New York Times - June 1, 1997

Disability Culture: Eager to Bite the Hands That Would Feed Them



Arguably, Mattel's introduction of a new pal for Barbie, "Share-a-Smile Becky," represents a new consciousness toward disabled people. The doll comes in a pink-and-purple wheelchair.

It might be a harder sell than the toy company thinks. "The name makes me want to gag," said Leslie Heller, who has cerebral palsy. Nadina LaSpina, who had polio, said, "It shows they can make money off of us." "We'll see where it's marketed," said Deborah Yanagisawa, who is blind. "It will be in the hospital gift shops."

The comments signify a new militant attitude among many of the disabled, sometimes including a willingness -- even eagerness -- to bite the hands that would feed them. After decades of fighting for access to everything from colleges to buses, a battle that culminated in 1990 with the passage of the landmark Americans with Disabilities Act, increasing numbers of people with disabilities are forcefully putting forward ideas that might startle many Americans.

Not only do they criticize the Franklin Delano Roosevelt Memorial for omitting a wheelchair, they point out that the Braille is too high up and too large to read. Far from applauding the customers in wheelchairs shown in television commercials, they grumble that there are no disabled sales clerks. They castigate Christopher Reeve for his campaign for a cure for spinal injury, saying it is unrealistic and offensive to people who have learned to live with their disabilities and indeed thrive on them. They demonstrate against giving doctors the right to assist in suicide, calling that a slippery slope; they grimly point out that Hitler killed 200,000 disabled people before he got around to other groups.

Perhaps most surprising to conventional thinking is that many say they would reject being cured even if it were possible, explaining that they have a condition, not an illness. "I would not trade my disability for anything," Ms. LaSpina declared. Rather, she said, it is up to the world to adapt to her needs, a process spurred by legislation and regulation and accelerated by technology -- from power wheelchairs to voice-activated computers. "We will not change to fit the mold," she added. "Instead, we will destroy the mold and change the world to make sure there is room for everyone."

Disability, of course, is in the eye of the beholder, and must be defined as continuous. A person who uses glasses -- arguably "spectacle bound" (as in the hated phrase "wheelchair bound") -- would not normally be included. The disabled are the only minority group anybody can join at any time. This said, the average number of Americans with physical disabilities is 49 million, including many within the growing ranks of the elderly.

Ms. LaSpina, who has a doctorate in Italian literature, teaches a course called "Disability Culture" at the New School for Social Research in New York City; Ms. Heller and Ms. Yanagisawa are two of her students. They are united in the conviction that a new culture has developed among the disabled, much like that of deaf people, who have long had their own language -- and like that of homosexuals.

Hardly self-pitying, disability culture celebrates disability and finds expression in literature, poetry, dance and, most pointedly, in a slashingly dark humor. (An example: non-disabled people are bowling pins because they are so easy for wheelchair riders to knock over.)

Poetry by Cheryl Marie Wade begins by saying she is "not one of the physically challenged." It continues: "I'm a sock in the eye with a gnarled fist, I'm a French kiss with a cleft tongue."

Disabilities are central to such visions. "We are proud of ourselves as people with disabilities," said Steven E. Brown, co-founder of the Institute on Disability Culture in Las Cruces, N.M. "We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities."

The consciousness shift can be traced back to 1962 when Edward V. Roberts, who became a quadriplegic after contracting polio, was admitted to the University of California. He had to sue to do it, just as in the same semester James Meredith sued to become the first black person to gain admission to the University of Mississippi.

Roberts, a quadriplegic who attended class using a respirator, was quickly joined by other disabled students, who called themselves "the Rolling Quads."

Roberts went on to set up a center at Berkeley to enable students, and then the larger community in the Bay Area, to help the disabled find homes, jobs and services. He died in 1995. His example led to 300 such centers being established around the United States. These federally financed centers have been pivotal in allowing more disabled people to participate in life.

Many come together in groups like Disabled in Action, which has fought for elevators in subway stations and against telethons to aid the disabled, which it regards as hopelessly paternalistic. The Disabled in Action Singers perform such numbers as "Let the Children Stare" to convey the message that no good -- certainly not politeness -- is served by ignoring disabilities. For the disabled themselves, the new advocacy associations allow mutual affirmation to replace individual denial.

"When I was growing up, I was terrified of walking into a room of people with disabilities and admit I was one of them," Ms. Heller said. "Now I just love being in a community of people with disabilities."

It is not always easy. Many disabled people still don't get around much, and those who do often move slowly. Some are tired, physically and emotionally. But many say it is worth it because of the qualities they share. Carol Gill, a psychologist who was one of the first to use the term disability culture and who is a quadriplegic, says the disabled share a number of core values: tolerance for others' differences, highly developed skills at managing multiple problems and dark humor, among others.

Most important, said Ms. Gill, "Even if we have a minor disability, we're still different -- because society won't let us forget that we're different."

For some disabled people, these differences are the opposite of off-putting. "I came to see disabled people as beautiful," said Danny Robert, who has multiple sclerosis. "Particularly people on respirators, people in wheelchairs, people who spasm a lot, people who drool."

Robert, formerly a movie prop man, became a disabled-rights activist. "Once I stopped being what I had been, I needed to be part of a community," he said. "I love these people."

Sherry Lampert pretty much summarizes the changing, broadening horizons of the disabled. She is 49 years old and lives on the ground floor of a Coney Island housing project. She has cerebral palsy and needs round-the-clock attendants. As a teen-ager, her sister demanded that she hide in the back room when dates visited. Though her intelligence is sharp, her parents put her in a hospital ward for the retarded, and she tried to kill herself at 16. "I felt like I wasn't part of the human race," she said.

These days, Ms. Lampert has become a fervent participant in demonstrations against allowing assisted suicide. A bumper sticker on her wheelchair reads: "Not Dead Yet." Her views on Reeve are succinct: "I feel sorry for him because he wants to be cured."

Copyright 1997 The New York Times Company

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