The California breeze blew exceptionally warm that fall day in 1962 as Ed Roberts, a postpolio quadriplegic, was lifted out of his wheelchair, carried up a mountain of steps, and situated in Room 201 of Cal Hall at the University of California at Berkeley. "It was a perfect day, a wonderful day, an exceptional day," says Roberts."It was the first day of class, the first day of my freedom, and the first day of my life as a self-sufficient person." That same school semester James Meredith, escorted to class by U.S. marshals, integrated the University of Mississippi. "We both had to sue to get into school," notes Roberts. "The only difference: I didn't need soldiers to protect me." But just as surely as Meredith ushered in a new chapter of the civil rights movement, Roberts was starting a civil rights movement of his own -- one that would eventually remake the world for Americans with disabilities.
Taking their cues from the civil rights movements of blacks, women and other minorities, Roberts and fellow disability rights leaders would challenge widely held myths that people with disabilities were incapable of being educated, working, caring for themselves, or becoming contributing members of society. They would challenge the notion that they led tragic or lesser lives. And they would proudly call themselves "disabled."
But it would take almost another 30 years, until 1990, before this new self-identity was reflected in law with the passage of the Americans With Disabilities Act, a far-reaching federal statute that prohibits discrimination against 49 million Americans.
Birth of a movement
The disability rights movement, which won that law, began the day Roberts -- who was so severely disabled that he spent most of his day in an iron lung -- arrived on the Berkeley campus. He needed someone, often his brother, who was also a student, to help him get out of bed, dress, eat, and open his books. "Helpless Cripple Attends UC Classes . . .," said one newspaper headline of the Berkeley experiment.
But Roberts saw school as one place where he could compete. "I'm paralyzed from the neck down, not from the neck up," he would say. Still, because few people with disabilities even tried to go to college, as Roberts points out, "there were very few role models." So he became one. And within a few years a dozen other students with severe disabilities, heartened by Roberts's example, followed him to the Berkeley campus.
In the beginning Roberts himself wasn't sure a "crippled" man belonged on a college campus like Berkeley. Limited opportunities "did not seem like discrimination," he says, only something to be expected. "We had such strong feelings of self-hatred and inadequacy."
On the Berkeley campus, however, Roberts watched as black students and women students challenged similar assumptions about their own assumed inferiority. "When women talked about being objects, I understood," he recalls. When blacks and women talked about the power of language, "underneath I got more and more angry at the way people perceived me as a vegetable with no future." Adds Roberts, "We were all talking about the same issues."
The Rolling Quads, as the students with disabilities called themselves, quickly found the campus full of barriers that seemed to mock their every desire to succeed. So Roberts and his pals, with the help of a small federal grant, started the Physically Disabled Students' Program dedicated to solving any problem that stood between the student with a disability and academic achievement. That meant finding attendants to help them get to class; scouting accessible apartments; even establishing a 24- hour emergency wheelchair-repair service, since a broken wheelchair sent back to a dealer could keep a student out of class for weeks. "The most revolutionary part of the whole thing was that we did it ourselves," says Roberts.
This seemingly simple program reflected a revolution in the way people with disabilities were coming to see their lives. Rejected was the poster-child or recipient-of-charity model that perpetuated the treatment of people with disabilities as sick, incapable and dependent. Doctors had up to that time measured independence by how far one could lift a leg or walk after an illness or accident. Roberts redefined independence as the quality of one's life with accommodations, like attendant care or a ramp. And he argued that people with disabilities knew better than doctors or rehabilitation counselors what they could achieve and what they needed.
In 1972 Roberts and his friends, who had by then begun to leave school, took their student-program concept a step further and started the Center for Independent Living. Its mission: to find jobs, homes and other accommodations and services for graduates with disabilities in the Bay Area. Today there are some 300 of these centers around the country.
The nonprofit centers, which were among the first disability programs to be run by people with disabilities themselves, initiated a whole new generation of political activists. And the laws and programs those activists fought for had at their core the philosophy of accommodation Roberts had so valiantly set out at Berkeley. He was, after all, a perfect example of that philosophy: someone who, with help, far exceeded the expectations others had for him. In fact, counselors for California's Department of Rehabilitation had at first opposed helping Roberts go to Berkeley, arguing it "infeasible" that he would ever be able to work.
In 1975 Roberts became the head of that very same state agency. "We should never define people's limits. Each of us has to define our own limits," says Roberts, who constantly explores his own outer edges. In the last few years, for example, the ventilator- using quadriplegic has studied karate and gone swimming with whales off the coast of Hawaii. "In the beginning it was, 'Why me?' Now it's, 'Why not?' "
Accommodation, not pity
The ultimate expression of the independent-living philosophy is the Americans With Disabilities Act. This sweeping piece of legislation, most of which went into effect starting in 1992, not only banned outright discrimination against people with disabilities but also made providing accommodations, like ramps and wheelchair-height desks in thework place, the law.
It was a worthy punctuation of the movement's insistence that there is nothing tragic and pitiable in having a disability. "Disability only becomes a tragedy for us when society fails to provide the things we need to lead our lives -- job opportunities or barrier-free buildings, for example," explains disability rights leader Judith Heumann, who moved from New York City to California in 1973 to work with Roberts after having to sue the New York City Board of Education to gain the certification she needed to work as an elementary-school speech pathologist. Today, as a United States Assistant Secretary of Education, Heumann oversees federal special education, rehabilitation, and disability-research programs.
The power of the movement also came from the fact that people with disabilities represent the one minority anyone can join at any time. Fewer than 6 percent of Americans with disabilities were born with their disabilities, which usually result from accidents, diseases or complications of aging. "Disability knows no socioeconomic boundaries," emphasizes Patrisha Wright, who led the fight for the ADA as the Washington lobbyist for the Disability Rights Education and Defense Fund, a legal group that started at Berkeley's Center for Independent Living. "You can become disabled from your mother's poor nutrition while she carried you or from falling off your polo pony."
Former Representative and now chairman of the President's Committee on Employment of People With Disabilities Tony Coelho, who has epilepsy, also attributes passage of the ADA to the "hidden armies" of people in positions of power who claim personal experience with disability.
But it also took people banding together in groups like ADAPT (then the acronym for American Disabled for Accessible Public Transit, now for American Disabled for Attendant Programs Today). Its members took a variety of direct actions, including blocking inaccessible buses, to bring attention to the need for wheelchair lifts, now a requirement. " Black people had to fight for the right to ride in the front of the bus," notes Mark Johnson, an ADAPT leader. "We fought for the right to get on."
The schools, as in other movements, were another key battleground. In 1975 parents of youngsters with disabilities brought lawsuits to win the first federal guarantee that their children would go to school. Before then, a million children in this country received no education -- almost every one a child with a disability. Today there are approximately 5 million special-education students.
All for one . . .
In fighting for the ADA, people of all disability types -- physical, sensory and mental -- came together in a mighty coalition to argue that they have one thing in common: All face discrimination and the low expectations of others. Sometimes prejudice is crude, like that of the New Jersey private-zoo owner who refused to admit children with Down's syndrome because, he claimed, they upset his chimpanzees; or of the airline employee who placed a 66-year-old double amputee on a baggage dolly rather than help him into a wheelchair.
More often the bias is subtle, as in the most serious problem -- employment discrimination. According to a 1994 Louis Harris study commissioned by The National Organization on Disability, two- thirds of people with disabilities ages 16 through 64 are unemployed. A full 79 percent of them say they want to work. Arizona State University health economics professor William Johnson, Ph.D., and East Carolina University assistant professor of economics Marjorie Baldwin, Ph.D., found that even when people with disabilities do hold jobs, they make less than other workers and are less likely to be promoted. It's discrimination like this that makes it necessary to keep the movement strong. Because, in the end, gains made in the name of people with disabilities benefit everyone. Changes in social policy have been similarly influential. Attendant-care programs, for example have offered new options for staying in one's own home instead of going to a nursing home. For such changes Ed Roberts, who now runs a disability think tank, claims the disability rights movement has made some of "the most profound social changes ever seen."
Profound, yes. But what happens when Congress grants a new minority group rights and society has little understanding of those rights, why they were awarded, or even why they are needed? As the newly recognized minority of people with disabilities asserts those rights, there will be many breakthroughs for equality. But there will also be clashes, misunderstandings, even a backlash.
Because of their movement's successes, people with disabilities are a protected class in civil rights legislation, empowered by law as well as united against discrimination. Their mission now is to convince a nation and the world that they and their fellows want neither pity-ridden paternalism nor overblown admiration. What they do want is common respect and the opportunity to build bonds to their communities as fully accepted participants in daily life.
The author writes on social policy issues for U.S. News &
World Report and The Washington Post. He received the Alicia
Patterson Foundation Fellowship to study the disability rights movement,
which is the subject of his book, No Pity: People With Disabilities
Forging a New Civil Rights Movement (Times Books, 1993). He also writes
for The Progressive, The Disability Rag and many other publications.