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Rocky Mountain News Sunday March 27, 1977 Disabled are limited by society's attitudes By Alan Cunningham PHOTO by John Gordon, News: A young man (Larry Ruiz) sits in a wheelchair in front of a building. The shot shows his whole body and wheelchair and is looking up at Larry's smiling face. (For those who knew Larry, it's a classic Larry smile.) Caption reads: Larry Ruiz is one of those leading better lives of the Atlantis community. Nobody seems to know exactly how many disabled Americans there are - or even how one should define them. In Colorado, the figures are even more sketchy than they are nationally. But one estimate, based on federal statistics, suggests there may be as many as 350,000 disabled citizens in this state. If true, that would mean that 14 percent of the population suffers from some disability. The same projection indicates that as many as 83,000 of these persons as unable to work, keep house or go to school. Gov. Dick Lamm sometimes uses a more conservative figure of 10 percent. But even if that is closer to the truth, it shows that the plight of the disabled is a major problem. It also offers a clue as to why the disabled seem sure to emerge soon as the country's newest civil rights lobby. The have the numbers to make themselves heard - and seen - if they can begin to speak out with a unified voice, demanding their fair share of the American Pie. Until now, they've suffered the fate of most minority groups: invisibility. This is ironic, since most are highly visible if anyone chooses to see them. But for many reasons - not the least a sense of guilt - the able-bodied tend to turn away from those with crutches, wheelchairs and seeing eye dogs. And those who plan public facilities and services often reflect this attitude. It is politically safe for them to ignore the needs of the disabled pretending such persons make up a tiny fraction of the population and thus don't deserve a major share of attention. A myth to be sure. But it is only one of several myths which the Atlantis community, a group home for handicapped persons, in a minority report to the upcoming White House Conference on Handicapped individuals, hopes to destroy. For instance, there is the idea that nursing homes are primarily heavens for the aged and the infirm. The opposite side of that assumption is set forth in the opening chapter of the Atlantis report. Few realize that our nation's institutions also house a great many disabled young persons, some in their early teens. THESE ARE THE victims of our society's response to children and young adults who have muscular dystrophy, cerebral palsy, birth defects, blindness, and neurological disorders, or have survived accidents of varying kinds. But they are there by the thousands, many simply because they were labeled by physicians and psychologists as "retarded" and unable to function normally. It is difficult to imagine a more stifling or inappropriate atmosphere for a young person. It is inhumane to shackle and imprison youthful energy and curiosity into the nursing home routine. Such repressive living leads to anger, hostility and finally to the withdrawal and waste of a battered ego. As the report goes on to explain, the Atlantis group has fought to get more than 30 young men and women out of nursing homes and institutions so as to demonstrate that they can reverse this pattern if given a chance. But, even as it begins to reverse, new problems emerge. Most have to do with obstacles which the world has placed in the way of the disabled person. Again, it has a lot do with society's tendency to act as if he doesn't exist. Funds for rehabilitation programs, both public and private, are so scarce that only a small fraction of the disabled ever benefit from them. A prime example of this comes from State Rehabilitation Director Glenn Crawford, who says his division has determined that 135,000 persons in Colorado are potentially eligible for its services. Yet, in 1976, the division served about 14,300 persons. The figure will inch its way up to 16,000 this year. Such private facilities as the widely acclaimed Craig Hospital also have finite resources. They apply guidelines to decide which applicants will be accepted and which won't. Needless to say, a lawyer whose only disability is the loss of his legs has a better chance than a 19-year-old with no schooling who has lain on his back for most of his life. Funds and facilities for handicapped scarce Those who don't get the help often wind up in the category that Wade Blank of Atlantis refers to as "the losers." He contends that those who work with the disabled have too quickly given up on this group of people consigning them to lives of hopelessness. And he further argues that the implications of this have narrowed opportunities not only for the severely disabled, but for many others with less serious problems. For even those who have escaped the awful label of the "loser" run into obstacles every day. The Atlantis report focuses on many of these obstacles. These are some of the observations: EDUCATION. Many disabled youngsters in the past have failed to get adequate schooling either because they were in institutions or because their families assumed they would never be able to lead normal lives as adults and consequently didn't need to be trained for careers. Even those who went to school often were sidelined into special programs for the handicapped. While academic standards were high in such programs, the students were poorly prepared either intellectually or emotionally, to get along in a world of able-bodied persons. The recommended solution, "mainstreaming"- that is, letting disabled youngsters and adults go to school in the same classroom with everyone else. MONEY. The complexities of the various welfare programs on the county, state and federal level often conspire to keep disabled persons in nursing homes. Counties often find they have to pay more money if a man or woman is living in his own apartments, or in a facility, such as Atlantis, than they do if he or she is in a nursing home. That's because the federal government pays the bulk of the nursing home fee. Likewise, assistance payments are cut off if a disabled person earns more than a pittance in a month's time. The cutoff can be as low as $65. The "maximum level of income"from federal state and county assistance payments is $185. This means many disabled persons are living below the poverty level as it has been defined for other underprivileged groups. The solution as viewed by those who put together the Atlantis report, is to simplify and integrate the complicated payments system. But even more important, to increase payments so that everyone gets the same amount of money whether he is in an institution or out. TRANSPORTATION. The report talks about a number of things here including electric wheelchairs and curb cuts, but is main statement under this heading is that bus systems such as the Regional Transportation District (RTD) should become fully accessible to the disabled. RTD, it contends, has been unresponsive to the needs of disabled would be riders for transportation to work, school and for pleasure trips. Even the special HandiRide service - which RTD often boasts is a frontrunner in the nation - is given poor marks. LAWS. [not legible...] Colorado concerning the disabled in general and the severely physically disabled in particular, the report states. Furthermore, it is not realistic to think that the disabled will get effective legislation passed without having government officials sensitized to the disabled's problems. This may already be changing. Largely due to lobbying by Atlantis, hearings were underway in the General Assembly this week on two bills aimed at helping the disabled. One, a Senate bill now in committee, would allow more Coloradans to receive payments so they could hire home attendants. The other, a House bill, is a "civil rights bill for the handicapped." It would bar discrimination against the disabled. Backers of the latter bill point out that it's needed because the federal civil rights laws, while dealing with the rights of racial minorities and women, have never guaranteed these same rights to disabled citizens. Idealy, says the Atlantis report, Congress and the state legislatures need to weed out laws which are confusing and contradictory, often creating "disincentives"for the disabled to pursue more normal lives. A wholistic approach is needed. JOBS. Virtually every problem mentioned above, plus all the others catalogued in the report, tend to stand in the way of the disabled person who seriously wants to go to work in spite of the lip service paid to the slogan, "Hire the handicapped," many find the doors still closed. The reasons are many and the problems complex. Lack of schooling is a factor. Some disabled persons have languished in sheltered workshops, counting fish hooks and getting paid $10 a month for it, the report says. Others have an education but find that architectural barriers, or the lack of adequate bus service, keep them from getting to jobs they could perform. And attitudes often stand in the way when physical barriers are moved aside. "Perhaps the greatest barrier of all is in the minds of men," the report notes. It advocates more and better training programs, plus affirmative action plans to assure that larger numbers of disabled workers are hired by public and private employers. In an elaborate ceremony several weeks ago, the Atlantis report was presented to Mayor Bill McNichols. But privately some of those connected with the report conceded they didn't expect to see much action on the local level until public policies in Washington and throughout the nation begin to change significantly. That's why the Atlantis group is placing much emphasis on its efforts to make an impression on the Carter administration during its formative period. The time seems ripe for a coalition of disabled groups around the country to launch a concerted civil rights drive on behalf of their "invisible" constituents. And the first test may come April 5, when many groups have threatened to stage a sit-in at offices of the Department of Health Education and Welfare, including the regional office in Denver, if new HEW Secretary Joseph Califano hasn't issued new regulations to implement laws for the disabled. "The disabled have been ignored far too long in this society," declares the Atlantis report. "We are demanding that our rights be addressed. We are giving you, the policy makers, our findings and recommendations on how to solve the inequities in the system. "The next is yours." Such words, when voiced by other groups, have inevitably been followed by major social changes. It seems likely the same pattern will apply here. PHOTO by John Gordon, News: A man lies in a hospital bed, covered by sheets. Photo is very dark and hard to make out. Caption reads: Shooting victim [unreadable] from nursing home [unreadable] he said [unreadable] has been paralyzed since [unreadable].
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[Headline] Handicapped Pin Hope on Atlantis By Sharon Sherman Denver Post Staff Writer The word "activist' once scared a group of young Handicapped Denverites. But after almost two years of wheeling themselves onto picket lines, sitting through meetings with government agencies and speaking out about the problems of being shunted out of the mainstream of society, they agree that the term activist describes what they have become. And they are proud of it. "At least we're actively trying to do what we can instead of sitting back and wishing', is the way Carolyn Finnell, 31, sees the new role of many physically handicapped young people. [Subheading] Buses for Handicapped Carolyn, and others like her in the handicapped community, helped convince the Regional Transportation District to begin adding buses equipped for the handicapped. They have testified at various hearings about problems of the disabled. [TEXT UNREADABLE] They are among the principal planners of the Atlantis Community, a project which would offer the physically handicapped many types of residential living arrangements with services they need available nearby. Carolyn, who has cerebral play which confines her to a wheelchair and distorts her speech, said it was hard to "face speaking out" to rooms full of strangers, but that living with other young adults at Heritage House Nursing Home youth wing has "brought me out a lot." [Subheading] Stayed Inside Shell If Mike Smith, 20, had had his way, he would have stayed inside his shell of poetry writing, reading, and discussing philosophy and listening to music. "I don't like being in politics, but it seems that's the way we have to go,'' Mike explained. " I guess you have to lose a little to get a lot.'' Linda Chism, 27, believes that for the first time, there are enough young disabled people ready and willing to push themselves forward, to speak out, that there is a chance of changing the entire lifestyle of the handicapped. For Mike Smith, those changes may come too late to be enjoyed. [Subheading] Depressed, Angry Mike has muscular dystrophy, a fatal disease. He has spent the past five years in nursing homes, living in one where, at 15, he was punished for breaking rules and being sent to the locked ward for 24 hours at a time. Finally, lonely for friends his own age, depressed at watching his elderly roommate die of cancer, angry at rules which confined him to the small world of the nursing home, Mike attempted suicide. "Luckily, I had no idea how to go about it," he remembers. "I took 20 bowel softener pills and instead of dying just created an incredible mess." For Mike, as for Carolyn, the youth wing at Heritage House is infinitely better than what they had before. But, Mike points out, once the first door that closes any human being away from the rest of the world is opened, that human being will see other doors to open. So it has been for Carolyn, who counted fishhooks for five years in a sheltered workshop before someone recognized her potential. [Subheading] Wants Meaningful Job Now, with a degree in journalism from Community College behind her, Carolyn wants some other things she's not getting out of life. Things like a meaningful job, an apartment of her own where she won't have to keep half her belongings in boxes under the bed, the privacy to entertain friends. "I'm probably living a more active life than I ever have before", she said, explaining that she now edits the youth-wing newsletter and is learning braille so she can tutor blind students. Having come so far, Carolyn's not willing to stop here. Neither is Linda Chism, who has had crippling rheumatoid arthritis for 20 years. Linda has "suffered a lot of surgery and a lot of hard, hard therapy" to become fairly mobile. She has taken three years of courses in biology and psychology at the University of Colorado. She was even offered a full-time job. [Subheading] System Inflexible But the system doesn't allow even the disabled who are capable of supporting themselves to do so, Linda said. If she was paid even minimum wage, she would earn too much and would lose her Social Security benefits. But it would take much more than a minimum wage salary to pay living expenses plus the $150 a month it would cost her to get to work and back. In addition, she would no longer receive Medicaid assistance, and medical bills for someone in Linda's condition are enormous. "Who's going to pay a beginner with no experience that much money?" she asked. [Subheading] Innovative Projects For now, for these and other physically handicapped young adults, the boundaries of their world still don't go far beyond the nursing home walls. But those boundaries will expand dramatically if the young disabled can find support for two innovative projects. One is Project Normalization, a one year pilot study to find out what services young people in nursing homes need to live as normal a life as possible. The project would be conducted at the young wing of Heritage House and is estimated to cost $241,872. The state Department of Social Services has suggested that the pilot project be run by the Department of Physical Medicine of the University of Colorado Medical School. Members of the department now are investigating that possibility. [Subheading] Denied Normal Life "Disabled people are often denied any resemblance of a normal life," the project introduction says. "Because of the segregation they encounter, and the sheltered nature of their early lives, when they reach young adulthood they are incapable of functioning satisfactorily in society and so are banished to nursing homes where the repressive, nonstimulating and socially undemanding environment serves only to multiply their social inadequacies and further depersonalize them. As its creators see it, Project Normalization would begin to to prepare handicapped young adults for the kind of independent living they hope Atlantis will someday offer. [Subheading] Create a Community Atlantis is an ambitious project, planned by a group of both handicapped and able bodied persons, which would create a community of residential units surrounding a hub housing medical, rehabilitative employment, counseling, homemaker, transportation, food and social services. The goal of the community will be to "provide needed services while respecting the individual resident's freedom and privacy," according to the project booklet. For some of the prospective tenants of Atlantis, that goal can't be realized too soon. "I just sort of wish they'd hurry, " said Mike Smith. "Some of us have fatal diseases, you know, I only have two or three years to wait. "