Independent Living Institute

I lie here in my universe of the mat, my bed. I always have been here lying in my universe forever, forever. My mat, my pillow, my sheet, my blanket...for countless force-fed meals, enemas, baths, shaves, haircuts, pissed-on sheets...many many harsh-lighted days, many, many semi-dark nights. Outside my universe there are bony fingers, blotch-skin creatures. Sometimes they invaded my universe...the sickly-sweet smelling ones. They "take care of me"...they handle me like they handle my pillow.

Frank Moore, an underground performance artist from Berkeley, California, who has significant cerebral palsy and for much of his life has been labeled non-verbal, is a beacon of possibilities in life and art.

by Steven E. Brown
Institute on Disability Culture

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They thought we'd keep on smiling for years to come
They thought we'd just be helpless and mild
Without our own opinion they could just cash in on
Their image of the crippled child.

But Timmy and Tammy are rebelling
Their Easter seals have come unglued
They won't be apathetic; they refuse to look pathetic
They're changing their point of view.
They're poster kids no more,
Poster kids no more!

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Reprinted with permission from DISABILITY & REHABILITATION, Biomedicine & Bioscience Journals Publisher, Taylor & Francis Limited, P.O. Box 25, Abingdon, Oxfordshire, OX14 3UE United Kingdom. WWW: www.tandf.co.uk/

(Page numbers are given in round brackets and footnotes in square brackets.)

"The fishing is free with your disability
You don't need a license like the rest.
Movies are half the price, well isn't that nice?
And the parking spots are nothing but the best.

Language can be a bane of human rights movements. What do we call ourselves? What do others call us? Do labels intersect with models of freedom? Can descriptions of who we are liberate us from yolks of oppression? Do we automatically imprison ourselves as soon as we turn to classifications?

For many years I have been writing, talking, and thinking about language. Like my colleagues across the world in the disability rights movement I have described myself as an individual with a disability, using the preferred term "disability" for a myriad of conditions in combination with "people first" language where the condition of "disability" is an adjective describing one aspect of a person.

Valentine's Day, 1992. It rained harder that day in Oakland, California, than it had for fifty years. Sheets of water cascaded onto the ground. Visibility was laughable. You couldn't inch outside without getting drenched.

About a year ago, Christopher Reeve became paralyzed in an horse-riding accident. A respirator-using quadriplegic Reeve has suddenly become the most well-known, best-loved person with a disability in the world (as opposed to someone like Muhammad Ali, who is probably the most well-known, but not the best-loved - an important distinction). President Clinton invited Reeve to speak at the Democratic National Convention in late August.

This invitation led to a most interesting electronic mail conversation. It began with a challenge from historian Paul Longmore:

"Deviants, Invalids, and Anthropologists*: Cross-Cultural Perspectives on Conditions of Disability in One Academic Discipline: A Review of DISABILITY AND CULTURE. Edited by BENEDICTE INGSTAD and SUSAN REYNOLDS WHYTE (Berkeley: University of California Press, 1995) [Pp. 307]

* A play on the title of Chapter One, "Deviants, Invalids, and Freedom Fighters: Historical Perceptions of People with Disabilities in the United States," in my recent manuscript, "Investigating a Culture of Disability."

Saturday morning. The sun is shining. I sit contentedly in my living room chair fulfilling a volunteer commitment. Baking pleasantly in the warmth, and the light, I am energized. I finish the volunteer work; I complete some light reading; I retrieve my pile of disability culture notecards waiting to be organized and filed. I feel productive. I am contemplative. Before I can stop myself my brain is racing into an approach and definition of disability culture I think might be livable.

How many cultural definitions or characteristics might one find in the above paragraph? Sun-worshipper? Volunteer? Workaholic? Reader? Philosopher?

What would make any of the above words cultures? What would make me a member of such a culture?

Copyright ©1995, Institute on Disability Culture, All Rights Reserved

The modern disability rights movement began more than thirty years ago during the 1960s. People with disabilities around the world successfully challenged dominant social stereotypes. In the United States, Ed Roberts, a post-polio, ventilator-using quadriplegic, broke American educational barriers when he became the first person with such a significant disability to attend college. Roberts entered the University of California at Berkeley in 1962. During a lifetime of fighting for equality for people with disabilities he became an international representative of human rights and overthrowing oppression.

by Steven E. Brown
Institute on Disability Culture
2260 Sunrise Point Rd.
Las Cruces, New Mexico, USA 88011

This article is based on a speech written when I served as Training Director for the Research and Training Center on Public Policy in Independent Living at the World Institute on Disability funded by National Institute on Disability Rehabilitation and Research grant #H133B00006-90. The address was delivered to the Region VI Independent Living Conference in Little Rock, Arkansas on November 11, 1991.