126, 127–28, 130, 135, 136, 138, inclusivity, 8, 13, 18, 71, 220, 230;
261, 263 limits of, 18
Goldstein, Kevin, 15, 261 indigenous cultures, 16, 71, 83–85,
Grech, Shaun, 13, 22n27 94–97, 98n1, 114, 140–41, 143,
Grosz, Elizabeth, 234, 242n4 144, 167
Groussac, Paul, 57–58 indigenous knowledge, 86–89, 91, 95
Guattari, Félix, 110, 137 inequality, 2, 3, 4, 6, 11, 13, 17, 72,
Guimarães Rosa, João, 17, 18, 156, 114, 129, 136–37, 138, 140, 144,
168n1; Grande Sertão: Veredas, 17–18, 261; politics of, 3, 11
155–68, 169n6, 169n8, 169n10 intercorporeality, 68, 109–11, 113,
116, 261–62; disabled, 116, 261
Haddu, Miriam, 88, 99n5 interdisciplinarity, 4, 5, 6, 14, 19, 88,
Hardt, Michael, 22n29 263
Hassig, Debra, 95 intersectionality, 17, 22n30, 141
Hershfield, Joanne, 88, 99n5 invalidism, 35, 36, 38, 68, 160
Herzog, Werner, 1916, 198–99 Isaac, Jorge, 12
Hine, Robert, 55
Hind, Emily, 18–19, 263 Johnson, Harriet McBryde, 70
Homer, 45n3, 50, 56–57, 59, 169n10 Jörgensen, Beth, 16, 261
Hull, John, 55 Joyce, James, 32, 45n3, 50, 58
human rights, 1, 2, 4, 8, 15, 16, 63, Juárez-Almendros, Encarnación,
65–66, 76, 136, 193, 221n1 21n17
Judisman, Clara, 20n4
ideology, 3, 9, 10, 35, 65, 67, 69,
136, 138, 140, 141, 163, 187, 194, Kanost, Laura, 18, 222n5, 263
200, 213, 261 Kant, Immanuel, 19, 247–50, 255,
illness, 4, 12, 18, 34–39, 45n1, 64, 256
66, 77n12, 86, 97, 156, 161, 163, Kantaris, Geoffrey, 106
168n1, 169, 180, 200, 202, 204, Kleege, Georgina, 59
220, 230, 242n4; disability and, 12, Kristeva, Julia, 125–26, 128–29
66, 77n12, 156, 161, 169n9, 263; Kreutzberger, Mario, 1, 20n1
racial difference and, 18. See also Kriegel, Leonard, 174–75
mental illness Kuusisto, Stephen, 49
 Index 275

leprosy, 17–18, 22n20, 155–68, Marks, Deborah, 76n1

168nn4–5, 169n8 Mármol, José, 57
Levrero, Mario, 35 Marr, Matthew, 21n17
Lezama Lima, José, 41 Mayer Foulkes, Benjamín, 6
life writing, 15–16, 49–50, 66–68, 76, McMurray, George, 257n7
76n2, 77n12, 200, 261 McRuer, Robert, 10, 22n30, 117n1,
liminality, 18, 209–17, 219, 220, 124, 174, 179
222n8 medical model of disability, 5, 9, 11,
limping, 16, 103–107, 110, 113, 115, 64, 71, 72, 86
116–17 Meekosha, Helen, 21n12, 147n1
Linton, Simi, 21n16 memory, 30, 31, 33, 34, 44, 51, 52,
Lispector, Clarice, 40 54, 55, 56, 75, 83, 84, 85, 93, 97,
literary studies, 3, 7, 16, 19, 249; 131, 142, 145–46, 201, 253, 254;
Latin American, 3, 7, 16, 19 cultural, 84, 93, 97, 145, 148n12.
literature, 4, 5, 7, 8, 11, 12, 13, 14, See also amnesia
15, 18, 21n17, 31, 35, 36, 39, 49, mental illness, 18, 123, 161, 196, 202,
64, 66, 68, 166, 177, 181, 186, 203, 206, 209–11, 213, 215–16,
189n8, 193–94, 209, 222n3, 231, 219–21, 221–22nn2–3, 223n12,
246, 249, 252, 256, 256nn1–2, 263; exile and, 210–11, 216
263; Brazilian, 166, 176, 186; Latin Meruane, Lina, 15, 29, 261; Sangre
American, 7, 8, 12, 14, 209, 222n3, en el ojo (Seeing red), 15, 29, 30,
256n2, 263; postcolonial, 12 32–36, 39, 41, 43, 45n4
Llosa, Claudia, 17, 94, 135, 142, 148– metaphor, 2, 14, 17, 39, 43, 52, 66,
49n14, 149n15; La teta asustada, 73, 92, 93, 97, 111, 114, 122,
94, 135–36, 142–46, 148n14, 136, 140, 147–48n8, 157, 173–74,
149n15 177–78, 180, 182, 183, 184–88,
Lobato, Monteiro, 194, 206n3 195, 196, 204, 209, 211, 239;
Lomnitz, Claudio, 112, 118n6 “metaphorical opportunism,” 12
López, Ana M., 135 Mexico, 2, 3, 5, 6, 8, 20n2, 20n4,
Lucy (Lucia), Saint, 32, 42, 45n5 20n6, 20n8, 63–65, 67–69, 72, 76,
Luna, Mayra, 40 76n3, 83–89, 91, 92, 94–95, 98,
Lusotropicalism (Freyre), 155, 166, 98–99n1, 99n2, 105, 112, 113,
168 126, 129, 140, 148n9, 148n13,
Lyon, Ted, 60n4 230, 251, 259, 262; disability
studies in, 6; guerrilla period
Mace, Ronald L, 76n4 (1960s–1970s), 139–40; National
madness, 121–23, 203–204, 213, 218, Institute of Statistics, Geography,
222n5, 248 and Technology (INEGI), 85–86, 96
Magical Realism, 246, 248–49, Michalko, Rod, 11, 49
254–56, 256n2 Milton, John, 32, 45n3, 50, 53–54,
maquiladoras, 124, 126, 127–28, 263 56–57, 559
marginality, 15, 17, 18, 140, 141, minority, 7–8, 10, 202
143, 145, 146, 195, 216, 219, 221, minority identity, 7–8, 10
261 Mintz, Susannah, 67–68
276 Index

Miranda, Beatriz, 6, 21n16 pain, 9, 39, 121, 124, 126, 176, 187,
Mitchell, David, 10, 11–12, 22n29, 59, 233
66, 92, 104–105, 147–48n8, 234 Palaversich, Diana, 235, 241–42n3
mobility, 64, 69, 74, 85, 97 Palma, Clemente, 42
monstrosity, 14, 38, 43, 173 paralysis, 74, 143, 145, 156, 205,
Moraña, Mabel, 22n29 241–42n3
Moreiras, Alberto, 23n31 Pedro Páramo (Rulfo), 103, 111, 115
multitude, 7, 16, 19, 22n29 performance art, 121–24, 263
Murray, Stuart, 13, 136, 147–48n8 Peña Nieto, Enrique, 259–60, 262
Peru, 8, 20n2, 20n6, 20n8, 143,
narrative identity, 13 148–49n14, 149n16, 230; armed
“narrative prosthesis,” see prosthesis conflict in, 143
Nascimento, Elisa Larkin, 177–78 Pfeiffer, David, 21n12, 76n5
nationality, 10 Pinochet, Augusto, 2
Negri, Antonio, 22n29 placelessness, 18, 210, 217, 219
neoliberalism, 2, 3, 5, 136, 137–39, Poblete, Nicolás, 40
148n13, 230, 232, 234, 241, 261 Poniatowska, Elena, 16, 31, 68–69,
Neruda, Pablo, 73 71–72, 77n11; Gaby Brimmer 16,
neurodiversity, 9, 221n2 63–64, 67–69, 71–72
New Latin American Cinema, 112, Ponte, Antonio José, 18, 210, 216–17,
135 219; Corazón de skitalietz, 18, 210,
Nicaragua, 3, 20n8 216–21
Nietsche, Friedrich, 45n3 Porter, Katherine Anne, 38
normality (normalcy), 6, 9, 10, 11, El portero (Arenas), 210–16, 219–21,
22n21, 37, 64, 71, 74, 96, 104, 222n4, 223nn11–12
138, 147n2, 147–48n8, 179, 180, postcolonialism, 12, 13, 17, 135–36,
210, 216, 229–33, 234, 236, 238, 138, 146, 147n1, 147–48n8, 167
239, 241, 241n1, 254; diversity and, posthumanism, 137–38, 186, 235,
229–30; as verisimilitude, 229 238–39
Novaro, María, 16, 83–86, 88–98, Prado, Marco, 191–92, 193–206;
98–99n1, 99nn5–6, 263; Las buenas Estamira, 18, 192, 194–206
hierbas, 16, 83–85, 86–87, 88–98, precarity, 136, 138–39, 141
263 pre-Hispanic cultures, 84, 85, 86, 93
La novela perfecta (Boullosa), 230, 231, Price, Janet, 110, 113, 118n8
236–37, 238, 240 progress, 48, 84, 127, 230–31, 236, 237
prosthesis, 13, 15, 141; narrative, 12,
ocularcentrism, 50, 59, 174, 178, 187 66, 104
Oliver, Michael, 9, 21n11, 60n3 Prout, Ryan, 16, 263
Organization of Disabled psychoanalysis, 5, 6
Revolutionaries (Nicaragua), 3 Puar, Jasbir K., 122, 129
orixás, 181–82
otherness, 14, 17, 19, 65, 113, 135, Quayson, Ato, 11, 12–13, 22n24, 210.
140, 141, 143–44, 206, 216, See also “aesthetic nervousness”
222n3, 261 queer studies, 17
 Index 277

Quijano, Aníbal, 6, 13, 21n15, 104 schizophrenia, 22n20, 215

Schrader, Stuart, 21n13
race, 4, 8, 10, 15, 17–18, 22n22, science fiction, 189n7, 250, 251
22n30, 104–105, 122, 135, 136, self, 13, 14, 15, 19, 20n5, 50,
137–38, 140, 141, 143, 156, 161, 51, 53–54, 55, 56, 57, 63, 69,
162, 165–67, 168n1, 173–88, 88, 116, 125, 174, 187, 218,
188n2, 188n4, 189n5, 189n9, 200, 219–20, 222n3, 235, 242n4, 251,
202, 221, 238, 261; blindness and, 261; construction of the, 14, 15;
174, 180, 184, 185; disability and, representation of the, 48, 50
174, 176, 181; sight and, 176, self-mutilation, 121, 122–25, 126
177–78 sexual orientation, 10
“racial democracy,” 176, 188nn4–5 sexuality, 16, 22n30, 42, 71, 75, 136,
racial difference, 14, 18; illness and, 18 174, 179, 221, 239
racialization, 6, 13, 113, 127, 165, 66, Shakespeare, Tom, 9, 21n11
167, 261 Sherwood, Katherine, 59
rape, 127, 143–44, 149n16, 149n21 Shildrick, Margrit, 110, 113, 118n8
realism, 19, 75, 233, 241, 248–49, Siebers, Tobin, 10, 11, 16, 67–69, 75,
253, 256n1 204
rehabilitation, 1, 2, 5, 9, 20n4, 64, slavery, 105, 167, 174, 175, 178–81,
65, 72, 141, 184 188n4
Rehabilitation International, 4 Snyder, Sharon, 10, 11–12, 22n29, 59,
Reygadas, Carlos, 16–17, 103–104, 66, 92, 104–105, 147–48n8, 234
109–10, 112, 117, 117n2, 118n5; social justice, 1, 4, 72, 84, 85, 146
Japón, 16–17, 103, 105–17 social model of disability, 5, 9, 20n9,
Ricoeur, Paul, 13 48, 60n3, 77n12, 84, 136, 186,
Rieber, Diedra, 22n29 210, 220, 232
rights, 4, 5, 11, 16, 65, 72, 89. See social sciences, 4, 13
also disability rights, human rights, Society for Disability Studies, 21n16
women’s rights Solanas, Fernando, 96
Rodrigues, Nelson, 173; Anjo Negro, Souza, Valéria, 18, 261
173–74, 175 stigma, 2, 4, 8, 13, 64, 65, 85,
Rosato, Ana, 21n11 183–84, 195, 203
Rowlandson, William, 103–104, 111 Styron, William, 34
Rulfo, Juan, 103, 111, 115; Pedro subaltern, 19, 127, 140, 143, 146,
Páramo, 103, 111, 115 193, 194, 202
subjectivity, 13, 66, 69, 70, 91, 92,
Sánchez, Gustavo, 262–63 97, 210, 217, 219, 222n3; poetic
Sánchez-Prado, Ignacio, 22n29 (Borges), 50–53, 57, 58
Sánchez Robayna, Andrés, 34 suicide, 12, 34, 36, 105, 107, 108,
Sangre en el ojo (Meruane), 15, 29, 30, 114, 123, 223n13, 231–32
32–36, 39, 41, 43, 45n4 synesthesia, 182
Sapey, Bob, 60n3
Saramago, José, 45n4 telethons (teletón), 1, 20n3
Schindler, Melissa E., 18, 261 “La Teletón,” 1–2, 20n2, 20n4
278 Index

temporarily able-bodied, 76n1, 230 Vargas, Francisco, 17, 135, 139, 142,
testimonial literature (testimonio), 18, 147n5, 148n11; El violín, 135–36,
20n9, 50, 68–69, 73, 77, 192, 194, 139–42, 143–46
201–202, 204–205, 212, 214 Venezuela, 4–5, 188n3
La teta asustada (Llosa), 94, 135–36, Verdugo Alonso, Miguel Ángel, 21n11
142–46, 148n14, 149n15 Vicens, Josefina, 32
theory: Anglo-American, 7, 8; critical, violence, 6, 13, 17, 43, 88, 89, 98,
6; critical race, 17; disability studies, 109, 111, 113, 114, 121, 122, 126,
22n30, 64, 68, 69, 156; feminist, 127, 129, 132, 135–47, 149n15,
22n30; legal, 5; postcolonial, 136; 158, 174, 202, 203, 237, 259, 261,
queer, 136; social, 6 262
Third Cinema, 85, 87, 96–97 El violín (Vargas), 135–36, 139–42,
Thomas, Pam, 60n3 143–46
Titchkosky, Tanya, 11, 20n5, 186 vision, 15, 29, 32, 40, 41, 42, 45n1,
Todorov, Tzvetan, 211, 222n8 47, 50, 52, 53, 54, 58–59, 175,
Toledo, Victor Manuel, 88 178, 180, 183, 184, 186, 187, 188;
Tomkins, Cynthia, 104, 109, 110, and verbal description, 58–59
117n3, 118n11 Vite Pérez, Miguel Ángel, 4–5
Torrell, Margaret, 50 voyeurism, 1
Torres, Maruja, 40 vulnerability, 5, 138–39, 140, 143,
trauma, 13, 18, 142–46 146, 200
Tremain, Shelley, 22n21
“the tropical,” 165, 168n1 wheelchair, 70, 71, 73–75, 122, 125
tropical medicine, 155, 166, 168n1 whiteness, 167, 174, 179, 189n9
Willett, Jeffrey, 209–10, 219
Union of the Physically Impaired women’s movements, 4
Against Segregation (UPIAS), 9 women’s rights, 88
United Nations, 22n22, 147n1 women’s studies, 4
United Nations Convention on the World Health Organization, 22n22
Rights of Persons with Disabilities,
1, 3 “#YoSoy132,” 259–60
Umansky, Lauri, 77n9 Yudin, Florence, 54