Independent Living Institute

Paper delivered at the Disability and Society Conference Autumn 1996

by Jane Campbell

It's time to talk about death. Not only the sad and unexpected deaths of our heroes, role models and friends like Ed Roberts, Irv Zola, or others of the currently aging crip generation, but the messy reality of living with disabling conditions that lead to the inexorable reality of life's end.

Two years ago we entered a very quiet Tucson, Arizona house. A hospital bed dominated the living room. On it lay a gaunt, dying man. Steve knew him only as Lew, the partner of Lillian's friend, Dan. We spent a couple of hours with Lew and Dan and then went on about our lives. Days later Lew was dead--another casualty of the AIDS virus.

"Friday, April 25th, 1997, a ceremony in downtown Berkeley commemorated the 25th anniversary of the first curb ramp for the disabled. "It's the slab of concrete heard round the world," according to Gerald Baptiste, Associate Director of Berkeley's Center for Independent Living, noting that the curb ramp is believed to be the predecessor of millions of similar ramps that have been built throughout the world to enable wheelchair users to utilize sidewalks, businesses, parks and other public facilities."

Americans learn from a very early age that our nation began with certain inalienable rights, including the right to life, liberty, and the pursuit of happiness. Is this reality or is this rhetoric?

by: Steven E. Brown, Fall 1998

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

PDF (157 KB)

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!

PDF (62 KB) | Word (RTF, 69 KB)

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.