Reflections on Writing and Teaching Disability Autobiography

Author(s): Georgina Kleege

Source: PMLA , Mar., 2005, Vol. 120, No. 2 (Mar., 2005), pp. 606-610
Published by: Modern Language Association

Stable URL: https://www.jstor.org/stable/25486193

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6o6 Conference on Disability Studies and the University PMLA

Couser, G. Thomas. Vulnerable Subjects: Ethics and Life United States. Census Bureau. Housing and Household
Writing. Ithaca: Cornell UP, 2004. Economic Statistics Division. "Disability Status: 2000."
Kingsley, Jason, and Mitchell Levitz. Count Us In: Growing Disability. 8 July 2004.29 Dec. 2004 <http://www.census
Up with Down Syndrome. New York: Harcourt, 1994. .gov/hhes/www/disable/disabstat2k/disabstat2ktxt
Mitchell, David T., and Sharon L. Snyder. Narrative Pros .html>.
thesis: Disability and the Dependencies of Discourse.
Wilson, Daniel J. "Covenants of Work and Grace: Themes
Ann Arbor: U of Michigan P, 2000.
Pratt, Mary Louise. Imperial Eyes: Travel Writing and of Recovery and Redemption in Polio Narratives." Lit
Transculturation. New York: Routledge, 1992. erature and Medicine 13 (1994): 22-41.

Reflections on Writing
and Teaching Disability of lived experience. But it will, I hope, raise is
sues that are central to disability activism and
Autobiography disability studies.
The class was an upper-division English
GEORGINA KLEEGE course and was cross-listed for credit in the
University of California, Berkeley
disability studies minor. The students were
mostly juniors and seniors, majoring in En
glish except for two majoring in psychology,
The standard charge activists and schol two in political science, and one in film stud
ars make against disability autobiographies ies. Two or three students were minoring in
is that they reinforce cultural stereotypes and disability studies. The texts I assigned were
hinder social change. These texts, such critics The Story of My Life, by Helen Keller; Moving
argue, perpetuate the notion that disability is Violations, by John Hockenberry; Waist-High
a personal tragedy that happens to an individ in the World, by Nancy Mairs; Past Due: A
ual rather than a set of cultural structures and Story of Disability, Pregnancy, and Birth, by
practices that affect many individuals. As a Anne Finger; Reflections: The Life and Writings
writer and reader of disability autobiography, I of a Young Blind Woman in Post-revolutionary
believe it is possible to use one's personal expe France, by Th?r?se-Ad?le Husson; The Little
riences to comment on the culture one inhabits. Locksmith, by Katherine Butler Hathaway;
I do not intend here, however, to defend or con Autobiography of a Face, by Lucy Grealy; and
demn specific authors or works or to debate the Thinking in Pictures, by Temple Grandin. I
value of these texts as a facet of a social-change chose these books because they represented a
movement. I offer instead an impressionistic range of time periods and of impairment cat
account of a course on disability autobiography egories. But, in all honesty, I chose these titles
that I taught at Berkeley recently. What stands because at the time I had to submit the reading
out in my memory of the course has to do less list that was to appear in the course listings,
with students' responses to particular texts and these were all books that I knew were readily
more with interactions among the students or available in alternative formats, specifically as
between the students and me that often seemed books on tape produced by Recordings for the
peripheral to the topic at hand. This is, then, Blind and Dyslexic and the National Library
an autobiographical essay, a series of vignettes Service for the Blind and Physically Handi
and portraits, rendered in all the randomness capped. I did this for the convenience of me

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 i 2 o . 2 Conference on Disability Studies and the University 607

and any students with print disabilities who disclosed that he had been recently diagnosed
might enroll. Berkeley, like other institutions, with a learning disability. Also, he was a recov
has a disabled-students program that produces ering alcoholic. He said he had heard that some
alternative-format texts for students who need people consider alcoholism a disability, though
them. But since I was new at the university, I he was uncertain about this. Still later, during
did not know how well the program worked. a class visit by Anne Finger, he admitted that
I wanted to be sure that students who needed he identified with her descriptions of hospital
alternative formats would be able to obtain practices because he had once undergone re
them, on their own if they chose, even before constructive surgery after having his "face re
the semester began. arranged in a barroom brawl," as he put it.
I prepared for the course with an extra Later in the first week, a student came
level of trepidation. This was my first class to my office to tell me that she had a learn
at the university. I had never taught any of ing disability and to discuss accommodation
the assigned texts or taught autobiography issues. I was impressed with her poise as she
as a genre. In addition to these typical new delivered this information. I confess I became
course jitters, I was having a hard time ob a bit misty-eyed with the recognition that the
taining the access accommodations I had disability rights movement had made a mea
requested. Despite Berkeley's history as the surable difference within even this student's
birthplace?or one of the birthplaces, any memory. It was not so long ago that someone
way?of the independent-living movement, I with her impairment would not have been ad
heard repeatedly that it had been a long time mitted to an institution such as Berkeley or that
since the university had hired a faculty mem someone with my impairment would not have
ber with a disability. The system in place was been employed as her professor. In the rapid
equipped to handle faculty and staff members fire delivery with which she brought up the
who had recently acquired disabilities but not subject, I heard an echo of my former student
those who had been disabled a long time and self, back in the dimly remembered past when
who were expert on what accommodations I had similar conversations with my professors.
were necessary. After months of phone calls, In my day, however, these conversations had
e-mail messages, and visits to various offices, a different aim. I was there to persuade them
the access I had requested was only approved that they should not dismiss me out of hand,
a couple of weeks before the semester started, that although I had a disability I could still
leaving me feeling rattled and resentful. perform up to par, and that I would not ask for
And so the semester began. On the first or expect any sort of special treatment.
day, a student used the phrase "people who suf I made a comment along these lines to
fer from disabilities." I opted not to correct or the student. She said that while she was an
challenge him because I didn't want to begin old hand at talking to her professors about
the semester flashing the badge of the language her impairment, it was easier to talk to a pro
police. I couldn't tell if any of the disabled stu fessor with a disability who was teaching a
dents in the room responded to his use of suf disability-related class, implying that in other
fer. And I sensed from his labored delivery that classes and with other professors, this conver
he was self-conscious because his professor sation was not always so comfortable.
and several of his classmates were visibly dis Perhaps things have not advanced as far
abled. He was struggling, aware that whatever as Td like to think?
term he used might be the wrong one. Other students with disabilities were not
As it turned out, he was struggling with having as smooth an experience. A student
more than language. Later in the semester, he told me that she wanted to take the class but

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6o8 Conference on Disability Studiesand the University PMLA

was having trouble enrolling, for a reason she the image of English professors as avenging
did not immediately disclose. One day when harpies, ready to eviscerate users of impre
I asked her how the process was going, she cise prose. But I was also pleased that these
burst into tears. Her enrollment problems students, even at the beginning of the course,
stemmed from the fact that she had dropped were able to identify the ableist attitude be
out of school the previous semester, because hind Shattuck's description. It allowed us to
of chronic depression. Apparently, the as talk about Keller's enduring status as an icon
sistant dean she saw refused to grant her a and to examine the extent to which she pro
medical leave, refused to discuss her situation moted this thinking in her life writing.
as a disability issue, and even refused to look Colleagues elsewhere had warned me
her in the eye. For all I know, there may have that students often find John Hockenberry's
been extenuating circumstances that the stu Moving Violations off-putting for his rather
dent did not reveal to me. She petitioned an aggressive style. My students found him at
other dean and was eventually able to enroll. first a relief from Helen Keller. But in the sec

Still, her unpleasant encounter with the bu ond class they were personally affronted by
reaucracy resonated too closely with my own his reasons for not enrolling in Berkeley in
protracted effort to obtain access for me to the early 1980s. He said that the campus was
dismiss it as a random glitch in the system. so accommodating to students with disabili
In class, we were reading Helen Keller's ties?he described it as merely "a sunny Cali
The Story of My Life as reissued by Roger fornia sanitarium" (114)?that the education
Shattuck. It is an important new edition that there must be substandard. This prompted
restores material out of print for decades, but me to ask what they knew about the history
Shattuck's introduction begins this way: of the independent-living movement on the
Berkeley campus. The disability studies mi
Helen was born a swan?fair-haired and fair nors provided a detailed account, but most
faced, without blemish or impediment, giving of the class admitted they had never heard
back as much joy to the world as she found in this history. Most students at Berkeley today
it. Then, before she learned to talk, an illness
are probably unaware of the history of the
changed her into an ugly duckling. Her ap free-speech movement as well. My difficul
pearance did not substantially change. She did
ties with obtaining accommodations and my
not become ugly. She became totally deaf and
student s dealings with the dean she perceived
blind. That was enough to turn the swan into
an uncontrollable creature who lost her world, as unreceptive made the discussion of the
her home, and her family to inner silence and
independent-living movement a bit hard to
darkness. Several years later another creature, take. On the one hand, I was pleased to think
this one half-blind, turned the ugly duckling that students might draw some college pride
back into a swan by holding her hand and from this history. On the other hand, I was
teaching her a secret finger language. (ix) all too aware of the risk that pride can turn to
complacency and inaction.
Some students were appalled. "He calls them At the end of our second class discuss
creatures," one said. "Sign language is not a ing Nancy Mairs's collection of essays Waist
secret," another pointed out. A third student, High in the World, a student announced that
who referred to herself as the consummate he found Mairs to be nothing but a whiner.
English major, complained that "first he says He was a student with a disability who had
one thing, then another. If you wrote some sought special permission to take the class
thing like that in an English class, the pro because he was enrolled in another institu
fessor would be all over you." I always enjoy tion. He had, however, only been to class

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 i 2 o . 2 Conference on Disability Studies and the University 609

twice. After he made his remark, the rest of say, John Hockenberry. This launched a lively
the class was utterly silent. I suspect they discussion of social behavior and the extent to
looked shocked, but I could not tell. When which it is innate or learned. A student who
he came to class, he tended to interrupt and had never spoken in class before said that
challenge anyone who spoke, and he often Grandin made her think about how many so
patronized the other disabled students in cial practices are founded on a notion of so
ways that offended everyone. He was hostile called normal personality traits. Some weeks
toward every text we read, particularly Lucy earlier, during a conference about her paper,
Grealy's Autobiography of a Face, an account this student had described herself as patho
of childhood cancer and facial disfigurement logically shy and tentatively suggested that
that paralleled his life story. As I learned later, being so put her at a disadvantage in a course
he was writing his own autobiography. The such as mine, where class participation was
other students perceived him as an outsider evaluated for part of the grade. Her comment
and griped about him when he wasn't there, in class reminded me of this conversation and
though, as one admitted, discussions were al also of the student with the disruptive person
ways rowdier when he was present. ality who had called Nancy Mairs a whiner.
In the next class, three students did a de Two themes recur in all these anecdotes.
tailed and minute analysis of some of Mairs's The first has to do with access. Throughout
arguments. In one case, they took her to task the semester, I was struck again and again
for what they thought was a dismissive atti by the constant ebb and flow of this social
tude about people with learning disabilities. change movement. On the one hand, here I
Another criticized her for disparaging the was teaching a course in disability autobiog
idea that many people with disabilities would raphy at a major research university. On the
not seek a cure, because they perceived their other hand, issues of access, my own and my
impairments as integral to their identities. I students', kept cropping up. Access needs to
sensed that even in their criticism of Mairs be at the forefront of our consciousness and
they were defending her against the blanket our conversation as disability scholars and
charge that she was nothing but a whiner. advocates. It needs to be on our minds in the
They were asserting that she engaged them way we compose a reading list, the way we
intellectually and emotionally, even though conduct our classes, the way we evaluate our
they could not agree with everything she students. Although being disability studies
wrote. They admired her, not for overcoming scholars does not make us access specialists,
but for articulating complex issues that were I believe we cannot cede responsibility for ac
important in their own lives. cess to specialists or accept without question
In many ways, the most challenging text others' prescriptions about who needs access
we read was Temple Grandin's Thinking in and what kinds of access are appropriate.
Pictures. She is a person with autism who The other theme that emerges from these
earned a PhD in animal science and works reflections has to do with disability iden
as a college professor and a designer of hu tity. Anyone who teaches literature is accus
mane slaughterhouses. One student admitted tomed to the ways students tend to identify
that she did not find the author very likable with people they read about. This may be
since Grandin was always talking about her especially true when we teach autobiogra
self and boasting of her accomplishments. I phy, where the development of the author's
pointed out that it was perhaps in the nature identity is often central to the text. In this
of autobiographers to talk about themselves class, the texts we read and the interactions
and asked if Grandin was less likable than, we had in the classroom seemed to prompt

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6io Conference on Disability Studies and the University PMLA

some students to contemplate or to embrace a autobiographies, to be read and discussed by

disability identity for the first time. For these the next generation.
students, identification emerged from a new
scrutiny of the world around them, includ
ing the built environment and academic and
social practices. In the disability community Works Cited
and the culture at large, people hotly debate
Finger, Anne. Past Due: A Story of Disability, Pregnancy,
the definition of disability. Are such condi and Birth. Seattle: Seal, 1990.
tions as shyness, addiction, and depression Grandin, Temple. Thinking in Pictures and Other Reports
legitimate disabilities? This debate can fuel from My Life with Autism. Fwd. Oliver Sacks. New
a reactionary backlash in which it is argued York: Vintage, 1996.

that since everyone has a trait that can be per Grealy, Lucy. Autobiography of a Face. Afterword by Ann
Patchett. New York: Perennial, 2003.
ceived as a disability in certain contexts, we
Hathaway, Katherine Butler. The Little Locksmith: A
are all disabled, and therefore no measures to Memoir. Fwd. Alix Kates Shulman. Afterword by
accommodate anyone need to be taken. Over Nancy Mairs. New York: Feminist, 2000.
their lifetimes, our students will witness an Hockenberry, John. Moving Violations: War Zones,
Wheelchairs, and Declarations of Independence. New
evolution in this debate that I can only begin
York: Hyperion, 1995.
to imagine. The ways that they identify these Husson, Th?r?se-Ad?le. Reflections: The Life and Writings
issues as relevant, even central, to their own of a Young Blind Woman in Post-revolutionary France.
lives or the lives of their peers will press the Trans. Catherine J. Kudlick and Zina Weygand. New
York: New York UP, 2001.
debate beyond the reductive binary of dis
Keller, Helen. The Story of My Life. Ed. Roger Shattuck,
abled versus nondisabled and continue to ex
with Dorothy Herrmann. New York: Norton, 2003.
ert pressure on the barriers to inclusion. And Mairs, Nancy. Waist-High in the World: A Life among the
some of them will, I hope, write their own Nondisabled. Boston: Beacon, 1996.

Writing Disabled Lives: Beyond

the Singular
rice or half a dozen boxes of tissues shrink

ANNE FINGER wrapped together. My cart was loaded down

Oakland, CA with industrial quantities of toilet paper and
breakfast cereal and canned tuna.
One of the neighborhood kids who hang
around the doors asked me if I wanted help.
I AM GOING TO BEGIN THIS TALK WITH TWO
Instead of my usual "No, thanks. I'm OK," I
stories drawn from my life experience. let him help me, partly because I was beat but
also because I was doing him a good turn as
The first one occurred a number of years
ago, when I was still living in Detroit much
and as he was doing me one.
walking around supermarkets. I had just "What happened to your leg?" he asked
limped out of Warehouse Club, a discountme as he was loading the groceries into the
trunk of my Volvo.
supermarket where cartons are razored open
to reveal their contents: ten-pound sacks of "I had polio," I said.

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