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主頁 / 相冊 / Chicago, Spring 1992 51
- ADAPT (715)
[Headline] Local activist fights for independence in Chicago Desert Sentinel By Gary Bosworth Special to the Sentinel It is not normal Mothers Day present from a very unusual person. Susan Cote travelled to Chicago for Mothers Day, not to be with her mother, but instead to fight for the right of all mothers to live independently in their own homes instead of being forced to give up their independence in nursing homes. Cote has had cerebral palsy since birth, which has caused her need the assistance of wheelchair. She is joining about 250 other people from around the country. The will be all converging on Chicago in their wheelchairs to lobby for re-directing 25% of the existing nursing home federal dollars into attendant services so people are not forced to live in nursing homes against their will. American Disabled for Attendant Programs Today (ADAPT) has chosen Mothers Day for this intensive lobbying effort because over two-thirds of the people in nursing homes are somebody's mother. What better way to express gratitude to mothers everywhere, than show solidarity with the dreams of living independent lives. Cote, a mother of two teenagers herself, expresses it by saying, "It is important for people to understand that people do not end up in nursing homes because of the disabilities they develop. All persons with disabilities, no matter what their age are entitled to the right to be given the opportunity to live independent, productive lives in the community by being allowed to continue to live in their own homes." Over $20 billion dollars a year are spent by the federal government to subsidy nursing homes at an average cost of well over $30,000 per person each year. An equivalent amount of attendant services cost from $4,000 to $8,000 a year--a mere fraction of the nursing home cost. Cote, who eight years ago, worked herself as a Certified Nurse's Aide in a nursing home facility sees it as a simple choice for the government to make. "Why spend four times the money on something people don't need, don't want, and limits their own freedom. - ADAPT (736)
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 (699)
A group of ADAPT protesters stand and chant in front of an almost life sized portrait of IL Governor Edgar with flags on eithere side of it. All are Chicago ADAPT members. From left to right they are a woman (Julie___) in a Chicago ADAPT "ADAPT or Perish" tshirt, a woman standing, a man in a wheelchair (Rene Luna) holding a poster that reads "nursing home industry owns Edgar." All three have power fists raised in the air. On Rene's right side is a man (Fred Stark) in an ADAPT tshirt with the no steps logo but Free Our People written across the bottom; it was our transition shirt when we were transitioning from American Disabled for Accessible Public Transit to American Disabled for Attendant Programs Today. - 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 (717)
Chicago Tribune, Thursday May 14, 1992 [This article continues in ADAPT 712 but the entire text has been included here for easier reading.] Photo by Eduardo Contreras: A man (Randy Horton) in a denim jacket kneels on the bottom step of an escalator with his arms spread from one handrail to the other. Someone stands on the escalator facing him. Behind him are a group of other protesters in wheelchairs filling the area. The group includes: Steve Verriden, San Antonio Funtes, Chris Hronis and others. Caption reads: Randy Horton (on knees) blocks John Meagher on a State of Illinois Center escalator. Title: Disabled protesters take hard line by Christine Hawes and Rob Kawath Rolling his wheelchair around the cavernous State of Illinois Center, shouting for his rights, Ken Heard recalled how he used to spend his days in a Syracuse, N.Y., nursing home where doctors controlled his life. They would tell him when he could get up in the morning, when he could go to sleep, what he could eat. They would feed him pills, but they wouldn’t tell him what they were for. It was as if he had no mind of his own. “l saw people tied down in their beds, said Heard, who has severe cerebral palsy. "And I saw people die in there." It took some time, a marriage that got him out of the nursing home and a raging desire for independence, but today Heard has regained the power to think for himself. He now earns his own income, rents and fumishes his own apartment and even takes vacations in Las Vegas. His joumey to self-sufficiency began when he heard about an activist group now called American Disabled for Attendant Programs Today. On Wednesday, about 200 ADAPT protesters in wheelchairs disrupted operations at the State of Illinois Center, 100 W. Randolph St., blocking exits and occasionally fighting with building patrons and workers as police stood by, arresting no one. Elaborate security measures the state had put in place Monday to keep the 16-floor, 3,000-employee building functioning broke down while state and Chicago police squabbled over who was responsible for arresting protesters deemed to have gone too far. But the scene of disabled men and women dragging themselves up escalators, surging into the building lobby and clutching the legs of people trying to walk past is just another picture in the well-publicized story of a group of vociferous activists savvy in street action. “One of the strongest points of their civil disobedience is making themselves look as pathetic as possible,” said one Chicago-area official at an agency that has been a target of ADAPT. The official, who asked that his name be withheld, said, “They are excellent media users, and they are very successful at putting spotlights on issues that most people probably wouldn’t normally pay attention to.” ADAPT has taken its dedication to a fever pitch, too fevered for some, and like many new protest `groups`—including the AIDS Coalition To Unleash Power (ACT -UP) for gay rights, People for the Ethical Treatment of Animals (PETA) for animal rights and Earth First for the ecology—is using dramatic, sensational tactics for their cause, to allow any nursing home residents the ability to live on their own. And though some may question their efforts, none can doubt they have impact. One woman who said she was grabbed, tripped and bitten during Wednesday’s melee confessed a few hours later, “I can’t help but feel guilty.” During Heard’s 10-year stay in the nursing home, he met some ADAPT members from Denver and listened to them tell of how they took sledgehammers to Denver's street curbs as a way of objecting to inaccessible sidewalks. Now Heard is a political organizer for ADAPT, in town with 350 other protesters. And though members are no longer taking sledgehammers to cement, they are steering wheelchairs into intersections, chaining themselves to buildings and crawling along dirty streets to get over curbs too high for wheelchairs. For the past two years, ADAPT has been staging demonstrations every six months in support of reallocating one-fourth of the country’s Medicaid funds that now go to nursing homes to in-home health care, and to make it easier for disabled people like Heard to escape their “prisons.” This week in Chicago, protests have played out at the quarters of everyone ADAPT perceives as the health-care power brokers: the federal Department of Health and Human Services, the American Medical Association and the offices of Gov. Jim Edgar. ADAPT claims that having personal, in-home attendants for the disabled costs $900 a month less in state funds than keeping them in nursing homes and other institutions. Illinois officials say the difference is only $600. But aside from financial concerns, ADAPT members say they’re fighting against inhumane restraint and abuse in nursing homes. Their strategy is to make the able-bodied feel as uncomfortable and limited as they themselves do—and to grab as much media time as possible. Television cameras were there Wednesday when bands of wheelchair users mobbed workers trying to use an escalator in the State of Illinois Center. And they were there Tuesday when protesters crawled out of their wheelchairs, across Grand Avenue and over foot-high curbs outside of the American Medical Association’s national headquarters. “This makes us visible," said Jean Stewart, a 42-year-old novelist from New York, who has used a wheelchair since she lost her hip muscle because of a tumor about 17 years ago. “And it enables us to get our message across. It’s not a publicity stunt, it’s education.” The group’s history is rife with attention-grabbing acts of protest after talks with officials were unsuccessful and full of what they feel is noteworthy success. The end result of the Denver protests, said Wade Blank, a founding member of the group, was one of the most accessible cities for disabled people in this country. Three years ago, a handful of ADAPT members were arrested for blocking a Chicago Transit Authority bus with their motorized wheelchairs. But two results of those efforts, they feel, were CTA purchase of buses with wheelchair lifts and even the passage of the federal Americans with Disabilities Act. ADAPT members say they are disrupting business as usual because they are shut out of offices where politicians and association presidents could be sitting down to discuss the issue. And they are trapping members of the public to demonstrate how they feel trapped and restrained. “For so long the issues surrounding disability have remained invisible,” said Stephanie Thomas, who lost her ability to walk when she was run over by a tractor 17 years ago. “So we have to do some extraordinary things to make people pay attention.” Wednesday’s protest, which came after U.S. District Judge Milton Shadur refused to order a lessening of security measures at the state’s Chicago headquarters, left police and Department of Central Management Services security officers snapping only at each other, even after the protest turned ugly. “I have to get to an appointment!" yelled one middle-age man as he wrestled on the ground with two protesters who had grabbed his legs and, in the process, had been pulled out of their wheelchairs. “This is what it feels like to be trapped in a nursing home!” yelled one protester. The man finally struggled free and hustled out of the building while Chicago and Central Management Services police watched from only a few feet away. “We’re sorely disappointed with the Chicago Police Department,” said Central Management Services Director Stephen Schnorf. “Certainly they provided better protection to the other buildings where there were protests this week.” But Chicago Police Cmdr. Michael Malone said the state was in control and his officers were just there to back them up. He said the state was misrepresenting the agreement between the two departments. And all that consternation was caused by a group that claims to be loosely organized and barely funded ADAPT, which has about 5,000 members nationwide, has very little formal correspondence, aside from a newspaper called Incitement and a rare memo, Blank said members keep in touch through word of mouth more than anything, and most of them support their travels through small fundraisers. But though the group says most of its day-to-day procedures are hardly sophisticated, ADAPT leaders are extremely skilled in using the media, say some who have watched the group’s protests first-hand. Sonya Snyder, public relations director at a Florida hotel where ADAPT demonstrated against the American Health Care Association last October, said the protesters only became rambunctious when television cameras appeared. “For most of the time, the police and the protesters would share sandwiches,” Snyder said. “But when the media came, down went the sandwiches and up went the protest.” And Janice Wolfe, a spokeswoman for the health care association, said the group’s efforts are “frustrating and misdirected. Their efforts could be better spent on individuals who are in power to do something.” ADAPT members view their protests as grand displays of strength, not pitiful appeals. They speak of their demonstration plans as though they are plotting battle strategy, using words like “identified enemy,” “privileged information” and "top secret." They pattern their protests after the civil rights demonstrations of the 1960s and compare themselves to the black leaders of that era “This is just like Martin Luther King,” ADAPT member Bernard Baker from Atlanta “We’re fired up, and we can’t take it anymore." - ADAPT (712)
This is a continuation of the article that starts in ADAPT 717. The entire text of the article is included there for easier reading. - ADAPT (707)
Access USA News June 1992 page 21 [This article appears to be in 3 parts, we do not have the first part. The article continues in ADAPT 702 but that text is included here for easier reading.] PHOTO in the center of the article: A mass of people in wheelchairs are lined up against the windows at the front of a building. The rows of people are 2 deep in many spots. Then there is a pathway along the sidewalk and another group of people is packed on the other side. One of the protesters in a manual wheelchair is facing away from the camera and on his back is a large poster that says "HELL NO! I Won't Go Back." Someone in a scooter (Rhona Schnall?) is rolling down the end of the pathway. Caption reads: ADAPT protestors converge on Chicago. ADAPT from page 3... "They're paying these people to work and, instead, they're standing out here and watching us. Yet I can't get my PCA money. What's going on?" asked 31-year-old Michael Graver, of Orland Park, Ill., during ADAPT's demonstration at the State of Illinois building on Wednesday. ADAPT shut down access to the upper floors of the building when the facility manager shut off the elevators and escalators so that protestors in wheelchairs could not reach the 16th floor, the office of Gov. Edgar. Many people employed by offices on upper floors chose to stand on the balconies overhead and gawk at the activities below. Graver has been attending Southem Illinois University at Carbondale - until now. He has cerebral palsy and uses a wheelchair. The college junior currently is unable to attend school at SIU because of the state cuts in PCA funding. No new clients have been accepted for in-home services since February 1. ”I can afford the apartment," he said, ”but not in-home services.” ”Tell them to give you the escalators and give us the elevators,” one ADAPT member told able-bodied individuals who complained about the group cutting off access to the upper floors. ADAPT blocked off the escalators with wheelchairs and bodies when members were told the elevators would not be made available to them. A small-framed, middle-aged woman attempted forcing her way through the unit blocking an escalator, emphatically stating, "I’m from Wisconsin, I can't do anything for you." She was detained. A man, approximately age 50, succeeded in forcing his way through the demonstrators, only after stepping over their wheelchairs, over people and finding himself crawling on the ground before getting to the other to the side. Another man of about the same age walked down the escalator and when he began trying to make his way through, said, "I have nothing against you people." A man in his 20's tried finding a route up an escalator, but met face to face with a female ADAPT protestor. ”Back off and try to understand what we're doing," she told the young man. ”This is beautiful," said the Rev. Hatcher, who uses a wheelchair and was at the State of Illinois building on behalf of the Coalition for United Community Labor Force, not with the ADAPT group. ”I really support this. I showed up to meet with the Governor's office to protest some things. This Governor is insensitive to the black community and handicapped community." Most able—bodied individuals continued trying to find elevators, escalators or stairs leading them to upper floors. Many stood on the ground-level floor in amazement, then complained that this was unfair to them. A few were curious enough to ask questions, read the fliers and express support. "James Edgar, shame on you. ”People are dying, shame on you. "Hey, hey, ho, ho, budget cuts have got to go." ADAPT’s verses were in unison, clear and loud as the crowded state building remained in chaos all day. "When l used to travel around the country, I would brag about Illinois and our in-home services,” said Judy Savage, Chicago ADAPT member and employee of Access Living of Metropolitan Chicago. "They've already limited the number of people who can get these funds and Democratic legislators are recommending more cuts.” Insert Text box: "In the nursing home, they don't let you do things yourself. I have to ask for permission to go out." -Louis Summers Article continues: As the fourth and final day of ADAPT’s demonstrations dragged on at the State of Illinois Building, able-bodied individuals became more irritated. ”Edgar's going to have to stop all this," one man said. “l have a grandmother in a nursing home and I know what they're like," a woman said, "but blocking off the elevators and escalators won't change that.” "This is wrong. This is even a fire hazard. You can't deny other people the right to go out and support their families. They’ re denying us our constitutional rights,” another man said, angry that he could not get to an upper floor. "This is wrong.” Thirty-nine year-old ADAPT member Mary Kay Strasser, who also belongs to Disabled Americans Rally for Equality (D.A.R.E.), sat at the opening of one of the elevators all day Wednesday, her personal attendant standing nearby. "This is a disgrace," she said. "We're human beings just like they are. People walk by and don't ask us what we're fighting for. You can tell their attitudes by the looks on their faces. The people in the nursing homes don't realize they treat us like we're nothing. I was in a nursing home for 3-1/2 years and it was the worst experience of my life." ADAPT passed out nearly 10,000 fliers during the Chicago rally. Fifteen people were arrested, mostly for trespassing, including 10 late Monday afternoon outside the Health and Human Services offices. The bulk of police-protestor interaction took place outside the AMA building Tuesday as demonstrators attempted to stop paddy wagons from leaving the area. One man being moved by police was dropped out of his wheelchair and his head struck the sidewalk; his injury appeared the next day to be a minor abrasion on the side of his head. At that time, a Chicago police officer wearing badge number 215 asked able-bodied ADAPT member Robin McGee why they were not protecting the people in chairs better, why they were allowing them to do this and get hurt. Louis Summers, age 31, was hit by a train while working and has lived in a nursing home the past three years. Father of three kids, Summers gets $422 a month in social security payments. He took his place among ADAPT members blocking an escalator on Wednesday. "I want a part-time job so I can pay child support and buy the things I need," said Summers, who uses a wheelchair and is deaf, but speaks clearly. "($422) is not enough for food and rent and payment on a loan." "I don‘t know why the government pays nursing homes more than they pay personal attendants. l can afford an apartment, but I can't afford the personal attendant. In the nursing home, they don't let you do things yourself. I have to ask for permission to go out." - ADAPT (702)
[This article is a continuation of ADAPT 707 and the entire part of the article we have is included there for easier reading.] - ADAPT (713)
The Guardian, May 27,1992 Photo by Tom Olin: A disabled man dressed all in white (Tim Craven) lies on his back to crawl under a police barricade. Beside him a woman (Barbara Bounds) in a wheelchair leans toward him as if to support and protect him. She is facing the barricade and has a sign taped to the back of her chair that says "People Before Profits." Two police men lean over the barricade toward Tim and another sticks his arm in between them. Behind them are even more officers. On the near side of the barricade yet another officer stands, bending almost all the way forward toward Tim on the ground. Caption reads: Protesters in Chicago got our of their wheelchairs and lay down in front of the barricades, forcing employees to walk over them. Disabled militants bring hope to health reform By Mary Johnson Chicago-Hundreds of members and supporters of ADAPT (American Disabled for Attendant Programs Today) took to the streets here May 10-13 to continue their fight for in-home attendant services and to move the national health-Cate debate into the rights arena. The group is aiming to force the American Medical Association—whose headquarters are here—and the American Health Care Association, the nursing home lobby, to replace “home care" with "attendant services“ which consumers control “in the location and manner of our choice,“ says ADAPT. ADAPT, which under the name American Disabled for Accessible Public Transportation won the national fight for wheelchair lifts on buses, intend their street protests as the “flashpoint," says founder Wade Blank, for national health care reform. There is nothing medical about assistance to bathe, eat or dress, these activists charge. Target: Louis Sullivan Learning that Health and Human Services Secretary Louis Sullivan would be speaking at University of Chicago commencements on May 10, the 250-strong ADAPT contingent cancelled a Mother‘s Day march and stormed into the university‘s pavilion, planning to disrupt Sullivan's speech. Police and Secret Service agents promptly ejected them, but the group spent the afternoon handing leaflets to graduates‘ families. Sullivan has been a perennial ADAPT target for his refusal to meet with them to discuss Medicaid policy on nursing homes. The next day, ADAPT surrounded the HHS regional offices in downtown Chicago, managing to get up to 15th-floor offices before being blocked by police. Others in the group cordoned off exits, forcing building employees to climb over them, and at one point succeeded in getting department officials into the street to listen to the group‘s demands. Ten protesters were cited and released. On May 12, ADAPT moved to AMA headquarters, blocking adjacent streets and crawling up to bang on office windows. Police barricaded the doors, but protesters got our of their wheelchairs and piled themselves at barricades, forcing AMA employees to step over them when their offices shut down early. Police moved to arrest four people they believed to be in command. The four included Mike Auberger of Denver and Arthur Campbell of Louisville, Ky., who were released later in the day. Garnering media attention Though ADAPT planned to press state targets only on May 13, the state barricaded its downtown State of Illinois Building on the two days before. Guards locked wheelchair access doors and forced wheelchair users to submit to police escort on elevators. On May 12, Chicago ADAPT member Paulette Patterson sued the state over discriminatory denial of access. Though District judge Milton Shadur failed to grant a requested temporary restraining order, Patterson’s attorney, Matthew Cohen, said he had “no doubt the suit had an effect.” On May 13, ADAPT took over the building while city police squabbled with state police over jurisdiction and mostly kept their hands off protesters. Longtime Chicago activists noted ADAPT‘s success in garnering media attention. Chicago Lawyers Guild member Ora Schub said ADAPT‘s protests got more coverage than Gulf war demonstrations in the city — even when antiwar protesters shut down Lake Shore Drive. There seems little question ADAPT has begun to have an impact beyond disability rights. As one of the only groups to take the health reform issue into the streets, ADAPT, says Blank, sees its role “as focusing the debate on a bigger political issue” within health-care reform: services as a legal right. “What the disability rights movement can do is humanize society,” he says. Tennessee ADAPT recently forced the hospital power structure there to accept a state financing fee that will fully fund Medicaid (see sidebar). Lawyer Gordon Bonnyman, who was involved in the Tennessee campaign, remembers a “poverty advocate friend" sending him a clipping about an ADAPT protest in Orlando, Fla., in 1990, when the group first took on the American Health Care Association over the attendant services issue. He and his friend “were despairing about health reform," he said, “asking ourselves when the people who were really affected were going to begin to influence the discussion. "l said, ‘l just don‘t see that ever happening until people are willing to stage some direct actions,‘ " Bonnyman recalls. “Then she sent me that clipping from ADAPT's Orlando action and she said, ‘Here are the folks who could do that.'" “My response at that time was, ‘That’s nice, but how many people is that?‘ I now think: ‘Enough.' ADAPT really does have the ability to have an impact nationally on health care issues-far beyond their own issue of personal attendant services." The group plans similar actions in San Francisco this fall. Second, sidebar, article inserted on this page: Saving Medicaid in Tenn Six people in wheelchairs moved swiftly a cross across the drive-way of the Tennessee Health Care Association in Nashville on March 31. Chaining themselves together, the small band waited for members of the Tennessee Hospital Association to come out of their meeting. It was a classic ADAPT action. This time ADAPT was leading a coalition of health care reformers that would force the state‘s powerful hospital lobby to drop its opposition to a state licensing fee intended to prevent a $1.1 billion loss in federal Medicaid funds. Tennessee pioneered the concept of leveraging matching federal Medicaid funds by levying a state financing fee against hospitals that took Medicaid patients. With its 70-30 match, the state took the $300 million collected from participating hospitals to obtain another $700 million in federal matching funds. With that tactic, Tennessee was fully funding its Medicaid program and feeling no financial crisis. By 1991 it was in use in 37 states, with many reporting similar success. The federal government, alarmed at having to pay out increased Medicaid funds to stares that used this method, devised a plan to derail it. A little-publicized 1991 law made such licensing fees illegal unless levied against all hospitals equally. It counted on opposition from hospitals that took no Medicaid patients (and therefore had no reason to agree to the fees) to fight state passage of licensing fee bills. That opposition was swift in coming in Tennessee. The state is home to Hospital Corporation of America and HealthTrust, two of the nation's largest hospital chains, and numerous other hospitals. The Tennessee Hospital Association, of which Hospital Corporation of America is a powerful member, opposed the fee. A state bill to extend the fee to all hospitals was virtually dead, said Tony Garr, head of the Tennessee Health Care Campaign, until ADAPT of Tennessee, led by organizer Diane Coleman, got involved. “The only way we could bring attention to the issue was to hit the streets,” said Garr. “ADAPT played a very important role" in helping other groups in the Tennessee Health Care Campaign “move to direct action,” said Gordon Bonnyman, a lawyer who has worked with Medicaid issues in Tennessee. Beginning in January, Coleman and Tennessee ADAPT members staged weekly actions, targeting the large hospitals as villains who were destroying the state’s Medicaid program. The first week a group of nearly 200 people, headed by ADAPT, marched to the Hospital Association's offices. The next week the group staged a protest in front of Baptist Hospital, which opposed the fee. The group hung a sign asking “Are you Christian?" on the hospital administrator's portrait. The group‘s fifth action targeted Thomas Frist, who heads Hospital Corporation of America. “We had a small casket, with dollar bills draped over it, and a sign that read, “Thomas Frist, how many must die for your $1.235 million in annual cash compensation?” said Coleman. The protests had the desired effect. Frist, reportedly upset by the negative publicity, capitulated the day the group surged on Health Care Association headquarters with the cross and withdrew his corp0ration’s opposition to the fee—reportedly urging legislators to vote swiftly to pass the law to avoid more unfavorable publicity. “There have been Medicaid cuts for the last 15 years in this country, and they have gone mostly unreported," said Bonnyman. “ADAPT galvanized people. Without them, the whole thing would have gone down the toilet." M.J. - ADAPT (745)
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 - ADAPT (729)
This is a continuation of the article that starts on ADAPT 745 and the full text is included there for easier reading. - ADAPT (721)
This is a continuation of the article that starts on ADAPT 745 and the full text is included there for easier reading. - ADAPT (739)
This is a continuation of the article that starts on ADAPT 745 and the full text is included there for easier reading. - ADAPT (746)
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 (741)
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