Ragtime

[Headline] Coming of age in the movement

ADAPT has come of age. That was apparent in Chicago this past May, when the group took its protests to the home of the American Medical Association. To diffuse the issue, spokespersons for the AMA had met with ADAPT the Thursday before the protest, trying unsuccessfully to dull the edge by insist-ing that it agreed with ADAPT's demands.

AMA spokesman Arnold Collins would later tell the Chicago media, as nearly 300 ADAPT activists held its headquarters at State and Grand hostage, that the trade association of the nation's doctors had no quarrel with the group. Of course, said its director of geriatric health, Joanne Schwartzberg, it was true that the AMA would not be taking before its membership ADA.1)7 s demand that doctors divest themselves of all financial interests in nursing homes and institutions.

The issue is only partly about getting the AMA to change, though and those who do not understand that do not understand that, at its most basic, ADAPT is about power the power of disabled people to change society. It may be this power that will eventually fuel the change in the health care debate in this country.

"Part of the health care reform agenda in this country must be to define "health" in ways other than the medical model," says Gordon Bonnyman, a lawyer who works with Medicaid issues in Tennessee and who watched, somewhat amazed, as Tennessee ADAPT spearheaded a direct-action effort that saved the state's $1.1 billion Medicaid pro-gram this past spring (see story, page 16). "The people who are best able to carry that message are the people in ADAPT. They say, 'don't tell me I have to go into a nursing home and get 24-hour-a-day care when all I want is somebody to provide attendant 'services' — not 'care.'

"A lot of people are still locked

[boxed quote] "A movement is driven by anger and its quest for liberation. And that's what ADAPT is."

[text continues] into the mindset that 'health care' equates with 'medical," he continues. "If we take a lurch in the wrong direction — and the smart money would say we're more likely to go in the wrong direction than the right one — it will foreclose some options for the disability community," Bonnyman continues. "Nobody else is going to attend to that agenda if the disability community doesn't."

ADAPT realizes this, at least on some level. "Chicago was our wake-up call to the AMA," says ADAPT's Wade Blank. "And Sullivan is just a symbol." What ADAPT hopes to achieve, he says, is a national understanding that "every citizen has a right to in-home services if they have a function limitation. Period."

Though it may seem a loosely organized ragtag group, ADAPT probably understands more about power than most groups today. This stems in part from its own understanding about what makes people commit to a cause. The people committed to ADAPT give the group its resilience and strength.

ADAPT's Stephanie Thomas was explaining this when she said, "I know when I go out on an action, I like Rick James being next to me; I like to see Paulette going down the middle of the street. That's a leadership thing to me. It helps me move; it helps me do what I need to do." The power comes from other people being with you, she says. "I wouldn't be able to do it without the other people. I get a hell of a lot from them.

"That's a kind of leadership that's not valued very much in our society," she continues, speaking to other ADAPT organizers. "And I think that sometimes we don't recognize it in ADAPT. That's one of the things that gives us strength, though. It's all of one piece; all a cloth that is woven together. We need leaders and people up at the front of the room, and people to talk to the media; but that is a small part, and it ignores the biggest part of what makes ADAPT ADAPT, of what makes us work — and work more confusingly than other organizations."

32 THE DISABILITY RAG JULY/AUGUST, 1992

How ADAPT works does confuse people. If its leadership seems concentrated, the perception is misleading — and it has mislead police trying, unsuccessfully, to defuse ADAPT demonstrations by picking off the perceived leaders. "They seem confused when that doesn't work, and we just keep on," said one by-stander who watched Chicago cops try just that tactic to little avail.

Blank put Thomas's remarks into context. "I'll tell you what the real secret of ADAPT is. ADAPT is not in its structure — because we have a lot of different structures. The secret of ADAPT is the people in its leadership roles." Blank talks about people in ADAPT being "driven by anger and an understanding of what to do with that anger."

"If your group is not having success in its local community, it's not, in my opinion, because of its structure," Blank tells one group. "It's because it hasn't gone to the bare bones of the issue.

"You can have one person go to an inaccessible restaurant, and lie down in front of it. And every disabled person in the community will see that. That will ring a bell in them. And that's how they'll come to you, by the magnet of you saying `this is what your anger is, too. I'm acting out your anger for you. Here's my number. Call me.'

"And you'll find that people will call you. It won't be the people who work for independent living centers, or the quads who work for Easter Seals. It will be the people who have absolutely no voice at all. If they reach out, grab `em when they reach out. Say, 'come down tomorrow and lie down there with me.'

"That's what a movement is. That's the difference between a movement and an organization. A movement is driven by its anger and its quest for liberation. And that's what ADAPT is."

That power was first apparent to many in the movement who had taken only scant notice of the group they often termed "militant" and "fringe" when over 100 ADAPT protesters massed in the Capitol Rotunda in March, 1990, to demand the leadership of the U.S. House of Representatives move swiftly to pass the Americans with Disabilities Act, which was at the time in danger of being substantially weakened by amendments. ADAPT members held a "chain-in" — locking wheelchairs together in the Rotunda — the likes of which had never been seen from any protest group; 104 were arrested that day (see the May/June, 1990 Rag).

As a result of that show of power,

[boxed text] "Unless we show the Jerry Lewis images aren't the only ones out there, we will continue to be bound by them."

[article resumes] many now concede, the law passed essentially unscathed. Indeed, in a number of materials put out by middle-of-the-road organizations chronicling their work in passing the ADA, the photos that accompany the text are of ADAPT activists.

ADAPT cut its organizing teeth on the issue of lifts on buses. Before ADAPT began its ten-year fight with the American Public Transit Association, the trade lobbying group for the nation's public transit operators, the law requiring lifts on buses had been defeated in court and replaced by "local option," which ADAPT called "the ol' states' rights ploy all over again."

Before the ADA had passed, ADAPT had won court battles requiring lifts on buses. The ADA public transportation requirements are strong and took effect immediately, unlike other sections of the law.

In taking on the issue of attendant services, ADAPT has gone back to its roots, said Blank. The group started in Denver a decade ago when Blank got people out of nursing homes. That story was chronicled in the made-for-TV movie, "When You Remember Me."

The current battle will be harder than the lifts-on-buses fight. The AMA and the American Health Care Association, trade group of the nation's nursing home operators, won't hesitate to play hardball. That was apparent in May in Chicago. Sources say the AMA spent weeks trying to figure out "who ADAPT was" and how they operated, and made efforts to keep the group's actions out of the paper and off television screens. That failing, they tried to diffuse the issue with their "we support their demands" ploy.

The battle may be harder. But ADAPT has seasoned, too, impressing others with skill that many other social change groups today only wish for. Chicago Tribune reporters Christine Hawes and Rob Karwath wrote that ADAPT was "extremely skilled in using the media" and called them "a group of vociferous activists savvy in street action."

No other protest group in the last few years had gotten as much cover-age from Chicago media, said Ora Schub, a member of the National Lawyers' Guild in Chicago, who noted that protests against the Gulf War and more recent anti-abortion protests went mostly unremarked on by the city's press. In contrast,

JULY/AUGUST, 1992 THE DISABILITY RAG 33

ADAPT garnered substantial news coverage every day of its action.

•

The pressure for change, for "de-medicalizing care," is coming from many quarters. Though ADAPT is leading the street fighting, groups like the World Institute on Disability and the National Council on Independent Living have long worked to forge a national attendant services policy. Several health care reform bills now in Congress contain an attendant services component. None of the bills is likely to pass and the chief sponsors of two of them are retiring from Congress. Long-term health care reform advocates like Sen. Edward Kennedy (D.- Mass.) know the attendant services rhetoric; Kennedy held hearings last sum-mer on the issue.

Blank believes will happen ultimately — and what ADAPT would like to see, though their public protests hammer at Sullivan to redirect 25 percent of the Medicaid budget and for doctors to "reduce nursing home referrals by 25 percent the first year" is to get a law passed that will establish attendant services as a right for anyone who needs it.

What this does is put the issue of attendant services into a context of rights. Whether that is where it belongs is something some people like John Hockenberry (see story, page 30. ) question. But that ADAPT can succeed in doing it no-body in the movement is much questioning anymore.

•

ADAPT may only be the most visible manifestation of a kind of sea change which seems to have occurred in disabled people and their rights movement in the past year. One can find manifestations of it everywhere.

When National Public Radio re-porter John Hockenberry found himself so angry that he had been thrown out of the Virginia Theater in Manhattan before a performance of "Jelly's Last Jam" this past April that he found himself seriously considering torching the place, some-thing had changed. Hockenberry, who uses a wheelchair, decided in-stead to write an op-ed article, which appeared a few days later in the New York Times. He did that, he said, for the pragmatic reason that that was the only way he figured he could ever get to see the show. He figured, rightly, that, once it appeared, management would feel bad about hav-ing thrown him out for insisting that ushers carry his chair up to allow him to sit next to his date (something the manager said they "were not permitted" to do. But, his consciousness raised by that act, he realized, when the offer of free tickets came, that he could not let himself accept them.

[boxed text] If you try to live the independence model and pretend everything is getting better, you end up denying reality, says John Hockenberry.

Larry Carter, who is involved in the animal rights movement, has felt the change, too. A poster child him-self for the United Fund in 1972, Carter said he had become activist only recently; and that seeing poster child techniques used to support an-imal research — ("where people say, `you don't want to be like that!' ") was his wake-up-call. "Unless we are able to tell people that the Jerry Lewis images aren't the only things out there, we're going to continue to be bound by those."

To Carter, the sea change has to do with what he calls "in your face" activism. He, like others, is realizing that "a quick way to do that is to be aggressive, to be, assertive, to not take it any longer — to be in peoples' faces, plain and simple — because that's not the image that people associate with disability."

•

Why the sea change? Why the sense of power? Is it because the Americans with Disabilities Act exists? Hockenberry is frustrated that rights laws are needed. The "civil rights construct" as he calls it, "encourages an exclusively adversarial notion"; that instead of working on "outcomes," laws like the ADA put disability issues, deci-sions on how to make communities accessible into what he calls "litigation mode." He finds this frightening. As long as the debate is focused on rights, he says, "the disability debate slides into the same kind of face-clawing, self-immolating sorts of adversarial conflicts and meaningless debates that have characterized gender and race issues in America."

Even if that's true, it appears that the framers of the Americans with Disabilities Act were on target when they recognized that the ADA was needed as much to make us sense our right to inclusion as it was to make a statement of Congress sanctioning that inclusion.

And if that's true, this power in the wake of the ADA is something that's permeating many disabled people on many levels; it's not just something that has come through ADAPT. Still, ADAPT seems its

34 THE DISARM ITY RAG JULY/AUGUST, 1992

most visible manifestation, a place where it can incubate and be nurtured.

Hockenberry thinks "there are profound disincentives to mobilize ing as a movement." One of them has to do with the fact that clips are taught that "if you're angry, you're dysfunctional." But another, he believes, is that many disabled people "just don't think they have anything in common with each other." He recalls a recent trip to a "physically disabled ski festival." "They had a big lobster feast at the end, and damn if the arm amputees didn't sit with the arm amputees, and the leg amputees sit with the leg amputees, the paras with the paras and the quads with the quads, the blind with the blind, the deaf with the deaf all of them sitting there tearing limbs off lobsters and eating them.

"And I realized, `that's it. There's no "move-ment" in this room there's a lobster feast.' "

What Hockenberry saw is what most of us still see when we look across the spectrum of what we, perhaps wishfully, choose to call the "disability rights movement." Despite the power some of us are beginning to identify, other people have yet to feel it.

"I was caught in that trap for a long time, thinking that the disability in me was something I had to get away from," says Carter. That, he says, comes from "the whole telethon thing — that looking for a cure; that stuff Paul Longmore says, that we're accepted by society to the ex-tent that we want to be 'normal.' "

Carter now says of his recent change in attitude, "it has been a great source of strength for me to say, `this is who I am. And I have cerebral palsy.' "

Carter says he's not looking for a cure. "Not looking for a cure" is another sea change that has occurred with many disabled people. Carter says a cure "is not anything I need to make my life complete — and there's the assumption in society that this is what I need.

"When people say, 'if there were a cure for cerebral palsy, would you take it?' my question to them is, `what would I have to give up?' And then, if I would have to give up the understandings and the insights though it hasn't been easy a lot of the time — then they can have their `cure.'

"And this is something I wouldn't talk about for a long time, because I myself didn't understand it, didn't know if other people would under-stand it. But I identify myself as

[boxed text] To Carter, the change h to do with "in your face activism.

[text continues] someone with cerebral palsy. It is part of my identity. You take away that, and you take away a part of me."

Getting to that understanding "has been quite a process," says Carter; a process that he thinks a lot of people in the disability community haven't yet done; that their disability is something they have not yet "come to embrace. "

You've got to come to a point where you say, 'yeah, this is it.' And be proud of it," he says. "Until we do that, we're not going to have the empowerment, we're not going to have the confidence, we're not going to be able to accept ourselves and therefore push for the changes that we require. Until we feel that sense of pride, we're not going to feel on some level that we deserve rights."

The mason this is slow in coming, and still doesn't exist for the majority of us, Hockenberry thinks can be attributed to the rehabilitation system and its focus on "independence" as the route to returning to "normal."

"Rehab teaches you to be independent — but in a ritualized way," he say. Don't live too far from the mall or be a computer programmer. "Choose your ritual for independence, and then pretend it's true independence, that it isn't a cage. Rehab teaches you to never go near the edge of the cage" — and then you'll behave in a way that lets you pretend the cage isn't there.

The problem, says Hockenberry, is that "if you take them at their word on the independence question, you're going to get nothing. It's a lie."

Like it has done with African Americans, Hockenberry says, the system values "the person who copes, individually, amidst the adversity." This was the "value you were taught to have," he says: that of a person who copes. "You were allowed, intellectually, to sort out the egregious abuses of your freedom from the silly ones — what you weren't allowed to do was to question the fact that you were committing yourself to a system that required you to live near a mall."

Society gives you strokes for coping, says Hockenberry, and it will say you have courage. But you should not make the mistake that this had anything to do with you having courage. It has to do with

JULY/AUGUST, 1992 THE DISABILITY RAG 35

nondisabled people's need to be told everyone has courage, he says.

"The biggest joke played on me," he says; "is that I thought that by accepting no limitations, I'd live in a world of no limits. And just the opposite has happened."

For a long time, he says, he believed there was no comparison between his life and the lives of "op-pressed people." "I thought that what essentially defined me was not the disability, but my background and talents — and to assume that I had something in common with African Americans was to deny them their unique history. And so I left it alone." This, he says, "is the classic crip reason we don't get involved in activism."

He tells of working at a home for developmentally disabled people where everyone would insist, "we are people first!" Hockenberry says he thought, "that's the classic rehabilitation model: we are`people first,' as though deep inside us there's this 'person.' "

In America, what this really means is "that inside everyone there's this normal white person,"he says.

Now inside me I actually could find a white person," he says.
But other people didn't see him as normal, he goes on to say. Being "convinced that my wheelchair wasn't part of me, and that deep inside I was `just a person,' " didn't change anything; in fact, it made things worse: "Because in this inane struggle to go here, go there, and do everything" — proving that he was "just a person" "I was denying actual reality."

If you try to live the independence model and pretend everything is getting better, "you end up deny-ing most of your existence," he says.

Hockenberry has come to these realizations only gradually. But they're realizations more and more disabled people are reaching. They are finally allowing themselves to see the walls of the cages, maybe for the first time.

These explanations go a long way toward explaining the strange dance occurring between Jerry Lewis and his Orphans, led by Cris Mathews of Chicago. Mathews, who is the first to admit her group is loosely orga-nized and small, finds herself baf-fled at the effect last year's protest of the Labor Day Telethon continues to have — most of it, truth be told, stirred by Jerry Lewis and MDA themselves, who refuse to let the

[boxed text] These explanations go a long way toward explaining the strange dance occurring between Jerry Lewis and his Orphans.

[text continues] debate die and act in the true para-noid fashion that make them such perfect targets.

Case in point: the first that Mathews and her Chicago cohorts even knew that Lewis had planned a trip to Chicago last spring was when the Chicago Sun Times columnist Iry Kupcinet wrote April 17 that "Jerry Lewis is cancelling all personal appearances [in Chicago] because of the picketing and physical attacks by Jerry's Orphans, a dissident group that is bitterly critical of his alleged patronizing of disabled children." Lewis had coincidentally planned to be in Chicago at the time of ADAPT actions; no one in ADAPT or Jerry's Orphans knew anything about it.

The Tuesday before ADAPT was due in Chicago, Lewis had MDA officials and some "Jerry's Kids" fly to Denver to meet with ADAPT in a misguided attempt to persuade them to like the group, an attempt that could do nothing but backfire.

ADAPT had had no intention of picketing Lewis's Chicago nightclub act — mainly because they didn't know it was happening. If they had known it, it's still doubtful they'd have done much, since their efforts were aimed at other
targets. But MDA's fear of the group seems almost palpable.

This is power.

Bonnyman explains the power this way: "ADAPT says,`we're going to name the evil. We're going to point a finger. And we're going to stay, and speak truth to power, as long and as loudly as we need to. And we're not going to be bought off.' "

Bonnyman says ADAPT is skilled at "taking what people perceive as a weakness and using it as a strength. ADAPT is very sophisticated about understanding that people in wheel-chairs protesting is a very powerful image."

If ADAPT are proving to be the wheels of the movement, rolling over opposition, then surely the telethon issue, with activists rolling out under the name "Jerry's Orphans," commands its soul.

In our next issue:The Jerry Lewis thing: what's so electric about it?

36 THE DISABILITY RAG JULY/AUGUST, 1992

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The Disability Rag Mary Johnson

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