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Editorial: What is Disability Culture?
I cannot begin to count the number of times I've been asked this question in the past decade or so. Some people desired a one-sentence response, others a one-paragraph answer and still others just wanted to argue about or mull over the idea. In the past five years or so, there have been hundreds of documents discussing disability culture being distributed. Don't believe me? Well, for the first time in a year or so I just did a couple of searches. Entering the keywords, "disability culture," Yahoo returned 2020 web page matches; Google 2600 matches; and Alta Vista delivered 1272 matches.
Why such interest in the idea of a disability culture. From the international perspective the word "disability" has different connotations to diverse cultures, just as the word "culture" does. The definition of disability that may have become the most known is that of someone who has a major life impairment preventing them from participating easily in a major activity, such as walking, seeing, hearing, thinking. But that definition is one of only dozens in the United States alone. Worldwide there may be hundreds, if not thousands of definitions of disability and I would venture the same applies to the idea of culture. Any word that has such historical and contemporaneous significance will create controversy and interest. Put two such words together and the interest is magnified. This is what's happened with disability culture.
To return to a definition, here's my one paragraph definition, the shortest I can come up with, published in a 1996 issue of MAINSTREAM magazine that I still use:
People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives and our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities.
Those of us working the field of disability culture probably all agree on several basic points. First, disability culture is not the same as how different cultures treat different disabilities. Instead disability culture is a set of artifacts, beliefs, expressions created by disabled people ourselves to describe our own life experiences. It is not primarily how we are treated, but what we have created. Second, we recognize that disability culture is not the only culture most of us belong to. We are also members of different nationalities, religions, colors, professional groups, and so on. Disability culture is no more exclusive than any other cultural tag. Third, no matter what the disability or location of the person with the disability we have all encountered oppression because of our disabilities. Fourth, disability culture in the southwest of the U.S. may be very different than in the northeast U.S. or Europe or Africa, but all of us have the similarities described in the first three points. Finally, we who have worked, researched, studied and written about disability culture have most often begun in the arena of cross-disability culture, meaning all disabilities and cultures. We're aware they're may be nuances, or even larger differences between some of us, but we've had to start somewhere. If we consider all the possibilities of all disabilities and all cultures it's probably more accurate to say that there are "cultures of disabilities."
Why is any of this important? I believe there are two significant factors. First, how will we or anyone else know how to relate to us if none of us are aware of our cultural background. For example, most disabilities come with some sort of pain and/or fatigue. How will mainstream society ever be able to incorporate us into itself if neither we nor it recognize pain and/or fatigue as part of who we are. Secondly, and maybe even more importantly, for years we have discussed integration like it was our business to fit in with mainstream society. As we become more aware of our own unique gifts some of us have also become more convinced that this is a backwards perspective. It is absolutely not our job it fit into mainstream society. Rather it is our destiny to demonstrate to mainstream society that it is to their benefit to figure out that we come attached to our wheelchairs; our ventilators; our canes; our hearing aids; etc. and to receive the benefit of our knowledge and experience mainstream society needs to figure not how we fit in, but how we can be of benefit exactly the way we are.
That's disability culture, at least from one person's perspective.
Steven E. Brown, Ph.D.
Co-Founder, Institute on Disability Culture
New in the Library: Articles About Disability Culture
Finkelstein, Vic, "Disabled People and our Culture Development." DAIL (DISABILITY ART IN LONDON) MAGAZINE ANTHOLOGY: THE FIRST FIVE YEARS (London: DAIL Magazine, 1992), 3-6. http://www.independentliving.org/docs3/finkelstein87a.pdf
Finkelstein, exiled from South Africa in 1968, journeyed to England where he became a psychologist, retired tutor in Disability Studies at the Open University, UK and Visiting Senior Research Fellow, Centre for Disability Studies, Leeds University, opened the 1987 London Disability Arts Forum with a brief speech on why disability culture is a crucial component of the disability rights movement.
Finkelstein, Vic, A PERSONAL JOURNEY INTO DISABILITY POLITICS, First presented at Leeds University Centre for Disability Studies, 7th February 2001. http://www.independentliving.org/docs3/finkelstein01a.pdf
Finkelstein, exiled from South Africa in 1968, journeyed to England where he became a psychologist, retired tutor in Disability Studies at the Open University, UK and Visiting Senior Research Fellow, Centre for Disability Studies, Leeds University, reviews the development of radical British disability organizations and his own personal history in their evolution and in that of his own thinking.
Gill, Carol J., "A Psychological View of Disability Culture," DISABILITY STUDIES QUARTERLY 15 (4), (Fall 1995), 16-19. http://www.independentliving.org/docs3/gill1995.html
Gill, Assistant Professor of Human Development and Director of the Chicago Center for Disability Research, University of Illinois, and foremost proponent of disability culture in the 1980s provides an excellent perspective of why the need for a culture, what it is, and what it means for those of us who feel the need to be categorized in it.
Longmore, Paul K., "The Second Phase: From Disability Rights to Disability Culture," DISABILITY RAG & RESOURCE, 16 (5), (Sept./Oct. 1995), 4-11. http://www.independentliving.org/docs3/longm95.html
Longmore, Professor of History and Director of the Institute on Disability, San Francisco State University, described how the American disability rights movement moved in the mid-1990s from a focus on rights to a quest for collective identity.
Morrison, Elspeth and Vic Finkelstein. 1993. Broken Arts And Cultural Repair: The Role Of Culture In The Empowerment Of Disabled People, First published in Swain, J., Finkelstein, V., French, S., and Oliver, M., DISABLING BARRIERS - ENABLING ENVIRONMENTS, (London, Sage Publications, in association with the Open University, 1993). http://www.independentliving.org/docs3/finkelstein93a.html
Morrison, former editor of Disability Arts in London magazine, freelance writer and theatre director, and author of the Independent Theatre Council's book on Theatre Practice and Disability and Finkelstein, exiled from South Africa in 1968, journeyed to England where he became a psychologist, retired tutor in Disability Studies at the Open University, UK and Visiting Senior Research Fellow, Centre for Disability Studies, Leeds University, discuss how human beings come together in groups to confirm their identity and how disability arts and culture enable people with disabilities find their way in mainstream culture.
Oliver, Michael J. 1999. "Capitalism, disability and ideology: A materialist critique of the Normalization principle." First published in Flynn, Robert J. and Raymond A. Lemay, A QUARTER-CENTURY OF NORMALIZATION AND SOCIAL ROLE VALORIZATION: EVOLUTION AND IMPACT, Ottawa: University of Ottawa Press, 1999). http://www.independentliving.org/docs3/oliver99.pdf
Oliver, Professor of Disability Studies, University of Greenwich, London, England, and well-known disability rights advocate, sociologist, and author of many titles, including UNDERSTANDING DISABILITY: FROM THEORY TO PRACTICE, argues that the oppression that disabled people face is rooted in the economic and social structures of capitalism and that materialist social theory offers disabled people the opportunity to transform their own lives and in so doing to transform the society in which they live into one in which all roles are valued.
Pfeiffer, David, "The Disability Movement and its History. First published as "Hip Crip 101," MAINSTREAM: MAGAZINE OF THE ABLE-DISABLED, 19, 4 (Dec-Jan 1994-95), 32-37. http://www.independentliving.org/docs3/pfeiffer95.html
Pfeiffer, Center on Disability Studies, University of Hawaii, past president of the Society for Disability Studies, present editor of Disability Studies Quarterly and an early leader of the U.S. disability rights movement while a full time faculty member at Suffolk University in Boston, explores the history of the American disability rights movements through what he considers some of its most classic texts.
Creating a Disability Mythology. INTERNATIONAL JOURNAL OF REHABILITATION RESEARCH, 15, (Winter 1992), 227-33. http://www.independentliving.org/docs3/brown92a.html
An attempt to reframe how people look at disability from a perception of pride rather than negativity. With a focus on a few heroes the author describes a mythic journey of the disability experience.
Brown, Steven E., "Deviants, Invalids, and Anthropologists: Cross-Cultural Perspectives on Conditions of Disability in One Academic Discipline: A Review of Disability and Culture, DISABILITY AND REHABILITATION: AN INTERNATIONAL, MULTIDISCIPLINARY JOURNAL, 18 (5) (May 1996), 273-75. http://www.independentliving.org/docs3/brown96d.html
A critical review of the book DISABILITY AND CULTURE, edited by Benedicte Ingstad and Susan Reynolds Whyte.
Brown, Steven E., "Disability Culture: A Fact Sheet," (Las Cruces, NM: Institute on Disability Culture, 1996). http://www.independentliving.org/docs3/brown96a.html
A two-page description of the evolution of disability culture through the mid- 1990s.
Brown, Steven E., "Dis-ing Definitions," MAINSTREAM: MAGAZINE OF THE ABLE- DISABLED, 21 (10), (Aug. 1997), 22, 26-27, 29. http://www.independentliving.org/docs3/brown97b.html
An attempt to reframe what the language about disability means and how people with disabilities do or do not fit into the "norm."
Brown, Steven E., "'Poster Kids No More:' Perspectives About the No-Longer Emerging (In Fact, Vibrant) Disability Culture,"; DISABILITY STUDIES QUARTERLY, 18(1) (Winter 1998), 5-19. http://www.independentliving.org/docs3/brown98a.pdf
This article attempts of put into perspective the author's view of changes in the ideas and implementation of the disability culture concept. Includes many quotes from previous writings.
Brown, Steven E., "We Are Who We Are... So Who Are We? MAINSTREAM: MAGAZINE OF THE ABLE-DISABLED, 20 (10), (Aug. 1996), 28-30, 32. http://www.independentliving.org/docs3/brown96b.html
After years of being asked for a short definition of "disability culture" this article attempts a one-paragraph definition and discusses the treacherous nature of definitions in general.
Crescendo, Johnny. "The Ballad of Josie Evans." 1993. [Recorded by Johnny Crescendo and the P.O.P. Squad] On PRIDE [Cassette] Derbyshire, England, 1993. http://www.independentliving.org/docs3/evans93.html
An eloquent, heart-wrenching story of a woman who is abandoned by her government and everyone else to a solitary, but dignified, life and death in a nursing home.
Field, Jane, "The Fishing is Free," THE FISHING IS FREE. (Available while supplies last from the Institute on Disability Culture, 2260 Sunrise Point Rd., Las Cruces, NM 88011, $10.00 plus S&H). http://www.independentliving.org/docs3/field1994.html
Field, a Canadian singer and songwriter with a disability is the only singer I know of who consistently uses humor in her tales of disability.
Books About Disability Culture
Brown, Steven E., FREEDOM OF MOVEMENT: INDEPENDENT LIVING HISTORY AND PHILOSOPHY (Houston: ILRU, 2000; Available from 2323 S. Shepherd, Suite 1000, Houston, TX 77019, http://www.ilru.org).
Brown, Steven E., INVESTIGATING A CULTURE OF DISABILITY: FINAL REPORT (Las Cruces, NM: Institute on Disability Culture, 1994).
Charlton, James I., NOTHING ABOUT US WITHOUT US: DISABILITY OPPRESSION AND EMPOWERMENT (Berkeley: California, 1998).
Crutchfield, Susan and Marcy Epstein, eds., POINTS OF CONTACT: DISABILITY, ART, AND CULTURE (Ann Arbor: University of Michigan, 2000).
Fries, Kenny, STARING BACK: THE DISABILITY EXPERIENCE FROM THE INSIDE OUT (NY: Plume, 1997).
Gallagher, Hugh Gregory, BY TRUST BETRAYED: PATIENTS, PHYSICIANS AND THE LICENSE TO KILL IN THE THIRD REICH (New York: Henry Holt, 1990).
Gallagher, Hugh Gregory, FDR'S SPLENDID DECEPTION (New York: Dodd, Mead, 1985).
Hevey, David, THE CREATURES TIME FORGOT: PHOTOGRAPHY AND DISABILITY IMAGERY (London: Routledge, 1992).
Jacobson, Denise Sherer, THE QUESTION OF DAVID: A DISABLED MOTHER'S JOURNEY THROUGH ADOPTION, FAMILY, AND LIFE (Available from Creative Arts Book Company, 833 Bancroft Way, Berkeley, CA 94710, 1999, $24.50).
Kailes, June Isaacson, DISABILITY PRIDE: THE INTERRELATIONSHIP OF SELF-WORTH, SELF-EMPOWERMENT, & DISABILITY CULTURE (Houston: Independent Living Research Utilization, 1993).
Keith, Lois, ed., "WHAT HAPPENED TO YOU?" WRITING BY DISABLED WOMEN (New York: New Press, 1994).
Linton, Simi, CLAIMING DISABILITY: KNOWLEDGE AND IDENTITY (NY: New York University, 1998).
Longmore, Paul K. and Lauri Umansky, eds., THE NEW DISABILITY HISTORY: AMERICAN PERSPECTIVES (New York: NYU Press, 2001).
Mairs, Nancy, WAIST-HIGH IN THE WORLD: A LIFE AMONG THE NONDISABLED (Boston: Beacon, 1996).
Websites About Disability Culture
Centre for Disability Studies: University of Leeds
Disability Studies Quarterly
Disability World Ezine
Institute on Disability Culture
London Disability Arts Forum
National Disability Arts Forum (UK)
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