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Home / Albums / Tag Access Living 7
- 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 (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 (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 (217)
Mainstream magazine, no date listed, p.9. Attachment IV [Story continues in ADAPT 211 and then ADAPT 210 but is included here in its entirety for easier reading. Story seems to be cut off at the end.] Photo bottom half of page: Image of people marching down the center of the street, some carrying signs, one with the ADAPT logo and another saying, “APTA OPPRESSES." Line snakes back out of sight alongside traffic in the back. Wheelchairs are lined up smartly presenting an impressive image. [Headline] ADAPT PUBLIC TRANSIT OR ELSE by Mike Ervin One of the largest civil rights marches in history by people with disabilities was held Sunday, October 7, 1985 in downtown Los Angeles to protest the American Public Transit Association (APTA)'s policy of local option transit for disabled. In response to an “invitation” by American Disabled for Accessible Public Transit (ADAPT) to join in picketing the annual APTA convention, national leaders of the Disability Rights Movement converged at MacArthur Park to roll the 1.7 miles to the convention site at the Bonaventure Hotel. Bill Bolte of the California Association of the Physically Handicapped (CAPH) took a head count of the line of people in wheelchairs rolling single file down the middle of Wilshire Boulevard and announced that there was 215 present. The L.A. Police Department had refused to issue a parade permit to the group and had said it would not allow the long planned parade to be held on the street, but when 200 plus wheelchair users took to the pavement (no curb cuts) all the police could do was route traffic around the procession. It was an impressive sight; more than twice the number of people ADAPT had turned out for previous demonstrations at the annual conventions of APTA. As the line of people stretched more than a block in front of the posh Bonaventure Hotel where APTA was staying, the L.A. Police waited; there wasn’t much they could do except establish their presence. The protesters marched into the hotel lobby taking up most of the available space. Chants of “We will ride!" Filled the atrium below as bewildered hotel guests wondered what all this could possibly be about. The Hotel Security immediately blocked the one wheelchair accessible elevator to the main lobby. This escalated (so to speak) the confrontation, as demonstrators got out of their wheelchairs to block the escalators, saying “if you block our access, then we will block the escalators. No one will be able to use them." Meanwhile the police discussed the strategy of arresting certain people first whom they had identified as leaders. Photo: A man, Bob Kafka, sitting awkwardly, almost falling out of his manual wheelchair, apparently handcuffed behind his back. His legs are falling under the chair, and he is surrounded by four or more police officers. Article continues: Eight people, one woman and seven men, were arrested and booked without charges. The police told the media that the charge was “refusing to leave the scene of a riot.” The woman arrestee was released Sunday night, five of the men were released the following afternoon, and the last two men were released Tuesday morning after 53 disabled individuals held an all night vigil outside the county jail. On Tuesday morning, the American Civil Liberties Union (ACLU), represented by Lou Nau, the chairman of the Disability Rights Committee of the ACLU, outlined the treatment that the arrestees faced. Four of the men were handcuffed behind their backs and left to sit in the police vehicles for up to five hours. Mike Auburger, a quadriplegic, was not allowed to use the bathroom for eight hours, causing hyperreflexia. Individuals on sustaining medication repeatedly asked for their medication, but never received it. Nau said to permit no bail for misdemeanor offenses is clearly against the law. Although APTA tried to discredit the protestors as a “small militant group of outsiders," they represented a wide spectrum of the Disability Rights Movement including Robert Funk, Executive Director of the Disability Rights and Education Defense Fund; Michael Winter, Director of the Center for Independent Living, Berkeley, CA; Judy Heumann, of the World Institute on Disability; Joe Zenzola, President, California Association of the Physically Handicapped; Peg Nosek, of Independent Living Research Utilization Project, Houston, TX; Catherine Johns, President of The Association on Handicapped Student Service Programs in Post-Secondary Education; John Chapples, Department of Rehabilitation, Boston, MA; Mark Johnson, Department of Rehabilitation, Denver, CO; Marco Bristo, Director, Access Living, Chicago, IL; Harlan Hahn, Professor, University of Southern California; and Don Galloway, D.C. Center for Independent Living. The following days saw many more protests in the Los Angeles area. On Wednesday, about 50 individuals arrived at the office of Larry Jackson, Director of the Long Beach Transit Authority, who is the incoming President of APTA. After being denied a meeting with him, they went out into the streets. The police gave them l0 minutes to disburse or be arrested. When no one moved, the police proceeded to arrest the protestors and take them to jail in 6 dial-a-ride vans. These individuals were booked and then released, as it was not possible for the Long Beach Police Department to accommodate so many disabled people. The passers-by had many different reactions to what they were experiencing; some were mad at being detained, some joined in. One man gave protestors a banner which read “help” and proceeded to distribute little American.... [rest of the article is not available.] Three photos. Photo 1: At the bottom of an escalator a mass of people in wheelchairs gathered together, Julie Farrar in the center, holding a picket sign: “APTA DESTROYED 504”. Photo 2: A man, Chris Hronis, lying on his side on the floor, handcuffed behind his back, surrounded by four or more police standing over him. Photo 3: Through the window of a van you see two man, Chris Hronis in back and Bob Kafka in front of him, sitting in wheelchairs. Both are handcuffed behind their backs. - ADAPT (635)
Different TIMES, September 24, 1990, p. 6 ADAPT fights for attendant services (Reprinted with permission from the Disability Rag; Box 145; Louisville, KY 40201.) [This story continues on 623 but the text is included here in full, for ease of reading.] “People with disabilities have the civil and human right to dependable attendant services that meet our daily needs in the location and manner of our choice." This simple declaration, made in Denver this summer, signaled the offensive being launched by ADAPT against “the nursing home lobby feeding off peoples' lives." It's ironic, says ADAPT member Mark Johnson. "Here we've finally got our rights now, in a law, and here you have more and more severely disabled people wanting to kill themselves—literally kill themselves—because they're being forced into nursing homes." “That Ken Bergstedt in Nevada [who petitioned the court in May to disconnect his respirator] is literally saying, “l'll end my life before I'll go in a nursing home," Johnson said. “What do you expect when people only have institutionalization to look forward to?" adds actress Nancy Becker Kennedy, one of the group that conducted a hunger strike in Los Angeles in July to protest the cut of California’s In Home Supportive Services. “Their attempts to stay in their homes are thwarted." lt’s the same with Georgia's highly publicized Larry McAfee, who was just put into a “group home," says ADAPT. Even after all the publicity, the State of Georgia will not put any money into funding attendant services in one's own home. And ADAPT is fed up. Recalling the phrase the transit industry used to argue that each city should decide whether or not to put lifts on buses, ADAPT calls the patchwork system of funding in-home services “the old ‘local option’ stuff all over again." “We're sick of it,"says Johnson. There needs to be a national commitment. In California, activists battled for several months to restore their In Home Support Services program which had been entirely cut from the state budget—and succeeded only in restoring it to its former level, which allows a disabled person to hire an attendant only at minimum wage and for no more than eight hours a day. People who need an attendant around the clock, like Ken Bergstedt, have little hope of avoiding a nursing home even in California, often cited as the state with the best attendant services program in the nation. Yet such battles sap the energy of disability activists for the larger fight for a national commitment. ADAPT has modified its former name, “American Disabled for Accessible Public Transportation" to “American Disabled for Attendant Programs Today" to reflect its new focus. ADAPT says attendant services are a right. The group wants the program it's calling for to make attendant services available "based on functional need" rather than “whether a person can work or not." They don't want "employability" to be a "condition for getting services. And they don't want eligibility based on any specific disability, as it is in many states now. They want it to be available “to people of all ages, 24 hours a day, seven days a week, with back-up emergency services."They stress they're not asking for “someone to hold your hand" but are speaking of the realistic needs of people like McAfee, Rick Tauscher, and Bergstedt who need an attendant available around the clock. They also say a program that allows the disabled person maximum control over an attendant is mandatory. Maybe a disabled person won’t want that control; maybe they'll want someone else to handle the paperwork and hiring decisions. That should be the disabled person‘s option, they say. There’s a quality-control issue here, they insist; they want to make sure disabled people get quality care but are allowed maximum say over personal services they receive—which is all too often not the case today as home "health" agencies muscle their way into the home "care" field. They‘re sick of the word “care.” They want a program that doesn’t keep anyone from services because they make too much money; they're willing, they say, to deal with a sliding scale for fees for such a program; but they want it available to anyone who needs it—regardless of income. It's a right, and cost is simply not an issue, they say. Keeping disabled people in institutions is ludicrously more expensive than providing in-home services in this country today. They blame that lack for the problems Larry MeAfee's constantly found himself in; they blame the nursing home industry for siphoning off the money that could go to fund such services. And they charge that home health agencies are nothing more than “the new nursing homes." Home health agencies “take people on Medicare and give them services and then bill them for $60 a pop," says ADAPT organizer Wade Blank. “Then when their Medicare coverage runs out after six months, they drop ‘em." The group says it’s also targeting “the big insurance companies like Prudential" and health maintenance organizations, who they say have a vested interest in keeping the system like it is. “We're saying that ethically and morally, nursing homes are not the place to go," says Blank. “When I see my severely disabled friends, living in their own homes, when l visit them in their apartments, listen with them to records or order in a pizza—and then I see my friends living in nursing homes, wasting away, waiting to die, I get very, very angry,” said Southern California ADAPT member Lilibeth Navarro. A survey of ADAPT members through their newsletter, Incitement, led them to decide to shift the focus to attendant services, said Navarro. And they're emphatic about the term too. “It’s not ‘attendant care‘ anymore," said Blank. “Whenever anybody said ‘care’ everybody booed,“ he added. It is fitting that ADAPT, whose original members came from Denver‘s Atlantis Community, will focus on attendant services. It was that need which led to the start of Atlantis, a “community” of disabled people and attendants. Atlantis “has a neat system,"agrees Navarro, noting that the 24-hour rotary attendant services allows any Atlantis person to have an attendant available whenever it's needed. “We could call an attendant at 11:30 p.m. and have somebody here," she said. “People who are having trouble with attendants can call and get an emergency back-up." Navarro, like others, said she knew of people “who endured abuse because they were afraid to lose their attendant"—"because it's so hard to find somebody, and nobody to turn to in an emergency situation." She related the story of a man whose attendant simply walked out on him and left him, unable even to reach a phone, for four days. “If his father hadn't checked on him, he'd be dead." “Only a national attendant program," she stressed, “will free us from emotional slavery Nancy Becker Kennedy agreed with Navarro. “The linchpin for independent living is in-home attendant services. It’s humane; it gives us a future." The group has sent a letter to Health and Human Services Secretary Louis Sullivan demanding a meeting in Atlanta Oct. 1; they've given Sullivan until Aug. 15 to reply. ADAPT activists from around the nation will descend on Atlanta the first week of October to launch the fight. They’ll be calling for a quarter of the money now going to the nursing home industry to “go into a pot for attendant services." As usual, ADAPT doesn’t expect this to happen without a fight -- primarily from the “nursing home lobby.” “This October," says Blank, “we will serve notice on those groups who are the enemies of a national attendant services program." TEXT BOX: ADAPT will converge on Atlanta — home of Morehouse College, HHS Secretary Louis Sullivan’s alma mater — on Sept. 28 for week-long direct action protest and training. Nationally known organizer Shel Trapp will conduct the session Saturday, Sept. 29. For more information on travel and hotel arrangements, contact ADAPT in Denver at (303) 936-1110. — Reprinted with permission from the Disability Rag; Box 145; Louisville, KY 40201. - ADAPT (572)
WHEN IS TOO MUCH: "Helping" the Disabled by Mary McKnew Just as airplane pilots want assurance that a plane's steering wheel won‘t come off while flying over Europe, people utilizing a bus wheelchair lift deserve to expect that the lift will operate in a safe and predictable manner. However, I have to admit that too much focus on “safety” issues has me a little worried. To some transit officials, “safety” issues in providing transportation services for people with disabilities raise old stereotypes of helplessness and can quickly become a rationale for imposing paternalistic policies. For example, here in Olympia, the local Intercity Transit Authority and the state's Department of General Administration are co-sponsoring a shuttle service between the capitol and downtown Olympia with routes passing other major states offices. With the local parking problem, this system is extremely convenient. From the beginning, all vans used in the service have been equipped with wheelchair lifts. All this, of course, is very commendable. So, what's the problem? Unfortunately, the van's tie-down system, lack of grab-bars and driver policies reflect a paternalistic attitude towards disabled passengers by promoting dependence in the name of safety. The tie-down system is one of the most primitive I have ever encountered. It uses straps to bind each of a wheelchair's four wheels to the floor in a rather intricate system that takes the driver approximately five minutes to accomplish. To tie-down a wheelchair, the driver must get on his or her hands and knees. Thus, it is not possible for even very mobile wheelchair users to accomplish this independently. However, once the straps are in place, none of the wheels will move even a centimeter. During this five minute routine, other van passengers wait outside (some glancing at their watches) until the driver folds the lift back in place and allows them to board. After being strapped down, the driver then will place a seat-belt around the wheelchair user. Seat belts are not available for other passengers. If the wheelchair user decides to reject use of a seat belt, the driver will attempt (sometimes loud) persuasion, finally telephoning into the office to report that the passenger has refused use of the belt. I use a wheelchair for mobility due to a low and incomplete spinal cord injury. I object to many of the features in the Intercity Transit system that, to me, are designed on the premise that people with disabilities will always need a lot of assistance from the driver. Although the driver should be trained and willing to provide assistance if it is requested, the system should be designed to promote maximum independence. Most tie-down systems can be easily manipulated by most wheelchair uses with finger movement. Although some wheelchair users need a seat belt due to problems with balance, drivers should not assume they are needed by all such passengers. A policy that requires a driver to phone in to report a passenger's rejection of the seat belt is founded on the belief that people with disabilities are incapable of making sound decisions regarding their own safety. Additionally, although grab-bars are located along the ceiling walls of other seats, none are available near the tie-down area. Thus, if the bus lurches while enroute, a wheelchair passenger has nothing to hold onto. I suppose this makes it more likely a wheelchair passenger will comply with the seat belt policy, recognizing that a passive restraint is better than none at all. Intercity Transit has been providing paratranslt services to people with disabilities for a number of years. They have moved into the provision of mainline transportation services (i.e., access to the regular bus service) only recently. It appears that they have simply shifted their operating policies and procedures from one system to the other without considering if these are applicable to the new service. I have brought my objections to Intercity Transit’s attention. Although the staff disagree with most, they are reconsidering others. Safety is a concern to people who use wheelchair lifts. However, we cannot allow it to become a convenient rationale for either eliminating the service or instituting restrictive policies that treat people with disabilities in a disparate manner from other passengers. PHOTO (by Tom Olin): A large crowd marches downhill on a wide street. In the front row a little girl in a wheelchair (Jennifer Keelan) is pushed by her mother (Cindy). Beside them a woman in a motorized wheelchair (Diane Coleman) and a long skirt and white jacket has a sign behind her reading "we the people." Beside her a man in a manual wheelchair (Bob Kafka) with a big salt and pepper beard rolls along. In the row behind, between Bob and Diane, is a woman in a wheelchair (Mary McKnew) and a man who walks (Lannie Schuman) are visible and next to them another man marches behind Diane. Behind Jennifer and Cindy is Tari Susan Hartman. Rows of marchers go further and further back up the street to the top of the hill and presumably beyond. Caption reads: Just to the right at the placard Washington residents Lannie Schuman and Mary McKnew participate in a San Francisco demonstration for transportation rights. ABOUT THE AUTHOR... In 1987, Mary McKnew tried to get arrested for the first time. She sat in front of a San Francisco police van and refused to move. She sat in her wheelchair directly under the wheels of a bus and refused to move. "I did many illegal things." she says wryly. What she did, she did in the name of accessible public transportation for people with disabilities... a personal and political quest McKnew has been following for the past 12 years. Although McKnew wasn't arrested at that demonstration (in spite of her civil disobedience efforts), many others were. More than 500 people organized by the American Disabled tor Accessible Public Transportation (ADAPT) marched through the streets oi San Francisco to the city hall to protest the continuing discriminatory policies supported by the American Public Transit Association (APTA). ADAPT has been a persistent thorn in the side of APTA for many years. Fortunately, their persistence paid off. With the final signing of the Americans With Disabilities Act (ADA) expected any day, ADAPT—- and McKnew — will see many of their demands for fair, accessible transportation become reality. But McKnew says that just because you pass laws doesn't mean you quit being an activist. "The ADA will bring private transit companies under regulations just like public ones," she says, "but just passing a law doesn't mean we solve the problem. implementation is a whole other thing." In part, McKnew was referring to the possibility that some private companies may reduce the seating capacity in some of their smaller vehicles in order to side-step the accessibility requirements mandated by the ADA. "What the ADA will do is provide a clear avenue for lawsuits," she says. Is McKnew planning on handling some of those lawsuits herself? It may be too early to tell. Currently an executive policy assistant in the Office of the Governor, McKnew is also a second-year law student at the University of Puget Sound. (This story continues in the original format on 571 but is included here in its entirety for ease of reading.) - ADAPT (536)
Independen Life Spring 1990 Article 1: Urgent Call to Action! Pass Strong ADA Now! ADA needs you! And your family, your neighbors and your colleagues — to flood Washington with appeals for justice, today and everyday, until the president signs a strong ADA! Representative Lynn Martin 815/987-4326 (local) 202/225-5674 (Wash.D.C.) 1208 Longworth Office Building Washington D.C. 20515 NO TDD AVAILABLE Lynn Martin (R-IL) must hear from as many of us as possible for two very important reasons: 1) She is a member of the House Rules committee, which determines what version of the ADA reaches the House floor. Tell her you support the Senate version of the bill. 2) Martin, who is not an ADA co-sponsor will be running for the senate this fall. Let her know that we need her support. Contact Martin and all the Illinois House members today to urge their support of a strong ADA. NO WEAKENING AMENDMENTS! The grassroots efforts targeted at the U.S. House of Representatives will determine whether the ADA is ultimately enacted in the strongest form possible. Weakening amendments are expected. Our opponents will not give up. LET'S NOT STOP NOW! If you have sent letters to the President, Speaker Foley and Minority Leader Michel, send them each two more. If you have sent cards to members of Congress, send some more. If you have visited your Congressional office with five friends, visit again with more friends, and call every week to check on the progress of the ADA. (See page 5 for The ADA Western Union Hotline Number.) PHOTO Two women smile at the camera. The woman on the right has a sign behind her head that reads "PASS ADA WITH NO WEAKENING AMENDMENTS." The other woman holds her hand in a partially raised fist. Behind both is a third woman in the shadows, who is also smiling. Caption reads: Access Living's (l to r) Bobbie Boyce- Williams, Beverly Gonzalez and Pearl Mathews support the March 12th rally in D.C. at Chicago's rally for the ADA held in the Federal Plaza. Groups through-out the country held similar rallies on the same day. PHOTO: A line of protesters in a line at the front of the ADA March, chanting as they go. On far left two older women carry a huge poster. To their right and in front George Roberts carries a poster reading "We Shall Overcome." To his right Stephanie Thomas wheels her manual chair with a sign over her legs that reads "Access is a Civil Right". Holding on to the back of her chair is Frank Lozano who is also holding the harness of his dog guide Frazier. To their right is Jennifer Keelan, a girl of about 8 years who is partially standing in her chair as she chants. An older woman (her grandmother?) is pushing the chair. She and Frank are wearing ADAPT bandannas as headbands. To their right is her little sister Kaylee, walking and holding the handle of Jennifer's chair. Stephanie, Frank, Jennifer and Kaylee are wearing ADAPT T-shirts with the no steps logo. Behind them on the right side of the street is a huge building with columns along its side. Caption reads: Close to 1,000 people joined the "Wheels of Justice" march to the Capitol, March 12, 1990. PHOTO: Looking up from below at the dome of the Capitol against the sky. In front is a huge banner reading "Injustice Anywhere is a Threat to Justice Everywhere" Martin Luther King, JR. Quote beside photo: "It was great to see the unity among the disabled people there. It was an honor to be arrested and serve time with my colleagues." -- Michael Winter, Berkeley, CA President - National Council on Independent Living, NCIL. PHOTO: Picture of Cassie James squished between the back of a power wheelchair and a desk, holding on so she can sit up. Over her head three other protesters (Erik von Schmetterling, Carol Marfisi and Kent Killam) sit on the floor against another desk. Caption reads: Sit-in at Congressman Shuster's office. PHOTO: Marchers in wheelchairs, scooters and walking make their way up toward the Capitol building. In their midst is the ADAPT flag. One man is bent over helping a person in a manual wheelchair. In the foreground a person in a wheelchair has a sign on the back of their seat that reads: Basic access to every new home. The rest is unreadable, but is the basic tenants of Visitability from the group Concrete Change. Quote below picture: "We are not asking for our rights, we are taking them." -- Barbara. Jersey City, NJ ADAPT Member PHOTO: ADAPT members in front of the White House. In the foreground a man and woman in wheelchairs sit talking. Others are on the sidewalk around them, and behind them all is a line of ADAPT protesters with their wheelchairs backed up to the fence. Quote under photo: “The best part of it was that for once we brought every different type of advocate together to form a unified force for change. There was everyone from rehabilitation professionals to independent living staff to congressional staffers to A.D.A.P.T. It really demonstrated the potential power we possess." -- Chuck Graham, Springfield. IL, Coalition of Citizens with Disabilities in Illinois. PHOTO: A slightly jumbled line of people in wheelchairs on the sidewalk next to a major boulevard. Behind them are other people standing and in wheelchairs, An ADAPT flag and another flag appear to be affixed to a nearby light pole. Toward the back of the picture someone is holding a sign reading "ADA NOW." Folks in the front of the shot are from Chicago ADAPT; most are wearing T-Shirts with the old ADAPT, no steps, logo and the woman in the very front has the Chicago ADAPT "ADAPT or Perish" T-shirt (partially obscured.) Caption reads: Joining the marchers are Dr. I. King Jordon, Paulette Patterson from Chicago, Congressman Major Owens, Justin Dart Jr. and Michael Winter, N.C.I.L. President. Quote beside photo: "I continue to feel empowered by having seen our people, in spite of most perceptions to the contrary, “stand up" for their rights." W. Michael Yeager. Washington D.C., Photographer Article 2 (The full text of this article, photos and captions appear here, in the photos it is on 536, 525 and 520): ACCESS LIVING JOINS RALLY AND MARCH ON NATION'S CAPITOL The biggest-ever national non-violent direct action sponsored by A.D.A.P.T. in support of disability rights and the Americans with Disabilities Act occurred in Washington D. C. March 12-14. The weather was unusually hot. Chicago represented one of the largest contingencies. Beto Barrera, Mike Ervin, Nancy Kelen, Ginger Lane, Rebecca Lanen, Rene Luna. Susan Nussbaum, Tom Rafferty, Judith Savage and Ora Schub represented Access Living at the historic event. MARCH 12 THE MARCH AND RALLY ON CAPITOL HILL MARCH 13 163 DISABLED PROTESTERS SEIZED AND 104 ARRESTED FOR REFUSING TO LEAVE THE CAPITOL MARCH 14 45 PEOPLE ARRESTED FOR TAKING OVER CONGRESSMEN SHUSTER'S OFFICE Photo: Marchers headed down an Avenue in DC, some are in chairs and two smiling men in white shirts and ties are in the foreground. One has his power fist raised and the other is holding a sign that says "National Association of the Deaf NAD. To: Congress, Re: ADA, Just Do It!" Caption 1 reads: "It was great being part of this movement and using our power to make things change." -- Rebecca Lanet. Chicago. IL, Access Living. Caption 2 reads: Access Living's Susan Nussbaum (far left) with DREDF's Marilyn Golden at the march. Photo: I. King Jordan standing at the plaza on the Capitol steps. Behind him you can see the top of the fountain and the upper level balcony of the Capitol as well as some fancy archways. He has a microphone in front of him and he is smiling as he addresses the crowd. Caption reads: “The time to pass this bill is now. We can wait no longer" Dr. I. King Jordan, Washington DC, President Gallaudet University A quote: "Together we shall overcome" Photo: A boy in wheelchair (Kyle Glozier) with a communication device on his lapboard. He is wearing several buttons and an ADAPT shirt. Hanging from the front of his lap board is a poster reading "We will Ride." Caption reads: An Americans Disabled for Accessible Public Transportation (A.D.A.P.T.) member. Photo: The Capitol rotunda crammed with people in wheelchairs and a few people standing. On the wall in the back is a life-sized black statue of a man from some olden times, and a humongous painting in a gilt frame. Everyone is looking toward a man in a suit who is standing next to someone doing sign language interpreting. Caption reads: “It was the most incredible amount of power a group of disabled people ever held over its government. We closed down the Capitol while people were being arrested. All visitors and staff were turned away from the Hill for several hours. Speaker of the House Foley and Minority Leader Michel who only meet in the rotunda for state occasions both came to the rotunda together to meet with us. I guess you could say that ADAPT actions are definitely occasions. " Mike Auberger. Denver, CO, ADAPT Member Photo: The dome of the Capitol rises in the background and below it is the ADAPT flag. People in wheelchairs being pushed, in power chairs, people walking, all heading toward the Capitol. Photo: Looking down into the crowd one can see the mix of people. Several are gathered around Dr. I. King Jordan. Others are sitting or standing listening or waiting. There are 2 men with mouth driven wheelchairs, one of whom is Tim Baker. There is a woman in a miniskirt and a sports wheelchair. Mike Ervin is kind of in the middle foreground. Caption reads: Michael Ervin (foreground) was among one of the 10 Access Living staff members at the A.D.A.P.T. action. Ervin is past president of Chicago's ADAPT group. Photo: Five people in wheelchairs and one standing person look toward a van. The standing woman appears to be clapping and Eleanor Smith (one of the folks in chairs) has her power fist raised. A scooter in the foreground has a Concrete Change sticker on it. Behind the group you can see the front of the Capitol, the side facing the Supreme Court and Library of Congress. Caption reads: "The impact we made was phenomenal. By arresting 104 disability rights activists, the police facilitated a very empowering situation. For eight hours as we waited to be processed through the system, we met new co-advocates, argued, debated and strengthened our political power." -- Ginger Lane, Chicago, Access Living