Spring 2002, Volume 22, No. 2
pages 34-50 <www.dsq-sds.org>
Copyright 2002 by the Society
for Disability Studies
What Is Disability Culture?
I have been asking (and being asked) the title question for at least the past dozen years. I have identified and shared example after example to demonstrate the existence of disability culture, but it is much more difficult to define the phrase. There are many reasons for this. The words, "disability," and "culture" are each value-laden, charged with emotion in every culture I have encountered. Almost all of us identify with more than one culture. Growing up I knew, for example, that I was male, that I was a Midwesterner (United States), that I was Jewish, that I was middle class, that I was white, and probably many other things I am forgetting as I write this paragraph. The point is that each of these examples could be considered cultural. I was also a person with a disability during most of my youth, but it was much later in my life that I identified myself that way.
Moving to an 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.
In the past two years I have been asked to describe and stimulate discussion about disability culture on two websites. As a result of these efforts I have sought quotes about disability culture from sources around the world. The bulk of this paper will consist of other people's words with some (hopefully) descriptors about why these particular quotes are being used. One note about style and language. I have attempted to maintain the styles I found these words first formatted in out of respect to the authors and their wishes. In the same vein, I have kept the language in its original spellings. I begin quoting myself from Investigating a Culture of Disability: Final Report published in 1994 after receiving the first monies from the Department of Education to do research about disability culture. This paragraph was first used in my proposal to the National Institute on Disability Rehabilitation Research (NIDRR) to start this work:
The following quote I found online while searching for descriptions about disability culture from other countries. I know nothing about the author:
Harlan Hahn, perhaps the first scholar to write about disability being beautiful, wondered, "Have you ever thought about going to McDonald's as part of your cultural heritage? He says for people with mobility disabilities fast food restaurants are a cultural icon." (VSA arts New Mexico website: <http://www.vsartsnm.org/>)
Understanding Disability Culture (New Zealand)
A New Zealand website I found included many links to disability culture and focused, as does much of the world, on employment.
Celebration of Disability (South Africa)
A South African Minister identified "disability culture" as a way to celebrate disability:
Disability in the Arts, Disadvantage in the Arts (Australia)
An Australian website includes a multi-tiered plan to utilize the arts, disability culture, and disability pride to focus on people with disability contributing to Australian society. Below is a small sampling of what's on their website:
Tony Doyle suggests the following outcomes from naming disability culture:
An Australian Model of Disability Culture
For more information or to contribute to the discussion contact: Tony Doyle at Arts In Action on phone 08 8224 0799, fax 08 8224 0709 Sally Chance at Restless Dance Company on phone/fax 08 8212 8495 or at <email@example.com>; Eddie Bullitis on phone 8201 3358 or fax 8201 3210; the DADAA network can be contacted via DADAA National Network Coordinator on phone 02 9251 6844 or fax 02 9251 6422 or email <@one.net.au>.
Disability Culture and Disability Rights (Japan)
Osamu Nagase first contacted me while he was in Europe working on a Master's Thesis about disability and especially deafness in Japan. One chapter was about disability culture. I found his entire thesis on the internet and include that chapter below. (It is reprinted with Nagase's permission.)
Growth of the Human Condition (Sweden)
Adolf Ratzka, often referred to as the founder of European independent living, is frustrated by the frequent focus of disability culture on the arts. In correspondence with me he expressed how disability culture holds meaning for him:
To conclude with my own thinking, here is my one paragraph definition, the shortest I can come up with, published in a 1996 issue of MAINSTREAM magazine that I still use:
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 to which most of us belong. 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 are aware they are may be nuances, or even larger differences between some of us, but we have had to start somewhere.
If we consider all the possibilities of all disabilities and all cultures it is 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, many 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 is disability culture, at least from one person's perspective. What do you think?
Brown, Steven E., INVESTIGATING A CULTURE OF DISABILITY: FINAL REPORT (Las Cruces, NM: Institute on Disability Culture, 1994, $50.00 pre-paid).
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.
Brown, Steven E., "What is Disability Culture?" Institute on Independent Living Website Newsletter, Dec. 2001 <http://www. independentliving.org>.
"The Celebration of Disability Awards: Nov. 25, 2000, Durban, South Africa, Speech by the Minister of Arts, Culture, Science, and Technology, Dr. Ben Ngubane <http://www.dacst.gov.za/speeches/minister/nov2000/disability_awards.htm>.
Family and Community Services Action Plan (Australia: <http://www.facs.gov.au/internet/facsinternet.nsf/aboutfacs/disab ility-disability_action_plan.htm>).
Gevers, Ine, "Non-Symbolic Cultures," <http://users.bart.nl /~5star/N/about.htm>.
The Implementation of the New Zealand Disability Strategy Auckland Regional Forum <http://www.nzds.govt.nz/nzdsdoc /new_zealand_disability_strategy.htm#Contents>.
Nagase, Osamu, "Difference, Equality and Disabled People: Disability Rights and Disability Culture," (partial fulfillment of MA in Politics of Alternative Development Strategies at the Institute of Social Studies, the Hague, the Netherlands, December 1995).
Ratzka, Adolf, Personal Communication, Jan. 2002. VSA arts New Mexico website: <http://www.vsartsnm.org/>, 2001.
Steven Brown, Ph.D., is the co-founder, along with Lillian Gonzales Brown, of the Institute on Disability Culture in Las Cruces, New Mexico. His Ph.D. is in history from the University of Oklahoma. He is a recognized scholar in disability studies specializing in disability culture and independent living. He is an accomplished advocate and consultant to organizations composed of people with disabilities.
Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities and arts, disability rights advocates, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. (ISSN: 1041-5718; eISSN: 2159-8371)