ED ROBERTS loves to tell the story of what happened when the doctor told his mother that her son, who had contracted polio, would be severely disabled. She expressed relief at knowing he was going to live, he recounts, and ``the doctor turned to her and said, `How would you like to live in an iron lung? He'll be nothing more than a vegetable.''' Mr. Roberts produces the punchline with a grin: ``I'm proud to be here today as an artichoke. Prickly on the outside but with a big heart.'' He laughs, takes a breath of air from the portable air pack attached to his motorized wheelchair, then a sip of tea from a glass his attendant holds up, and plunges right back into the discussion.
``I was advised I'd never have a family or work,'' he says. Yet he attended the University of California, Berkeley, and organized several organizations dealing with the disabled. Ironically, when Roberts applied to the Department of Rehabilitation in California to train disabled people, he was turned down as being ``too disabled.''
``They didn't see how motivated I was. A person may have a lot of talent and pride, but the disability [in the eyes of others] overrides everything else.'' Fifteen years later, he was director of the same agency, and today travels all over the world as president of the World Institute on Disability, in Berkeley. And he has a 10-year-old son.
Roberts is one of the leaders of the disability rights movement, a growing band of activists with various disabilities who have joined together for greater political clout. Their goals are similar to those of the black and women's civil rights movements: to shatter stereotypes and societal barriers that bar their full participation.
``In the beginning, there were just a few hundred people who had a vision of civil rights for disabled people,'' says Mary Jane Owen, director of Disability Focus, Inc., in Washington, D.C., a non-profit consulting group. ``Now we have hundreds of thousands of people. We're on the agenda.''
According to census figures, there are 37 million people with disabilities in the United States. And this number is expected to grow as the population ages.
After years of little-noticed effort, the disability rights movement is emerging into the mainstream. People with disabilities occupy influential positions in government (16 are members of Congress). Legislation has begun to remove architectural and occupational barriers, and activists are introducing a spate of new bills to further that progress. The first generation of disabled children to be educated in mainstream classes has just graduated.
Much has changed since the spring of 1977, when more than 100 protesters who were deaf, blind, or had other disabilities, gathered at the US Health, Education, and Welfare offices in San Francisco. What started out as a simple rally escalated into a 28-day sit-in, the longest ever held in a federal building, and the beginnings of what disabled people view as the third major civil rights movement in the country.
Protesters were demanding that the Carter administration enact regulations implementing provisions of the 1973 Rehabilitation Act that barred discrimination against disabled people in programs receiving federal aid.
At the same time, activists in New York, Washington, Atlanta, and Denver held their own demonstrations. On April 28, HEW secretary Joseph Califano signed the regulations, saying, ``Section 504 ... represents the first federal civil-rights law protecting the rights of handicapped persons and reflects a national commitment to end discrimination on the basis of handicap.''
That, combined with the 1975 Education for All Handicapped Children Act, which ensured disabled children of free public education regardless of the severity of their disabilities, seemed to usher in a new era of promise. It established a mandate to end discrimination and to bring disabled people into the mainstream.
But progress has been met with resistance. Disabled activists say that the later Carter years were the friendliest to their cause, but under the hands-off Reagan administration, they've had to fight the eroding of their hard-won gains.
More than a decade later, public transportation is still largely inaccessible to a majority of the mobility-impaired. Lawsuits are filed to force school districts to obey federal law in admitting disabled children. Yet many accessibility features, such as special parking spaces for the disabled and widened bathroom stalls, go unused. And according to a 1986 Harris & Associates poll, 66 percent of working-age disabled people are still unemployed. That survey called people with disabilities, ``a sleeping giant, when it is stirred, even the mighty will tremble.''
Newly proposed legislation, the Americans with Disabilities Act of 1988, aims to rectify the shortcomings of previous piecemeal legislation. Unlike existing laws, which apply only to recipients of federal funds, this law could be broadly enforced. If passed, it would prohibit discrimination of disabled people in employment, education, housing, transportation, and communications. Proponents say it could be as comprehensive as the Civil Rights Act of 1964. The analogy is important.
``We see [the disability rights movement] as the third wave of civil rights,'' says Alan Reich, president of the National Organization on Disability based in Washington, D.C. ``We're learning from the women's movement and the black civil rights movement as they apply to disability.
``The real exciting thing is that for the first time people with different disabilities are identifying with common goals and common concerns, as a unified minority group, the nation's largest,'' Mr. Reich says. ``The lack of education, lower participation in voting, inaccessibility in places of worship are common to all disabled people.'' Yet so far the movement has reached only some of the poor and less well-educated people with disabilities.
The real problems, activists say, are not the disabilities, but the handicapping barriers society puts up. Cost is one: An argument that disability activists say they hear often is that making society accessible for just a few people costs too much.
Mary Lou Breslin, director of the Disability Rights Education and Defense Fund Inc., (DREDF) in Berkeley scoffs at that. ``The cost issue is always used to object to disabled people participating fully. The costs are often inflated. People misunderstand about the scope; it's not every bathroom, not every floor. ``The federal law has been in place for 15 years and we've seen a lack of willingness to cooperate. The disabled community has had to think clearly about what we're willing to settle for. We're not willing to settle for violations of existing federal law.''
DREDF is one of the activist organizations sprinkled along the gently sloping streets here that make Berkeley a mecca for people with disabilities. DREDF monitors rights around the nation, keeps laws favorable to disabled people from being phased out, and provides technical legal assistance.
Their aim is to fight discrimination through legal channels, rather than trying to change stereotypes.
``Attitudes are so deeply imbedded that without the leverage of law, there's not much you can do about them,'' says Breslin.
Others say that the progress people with disabilities have made can not be chalked up solely to hard-nosed activism. ``There have also been gains because society is recognizing that people with disabilities can and should participate more,'' says Reich. ``There have been gradual improvements over time, and a growing enlightenment.''
``For people with disabilities, it's really a true revolution: from charity and paternalism to being treated like a real human being,'' says Deborah Kaplan, a public policy lawyer who works with disability issues. ``We're moving away from the expectation of disabled people being seen as objects of other people's' assistance to people having something to contribute to society.''
``I think we'll really succeed,'' says Roberts. ``We're fundamentally changing the way the country looks at disability and the way we look at ourselves.''
On Monday: living in a family. On Friday: living independently.
As disabled people throw off limited concepts of themselves, they are becoming more sensitive to the language used to describe them. The Research and Training Center on Independent Living at the University of Kansas has published guidelines for media professionals to correct outdated and demeaning terms. They reflect input from more than 100 national disability organizations. Some key points follow:
Do not sensationalize a disability by saying ``afflicted with,'' ``suffers from,'' ``victim of,'' etc.
Do not label people as part of a disability group, such as ``the retarded.'' Instead, say people with mental retardation.
Put people first not their disabilities. Focus on the individual, not on a particular functional limitation, such as ``crippled,'' ``deformed,'' etc.
Emphasize abilities, not limitations - uses a wheelchair, walks with crutches.
Disability: General term for a functional limitation.
Handicap. Not a synonym for disability. Describes a condition or barrier imposed by society, the environment, or by one's own self.
Nondisabled. Appropriate term for persons without disabilities. ``Normal,'' ``healthy,'' or ``whole'' are inappropriate as a contrast.
For a copy of the guidelines, contact: Media Project, Research and Training Center on Independent Living, BCR/3111 Haworth, University of Kansas, Lawrence, KS 66045.