This course examines the radical cultural changes that have emerged during the 30 year-old struggle for disability rights. We consider the rejection of the "medical model" of disability and the redefinition of disability as a "social construct". We trace the emergence of minority-group consciousness through the constructing of a new "disability identity" to the current flowering of disability culture. We explore expressions of the disability experience in fiction, poetry, theater and film.
She's currently active in the following grassroots disability rights
organizations: Disabled In Action of Metropolitan New York,
where she has served as Board Member, Secretary and President; American
Disabled for Attendant Programs Today (ADAPT), and Not Dead
Yet. She is also a member of the Society for Disability Studies,
an educational organization which promotes interdisciplinary research on
humanistic and social aspects of disability. She has served on numerous
boards, including the Center for Independence of the Disabled in New
York, and Teens Inc,. an
organization of teenagers with disabilities. She was Director of US
Relations for CIVIC-D (Centro Internazionale Vacanze Incontri Culturali
sulla Disabilita'), an Italian initiative for international exchanges
on disability issues and disability culture, and she is a member of the
European Network on Independent Living.
She has been teaching Italian Language and Literature for the past 25 years, and Disability Studies for the last five years.
She has published numerous articles in disability magazines and international journals and is currently writing a book on disability culture.
I am so happy you are interested in this course. That may sound like a cliche, but you can't imagine how much I mean it. You can't imagine how difficult it is to get to teach a course like this one. Disability Studies (that's what we call the field) is a "new discourse" trying very hard to make its way into the academic curriculum. Attitudinal barriers in the academic world are even more formidable than those in the "real" world. The academy is entrenched in a particular view of disability, the "biological / medical" view, and accustomed to relegating the study of disability to specialized applied fields such as heath care, special ed, rehab psychology & rehab counseling, social work - all fields that are mainly concerned with remediation, treatment, care, and cure. It is therefore extremely difficult to get the concept of "disability as a social construct" across, even to those who are themselves involved in the discourse on diversity and pluralism.
The concepts of "disability culture" and of "disability pride" are simply incomprehensible to most non-disabled people (and to many disabled ones). In fact, most people still have no idea of the "mighty revolution" wrought by the "disability rights movement." Oh, they have noticed the lifts on the buses, and might have heard of a law written just for us, but they think those changes just happened because of good old American good-heartedness. They don't know that it took nearly 30 years of struggle to get where we are today, and they have no notion of the strength that people with disabilities have developed in coming together, no inkling of the new identity we have forged for ourselves.
In this course we will look at theory, and read some scholarly articles (this is after all a college course), but mostly we will hear the voices of people with disabilities --or "Disabled people" with a capital "D" as some of us are starting to write, to express our pride in who we are. We will look closely at that "mighty revolution," behold the accomplishments of the disability rights movement, try to understand the cultural changes it has brought about. Together we will discover and explore "disability culture" in its numerous and varied expressions.
You will see that I've listed quite a few books in the reading list. But that's only a tiny percentage of what's out there. I will recommend many other books throughout the course, and will make available an extensive bibliography at the end. Students who find they are already familiar with the material we are covering, can e-mail me, or call me on the phone if they're not too "long distant," and I'll advise them on additional material available. On the other hand, students who find we are going too fast for them to absorb it all, need not panic. In an on-line course, getting left behind a little bit is not as bad as it would be in the regular classroom, where you feel lost not knowing what everyone is talking about. All lessons and discussions are kept on-line till the end of the course, so students can go back to an item, re-read it as many times as they want or download it. Because so much material has been put in electronic form and is available on the world wide web, we also do quite a bit of traveling around in cyberpace, and quite a lot of reading right on-line.
I hope you decide to take this course. If you have any doubts or questions, you can e-mail me nadinalaspina@ix.netcom.com
1. Language and Images--
Naming and Renaming - Why has the process of renaming been going on
for so long? Why hasn't a word sprung naturally from our community? How
is our minority different from other minorities?
2. Images and Stereotypes --
The poster child, the embittered cripple who hates the whole world,
the pathetic victim begging to be put out of his misery, the inspirational
overcomer beating all odds, Richard III, Captain Hook, Tiny Tim . . . How
do these images oppress us? Why do non-disabled people have such trouble
letting go of them?
3. Disability and History --
The ways of defining disability, dealing with disability, thinking
about disability are deeply rooted in history. How have we been seen, how
have we been treated in different times and places? A broad look at "Disability
through the Ages" will help us to better understand what we are really
up against today.
4. The Social Construct of Disability --
Just what do we mean when we talk of disability as a social construct?
Why does the world love the medical model? What are some recent criticisms
of the social model that have come from our own community?
5. The Mighty Revolution --
How did the movement start? Could it have happened at any other time?
What are some of the ideas that set things in motion? What's the
difference between the independent living movement and the disability rights
movement? Why wasn't 504 enough? Why was the ADA necessary?
6.The Struggle continues --
We will talk about some of the battles being fought today such as:
The fight for our dignity: Trying to put an end to the telethon (and
to the charity model).
The fight for our freedom: "Our homes not nursing homes" is ADAPT's
battle cry.
The fight for our lives: "We don't want your lethal mercy" says NotDeadYet,
the organization that opposes euthanasia and physician assisted suicide
from a disability rights perspective.
7. From Movement to Culture --
When and how did we start talking "disability culture?" Why is the
concept so incomprehensible and unacceptable to non-disabled people (and
even to some disabled people)? What are our values? Are they different
from those of the dominant culture?
8. Differences among us --
The range of differences among us is enormous. Our community is the
most diverse ever. Have we used our differences as a means of division
and separation? Possible discussions: Deaf culture vs. Disability
culture; Visible vs. invisible disabilities; Psychiatric Survivors and
People First Movements vs. Disability Rights Movement; Illness vs. Disability;
Growing up with a disability vs. Acquiring a disability later in life.
9. Disability Identity --
In spite of the indoctrination we all received to hate disability (and
therefore to hate ourselves and each other for being disabled), many of
us today are proclaiming our identities as "Disabled persons," and doing
so with great pride. How do we develop a disability identity? We'll talk
about feelings of "belonging," of "coming home," about having disabled
role models, about identifying with each other, with the group, with the
community, with disability culture.
Final Grade:
50% Participation
20% Midterm or report on additional reading
30% Research Paper
Most of the books listed in this course guide can be ordered on line from Amazon through the Celebrating Differences: Disability Culture Bookstore. Some of the books may be found at local bookstores or can be borrowed from public libraries. Students must get books listed as main texts and at least one of the books listed as additional. Excerpts essential to a course discussion will be placed on line. Students are encouraged to acquire as many books as possible, according to their interests.
REQUIRED
Main texts:
Shapiro, Joseph P. No Pity: People with Disabilities Forging a New Civil Rights Movement, Random House, 1993
Shaw, Barrett The Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of the Disability Rag. The Advocado Press, 1994
Fries, Kenny. Staring Back: The Disability Experience from the Inside Out. Penguin Putnam, 1997.
RECOMMENDED
References may be made to all of the following books; selections may be used from some.
Autobiographical
Finger, Ann. Past Due: A Story of Disability, Pregnancy and Birth. Seal Press, 1990.
Fries, Kenny. Body Remember. Dutton, 1997.
Hockenberry, John. Moving Violations: War Zones, Wheelchairs and
Declarations of
Independence. Hyperion, 1995.
Jacobson, Denise Sherer. The Question of David: A Disabled Mother's Journey through Adoption, Family, and Life. Creative Arts Book Company, 1999.
Klein, Bonnie Sherr. Slow Dance: A Story of Stroke, Love and Disability. Page Mill Press, 1998.
Kuusisto, Stephen. Planet of the Blind: A Memoir. Dial Press, 1998.
Nancy Mairs. Waist-High in the World: A Life Among the Nondisabled. Beacon Press, 1996.
Panzarino, Connie. The Me in the Mirror. Seal Press, 1994.
Stewart, Jean. The Body's Memory. St. Martin's Press, 1989. (Autobiographical Novel)
Anthologies
Wade, Cheryl Marie, ed. Range of Motion: An Anthology of Disability Poetry, Prose and Art. Squeaky Wheels Press, 1993.
Driedger, Diane and Susan Gray, eds. Imprinting our Image: An International Anthology by Women with Disabilities. Gynergy Books, 1992
Keith, Lois. What Happened to you? Writing by Disabled Women. The New Press. 1996
Saxton, Marsha and Florence Howe, eds. With Wings: An Anthology by and about Women with Disabilities. Feminist Press of the City University of New York, 1987.
Deaf Culture
Padden, Carol and Tom Humphries. Deaf in America; Voices from a Culture. Harvard University Press, 1988.
Disability Studies / Sociology
Barnes, Colin, Geof Mercer and Tom Shakespeare, eds. Exploring Disability: A Sociological Introduction. Polity Press, 1999.
Barton, Len. Disability and Society: Emerging Issues and Insights. Longman, 1996.
Davis, Lennard. The Disability Studies Reader. Routledge, 1997.
Linton, Simi. Claiming Disability: Knowledge and Identity. New York University Press, 1998
Oliver, Michael. The Politics of Disablement. St. Martin's Press, 1990.
Oliver, Michael. Understanding Disability: From Theory to Practice. St. Martin's Press, 1996.
History
Gallagher, Hugh Gregory. By Trust Betrayed. Henry Holt and Co., 1990.
Gallagher, Hugh Gregory. FDR's Splendid Deception. Vandemere Press, 1994.
Women
Fine, Michelle and Adrianne Asch. Women with Disabilities: Essays in Psychology, Culture, and Politics. Temple University Press, 1988.
Finger, Ann. Past Due: A Story of Disability, Pregnancy and Birth. Seal Press, 1990.
Morris, Jenny, ed. Encounters with Strangers: Feminism and Disability. Women's Press, 1996.
Morris, Jenny. From Prejudice to Pride. New Society Publishers, 1991
Susan Wendell. The Rejected Body: Feminist Philosophical Reflections
on Disability. Routledge, 1996.
ARTICLES may be used from the following
Magazines
Mainstream (P.O. Box 370598, San Diego, CA 92137)
Mouth (61 Brighton Street, Rochester, NY 14607)
New Mobility (P.O. Box 8987, Malibu, CA 90265)
The Ragged Edge (was The Disability Rag - Advocado Press, Box
145, Louisville, KY 40201)
Journal
The Disability Studies Quarterly (Suffolk University,
Department of Public Management, Eight Ashburton Place, Boston, MA 02108-2770)
Recommended VIDEOS
Breathing Lessons. Jessica Wu.
Vital Signs: Crip Culture Talks Back. Sharon Snyder and David Mitchell.
When Billy Broke His Head...and Other Tales of Wonder. 1995. Billy Golfus and David E. Simpson.
All three videos are available from: Mouth, Mouth, Post Office Box 558, Topeka, Kansas 66601-0558. Cost of each video $29.95.
Additional:
Here - A Poetry Performance - Cheryl Marie Wade -1992. Sliding Scale: $15-25. Available from Cheryl Marie Wade, 1613 5th Street, Berkeley CA 94710
No Apologies 1995 Sliding Scale: $15-25. Available from Wry Crips,
PO Box 21474, Oakland CA 94620
AUDIO
Johnny Crescendo, Easy Money / Choices and Rights / Pride
All three available from Mouth, Post Office Box 558, Topeka,
Kansas 66601-0558. $11 each.