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Accueil / Albums 17
Date d'ajout / 2020 / Septembre / 20
ADAPT (727)
Reades Chicago May 29, 1992 Neighborhood News Insert Text Box: Prisoners of bureaucracy: state keeps the disabled in nursing homes at twice the price of home care. The reason? Budget cuts! Photo by LLoyd De Grane: A man, seen through the spokes of a manual wheelchair wheel, sits in a sporty manual wheelchair wearing no shoes. Looking at the floor thinking, he rests his chin on his fist. He is in a cinder block room with a crucifiction on one wall behind him, and a Virgin Mary statue in the corner on his other side. Caption reads: Louis Summers article: By Ben Joravsky It took Louis Summers, who is deaf and physically disabled, more than three years to prepare himself to live independently. But it took only a single directive issued by the state one day last February to keep him dependent in a nursing home. The nursing home is in south-suburban Harvey, where nurses and aides are available round the clock. Summers had been set to move to a less costly Chicago facility that emphasizes independent living for the disabled when the stare cut the funding for its home-services program and froze the number of people eligible to have personal assistants. That meant there would be no money to pay for the assistant he would have needed to help dress and bathe him, the cost of which he couldn’t pay himself. So he's still in the nursing home. “I feel trapped,” he says. "I want to get out and become more independent. I want to get job training. I want to get a job. But the state is keeping me in a nursing home where I am fully dependent on the staff." State officials blame the home-services cuts on the rising deficit. Yet it will cost the state far more to keep Summers in a nursing home than it would to provide him with independent health care. “For health and financial reasons it's bad to foster dependence,” says Karen Gerbig, a public educator for Access Living, a Chicago based not-for-profit advocacy group for the disabled. “In the name of saving money the state is actually spending more money. lt doesn‘t make sense any way you look at it." The irony is not lost on state officials, who acknowledge that roughly 4,000 disabled residents have lost the right to a personal assistant since the freeze went into effect in February. By midsummer that number could rise to 5,000. “It costs about $1,200 a month for the state to pay for someone to be institutionalized; the average home oust is about $600 a month," says Melisa Skilbeck, a spokeswoman for the state Department of Rehabilitation Services, which oversees the home-services program. “We are proud of our home-services program. We hope there’s a way to fund it so we can reopen intake." Summers, however, doesn’t want to wait. He was bom and raised in southern lllinois, and he's been in and out of hospitals and nursing homes since 1989, when he was hit by a train. "I was walking along the tracks, and l didn't see the train coming," says Summers, who was born deaf. “l‘ve been in a wheelchair ever since the accident.” He stayed briefly in a hospital, after which doctors transferred him to the Rehabilitation Institute of Chicago. "Louis has a dual disability, so he‘s more vulnerable to being shuffled around the system," says Tom Benziger, an organizer with Access Living who first met Summers about two years ago. “l lost track of him for a while. He was in and out of hospitals. Then I discovered that he was in a nursing home in Harvey." Benziger and therapists at RIC encouraged Summers to think about living independently. Along with other organizations for the disabled, Access Living members have fought to force public-transportation agencies to fit buses with electronic lifts so that people in wheelchairs would not be dependent on special shuttle services. They have also pressed for laws that require access ramps in restaurants, theaters, and other public places. "Disabled people are often marginalized," says Gerbig. "But disabled people are capable of living independent lives if public facilities are made more accessible." One major issue for the disabled is changing federal and state rules so that more money is provided for personal assistants. "l don't need around-the-clock care," says Summers. “I don't need to be in a hospital room all night. I can get training. I can still use my hands. l can work. l‘m not happy in the nursing home. lt's lonely there. Most of the people are older. It’s not the right place for me. I'd be much better off somewhere else where I could be more independent." With help from Benziger, Summers was able to secure a spot in the Silent Co-op apartments on the city's northwest side. Then the state announced the freeze on personal assistants. “I needed a personal assistant to work at least a few hours a day to get into the co-op," says Summers. "But the state said that since I was already in a nursing home I couldn't get a personal assistant. That means I could never get out of the nursing home: It was a catch-22.” Most agencies that provide personal assistants charge about $14 an hour —as Stephanie Renner discovered when her son Patrick was disabled last year after he was shot. “Right now my mother, myself, and Patrick's girlfriend are taking care of him, but it's very hard," she says. “We don't have the money to pay $14 an hour. If I got some assistance, I could pay someone $5 an hour. But the state won't help us at all. All Patrick needs is someone for a couple hours in the morning. Someone to help him get out of bed, get dressed, take a shower, and help him with his bowel program." In addition to its freeze the state also now requires all those who want it to continue paying for a personal assistant to demonstrate every year that they're severely disabled. “I have cerebral palsy, and yet I have to be tested each year to see if I qualify for a personal assistant," says Gwendalyn Jackson, a south-side resident who uses a wheelchair. “I have to prove yearly that I am disabled. That's ludicrous." Many activists believe the freeze and the changed eligibility requirements are first steps toward eliminating all funding for personal assistants. “They want to make people more dependent on nursing homes or their families," says Gerbig. “That's only going to cause more strain on the families.“ State oflicials say they want to keep some funding for personal assistants. They say the changes have less to do with health policy than with the fact that the state owes about $748 million in overdue bills—the reason Governor Edgar called for across-the-board cuts or freezes in government services. “The home-services budget was $69 million for this year," says Skilbeck. "Next year it will be about $65 million—that‘s a 6 percent cut. The governor‘s directive was to do everything we could to preserve people who were receiving care. That means we have to close intake, while maintaining the program for those who already have personal assistants." State officials say that the federal government must share some of the blame for the cutbacks. "The federal dollars that support these programs are provided as reimbursements,“ says Skilbeck. “We can't be reimbursed on a dollar until we spend a dollar. Well, if we don't have the money up front, it's hard to pay for the services. And with the state owing so much money, we don't have a lot of money up front." It would be irresponsible for the state to continue full home-care programs if it doesn't have the money to pay personal assistants on time, Skilbeck says. "You're dealing with an individual who may not get by without a paycheck. A nursing home or an institution has more cash in reserve.“ Advocates for the disabled don’t buy this argument. They contend that state and federal policies are shaped by the powerful nursing-home lobby. “It's easier for the bureaucracies to stay the same than to change," says Gerbig. "We need a whole new way of looking at these things." So far activists have had little impact on the powerful Republicans in Washington and Springfield who shape health-care policy. For months they have asked Louis Sullivan, secretary of the federal Department of Health and Human Services, to set aside a larger portion of medicaid funds for home care. But Sullivan has spurned their requests. He argues that such decisions should be made by individual states. ln early May ADAPT took the issue to the streets, protesting a speech Sullivan made before the University of Illinois here. Sullivan ignored the protest and refused to meet with the group, which seems to be a policy with him. ADAPT members staged another protest at the State of Illinois building, but Governor Edgar also refused to meet with them. “ln the past the governor has promised to meet with us, but he never does," says Gerbig. “So last week we took over the 16th floor of the State of lllinois building. We had about 30 people up there until they shut the power off for the elevator. lt was incredible to see the non-disabled people saying ‘Turn on these elevators-—l have to get somewhere. Why are you punishing us?’ We said, ‘Now you know how we feel.‘ They said, ‘lt’s not my fault.’ We said, ‘Please understand. This is what we go through all the time."' Summers did not intend to take part in those demonstrations. But he was downtown on other business and got swept up in the protests. "The transportation system that brought Louis downtown failed to pick him up,” says Gerbig. “He was in a bind. And he wound up staying overnight at a hotel and meeting a lot of the protesters. He's been politicized by this. His life will never be the same." At the very least Summers hopes the actions will change the home—services policy so he'll be able to leave the nursing home. “I want to move ahead with my life. I don't want to be stuck in Harvey."
ADAPT (734)
Photo by Tom Olin?: A very large crowd of wheelchair users are lined up in rows facing out from in front of the glass headquarters of the American Medical Association. Tim Craven of Tenn. is in front leading a chant. In the group nearest the camera are Allen ___ in a purple shirt, beside him a woman and then Mike Evin and the possibly Tom Rafferty.
ADAPT (735)
[This page continues the article from image 746. Full text is available on 746 for easier reading.]
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45 Arrested as S.F. Protests by Disabled Continue Police arrested a disabled demonstrator blocking doors at the Old Federal Building at United Nclions Plow in San Francisco yesterday. He was among 45 people, many in wheelchairs, arrested during a protest seeking more federal money for home core, rather than nursing home care, for the disabled. There hove been several protests during a convention of nursing home operators.
ADAPT (737)
This story is a continuation of ADAPT 744 and the entire text of thee story is included there for easier reading. This article appears on 744, 738, 733, 728, 724, 748, 743 and 737.
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This story is a continuation of ADAPT 744 and the entire text of thee story is included there for easier reading. This article appears on 744, 738, 733, 728, 724, 748, 743 and 737.
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This is a continuation of the article that starts on ADAPT 745 and the full text is included there for easier reading.
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Photo by Tom Olin?: A huge crowd of ADAPT folks are gathered on the stree and sidewalk in front of the Regional HHS headquarters, a building with ornate lamps on its front. The crowd faces the building and fills the street. Visible are Jimmi Shrode (in the purple shirt) Claude Holcomb (in the forground, hair in braids, with a black and red jacket over the back of his chair. Gene Rodgers (with his back to the building in a grey cap), Frank McGee (in a black Tshirt and ADAPT headband) Tari Susan Hartman (visible just over Jimmi's left shoulder) and dozens and dozens of other protesters. [If you can identify others please contact us so we can include their names.]
ADAPT (741)
[This page continues the article from Image 746. Full text is available on 746 for easier reading.]
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[This page continues the article from Image 747. Full text is available on 747 for easier reading. ]
ADAPT (743)
This story is a continuation of ADAPT 744 and the entire text of thee story is included there for easier reading. This article appears on 744, 738, 733, 728, 724, 748, 743 and 737.
ADAPT (744)
The Disability Rag July/August, 1992 [This article continues on ADAPT 738, 733,728, 724, 748, 743 and finally 737; however the entire text is included here for easier reading. ] Photo by Tom Olin: A policeman holds a wooden barricade while another tries to pull a protester who is lying on the ground by his pants legs backward and out from under the barricade. The protester is holding onto something above his head. On one side a third policeman seems to be coming over and on the other side a man (Frank Lozano) and his guide dog (Frazier) are coming over. Title: On the barricades With ADAPT by Mary Johnson photos by Tom Olin “I am tired of rules and regulations. And them telling me what you have to do. None of them has worked for me as good as being at home. In nursing homes, they put you on sleeping pills to keep you from getting aggravated with what will occur. “You can’t pay —— you don’t have any money to pay an attendant at night, when you’re on SSI. All of these things they’re constantly cutting. I haven’t been in a nursing home for 15 years — and I don’t plan to go.” It's Saturday night in Chicago. Nearly 300 ADAPT members have gathered in a meeting room in Chicago’s Bismarck hotel, getting ready for the group’s May 1992 assault on the Windy City. People are telling their stories. Many are there because there was a nursing home in their past — or they don’t want one in their future. The next day the group will swoop down on the University of Chicago's commencement exercises. U.S. Department of Health and Human Services Secretary Louis Sullivan is speaking, and some in the group can't believe their late-breaking good fortune at getting another shot at hassling the Secretary who has steadfastly refused to meet with them to discuss redirecting Medicaid funds to in-home attendant services. A planned Mother's Day March to a graveyard — to symbolize how this nation kills its mothers in nursing homes — is cancelled. “I was never for that dead stuff anyway," ADAPT organizer Mike Auberger says. The week's events are debated. Somebody wants to know why they see police taking photos of them whenever there's an ADAPT action. There's an attorney available for people who get arrested, the group is told; they‘re given his name, as well as ADAPT organizers to contact if they get arrested. “I’m telling you — and it’s the most important thing I'm gonna say." Auberger warns the group. “have your medications with you if you're going to get arrested. Have ‘em labelled. No pill boxes; bottles. Make sure it has your name on it — nobody else's. Make sure there’s no illegal substances on you; no weapons. ‘Cos this is going to follow us down the road.” As it turned out, Chicago was mild compared to Orlando's confrontations last fall, in which nearly all ADAPT activists were thrown in jail — some in solitary confinement — for the week. In Chicago, only 10 people would be cited and fined in Monday’s confrontation at the HHS regional offices in downtown Chicago, and only 4 police-tagged “leaders” arrested the next day at American Medical Association headquarters; all were released at day’s end. Perhaps the national outrage in the wake of the Rodney King beating acquittal in Los Angeles a few weeks before had made Chicago police, considered to be some of the most brutal, cautious. The University of Chicago graduation turns out to be a beautiful Chicago spring day. Police and Secret Service are allowing ADAPT members into the auditorium without any hassle. Later, though, Jim Parker is asked to leave. He protests loudly as police haul him out a side door: “Why am l the only one being asked to leave?” About that time Tim Carver of Tennessee simply rolls off into the men's room, unnoticed, to wait out the sweep. Several ADAPT members unfurl a large FREE OUR PEOPLE banner over the wall below their seats, off in the “handicapped section" where the Secret Service have relegated them. Big burly Secret Service men with their walkie-talkies run over quickly and reach down to pull it up. Bob Kafka and Allen Haines are as determined that they won’t succeed. A kind of arm wrestling match ensues with Kafka and Haines holding firmly to the banner to keep it hanging over the wall where it forms a backdrop to the stage area where Sullivan will be speaking. The Secret Service have the advantage of leverage; they’re taller. One especially burly guy finally wrests the pole with its banner away from them and with a contemptuous jerk, flings it high into the bleachers behind them. “Clear ‘em out," mutters an all-business police captain. Four cops to a chair seems to be the agreed-on method of removal. Paulette Patterson of Chicago is removed this way. Over on the side, Anita Cameron and Jim Parker, back in and out of his wheelchair, and Frank Lozano, minus dog Frazier, are scooting down the steps on a side tier, trying to make it down to where Sullivan will speak, but they're caught and removed, too. “Get as close to the doors as possible,” says Bob Kafka to the other activists who have now been ejected from the back of the building. With police blocking doors. clots of ADAPT move to every entrance. Well, almost every one. Jean Stewart and Eleanor Smith use Stewart's crutches to pound on the metal doors, trying to create a disturbance inside, as the graduation ceremonies begin. Inside, though, the noise is barely audible. Nancy Moulton of Atlanta is sitting quietly on the ground, leaning on a door, with her guide dog Nan beside her. “Get up,” say a blue shirted Chicago cop. Moulton doesn‘t move. Nan rests her head on Moulton’s leg and rolls her eyes up at the cop towering over them. Now there are 4 Chicago cops and one guy who must be from the Secret Service hanging over Moulton and her dog. “If you don't move, we’ll have to grab you. and the dog will attack,” the cop persists. Still Moulton sits. “If you’re concerned about the dog, move!” the cop barks. Moulton gets up, worried that the cops will hurt Nan. While some block doors, others pass out leaflets to latecomers. The chants of “hey hey, ho. ho, nursing homes have got to go!" change to “We want Sullivan!" The police have barricaded the exit with blue sawhorses that read “police line." A pickup truck from the University's facilities management is unloading yellow university police barricades. A lady inside the back of the auditorium, hearing the faint chanting coming from outside, mutters, “they're not making friends." She‘s with the university. The University of Chicago is so large that commencement is held in two shifts; a morning one and an afternoon one. Sullivan has finished speaking and the crowd is emerging from the pavilion. They walk down the long fence of police barricades, while ADAPT chants and hands them leaflets: “Wanted: Sullivan. For crimes against disabled people." Inset picture: Beefy policeman with his cap down over his nose leaning forward. Caption: “If you care about your dog, move!” Article continues: It's lunch. ADAPT always feeds its activists. Today it‘s Burger King. Attendants and other walkies pass out cokes and burgers. Nan, Moulton’s dog, gets some much welcomed ice cubes from the big bag under the tree, put into the little folding plastic water bowl Moulton carries with her. A new crowd is coming to the arena. They, too, get leaflets and chants. Tim Craven has been ejected when police found him inside, but not before he and the other two who had hidden themselves in the press box get off a few good chants in Sullivan’s direction. A reporter for Habilitation, a disability magazine out of Seattle, has marched up to Sullivan, she reports, and asked him the questions ADAPT has so long wanted to ask him. To every single question, she says, he has responded, “It's a very nice day." Most of the students don‘t want to talk to a reporter. They have no comment. Some think that it‘s wrong of ADAPT to spoil their special day. Others think the group has a right to make itself heard — just not here, not now. One woman who has read the flyers says that "they don‘t want to be prisoners in nursing homes." A man, who hasn‘t read one, says he doesn’t know what they're protesting about but he thinks they have a right to do it. His daughter is graduating today —— with a degree in special education. Each ADAPT contingent blocking an entrance has its contingent of cops. The two `groups` joke with each other and pass the time in small talk. It's a lot like a chess game, says Haines; this trying to puzzle out where Sullivan‘s going to exit. Just about the time it occurs to several of the organizers who have been trying to psych out from which exit Sullivan will be spirited away that the one exit that has no guards on it is the parking lot entrance, a police car comes screaming down the street, makes an abrupt U-turn, and, at that moment, Sullivan's car, driven by Secret Service, shoots out of the entrance. Several ADAPT wheelers are on his tail in a flash, but it's too late. Sullivan again escapes— but the point, say the activists, has been well made to the over 10,000 people who have attended. Thousands of flyers have been passed out. PHOTO by Tom Olin: Inside a cavernous arena filled with people, two plain clothes police or Secret Service men have an ADAPT person (Bob Kafka) by the arms and are trying to lift him. He is sitting on the steps of an aisle leaning forward. To their right a young man in a button up shirt and jeans, a graduate, looks down at them. Caption reads: Getting to see Sullivan. Not. ADAPT makes no effort to block the streets surrounding the Pavilion. Monday‘s a different story. By 11am, both State and Adams Streets are blocked. Downtown Chicago is taking the flyers as fast as they’re being passed out. Many of them are surprisingly in agreement with ADAPT’s call for 25% of the current Medicaid money to be redirected to in-home services. One businessman engages Bob Kafka in a long and intense discussion over the merits of attendant services. He has buddies who were in Viemam, he says, and want the same thing Kafka does. He gives Kafka his card. Many other people are giving ADAPT members their cards, too; they are interested in the issue. Nobody, they say, has brought it up before. Certainly not the Chicago Tribune, which, instead of covering the baccalaureate brouhaha, runs a feature story on a college camp-out. “What I‘m looking for is a reasonable atmosphere to address the issues." Delilah Brummet Flaum, HHS’s Region V Director, would have to shout to make herself heard over downtown Chicago traffic and hundreds of milling demonstrators. And she‘s not shouting. She has come down, along with Chester Stroyny. Regional Director of the HealthCare Financing Administration and HCFA official David DuPre. in response to ADAPT demands. They want to meet with “officials”; they’ve blockaded the Region V HHS headquarters and aren‘t letting anyone in or out — unless they're willing to climb and crawl over protesters. About 20 activists have gotten all the way up to the HHS offices on the 15th floor, and have a bunch of police in there with them. It’s lunchtime by the time Flaum, Stroyny and DuPre are trotted out to Karen Tamley, Bob Kafka and Teresa Monroe and the others in the middle of Adams Street. ADAPT wants them to call Sullivan, to make him come back to Chicago and meet with them. Flaum can’t do that. “I am willing to do anything else you want us to do. to do try to get this resolved,” she’s saying. But she wants the group to be "more reasonable." She tells Tamley that she is “well aware" of ADAPT’s concerns, and that “the Bush Administration is working on non-institutional care options." Anna Stonum asks more questions. People in the crowd are starting to yell that they can’t hear. Flaum is telling Kafka that “shutting down a building“ is not the way to get a meeting with Sullivan. Kafka responds that they‘ve sent at least four letters to Sullivan and he's never responded to a single one. “You know as well as I do that the Secretary sets the tone for the discussion,“ Kafka lectures her. Kafka and DuPre engage in a debate about facts and figures. They can't trip Kafka up; he seems to know as much if not more about the issue than these folks do. At times the officials even seem to agree with him. Not, however, when he charges that “nothing the Secretary has said or done" changes anything “because he's in the pocket of the nursing home industry." “We disagree with that," say all three officials simultaneously. “We do favor the de-institutionalization model." “The damn Secretary has not said one thing — ever - has not even said the word ‘attendant services’ publicly," Kafka yells, and swears that ADAPT will continue to hold the building. “This is not being positive," says Flaum. “These are peoples' lives you’re talking about.” Kafka retorts. Photo Inset: The head of Bob Kafka, looking very intense, below the words "The damn Secretary has never even said the word 'attendant services' publicly." Article continues: “You don’t know what it’s like,” Monroe shouts at the officials when Kafka's done. “I want to talk to Sullivan. You get him here. He has no idea. Don't tell me Sullivan knows.” Monroe’s point, which she makes to Flaum, is that the money should go directly to the disabled person “because no person knows better what they need than the disabled person. Let us have our dignity.” She argues with Stroyny over nursing home inspections. Mark Johnson accuses Sullivan of “being in the pocket of the nursing homes.“ And meetings like this, he charges, aren’t worth a thing “unless there’s a commitment." The group, hearing Johnson, takes the cue: “We want a commitment!" One of the workers in the HHS office has come out for lunch and now finds she cannot get back in over the demonstrators. Still, she thinks what they're doing is “positive.” She’s a volunteer in a nursing home herself, she says, “And I know they’re the pits. People who don't frequent them don't know. These people who are walking around here” — she gestures to lunch-hour Chicagoans moving up and down the street-- “they could become victims of nursing homes, too. I look at these people here" —— and now she means ADAPT — “and I know I wouldn’t want to be jailed up in a nursing home." But then, she believes in protesting, she says. “I think protests are fine. I'm in tune with them. I was with Martin Luther King back in the 60s." she says. “I was in jail with Dr. King. I was 14 years old. That was just what you did; you went to jail. Some of our young people don't understand. “This is how to explain it,” she continues, warming to her subject. “These people want to get heard. We couldn’t get heard in Birmingham, either. That‘s why we marched on Washington." She won’t identify herself, though, but will only say she’s a spectator. But she works upstairs in the HHS office, she says. “And they got time to listen to that TV stuff — people come in talking about that, they make a big deal about the stuff they see on TV. And they got these people out here and they don‘t want to pay attention. When I was upstairs, they were callin’ ‘em ‘beasts’ and “vultures.” It is a measure of the erosion of belief in the system that has become the trademark of ADAPT that, when an EMS ambulance pulls up to the door and the word goes out that police are bringing down a man who’s had a heart attack, the thought passes among the group that this is yet another ploy. They think the stretcher rolled into the lobby and up on the elevator may be a ruse to make them move away from the door, which they nonetheless do, not wanting it to be said that they cared not for another disabled person who might be in danger. And when the man is brought down on the stretcher, there is more speculation: wasn’t he one of the officials out here earlier? Did the confrontation and excitement give him a heart attack? Is he faking? Is it really a medical emergency, or just :1 move to get someone out of the building who has an important meeting to attend and doesn't want it stopped by cripples? No one remembers the man in the stretcher more than a few minutes after the ambulance pulls away, lights rotating, into the Chicago traffic. Jane Garza from El Hogar del Nino is with the protesters. blocking a door by leaning against it. She’s part of the protest. she says: disabled herself, though she knows she doesn’t look it. She works in early childhood education. Some of the signs protesters are carrying were made by the children at her center, she says. “It's a way to bring them into it," she points out. The parents of the disabled kids at the center “are all reasonable people,” she says. “So they understand my being at an activity like this." If she gets arrested, she says, she has an understanding with her agency: they will bail her out. She’s been arrested with ADAPT before. she says; that was in Montreal. She’s been with ADAPT protests in Washington — the one to get the ADA passed; and one in St. Louis. “No one wants to see their child in a nursing home. People can really relate to that." She says the group at her door has been talking to passersby all day about the issue. “I was on the verge of going into a nursing home myself, back in ’82.” says this woman who doesn’t look disabled. When she had her aneurism and was in rehabilitation, she says, the Illinois Department of Rehabilitation Services gave her money with which she was able to pay two people — one for the morning, and one for the evening. “I just needed help getting up and then getting to bed. I was so weak. I just needed minimal assistance, somebody there to help me get dressed. But without that program. they would have put me in a nursing home.” Illinois Gov. Jim Edgar’s budget cuts have forced the Department of Rehabilitation Services to extend a freeze on intakes in that program through the end of 1993. and Edgar, Chicago ADAPT charges, is trying to eliminate a yearly cost-of-living adjustment for attendants. "After I got stronger, I was able to manage on my own. But look at how many people are in my shoes!” she says. “I worked; I had money. I was a social worker back then: one who had to apply for public aid just so I could get assistance." Insert picture: A person (possibly Lonnie Smith) with his head to one side and below the words “We want them to see what it’s like for us.” Article continues... The philosophy and tactic of doorblocking: Let people go in and out, if they’re willing to climb over you and your chair to do it. Arrest is not the objective here; inconveniencing people is. “We want them to see what it's like for us.” says one who has engaged in many door blockings. Photo by Tom Olin: A policeman stands in the middle of the street legs braced in a wide stance and arms streched out. He is holding a man with a cane (Gary Bosworth) with one hand and with the other hand and foot trying to hold back a man (Bob Kafka) in a manual wheelchair who is bent forward pushing. Other police officers are standing in the street, a supervisor is watching, as is a TV cameraman. Other protesters are partially visible at the edges of the scene. Chicago police have a black and white checkered band around their hats that is very distinctive. Article continues- Tuesday morning's Chicago Tribune, instead of covering ADAPT's HHS confrontation. reports on stepped-up security measures at the downtown State of Illinois building where. the Tribune reports, in error, ADAPT was "supposed" to be demonstrating Monday. ADAPT, it says, changed its mind. In fact, ADAPT planned to hit state offices on Wednesday. Speculation abounds as to who fed the paper the false information, the effect of which is to make ADAPT look disorganized. It later becomes apparent that state officials have had a hand in it. There is nothing in the Tribune about the people who stopped along State Street and asked questions, about Flaum, about any of it. The Sun-Times carries a photo inside. At the comer of State and Grant, a baby-blue police wrecker, the same blue as the cars, as the barricades, has blocked a curb ramp. ADAPT has blocked four intersections adjacent to the American Medical Association. Wheelchairs are stretched across 16 streets. At the intersection of Wabash and Grand, in the back, Paulette Patterson is hassling the policemen, mouthing off and chasing them with her motorized chair. It seems she is trying to get arrested. The police are being friendly enough. It won't be until noon that things will get rough. The cops will barricade the main entrances to the glass-walled fortress: many ADAPT members will take that as their cue to launch themselves out of their wheelchairs onto the high-curbed stoop around the building, crawling up to bang and hammer on the wooden barricades. A few find satisfaction in pounding on the glass walls. This will happen, though, only after the confrontation — the confrontation that resulted in Jerry Eubanks of Chicago being dropped from his wheelchair: picked up by his neck, it seems to other protesters, who holler for an “Ambulance! Now!”; the confrontation that causes Patterson to roll from her wheelchair and shriek at the top of her lungs, kicking her legs wildly as police try to pick her up. The police back off; when they come at her again, her screams again drive them back. Finally, Patterson is left alone, and, once more in her wheelchair, rolls off to the side, where she admits slyly and with her trademark smile that she enjoys discomfiting police. “They don't wanna mess with me," she says proudly. Suddenly they are all there again, surging at the entrance, trying to get up the high curb. Stephanie Thomas and Diane Coleman and others are wedging themselves in next to the Chicago Transit Authority paratransit vehicles that are a sure sign of arrests: it's the only way police can haul off a wheelchair to the hoosegow. Allen Leegant is diving under a barricade trying to get up to the entrance. Chris Hronis and Arthur Campbell are trying to follow; they are caught by police. Campbell is carried, spread-eagle, by four cops, directly to a CT A van. Cameras are everywhere; TV crews have materialized out of nowhere. Campbell has been arrested. Mike Auberger has been arrested. Campbell and Auberger are each put into his own van. The police have their eye on Mike Ervin. When you catch a snatch of cop-to-cop talk, you learn they're trying to pick off those they figure to be the leaders. “What the cops never understand is why the demonstration continues after they’ve hauled off the folks they think are leaders," says someone who is blocking a street. “They can’t figure out that arresting leaders doesn’t work; that as soon as they arrest someone, somebody else just moves in." Susan Nussbaum, blocking a side door, answers questions about whether the movement will ever see violence. “There’s always the potential for violence," she is saying. “But it would be good if that could be understood in the context of a larger issue. “I am not in favor of getting my head beaten in." At 3:15 the building starts to empty out. ADAPT has managed to block all the exits, so AMA workers and officials alike are subjected to a gauntlet of taunts as they trot, under tight police protection, down the ramp to the alley and across to the parking garage. The taunts seem mostly to be of the “AMA Shame On You” variety. When ADAPT members arrived at AMA headquarters in the morning, they found tables set up with water coolers and cups of refreshing water awaiting them. Later, the AMA‘s Department of Geriatric Health would confirm for a reporter that the AMA had done this so the disabled people wouldn't get overheated and get sick. Many protesters were wary of the water. Some suspected it had been spiked with Valium: others thought it a ploy to get them to have to pee later on, adding to their discomfort and hopefully ending the demonstration early. Much of the water was left untouched. Water was also running through hoses into the sprinkling system of the AMA‘s lawns. This had the added effect of keeping protesters off the grassy knolls fronting the building. Shortly after ADAPT arrived, one demonstrator had parked his chair on the hose while others moved across the area to block doors. Later, the water was simply turned off. Insert picture: A head and shoulders picture of a protester chanting, with the words "AMA: Shame on you!" "People are dying shame on you!" Article continues- The AMA’s flak, Arnold Collins, was standing around with the TV and radio reporters most of the day. The AMA had issued a statement insisting it “supports the home care objectives of ADAPT." Dr. Joanne Schwartzberg, Director of the AMA's Department of Geriatric Health, said in the news release that a meeting the previous Thursday with ADAPT had been “productive” and that the two `groups` had “considerable common ground.” Campbell, who attended the meeting, had a different analysis. He said he believed Schwartzberg truly had no understanding what ADAPT wanted; that some of their ideas had been totally inconceivable to her. Schwartzberg said ADAPT was the first group she had ever met with and felt “hostility.” “It was a great shock," she said. “I always thought of myself as being a great advocate. But I wasn’t an advocate enough for them." Schwartzberg said that ADAPT didn’t understand that there were “really frail people in nursing homes — a kind of frailty that these disabled don’t have. “I was really scared that the demonstrators might get harmed, the way they throw themselves out of their chairs.” she went on. “They’re very courageous; I think they're a little reckless. Luckily, nobody’s gotten seriously hurt." “Do you think she really believes the things she says, or do you think it’s just a pose?” a filmmaker wondered. The AMA had issued “a guideline for medical management of homecare patients," she said, and they were putting on 8 seminars for doctors “in managing home care.” She knew ADAPT wanted AMA members to divest themselves of their financial interest in nursing homes and cut nursing home admissions. But the AMA couldn‘t do that, she explained patiently. “We are a voluntary body. not a regulatory body." “They couldn't understand why we couldn‘t do more." she said. The Chicago Tribune was still concerned about the State of lllinois building. Every day Tribune stories had chronicled the increasing security at the site. On Tuesday, Paulette Patterson and another disabled woman filed suit in U.S. District Court alleging denial of access due to increased security. Though a temporary restraining order was not granted, Patterson’s attorney, Matthew Cohen, said filing the suit had had the desired effect. The Tribune covered the suit. Photos by Tom Olin: 1) Two protesters (Spitfire and Jimmi Schrode) in the march raise the power fist to woman leaning out of a second floor window yelling and giving them the thumbs up. Below on the sidewalk most people are just walking by but one older man looks on. Spitfire is wearing her combat helmet. 2) A line of ADAPT protesters face a set of barricades on the other side of which are a line of policemen holding the barricades with both hands. Midway down the line of protesters, a man in a wheelchair (Danny Saenz) is turned toward the camera and another protester (Chris Hronis). 3) Close up of a man in a wheelchair (Rene Luna) who sits in front of an almost life sized portrait of IL Governor Edgar. Rene is holding a poster that reads "nursing home industry owns Edgar." Article continues- Finally, on Wednesday, ADAPT obliged the Tribune and state officials by staging a protest at the building, drawing attention to stale policies that were cutting people off from attendant services in Illinois. On Thursday. the Tribune ran a long story on ADAPT. Calling them "a group of vociferous activists savvy in street action." It quoted a miffed Chicago official who refused to be named saying that "one of the strongest points in their civil disobedience is making themselves look as pathetic as possible.“ “The group's history is rife with attention-grabbing acts of protest." said the Tribune. which compared them to ACT-UP and Earth First! protest `groups`. "Though some may question their tactics. none can doubt they have impact.“ said the Tribune. the end
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Fourth Wave Magazine (Washington University) [This article continues in ADAPT 729, 721 and 739, but it is included here in it's entirety for easier reading.] Wheelchair Warriors Story and Photographs by Jan Neely Editor's note: Last May, Fourth Wave editorial intern Jan Neely and I flew to Chicago for our first ADAPT demonstration. ADAPT (or American Disabled for Attendant Programs Today, as it is more formally known), first took to the streets 12 years ago in Denver, Colorado, to fight for wheelchairaccessible public transportation. Today, with the passage of the ADA securing transportation access, ADAPT has taken on the nursing home industry, institutions and the United States government in an attempt to provide community based personal attendant care and housing to all persons with disabilities in all 50 states. Here’s what happened: ..... Editor Photo: A city sidewalk jamed with wheelchairs and a couple of cameramen standing beside them between parked cars. Larry Biondi is on front right side of the photo. People are basically lined up waiting to move out. Article begins: DAY ONE: ADAPT arrives in Chicago. Its my first demonstration and my first job as a photojournalist. "Click, click" goes my camera. Everybody else may look cool. but I'm shakin' in my shoes. Try to picture 300 people (most in wheelchairs) on the same mission. No pro-nursing home advocate is safe here! I feel as if I've just entered THE ADAPT ZONE! Actually, the first day was mellow and taken up with pre-action planning. ADAPT doesn't have any membership rules or requirements. You just have to believe that people with disabilities have the right to live without putting up with abuse of any kind. I'm real excited because this is the first group I've ever been involved with that has people with all kinds of disabilities, not just developmental disabilities. DAY 2 Here's ADAPT (photo 1) blocking the doors of the auditorium in hope of catching Dr. Sullivan when he leaves. The Chicago police and the Secret Service put up barricades and pushed back the activists. Victoria Medgyesi, editor of Fourth Wave and my traveling buddy, used her press pass to get into where Dr. Sullivan was to ask him some questions. He refused to talk to her about Medicaid, ADAPT or nursing home abuse. PHOTO 1: A line of Chicago police officers face off against a line of ADAPT protesters in wheelchairs who come up to about the middle of the officer's chests. In the forground there is a barricade, but further back they are just right up against each other. PHOTO 2: Three men in wheelchairs (__________, ___________ and JT Templeton sit in an open area in front of a barricade. Behind the barricade is a crowd of people. JT holds a poster that reads "Sullivan where are you?" Article continues... DAY 2 cont. Usually ADAPT doesn’t go around the country crashing graduations, but this one was different (photo 2) Here we are at the University of Chicago where Dr. Louis Sullivan, Secretary of Human and Health Services, is speaking to students who are going to be medical professionals. For the past two years, ADAPT has been trying to talk to Dr. Sullivan about redirecting 25 percent of the Medicaid budget for personal attendant care into a home-based program. But he has refused to talk to ADAPT or to change the rules. As the graduation crowd went in, ADAPT passed out flyers. As l told one person, “What if you become disabled someday? What if your family couldn't take care of you?" As for the police, at this time they just stood back and watched. One of the reasons ADAPT has public demonstrations is to make the public aware of what's important to people with disabilities. Actions like this keep us going to meetings back home even though what we say is usually ignored. DAY 3 The next day we went to one of ADAPT's all time favorite places to "act up": the state office of Health and Human Services. It was only a few blocks away from our downtown hotel. so all 300 of us got in a single line and went for a little walk. Did I say little? Wait a minute. a line of 300 people in wheelchairs plus their supporters? Little? I will admit it was the most incredible thing I have ever seen. ADAPT does not stop when it goes on one of its “little walks." It does not stop for lights, trucks, cars, cops, or anything else. It also goes right down the middle of the street. But that's not to say ADAPT isn't nice, oh no! All along the way ADAPT gave the people of Chicago (who lined up on the curbs to watch as we wheeled and walked by) little gifts of knowledge: flyers with the real scoop on nursing homes. PHOTO 3: Amid a long line of ADAPT folks marching in their wheelchairs, a man (Mark Johnson) in a wheelchair talks with a man (Bill Henning) and a woman who are walking beside him. PHOTO 4: A city street lined by tall buildings, is filled by ADAPT protesters apparently crowded from one side to the other. Several people standing closest to the camera but facing away (Jimmi Schrode is on the far left) raise their hands, thumbs up. Article continues... DAY 3 cont. It was a thrill to watch ADAPT in action. When the whole group got to the Federal building, it was a big mess. We blocked off streets and almost shut the building down. As ADAPT told the police, the media and all the people who gathered; “We declare this building a Federal nursing home... only this time, no one goes in or out without our permission! " The reason many activists do this is because they once lived in nursing homes and other institutions and know how bad those places are. Boy, can I relate. I have mild cerebral palsy and I’m lucky to have always lived at home. But will I always be lucky? I feel that as long as there are institutions, they will be a threat to the kind of life my friends and I want to live. This laid-back looking guy is Mike Auberger. He is one of the original ADAPT activists. ADAPT may look like a bunch of disorganized hippies who lost the map to Woodstock 20 years ago, but the opposite is true. In Mike's backpack is one of ADAPT's three cellular phones and the base walkie-talkie! Bill Scarborough, an activist from Texas, keeps the computer nerds in the know by sending the word out from his laptop computer to computer bulletin boards across the country. ADAPT also has a media person who goes to whatever city ADAPT is demonstrating in several days ahead to let people know whats going to happen. PHOTO 5: A very intense looking man (Mike Auberger) in a power chair is sitting sideways to the camera. Behind him is some kind of vehicle and the ADAPT crowd filling the street. Tisha Auberger (Cunningham) is squatting on the bottom right of the picture. After nine long hours of blocking the building's doors, representatives from HHS finally agreed to meet in the street with ADAPT. It turned into a regular media pow-wow. Activists told the administrators and the media what was needed by people with disabilities. Photo 6: A gaggle of reporters and photographers tightly encircle the Regional HHS Director and several ADAPT protesters (Teresa Monroe, center, and Bob Kafka, right side). Article continues... We talked and they listened, but I have a feeling the concern I saw on those experts' faces was just the same old B.S. All of ADAPT's demonstrations are non-violent, but they are important battles in a war fought by people who are fighting to lead decent lives. The possibility of being arrested did make me nervous. It made me feel a little better when ADAPT told the new people that, if you got arrested, the group would never leave you alone. They said ADAPT would tell the cops your needs, get you a good lawyer, and stay on the outside of the jail chanting so you would know ADAPT was with you. Photo 7: Portrait shot of a man (Gene Rogers) with long brown hair and glasses, sitting in his wheelchair. He is wearing a T-shirt with a larger than life sized photo of Rev. Martin Luther King Jr's face and the words "VIOLENCE IS IMMORAL" and a lengthy quote below that is too small to read in the photo. Article continues... DAY 4 As l was getting dressed I thought to myself “Today ADAPT is taking on the AMA." Oh God. what have l gotten myself into? l mean the AMA! The Big Brother of the medical world; the people who are not only in charge of admissions to nursing homes, but who are also in charge of giving prescriptions to people like me. I thought: What if my doctor saw me and did not like what I was doing with ADAPT? Would he stop giving me my blood pressure pills that I can't afford to buy? What would happen then? What about the others? Aren't they in the same boat? I got a lot more out of my trip to Chicago than just a story and a few good pictures. I met some people who are important to the disability rights movement. I felt accepted and I came home with the feeling that together we can really change things. People with disabilities need to keep talking. We need to demonstrate. We need to tell the so-called "experts" the real truth and try not to be too afraid while were doing it. Insert text box: Incitement, Stephanie Thomas Editor. What's happening on the front lines? Read INCITEMENT, the official newsmagazine of ADAPT, and learn the who, what, when, where and why behind today's headline news. Free! To order contact: ADAPT/INCITEMENT 1339 Lamar SQ DR Suite B, Austin, TX 78704 (512)442-0252 Second text insert at end of article: Jan Neely is a photography student at Olympic Community College and an editorial intern at Fourth Wave. She is active in People First of Washington. the end
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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
ADAPT (747)
[Headline] Breaking ' em out [Subheading] Why Atlantis's Mike Auberger hates nursing homes [image] [no image caption] If ADAPT members compare nursing homes to jails, it's because any of them have been in too many of both. Mike Auberger, Co-director of Atlantis, Inc., in Denver, has been in over 20 jails nationwide, arrested in ADAPT actions over the past de-cade. In his job with Atlantis, he goes into Denver area nursing homes to spring people who doctors insist can't live on their own. One of the places he frequents is Denver's Heritage Rehabilitation Center, licensed as a long term care facility, where Auberger says "Craig [Rehabilitation Center] sends its losers." He tells the story of one 18-year-old put in the Center whose mother, says Auberger, lives 45 miles away and doesn't own a car. The Center "won't let her take her son out of there because they haven't trained her on tube feeding and respirator stuff. "She takes the Greyhound down, seven days a week, to see her son. But Greyhound doesn't get her there when she needs to be there. They set up meetings for her at 8:30 in the morning. She can't get there on the Greyhound till 11." The rehab center, he says, "sets it up to fail; they set it up to keep him in there. They say they're not going to train her if she's not there at 8:30." "This guy's probably got about a year to live," says Auberger. "When was at home his mom was pureeing food that she cooked; but here they've decided it's easier for them to tube feed." They can bill for more reimbursement that way, he explains. "All he wants is to go home. He knows he's gonna die. He wants his Mom's chile rellenos." "It's incredible," Auberger says. "The place constantly set it up so that his mom was going to miss the meetings and not be able to take him home." To Auberger, the Center's intentions are crystal clear: "They can keep 'em there and bill Medic-aid; that's the whole point." This client got lucky. He got out. "We went in there — we took our lawyer and our doctor; we didn't say anything to the nursing home." Atlantis's doctor, brought in by Auberger, "says there's no reason this guy can't go home." The man, Auberger and the doctor and lawyer he has brought meet in the home's cafeteria. "And all we do is we ask, `do you want our lawyer to represent you?' He says, 'yeah.' We ask him`do you want this doctor here to be your doctor?' " He wants that, too, says Auberger. "Up comes the administrator," says Auberger, relishing the denouement of the story. "We introduce the doctor and the lawyer, and we say, 'he's leaving in a week. You train his mother when she gets in, and if you've got a problem about when she gets in, talk to our lawyer about it." "In a week," says Auberger, "we got him out. He's had pneumonia a 12 THE DISABILITY RAG JULY/AUGUST, 1992 couple of times and been back in the hospital — but he hasn't been in a nursing home. "That's what it's all about," says Auberger, with satisfaction. "Keep-in' em out." At a typical "home," the administration is on the first floor, the patients on the second and third. "If you're a patient there, you can't go up or down; you're on the floor you're on, period." If you want to go down, "you have to get a nurse to take you," says Auberger. "There's no way of getting out of there period — without a nurse. All the doors have alarms on them. "It's like a jail. There's no difference," he says. "And this is modern day treatment." Auberger points out, with irony, that the doc-tor for the Heritage Re-habilitation Center is also the doctor for a nearby prison. People in facilities like Heritage are what's known in the rehab business as "losers," says Auberger — those who don't advocate for themselves. A typical "loser," says Auberger, may be 40 years old when he becomes disabled. "You hold all the preconceived prejudices about disability; you're a c-4 quad and you're depressed and you just don't really want to do anything but exist. You're not the wheelchair athlete, you're not the I'm-gonna-get-over-my-disability type." Auberger charges that places like Craig hold to the approach of "you get over your disability," which he calls "that whole thing of `whitey.' If you don't play `whitey,' you're a loser — it doesn't matter whether your a para or a quad." He suspects doctors send clients from one Denver-area rehab facility to another, shifting them as the allotted maximum time for each facility to be reimbursed for care is used up. A number of doctors have financial stakes in these facilities, he says. "If you look at nursing home structures, what you find is a group of individuals, as a corporation, building a building, licensing it as a nursing home, then selling it to an-other corporation, which they also own, at an inflated price. Then that group will hire the same group" another corporation on paper, but still the same group of people, he insists "as the management corn-pany to run the nursing home. [boxed text] If you don't play `whitey,' you're a loser. "You collect depreciation for awhile on the new building" — as long as you can, he stresses "then you sell it at an inflated price to the second corporation. The second corporation is able to depreciate it again." Then, he says, the management company charges exorbitant rates to the owners to run the home so much that the original corporation goes bankrupt. But that, he insists, is the whole idea: "then they're out from any responsibility." And the management company, which is all the same people any-way, is still running the facility and making money from insurance and Medicaid. "It's all legal," says Auberger, who says the majority of the money that fuels such scams is corn-ing from Medicaid. Nobody ever writes about this, he says, because "it's all legal." Auberger tells of one person who died in one of this group's facilities. For up to a week after the man died, says Auberger, doctors and nurses were "writing care plans" as if he were alive — ostensibly to continue getting Medicaid money. The case is now in a lawsuit. At the same facility, a quadriplegic man was found outside, frozen to death — "a quadcicle," Auberger recalls it bitterly. "Nobody even bothered to notice he was missing." Tube feeding is a sore point with Auberger. One client he just got out had been fed this way, through a tube into his stomach, for over a de-cade. "He hasn't swallowed anything in 11 years,"says Auberger. "He's lying down -- he only gets up once a week so as the food backs up, the acid from his stomach escapes as well. It's destroying his esophagus." He has constant diarrhea, too, says Auberger. "If you ate 24 hour a day you'd be shitting like a wild turkey, too." The man, who was "non-verbal" said Auberger, communicated with him by blinking once for "yes" and twice for "no." The man couldn't use the call button, either. "A nurse came in once a shift to re-hang another bag of food, set the tube feeding — and she's gone." The irony is inescapable: "You've got a machine feeding him, and they're billing for a nurse to feed him. And that's what she does." Auberger points out that the Colorado Nurse Practice Act "says a nurse has got to do tube feeding — and damn if it isn't a machine doing it a machine anyone can learn to run." James Lund vull, a client of Atlantis before he died in an fire set by arsonists JULY/AUGUST, 1992 THE DISABILITY RAG 13 (See "Hate," May/June Rag), had been on tube feeding too, says Auberger, until Atlantis attendants began to wean him from it. Tube feeding isn't a skilled procedure, says Auberger. "If I can do tube feeding, it sure as hell doesn't take a genius to do it." The man in the facility Auberger was visiting had been eating food pureed by his mother when he lived at home and his mother was alive. It "took him almost two hours to eat" but "that wasn't a big deal," said Auberger. "But obviously the nurses decided there's a better way to do things. You can feed this guy by tube--you just destroy his esophagus and ruin his bowels. One day when Auberger visited "it was so bad we couldn't communicate; he had this stuff coming out of his mouth and nose, backing up. I went to get a nurse at ten after two." No nurse came, however, until 20 til four, says Auberger. "She comes in, looks at him, reaches over on his nightstand, gets some kleenex, wipes his nose and mouth, walks out." To Auberger, the obvious problem was that the man needed his feeding level changed; they were giving him "100 drops an hour" which he says is "way too much." But Auberger says the nurse would rather wipe his nose than bother checking on the level of feeding. Auberger insists the stories like these are typical. "I can take you into every nursing home in Colorado; it's no different. Nobody gives a damn." [boxed text] "If I can do tube feeding, it sure as hell doesn't take a genius to do it." [new section] [Headline] Better late than never An 83-year-old-woman heard about Atlantis on a Denver talk show and called them, wanting a way out of a nursing home her family had placed her in 6 years earlier, after a fall. "She didn't break anything; she didn't even hit her head," says Atlantis's Mike Auberger. "She just fell, and her family decided she'd be better off in one." Initially, says Auberger, the woman's family was "irate" that Atlantis had intervened. "We told them how we were going to move her into her own apartment, provide services and so on. They were real skeptical." But a few months later, the family called wanting to get Atlantis services for another elderly relative. They had been won over. "Into a nursing home at age 77, out again at age 83: You don't normally see a progression like that," says Auberger, satisfied.