Don't call us handicapped
Visiting the Center for Independent Living in Berkeley, you begin to realize that one of the most vital activist movements in the country is on wheels. And, though its proponents have been known to turn up in local discos, the wheels aren't on roller skates. Most of the leaders of this movement get around in electric wheelchairs.
You get accustomed to the hum of their battery-powered chairs, as they roll in to interviews and about their daily business. The movement has expanded from their main office, a former sports car showroom, to some offices across the street. So all day they're wheeling back and forth across Telegraph Avenue, the scene of so many movements, and one of the first streets in the country tott be equipped with curb cuts, those small but crucial ramps that enable someone in an electric wheelchair to cross streets without being hoisted over curbs.
The CIL is all about such independence, providing help with mundane problems like how to find an apartment accessible to wheelchairs, cooking, getting a job, and managing money. It also provides round-the-clock wheelchair repair and attendant referral. And beyond that, the CIL is a hive of organizational and legal activity centering on the rights of the disabled.
Just like walkers, people in wheelchairs all have their own ways of going down a street, each as expressive of that person as a walker's gait. Kitty Cone, a transportation expert who is working on thet problem of getting more buses and subway systems accessible to wheelchairs, sits bolt upright in hers, sailing down Telegraph with her head up, straight toward me as, both late for our interview, we hustle to her office from opposite directions. Ann Cupolo, who works for "In-take," where people go first when they come to the CIL for help, tends to loll casually, as she cruises along.
Judy Heumann, deputy director of the program, comes zooming into her office, where I'm waiting for her, with three people trying to talk to her and a phone ringing, and, maneuvering the lever on the arm of her chair, backing and pulling forward till she's parked just right in front of a desk laden with heaps of the photocopies and newspaper clippings, law books and telephones that any selfrespecting movement generates.
It was Judy, in fact, who got me looking at all these wheeled crusaders. Before meeting her, I thought it was rude to notice they were in wheelchairs and looked them right in the eyes, deliberately avoiding anything else. But as Judy settles back in her wheelchair, sighs, and gets ready for a long siege of explaining the CIL to me, I get a feeling of coziness and comfort, not through any liberation on my part, but because she's unselfconscious, comfortable with herself in her chair. She's an easy person to talk to, though it can be strenuous keeping up.
"For me, the word 'disabled' means as inability to do something, and it might , in my case, be a physical inability to walk stairs. Well, it's true, I cannot walk stairs, but that is not a handicap. . .The handicap is society building stairs without the ramp," she says in her fast, transplanted New Yorkese. "So I have difficulty with the word 'handicap,' because it has all kinds of negative connotations. Outside of the fact that it's a beggar's term that was derived from England -- it means 'hand and cap'-- . . . it also is used if you give someone a handicap when they're horseracing. You slow them down."
Not something that could easily happen to Judy Heumann, who is one of Ms. Magazines's "80 women to watch in the '80s." "I got involved in disability stuff when I was very little, and I became more politically active in the '60s," she says. She was recruited to come west to work for CIL by its founder, Ed Roberts.
Ed Roberts started the organization when he was studying at University of California in Berkeley, where he was the first quadriplegic to earn a B.A. He did it by living in the university hospital. He banded together with other with other disabled students, forming the Physically Disabled Students' Program in 1970, and by the time they graduated, their ambitions for independent life had grown. The CIL came out of those aspirations.
Judy Heumann had generated some publicity in the East when she became the first disabled person in New York to earn a teaching credential. She had to sue the Board of Education to get accredited,a dn another rights group , Disabled in Action, had sprung up around the case.
"When I filed my suit against the Board of Ed, it [was] a very big decision for me, because I had to finally decide whether or not I really could teach. The board said, 'What will you do in case of emergency, in case there's a fire?' I finally sat back and said, 'I'm not going to die in this fire. . .If I'm teaching in a school which has a ramp in it, of course I'm going to get the kids out of the school. Why am I allowing them to intimidate me?' I mean, there was some place in me which thought, 'Well, maybe I'll stop.' And that's what happens over and over again."
She hasn't stopped yet. She won her suit and ended up teaching in the elementary school her mother had had to fight to get her enrolled in (children in wheelchairs were considered fire hazards because the wheelchairs were thought to be difficult to rmove in case of a blaze). As a teacher, she raised the conciousness of the disabled and nondisabled alike. (To call a nondisabled person "able", she points out, is to imply that someone in a wheelchair is not able, which you don't dare do after you've spent a few minutes in conference with this powerhouse.) She taught a disabled class in the same basement she had been relegated to as a child.
"It was depressing, because the kids had never met a professional who was disabled, so at the end of the year, everyone was going to be a teacher. [But] that was phenomenal, because the year before, none of them were going to be teachers. What I kept trying to explain to them was that it was fine to want to be a teacher, but they really had any option open that they wanted, and that was the most important thing to look at."
Surely a sensible piece of advice, but something a third grader in a wheelchair might never have heard from a nondisabled teacher.
She opened some eyes in her nondisabled class, as well: "They ask the greates questions: 'So you sleep in your wheelchair? Do you cook? do you go out?' and after a while, they knew all about barriers, steps. And, you know, I taught kids of all ages for a number of years, and they would be able to say, 'Oh, Miss Heumann, you cna't go there because of this,' and 'Why did they do that?' "Why can't they do do this?'
"One of the reasons why mainstreaming of diabled kids [integrating them into classrooms with the nondisabled] is so important is not just for the disabled kids. . .but for the nondisabled individuals to begin to recognize that, you know, everybody has differences, and [learning] to accept people's differences and uniquenesses, and not feel so uptight about it."
After a stint at CIL, but before accepting her job there as Deputy Director, she worked in the office of Sen. Harrison A. Williams (D) of New Jersey. She had to rent a van, hire a driver, and buy a $200 lift for her chair to get to work in the morning, since subways were then inaccessible. she realized after a while that "a lot of the major legislation had really been passed at that point, and the bigger thing was implementation. . . A lot that needs to be going on is the reinforcement of what already exists."
I ask cautiously if she could give me a rough idea of what already exists.
"Oh, sure. It's the Rehabilitation Act of '73 and amendments in '74, and that included Section 504 and 503 and 502 and 501 under Title 5 of the Rehab Act, which is the anti-discrimination and affirmative action provision for the federal government and federal contractors and recipients of federal funds. And I left in December of '75, and the Education for All Handicapped Children Act had been passed, and it was just on its way to implementation, so that was finished." She rattles these numbers and laws off breezily. I am reeling, and mumble something about looking it up.
The famous "504," which people around the CIL refer to a lot in passing, is really just a paragraph. Congress declares, "No other-wise qualified handicapped individual in the United States. . . .shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal funding or financial assistance." This is the basis for regulations requiring adjustments in transportation, education, and employment systems and practices.
As Judy says, the handicap is society putting up the stairs. People like her sincerely feel they are addressing themselves to helping society over such handicaps. She is impatient with programs whose sole concern is medical research to prevent future disabilities. "We need a redefinition of healing," she says. "The problems created by other people need to be healed."
And the philosophy of the CIL, which is staffed by 55 percent disabled workers, is: Who knows those problems better than we do?
So they bear up, quoting "504" and dealing with problems as small as getting their shoes tied and as big as able to afford shoes and get to the shoe store. They're all linked, you discover.
A good example of this is that there is a placement center on the premises with an astonishing 77 percent success rate (the Clifornia Department of Rehabilitation places only 20 percent of its clients), but, once a disabled person has hurdled the prejudices of employers problems of getting to work, he or she may not be able to afford to have a job.
As soon as anyone gets a job, his or her benefits from the government, which pays for the services of physicians, and attendants and for wheelchairs and repairs, are dropped. This is because the Social Security Act defines a disabled person as unable to participat in "substantial gainful activity." Which is fine if you earn enough to meet all your costs. But, according to Greg Sanders, legislative liason and Social Security issues specialist, "The common criterion is: If you've been earning a gross income of $280 a month, you're able to work, and you aren't legally disabled. And the federal government pulls out all its money. Every state except California, (which keeps paying Medicaid and attendant care bills), with one minor exception in Louisiana, will also end all your state services.
"So you obviously either earn a gross income of under $280 a month, or you make that tremendous leap where you can totally replace a net $1,000" a month, as a starting take-home salary -- not a lavish amount certainly, but rare for one's first month on a job. Yet this is what he estimates it costs in medical, attendant, and equipment fees as well as ordinary living costs to keep a "severely impaired" person going.
"When we say $1,000 a month, we're not saying people have an income of that amount; they have a need of that amount. If they go to work, or if they indicate ability to work, even by providing a volunteer service. . . they're jeopardizing all those services."
Greg Sanders, a handsome, burly-looking man in a blue turtleneck and shoulder length blond hair, speaks softly and calmly, listing these Catch-22's for, no doublt, the umpteenth time. There's no irony in his voice, probably because the inequities seem so obvious he doesn't see the need for it. He's very confident in his legal knowledge, which he comes by in a different way than Judy Heumann.
"This kept coming up when I was a direct service counsellor, so I decided to change the law," he says, and the five years he's spent doing it seem to have given him enough patience to explain even to one uninitiated in the problem is. Sitting in his wheelchair describing HR 3236, a bill which has made it to the Senate, partly because of his support, and which, if amended and passed, he feels will correct these inequities in a revolutionary way, he's an illustration of his own point; that disability doesn't mean inability.
More important, he served as an illustration in Washington. "A whole lot of congressional legislation changed last year, when suddenly Hale (Zuykas, another CIL activist who is, like Mr. Sanders, a quadriplegic) and I went into their offices, and they said, 'Well,. . . of course you guys are disabled,' but here we are employed. And they realized that (because of) social changes, and a lot of medical changes like. . . electric wheelchairs, the medical technology, and the attitudes, there's no such thing as a total disability any more.
"And there's the other side of the coin, the side that we've been pushing the hardest: We don't want to be dependents. We want to be workers. We've got a tremendous potential to, if not eliminate, substantially reduce our dependence on public assistance. And if we eliminate that need to make this tremendous leap all at once, we could probably gradually work our way all the way out of the system."
Thus, HR 3236. "The central policy change is recognition that the severely impaired can work, and that some changes can be made within the existing structure that don't take five years of study," he says.
The bill has been held up, though, because it became "the vehicle for some Congress persons to attach their opposite bias, and that is, 'There are all these people on social security, disability insurance, or supplemental security income that are malingering. And the way we get them off the program is: we lower benefits. . . ' And because of that, both issues got combined into one bill. That's really kind of a jam. It prevented passage of the bill last session. We're sure it'll come up in the spring. It's really just waiting for action on the Senate floor.
"Senator (Howard A.) Metzenbaum (an Ohio Democract) is going to introduce an amendment to delete the majority of the negative factors."
Since we talked, the Metzenbaum amendment was lost in a tie vote (47-47) in the Senate. Without the amendment, HR 3236 has some positive aspects, in the view of Mr. Sanders and the CIL, but the negative factors are still there most notably, a ceiling which would limit benefits paid a disabled person to 85 percent of what he made before becoming disabled. The Carter Administration called this an incentive to get the disabled back to work, but statistics show that people with a low benefit don't return as easily to the job market, Mr. Sanders contends. His response to the defeat of the Metzenbaum amendment: ". . .I'm disappointed. Congress rally doesn't understand disability at all."
He adds that the CIL now can't support HR 3236, because, even though it offers marginal improvements, to do so would be unfair to those disabled people who could not work.
Mr. Sanders had hoped passage of the bill would "initiate a jump in the Independent Living movement," and consequently in the awareness of the public.
"In the '50s and '60s it was popular to do studies on racial involvement in the work force. As soon as blacks entered the labor market, the sterotypes disappeared," he says, and he expects the same change to occur when more of the disabled are employed. He still sees a change coming, but the failure of the amendment will slow it down.
"It will be hard to keep people's steam up," says Myrl Weinberg of the Association for Retarded Citizens, which had been lobbying for the amendments. She says the amendment's supporters see no way to put in a new amendment at this time, but points out the HR 3236 includes a provision for surveys to study the effects of the new policy. She hopes the results will be heeded.
Mr. Sanders still feels Congress is beginning to get a new concept of what disability is. He works as a volunteer for CIL now, living off his state benefits. I asked him if, when the law changes, he will get a paying job.
He wasn't sure. He admits he's getting addicted to politics. This kind of involement is a turnabout for him.
"In 1970, I broke my neck in a skiing accident. I went back to school and joined the disabled students." It was there that he met up with Mr. Roberts. Mr. Sanders bills himself as "the policy specialist" behind Ed Roberts and he's overthrowing an old stereotype right there -- about himself. "Until I broke my neck, I was a ski bum. I was living in a cabin by myself. I never thought I'd live in a city, and I never thought I'd be in politics," he says.
Passing a law is one thing; implementing it is another. The bill Mr. Sanders is talking about, with its aim to lessen the dependence of the disabled on the state, has had a hard enough time. The laws that require the state or states to spend money to improve the lot of the disabled are in danger of being compromised andd watered down in these days of tax revolt.
"The laws that have been passed over the last few years have been pretty broad," Judy Heumann will grant, but "my hypothesis is that when nondisabled people recognize that there is money that is going to have to be spent in order to allow equality for disabled individuals, some of the liberals who liberally felt they had to support the cause will all of a sudden turn around and start talking about how we're asking for too much too soon, and really, isn't separate but equal OK for us? That's what's interesting about the New York Times article."
She's referring to a recent editorial entitled, "Must Every Bus Kneel to the Disabled?" The editorial quotes figures provided by the Congressional Budget Office that project the cost of transportation on an adapted bus (probably by putting in lifts for wheelchairs) at $38 a ride. The Budget Office projects a cost of $8 a ride on special vans for the disabled. The Times question the right of the disabled to use the transportation system if it costs the public $38 a ride to accommodate them.
"The handicapped have a right to respect and to reasonable assistance, not to an unlimited claim on public funds in the name of a dubious principle," the editorial concludes.
"It talks about the disabled people in terms of thems and those," Judy Heumann says. "If it were being written about nonwhite individuals, one would call it racism. We would call it handicapism."
The editorial, coming from a paper which has given fair news coverage to this issue, is alarming to Kitty Cone, as assistant director of community affairs working on transportation issues. For one thing, she claims, the statistics are wrong. And, like Judy Heumann, she fears for the effectiveness of the law in the face of what shee calls a "Proposition 13 mentality." She fears government reports like that of the Congressional Budget Office, which she terms "propaganda generated to attack the 504 regulations," will result in some kind of legislation limiting the responsibility of bus companies to accommodate the disabled.
The American Public Transit Association, which includes all of this country's local transit companies, had, even before the report came out, filed suit against the Department of Transportation's 504 regulations that would make local operators reponsibile for providing mass transit for the disabled an expensive proposition no matter how you look at it.
"We know that's a farce," say Kitty Cone, because, she feels, local transit companies won't or can't take the initiative to put lifts for wheelchairs in buses andd elevators in subway systems, and will turn to some sort of special vans (called "paratransit") for the disabled, which usually aren't as good as the bus system.
Last week the suit was decided in favor of the Department of Transporation. Federal District Judge Louis F. Oberdorfer upheld the authority of the Secretary of Transportation to define the regulations needed to bring the transportation system into compliance with 504. The judge said that it is up to Congress to evaluate the technical and economic questions raised by the regulations, not the American Public Transit Association. Congress is studying these questions now.
The Budget Office report finds paratransit much cheaper than buses fitted with lifts ($4.4 billion versus $6.8 billion), but Kitty Cone suspects the low figures for paratransit are based on the limited services now available -- about four or five rides a month. "Now, who can do what with four or five rides a month?"
She knows whereof she asks. She lives in Oakland, which has a "Dial-a-Ride" system, run on a subscription basis which she can use only in Oakland. To get to work in Bereley each day, she has had to hire a van and driver. Besides being inconveniet, she says, the paratransit system isolates its disabled riders from the rest of the population.
"Come on, Kitty," says Greg Sanders, laughing, "Didn't you ever take a date on Dial-a-Ride?"
"I did," she answers promptly, "and we got lost in the hills and got to the moive half and hour late," using, one might add, one-fourth of the month's allowed trips, which had to be arranged 24 hours ahead of time.
The statistics on the cost of making the bus system accessible are just as skewed, she feels. "If you take only the 500,000 who are in wheelchairs (the CIL estimates there are 13 million Americans unable to ride buses) and you figure that into the $6.8 billion over a 30-year period, that comes out to one ride per month. Do they think people are only going to take one ride per month?. . . If you figure two rides a day, even, that's going to cut the (per ride) cost way down."
The Budget Office Reports does indeed figure an average of only four or five trips a month, according to a spokesman, who contends that this is a good estimate because many disabled people have access to cars, either as drivers or passengers. The figures quoted in The New York Times editorial and in other news articles are, however, oversimplified, according to the spokesman. He said the figure of $38 per trip on refitted public transportation is arrived at by counting only the severely disabled, who could not have used the bus or train at all before. If you include extra travel for disabled people who can use the present system, but with difficulty, and who would benefit from the lifts, the figure goes down to $10 a trip. Furthermore, the cost per trip after the initial money has been spent to buy the lifts goes down to $7.38.
Vans, taxis, and specially fitted cars are cheaper, but the margin narrows after capital investment, because there is the continuing expense of paying extra drivers. So after buying the vans, it would cost $4.48 per trip to transport the disabled in a paratransit system.
The figures lead to the conclusion that paratransit would be more appropriate , Kitty Cone says, "and I don't even think it's honest, because I don't think that they would develop a system that could be an equivalent service."
But more important, the figures mean little when you look at the whole picture from the point of view of a disabled person, she says.
"You can't isolate out curb ramps, or making buildings accessible, or making universities accessible, or transportation, or whatever. You have to look at the whole picture."
When you do, she says, you find that "billions of dollars a year are spent on maintaining disabled people in a dependent situation because society isn't accessible to us. And if we could use the transportation system, and if we could get the same education, and if there weren't discrimination and unemployment, we would be out there paying taxes and contributing. . . .It makes a lot of sense for us to be functioning members of society. . . "
Kitty Cone's soft-spoken, almost timid manner, flutty blondish hair, and the aforementioned upright bearing in her wheelchair belie an intimate knowledge of the inner workings of buses ("Lifts are a brand new piece of equipment well, not really, they've been having lifts on garbage trucks for years. . . ").
She must be a formidable -- and ladylike -- figure at board and negotiating meetings of AC Transit, Berkelely's bus company, where she and associates have become regulars. She states her case gently, but, like Greg Sanders, the way she goes about it is argument enough for her cause. Her diligence makes you wonder how anyone could resist making it easier for people like her to get to work, whether in the name of equal service, or just because she would do a thorough job whatever it was.
She has had some encouraging experiences. Having been sued twice by the CIL. AC Transit has come around. A couple hundred new lift-equipped buses are due this summer.
And she was instrumental in getting the people of Oakland to use community development grants to make curb ramps. Having gotten nowhere with the Department of Public Works, she began going to community meetings and explaining the needs of the disabled. The communities, almost without exception, voted to spend the money on curb ramps. And she was elected to one of the community boards, which has made curb ramps its No. 1 priority.
No doubt her persuasiveness comes from her conviction that accessible mass transportation is not a "dubious principle." And her unquestioning faith that everyone will come around to the CIL point of view, Proposition 13[TEXT ILLEGIBLE]
CIL is, at the core, a civil rights organization. All of its efforts, says Judy Heumann, are aimed at encouraging "disabled people to use the system. By that (I mean) you work on getting laws passed, but then you also work to make sure that when those laws are not being implemented, you sue. You file complaints. You do everything you need to do in order to have the system work for you."
To CIL, suing has become a way of asking for what it feels are normal privileges. Nowhere is this credo being more diligently carried out than at the Disability Law Resource Center across Telegraph Avenue. "It's a new area of the law, and it has to be handled carefully. You want your precedents set right," says Paul Silver, directing attorney. "We're educating the judges and the public. People don't realize the law exists, or that they're in violation of the law. Sometimes to us the discrimination seems so blatant that we're aghast people don't see it as such."
The laws would be implemented faster, says Ann Jennifer M. Smalldone, a paralegal assistant at the center, "if all the judges and lawyers sat in wheelchairs for 24 hours without getting out of them." Beyond that, she's crossing barriers in her own way. "Socially, there are only attitudinal barriers. You need innovative thinking. . . like wheelchair dancing. You know, you can dance in a notwithstanding, seems to be self-fulfilling.
"When people have accurate information and are in contact with disabled people who are explaining why ramps are necessary, or why accessibility in any area is necessary, the people out there are willing to see their tax money spent for that. I think that people are basically humane. They like to see everybody have whatever services they need. But it's just plain cost effective to get people out of institutions and get them functioning in the community."
Cost effective or not, "the bottom line to us is that it's a civil rights issue. We have the right to ride the public transportation system."[TEXT OMITTED FROM SOURCE] wheelchair."
A.J., as she is called, and her friends jitterbug in wheelchairs, with either disabled or more conventional dancing partners. There's a disco they like to go to in San Francisco, called Silk's. "It's very friendly," says A.J. "The bouncers carried us in. It's nice to be carried in by a bouncer instead of out, she says with a modest chuckle.
The disabled rights movements is about getting into the mainstream of life. The Rehabilitation Act was passed a year after Ed Roberts started CIL, three years after the Physically Disabled Students' Program formed up. The regulations based on this act and the interpretations just now being made in various of independence which led him and his rebellious wheelchair-bound schoolmates to demand an education and then to educate each other about their needs. But then independence is hard to define. It has something to do with being able to go to law school but also quite a lot to do with managing to dance.