A Matter of Dignity

by Andrew Potok

  Obsessing on the search for a magic bullet alone is as destructive in mental illness as it is in the case of cancer, diabetes or heart disease. Cures are stupendous when they happen, but until they do, those who suffer the long-term devastations of mental or physical illness don't easily survive the lack of human attention to their ordinary needs. A megalomaniacal drive for cures often forgets how the illness is experienced by the ill and those who care for them. This does not contradict the fact that research in brain chemistry, technical advances in diagnostics, new knowledge of any kind can lead to better medication and better care. Certainly antipsychotics and lithium have proved to be dramatic in easing the torment of some psychiatric illnesses and have allowed some people to function who would have otherwise been unable to do so. But it is also true that a seriously mentally ill person, just as anyone seeking relief from any illness, needs a certain amount of luck to find effective medication as well as beneficial psychiatric or medical care.

  “Note that on the doctor shows on TV, it's always a crisis,” Jay Neugeboren says, “with bells ringing, everyone running, reinforcing the notion that medicine is strictly heroic, only about lifesaving procedures. The truth is that saving lives is a last resort, usually meaning that the professionals haven't dealt with the patient's well-being until that point. They'd need that heroic stuff much less if they just went about making people's lives better.”

  At the beginning of Robert's illness, Jay was told by the head psychiatrist at Bronx State that the unanimous prognosis of every professional who had contact with Robert was that he would never be able to exist in any other environment than a hospital. It's now two years that Robert has been successfully living in supervised housing in New York.

  “If I hadn't written the book,” Jay says, “if I hadn't pushed, he would probably not be out of Bronx Psychiatric. There may be some people who, not having these advantages, would have the resilience to say, ‘Fuck you bastards, I'm going to get out of here anyway,’ but from my experience visiting the wards over the years, I would say that those who have been abandoned by their families do very badly. They languish and die. Robert has been greatly helped by the book because now that he's a famous mental patient, people want to show that they can do a good job with him.”

  These days, Jay lectures widely on mental illness. He accompanies doctors on rounds in hospitals. Many psychiatrists have written him to say that he has reminded them of the larger familial context. And he seems to have had some influence on public policy as well. His books have made the rounds of state and congressional representatives when relevant bills needed to be passed. They understand that his books are serious critiques of a ghastly mental health system. “As individual citizens we can push in the right direction,” he says, “but I'm not a doctor, not a therapist. I'm a writer and a brother, which perhaps gives me the credibility that professionals don't have. Now, wherever Robert goes, people are going to give him good treatment. They're afraid I'll write about it, which is fine. I'll take what I can get.”

  It's impossible to calculate the effect of books and teachers on public policy or health delivery systems. One can count the number of the blind given mobility via Pete Lang's dogs, the number of the comatose given moments of life via Connie To maino's accordion, the thousands worldwide given access to decent work via Ted Henter's software, the hundreds or so each year given artificial limbs by Dave Loney Nevertheless, it's clear that the writings and teachings of Jay Neugeboren, Mona Wasow and Anne Larkin have penetrated the mental health establishment and have begun to change attitudes toward serious mental illness. It is true that their models are different in kind than the one offered by Chai Feldblum in changing the world one word at a time, or by David Werner initiating programs and teaching the disabled to work with fellow disabled all over the world. But one common thread they all share seems to be the exchange of warmth and love, the struggle to preserve dignity and the passion for building a just society.

  In Transforming Madness, Jay cites several programs that help people with serious mental illness successfully maintain productive lives outside of institutions. “The one thing these programs have in common,” he says, “is their reliance on providers who have been through mental illness themselves. Once you've had your own lifelong battles with mental illness, including countless hospital admissions, you tend to be very respectful to others going through the same experiences. These programs are easily replicable, as long as you can be nonjudgmental and nonauthoritarian. This doesn't sound so difficult, does it? If it happened more, I'm convinced that many people, certainly not all but many, could be leading happier and more productive lives.”

  When I ask Sam Tsemberis if Pathways can be a template for other mental health programs, he says, “Look, assertive community treatment and supported housing exist in every mental health department in the country. All we've done is rearrange the sequence of those services. It requires a certain shift in the way people see mental illness, but if they're capable ofthat, the whole mental health system would change.”

  Except for the fact that mental health caregivers get woefully inadequate wages and no benefits, there is no uniformity in each state's delivery systems. There is no national policy on the quality of care. Robert Neugeboren lives with fifty-six other mentally ill people in supervised housing funded by the city and state of New York. David Wasow, who had been living for many years with a foster family, has moved into a boardinghouse with three other mentally ill men. Though he receives no help with meals, hygiene or socialization, a building manager alerts appropriate social service agencies in case of need. When it comes to caring for the seriously mentally ill, according to Mona Wasow, Madison, Wisconsin, is one of the more enlightened communities. John Larkin and three other autistic men live in a group home built by their parents on donated land in their own neighborhood. But even though Social Security Disability Income or Supplemental Security Income, which includes Medicaid or Medicare, is the right of all who are seriously disabled, the people who are not well represented by families and social workers can and often do fall through the cracks, sometimes landing in the streets or in jails.

  One of Jay's recent talks on mental illness was delivered at a conference on the Swiss-German border. From a window on the conference site, he noticed that the lawn was covered with markers. It turned out to be a memorial for the 560 mental patients the Germans took from this very place to the death camps. Before they fully organized the destruction of the European Jews, they took the mentally ill.

  At times, the struggle is for quality of life, for dignity. There are times, though, when it's for life itself.

  “What does one do to change things?” I ask Jay.

  “As writers, we try to make sense of the world in words, like the famous story of the Jewish historian on his way to the death camp saying, ‘Write it down.’ You can do nothing else except witness and say the truth.”

  EPILOGUE

  In the last twenty-five years, the lives of many disabled people have improved considerably. Thanks to the labor and activism of the disability community many disabled people are no longer looked upon as hopelessly different, no longer shunned. At times, the effort to include the disabled in the mainstream of society has paid off, leading to improved access to education, employment, housing, transportation and dignified participation in a community's social life. The individuals who talk about their work in the preceding pages have been instrumental in the struggle, contributing mightily, mostly in quiet, loving ways.

  But all those wonderful things like progress in medicine and technology, the mapping of the brain and the human genome, the evolution of laws protecting human rights, the dissemination of new ideas and more evolved attitudes, do not benefit everyone. Far from it.

  New technologies such as text telephones for those with hearing impairments, computer access via screen readers and braille displays for the visually impaired, lighter wheelchairs and artificial limbs, infrared pointers for people who can't use their hands—all
the things essential to disabled people's productivity and autonomy—are often not available to them.

  To achieve the independence that the nondisabled take for granted, a disabled person must be able to afford certain adaptive equipment. For the most part, however, these devices are out of financial reach. With disability unemployment numbers stagnating at about 70 percent, and with most disabled people relying on Supplemental Security Income (SSI) at an average monthly stipend of $372, or on Social Security Disability Income (SSDI) of $786, the money for all those wonderful technologies at market prices is simply not there.

  The vast majority of disabled persons can and want to work, but the disincentive of losing health insurance often prevents them from seeking employment. The presumption all too often is that those with disabilities will be a burden, either unable to do the job adequately or in need of costly workplace adaptations. Without affirmative action, employing the disabled remains voluntary, a nice thing to do, a charitable deed. Though our society expects and rewards an individual's lifelong productivity, the right to a job is not seen as one of society's obligations.

  In some enlightened states, Vermont among them, the blind are favored because the mandate of the agencies providing services includes the goals of vocational rehabilitation and of independent living, meaning not only a push toward employment but toward autonomy. Oddly, however, this does not improve the overall unemployment figures of the blind, in part because of the catch-22 nature of work disincentives, in part because of many employers’ assumptions that workplace adaptations will be burdensome.

  I am still naive enough to be shocked that most of the agencies providing services to people with disabilities are not preoccupied with their clients’ quality of life. Because funds are limited and shrinking, the dispensing bureaucracies are required to narrow the definition of who is eligible. Thus, Medicaid providers seek reasons to deny wheelchairs rather than furnish them. Trapped in the economy of scarcity that the society chooses in providing for the poor, Medicaid will usually not finance a wheelchair for use outside the home, home models being considerably cheaper, even though most work opportunities are not to be found in one's living room.

  Of course, for those of us who are privileged by education and money, by access to legal clout, the whole situation changes. As Mary Lou Breslin said about her “magnificent” lightweight, mechanized wheelchair and modified van: “All it takes is money.” Though guide dogs and canes are provided free of charge, and though the state of Vermont has contributed generously to my technological functioning, I am able to hire readers at will and buy the equipment necessary to scan the books of my choice into my talking computer. In Mary Lou's case, as in mine, privilege enables our work and our livelihood.

  Seeking rational behavior within government bureaucracies or profit-oriented enterprises as it relates to disabled people can be a maddening pursuit. Mary Lou Breslin's Disability Rights Education and Defense Fund is suing to halt the rebuilding of the huge Laguna Honda Hospital and Rehabilitation Center in San Francisco. DREDF's lawsuit, in the name of a large group of institutionalized disabled plaintiffs, is seeking relief from their unnecessary isolation in this giant nursing facility. Because federal law requires that individuals be given services in the most integrated setting appropriate to their needs, the suit claims that these plaintiffs are being unwarrant-edly segregated from the larger community and therefore that funds are being inappropriately provided to this construction project.

  It's not hard to convince the public at large that everyone would be better off if the severely disabled were in a nice, clean lockup of their own, so a huge bond issue to rebuild Laguna Honda passed easily. Ironically, it had the backing of labor unions, which were protecting a thousand well-paid jobs inside the facility while ignoring and further devaluing miserably paid similar jobs in the community. The entrenched way in which the society undervalues the independent long-term-care community worker is not confined to San Francisco. These attitudes are endemic nationwide and it will require rethinking social policy and priorities to change them.

  It's also perplexing to try to understand the fiscal logic of Medicaid's preference for places such as Laguna Honda, where the average yearly expense per patient is more than $23,000, as compared to $7,000 for community-based services. This logic is as skewed as New York City's preference for institutional confinement of the mentally ill homeless rather than for Sam Tsemberis's cheaper and more humane Pathways to Housing. But the deck is stacked against the rational, nursing homes and hospitals being an entitlement under Med-icaid, while community services are only an option.

  How then is further empowerment of the disabled to come about? The gaps between them and the nondisabled in income, employment, education, political participation and community social life are formidable, and to level the playing field will require equal access and thus equal opportunity. For all that has been accomplished in law, in the academy, in technology, in social-policy thinking, it's essential to protect those hard-won gains and to consider them as only a beginning.

  In this book, I sought not only to explore the disability community and my relationship to it but to find people who engage in what Pete Lang called “an honest day's work.” Those portrayed in these pages are rare individuals working in large part against the selfish grain of the time, a time in which attention to respectfulness and dignity seem revolutionary. It became my good fortune to witness their unflamboyant, unshakable conviction that what they are doing is an essential human obligation.

  There are, of course, many others in the disability community who are engaged in equally important work, some in similar areas, some in a host of diverse fields: in theater, dance, movie-making, photography, in the training of athletes, in rehabilitation, in medicine and other sciences and technologies. Although the work explored here focuses largely on those of us who have disabilities, it seems clear that everyone, disabled or not, benefits from such work. It is rewarding not just to witness people at their best but to be enriched by the cross-pollination between the disabled and the ablebodied that occurs in scholarship, social activism, technology and ways of caregiving.

  From its beginnings, this book was a personal journey through my complicated feelings about myself as a disabled man trying to come to terms with my reactions to others who were blind or otherwise disabled, with a friend who had no notion that he was wounding me when he pointed to a quadriplegic in a wheelchair and mumbled, “There but for the grace of God go I,” with being an inspiration to some, a fearful blind man to others, with a woman who couldn't stop referring to my blindness as “Andy's tragedy,” clearly not understanding that tragedy is inseparable from the human condition.

  “Doesn't this work make you sad?” most of the people who work with disability have been asked at one time or another. “Wouldn't you prefer to work with people who are, you know, normal?”

  Pete Lang, for one, is very clear in his answer: “I get a lot more out of it than I can ever give.”

  Though many people are baffled by the lack of remedies to life's essential problems, this attitude misunderstands what makes life worth living. Surely, in part, it's life's many forms and shapes, its surprises, including the certainty that things don't always come out well in the end. “Chaos should be regarded as extremely good news,” a wise man has said.

  The good people who agreed to be part of this book can't by themselves change the world. Still, I think it increasingly apparent that Chai Feldblum's hope of changing the world one word at a time is not to be taken lightly. If you want to move the mountain, carting it off one basketful of dirt at a time will be slow, very slow, but eventually the mountain will be moved.

  ACKNOWLEDGMENTS

  Many of the people interviewed in these pages have not only given generously of their time and hospitality but have contributed greatly to my understanding of the world of disability through their writing and lectures. Books, articles and class notes by Mary Lou Breslin, Chai Feldblum, Mark Jeffreys, Adrienne Asch, R
osemarie Garland Thomson, Paul K. Long-more, Connie Tomaino, David Werner, Jay Neugeboren and Mona Wasow have inspired my progress through this field.

  Among other writers whose ideas on disability have very much influenced mine are Joseph Shapiro, Hugh Gregory Gallagher, John Hockenberry, Robert F. Murphy, Leonard Kriegel, Nancy Mairs, Simi Linton, Lennard J. Davis, Oliver Sacks, Michel Foucault, Erving Goffman, Kenny Fries, Henri-Jacques Stiker and Richard Scotch.

  I am extremely grateful for the support of the Division for the Blind and Visually Impaired of the State of Vermont. Without their help, my transition from visual artist to writer would have been much more difficult.

  I am grateful for the expert counsel as well as friendship of my editor, Ann Harris, and my agent, Phyllis Wender. As for the constant reading and rereading of my text, I depended wholly on the marvelous voice inside my computer (whose stern and well-inflected voice sounds very much like NPR's Carl Kassel!), my two excellent readers, Barbara Carnes and Ethel Bower, and on the voice and judgment of my wonderful wife, Loie.

  ABOUT THE AUTHOR

  ANDREW POTOK is a painter and a writer,

  whose two previous books are a memoir, Ordinary Daylight,

  and a novel, My Life with Goya. He lives in Vermont.

  A MATTER OF DIGNITY: CHANGING THE WORLD OF THE DISABLED

  A Bantam Book

  PUBLISHING HISTORY

  Published by Bantam Dell

  A Division of Random House, Inc.

  New York, New York