Spirituality and Intellectual Disability International

Perspectives on the Effect of Culture and Religion on Healing

Body, Mind, and Soul 1st Edition

Visit the link below to download the full version of this book:

https://medidownload.com/product/spirituality-and-intellectual-disability-intern
ational-perspectives-on-the-effect-of-culture-and-religion-on-healing-body-mind-
and-soul-1st-edition/

Click Download Now

 Contents
Foreword
Preface

I. Healing Mind, Body, and Soul: Theoretical Foundations for

Understandings of Spiritual Health for Persons with Intellectual
Disabilities
Recognition of Spirituality in Health Care: Personal and
Universal Implications
David L. Coulter, MD
Authenticity in Community: Theory and Practice of an Inclusive
Anthropology in Care for Persons with Intellectual Disabilities
Herman P. Meininger, PhD
Defining and Assessing Spirituality and Spiritual Supports: A
Rationale for Inclusion in Theory and Practice
William C. Gaventa, Jr., MDiv

II. Spirituality and Intellectual Disability around the World: Cultural

and Religious Perspectives on Healing Mind, Body, and Soul
Judaism and the Person with Intellectual Disability
Joav Merrick
Yehuda Gabbay
Hefziba Lifshitz, PhD
Islam and the Person with Intellectual Disability
Mohammed Morad, MD
Yusuf Nasri, MD
Joav Merrick, MD, DMSc
 Disabled Women in Islam: Middle Eastern Perspective
Majid Turmusani, PhD
Cultural/Spiritual Attributions as Independent Variables in the
Development of Identity and Potential for Persons of
Exceptionality: A Case Study of North American Christianity and
Native American Religious Influence
Candace Cole-McCrea, MA, PhD
Open Wide the Doors to Christ: Persons with Intellectual
Disabilities and the Roman Catholic Church
Kathy J. Smalley

III. Bringing Science into Spirituality.: Research and Practice

Spiritual Health and Persons with Intellectual Disability: A
Review
Joav Merrick, MD, DMSc
Mohammed Morad, MD
Udi Levy, MA
Teaching Jewish Mentally-Retarded Youngsters Holiday
Awareness Through Symbols
Varda Carmeli
Eli Carmeli

IV. From Theory and Theology to Practice: Creative Ways of

Facilitating Spiritual Health
Liturgical Celebration with People with a Severe Mental
Disability: Giving the Gospel Hands and Feet
Anja Vogelzang, Drs
The Benefits of Jewish Mourning Rituals for the Grieving
Individual with Intellectual Disabilities
 Shlomo Kessel, MA
Joav Merrick, MD, DMSc
Bridge Ministries for Disability Concerns: A Community Ministry
Model
Mary Galvin, MTS

Index
 About The Editors
William C. Gaventa, Jr., MDiv, is Coordinator of Community and
Congregational Supports at the Elizabeth M. Boggs Center of
Developmental Disabilities, the University Affiliated Program of New
Jersey. He also coordinates a training and technical assistance team for the
New Jersey Self Determination Initiative, which now supports more than
125 individuals and their families. Mr. Gaventa also served as Coordinator
of Family Support for the Georgia Developmental Disabilities Council,
Chaplain and Coordinator of Religious Services for the Monroe
Developmental Center, and Executive Secretary for the Religion Division
of the AAMR since 1985. He completed a term on the Board of Directors of
the AAMR, and serves on the Board of the National Federation of Interfaith
Volunteer Caregivers. He is co-editor of The Theological Voice of Wolf
Wolfensberger (Haworth).
David L. Coulter, MD, is a member of the faculty of the Departments of
Neurology and Social Medicine at Harvard Medical School and is affiliated
with the Institute for Community Inclusion at Children's Hospital Boston.
During a fellowship in ethics at Harvard Medical School, he worked to
develop a broad-based spiritual basis for bioethics. When he was at the
Boston Medical Center, Dr. Coulter founded a group that explored the role
of spirituality in pediatrics. His research focuses on issues faced by children
with disabilities and their families who belong to various cultures. Dr.
Coulter is active in the American Association on Mental Retardation and the
Greater Boston Arc, and has been a consultant to the Massachusetts
Department of Mental Retardation. He is co-editor of The Theological Voice
of Wolf Wolfensberger (Haworth).
 Foreword
The history of the place of people with an intellectual disability in society
has been characterised by a consistent denial of their “personhood” or
“humaness.” Even in the enlightened times of post modernism an intact
intellect or mind is still the metric by which society judges the value of a
person.
In many ways science has contributed to this phenomenon. Spectacular
discoveries emerging from the human genome project have emphasized
society's quest for the “perfect” child, born without imperfection of mind or
body. Science is also breaking new barriers in the prevention or
amelioration of disease leading to life expectancies earlier generations
could only dream of.
In the field of scientific inquiry into the causes and “treatment” of
intellectual disabilities we have made enormous advances in the last half of
the century that have benefited people with disabilities and their families,
especially in the western, industrialized world.
We have also been fortunate in having a parallel set of forces that have
more philosophical foundations. Civil and human rights movements have
assisted the emancipation of our brothers and sisters with a variety of
disabilities.
However, there has been an uneasy relationship in this field between
those who pursue a “scientific” approach and those who choose to
emphasize the human rights approach. At the international level we have
two organizations working to improve the quality of life of people with
intellectual disabilities that symbolize the artificial divide between these
two approaches. One is the International Association for the Scientific
Study of Intellectual Disabilities (IASSID) and the other is the parent-based
body, Inclusion International.
During my presidency of IASSID I have striven to achieve two goals.
One has been a greater collaboration between scientists who approach the
question of “what is truth” from a variety of methodological and
epistemological perspectives. This alone is a daunting task! The other goal
has been to draw together the scientists and the very people they study into
a stronger partnership.
The hallmark of science it is claimed, is its objectivity, but we have
neglected over the years the very ingredient that identifies us as human
beings-that is our subjective experiences, including our spirituality.
It was therefore a great joy to me personally, and I believe to the benefit
of the 2000 Congress of IASSID, that we for the first time had dedicated
sessions devoted to exploring this essential dimension of quality of life. It
was even more gratifying that the organisers of this stream were able to
include presentations from a variety of faiths.
I am hopeful that this initiative will blossom into a more permanent
component of the work of IASSID through the formation of a Special
Interest Research group. The exploration of the relationships between
spiritual, physical and mental health will enrich our field. Hence this
collection of papers for the Congress is a veritable harbinger for the
continued growth of the Association.
Trevor R. Parmenter, PhD
President, IASSID
1996–2000

[Haworth co-indexing entry note]: “Foreword.” Parmenter, Trevor R.

Co-published simultaneously in Journal of Religion, Disability &
Health (The Haworth Pastoral Press, an imprint of The Haworth Press,
Inc.) Vol. 5, No. 2/3, 2001, pp. xix–xx; and: Spirituality and
Intellectual Disability: International Perspectives on the Effect of
Culture and Religion on Healing Body, Mind, and Soul (eds: William
C. Gaventa, Jr. and David L. Coulter) The Haworth Pastoral Press, an
imprint of The Haworth Press, Inc., 2001, pp. xiii–xiv. Single or
multiple copies of this article are available for a fee from The Haworth
Document Delivery Service [1-800-342–9678, 9:00 a.m. – 5:00 p.m.
(EST). E-mail address: [email protected]].
 Preface
SPIRITUAL HEALTH AND PEOPLE WITH INTELLECTUAL
DISABILITIES: INTERNATIONAL PERSPECTIVES AND
INVITATIONS
In this volume, (co-published as a special double issue of Journal of
Religion, Disability & Health), we are delighted to present a collection of
articles on spirituality, religion, and people with intellectual disabilities
which came from presentations at the 2000 Conference of the International
Association for the Scientific Study of Intellectual Disabilities. These
sessions were part of a first for the IASSID, an organized strand of sessions
and papers focusing on the importance of spirituality and religion in
supports and services for people with intellectual disabilities. Because this
was a “first” for many of the presenters at an Association whose name
focuses on the word “science” rather than “spirit,” there was not a little
uncertainty about how the topic and strand would be received. We should
not have been worried. The welcome and hospitality was wonderful, as was
the attendance at many of the sessions. Many said, “It is about time this was
discussed.”
Our goal for this strand was to have a series of international voices that
could represent practitioners and researchers from major faith traditions and
different parts of the world. The IASSID has done major position papers on
aspects of physical health and psychological health for people with
intellectual disabilities. Thus our organizing principle became the concept
of “spiritual health,” a framework for bridging the worlds of “science” and
“faith,” and exploring the ways that a variety of faith traditions, cultural
backgrounds, and professional roles might help us move towards a
consensus about what “spiritual health” means within specific cultures and
faiths and across disciplines.
We wanted papers that addressed the following issues:

1. How might “spiritual health” be defined from within a particular

tradition and/or religious perspective?
2. What are traditions or themes from within those traditions that
particularly relate to, or focus upon, persons with intellectual
disabilities?
3. What are resources from within those traditions that can be drawn
upon to enhance the lives of persons with intellectual disabilities and
their families?
4. Outline and/or summarize creative initiatives (including practices,
policies, and research) in parts of the world that draw upon those
traditions to support people with intellectual disabilities and which
attempt to integrate spiritual perspectives in human services and
supports.

Our open invitation led to a series of papers that organized themselves into
sessions on varied cultural and religious perspectives, theoretical
perspectives, research, and creative models of ministry and practice. Some
had been submitted to the conference without knowing about the Spiritual
Health strand. A couple are from people who wanted to be present, but
could not. We are very grateful to the authors, and to many who spent their
own funds to come to Seattle. Some did much more. Chaplain Anja
Vogelzang from the Netherlands produced a video of their model of
worship for and with people with multiple disabilities as an accompaniment
to her paper. We can't include it in this publication, but she has graciously
made it available for order.
 The international nature of the conference was underscored by the varied
familiarity with English (the official language of the conference) expressed
by the many speakers and participants. Some were quite fluent and others
struggled to express themselves clearly. The universal language of
spirituality and disability was heard through voices that reflected their
country and culture of origin. The richness of this dialogue is preserved in
the papers published here. As Editors, we have chosen to edit lightly in
order to allow the reader to experience some of the atmosphere of the
conference that brought together people from all over the world.
This volume of edited papers from the conference is simply a first step in
addressing those questions and issues. There are so many voices that were
not part of this first strand. We did not receive papers about Eastern or
African religions, we would welcome those voices on this Journal. We
know there are many more models of creative research and practice around
the world. The door and the dialogue are open. Here are some ways you can
participate:
HELP FORMA SPECIAL INTEREST RESEARCH GROUP WITH
IASSID
Become a founding member of the Special Interest Research Group of
the IASSID that will become a network for dialogue and planning of future
initiatives within this international association. You can represent any
discipline or faith background. We need ten members of the IASSID to
begin an official SIRG. The next conference is in Montpe-lier, France, in
2004. Membership in the IASSID is $75.00 per year, which includes a
subscription to their Journal of Intellectual Disability Research ($50
without the journal.) Join by sending a check or money order made out
“IASSID” to IASSID Membership Office, 31 Nottingham Way South,
Clifton Park, NY 12065–1713.
 If you want to be a member of the Special Interest Research Group on
Spiritual Health, email that interest to Bill Gaventa,
[email protected],and indicate when you have joined the IASSID.
JOIN AN INTERNA TIONAL LISTSERV ON SPIRITUALITY AND
DISABILITY
Join an international listserv on Spirituality and Disability. Dr. John
Swinton, at the University of Aberdeen in Scotland, is the founder of this
listserv. It is a way of sharing ideas, resources and dialogue. To join the list
serv, go to http://<www.jiscmail.ac.uk/lists/disability-and-spitrit-
uality.html>.
BECOME A REPRESENTATIVE FOR THIS JOURNAL WITHIN
YOUR COUNTRY
As co-editors of the Journal of Religion, Disability, & Health, we are
always looking for people who can represent our publication within their
own country, and serve through our Editorial Advisory Board. Those
representatives help recruit and review papers, encourage subscriptions and
develop awareness about JRDH. If you are interested, contact either Dr.
David Coulter or Rev. Bill Gaventa.
Finally, we welcome your contribution of writing from your own
research and practice. The questions which we posed on “spiritual health”
are fully in line with the Vision statement we have for this Journal. They
need much more careful exploration. They need “Guest Editors” who might
take on a topic or question and organize an issue of the journal.
In Seattle, we were extremely grateful for those who responded to our
invitation, and gratified by hospitality we received. As writer, speaker, and
educator Parker Palmer points out, in the understandings of hospitality to
the stranger within the major faith traditions, the gift is not really to the
stranger, but to the host. As the hosts, thank you. We are now delighted to
share with others the refined editions from our feast in Seattle, something
much more than the “left-overs.” We hope it whets your appetite for more.
Bill Gaventa, MDiv
David Coulter, MD

[Haworth co-indexing entry note]: “Preface.” Parmenter, Trevor R. Co-

published simultaneously in Journal of Religion, Disability & Health
(The Haworth Pastoral Press, an imprint of The Haworth Press, Inc.)
Vol. 5, No. 2/3, 2001, pp. xxi–xxiv; and: Spirituality and Intellectual
Disability: International Perspectives on the Effect of Culture and
Religion on Healing Body, Mind, and Soul (eds: William C. Gaventa,
Jr. and David L. Coulter) The Haworth Pastoral Press, an imprint of
The Haworth Press, Inc., 2001, pp. xv–xviii. Single or multiple copies
of this article are available for a fee from The Haworth Document
Delivery Service [1-800-342–9678, 9:00 a.m. – 5:00 p.m. (EST). E-
mail address: [email protected]].
 I. Healing Mind, Body, and Soul:
Theoretical Foundations for
Understandings of Spiritual Health for
Persons with Intellectual Disabilities
Recognition of Spirituality in Health Care:
Personal and Universal Implications
David L. Coulter, MD
DOI: 10.4324/9781315808963-1
SUMMARY. Spirituality may be difficult to recognize among persons with
significant intellectual and physical disabilities, yet it is present even when
disability is so severe that consciousness is limited or absent. A clinical
method is presented, based on the author's experience as a physician, that
facilitates sharing of spirituality between caregivers and persons with
disabilities. Caregivers must first accept their own spirituality and then seek
to discover the spiritual essence of another person. Doing so provides
insight into that which all persons have in common and leads (sometimes)
to a religious experience of the ground of all spirituality. The method has
universal implications across levels of ability and disability, across cultures
and world religions, and across value systems involving science, human
service and politics. [Article copies available for a fee from The Haworth
Document Delivery Service: 1–800–342–9678. E-mail address:
<[email protected]> Website:
<http://www.HaworthPress.com> © 2001 by The Haworth Press, Inc. All
rights reserved.]
David L. Coulter is a member of the faculty with the Departments of
Neurology, and Social Medicine, Harvard Medical School, Institute for
Community Inclusion, Children's Hospital Boston, Boston, Massachusetts.

Keywords Spirituality, caregiver, significant disability, clinical

method, physician
 Spirituality
Spirituality is an intensely personal and individual belief system usually not
discoverable through reason alone. Spirituality can be expressed through
statements of faith about the nature of one's identity, the impact of one's
culture (including ethnicity, religious beliefs and healing practices), one's
relationships of love and one's sense of meaning and purpose in life. It is
easier to describe than define. We can recognize it in many diverse ways
without ever really grasping “it” as an entity. Perhaps this is because
spirituality is the essence of our subjective selfhood and thus resists
objectification through definition. As subjective essence, it also cannot be
partitioned or measured in relative terms. Thus we cannot say that a
person's spirituality is less because he cannot express a sense of identity or
purpose in life, because for him spirituality may consist in giving and
receiving love or being part of a caring community.
Similarly, spirituality is not lessened because conscious expression is
lessened (as for example following a severe brain injury). Consciousness
may be a property of the brain, but spirituality is a property of the whole
person (the subjective essence of being). This suggests that consciousness
may not be required for spiritual personhood and spiritual essence or being
could be present in a person who is no longer conscious. Spirituality does
not disappear when we are asleep for the night, and I would argue that it
also does not disappear just because a person will never wake up. Perhaps
spiritual consciousness can be considered a mediation between the finitude
of this world and the infinite aspect of being that transcends this world
(Sulmasy, 1997). The absence of consciousness might then relieve the
person from having to deal with the finite reality of the world and allow the
person to exist solely in contemplation of the infinite. This is a fairly radical
notion. If it is accepted, it leads to the conclusion that spirituality is present
in every human being including those who are permanently unconscious or
(neurologically speaking) in a persistent vegetative state.
Spirituality is different from a theory of mind in which one is able to
represent oneself as different from someone else (an ability which is said to
be lacking in some persons with intellectual disabilities) because spirituality
comes from a deeper sense of awareness of one's self. Spirituality may be
the awareness (conscious or not) upon which intelligence works to build a
theory of mind. Howard Gardner, the author of the theory of multiple
intelligences, considers and rejects the idea that spirituality is a type of
intelligence (Gardner, 1999). Gardner's theory allows us to consider that
persons with intellectual disabilities may have difficulty with certain types
of intelligence, usually with what he calls linguistic, logico-mathematical
and intrapersonal (theory of mind) intelligence. They may not have
difficulty with other types of intelligence, such as musical, spatial, bodily-
kinesthetic or interpersonal intelligence, however. If spirituality is not a
kind of intelligence, then it is not linked to what is usually measured as IQ
and can be richly present in persons with intellectual disabilities. Thus
Gardner's theory validates what is common knowledge to all who minister
with such persons.
With this understanding of spirituality, we might ask whether it is
appropriate to do a “scientific study” of spirituality. The objective purposes
and methods of science do not seem well suited to the study of spirituality.
Yet we can study the objective correlates of spirituality with health or
behavior, for example. We must avoid superficial correlations that seek to
identify these objective correlates with the true subjective essence of
spirituality, however. Perhaps it would be fair to say that scientific study of
spirituality is acceptable as long as we also seek to understand spirituality in
nonscientific terms.