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Transforming Madness: New Lives for People Living with Mental Illness / Edition 1

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Overview

In Imagining Robert, Jay Neugeboren told the sad, deeply personal, often harrowing story of one man and one family's struggle with chronic mental illness. Now, he presents an overview of the entire field: a clear-eyed, articulate, comprehensive survey of our mental health care system's shortcomings and of new, effective, proven approaches that make real differences in the lives of millions of Americans afflicted with severe mental illness. A book for general readers and professionals alike, Transforming Madness is at once a critique, a message of hope and recovery, and a call to action. Filled with dramatic stories, it shows us the many ways in which people who have suffered the long-term ravages of psychiatric disorders have reclaimed full and viable lives.

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Editorial Reviews

Library Journal
"Drugs are not enough" might telegraph the message of this major survey of our mental health system, its virtues and sins, and its patients, therapists, and managers. Neugeboren, a novelist, guardian/biographer of his mentally ill brother (Imagining Robert, LJ 11/1/96), and teacher (Univ. of Massachusetts), brings out the possibilities for life after--and with--serious mental illness. He tells the stories of many individuals who are living well despite terrible psychiatric histories, thanks to programs that include good psychotherapy and social support along with psychiatric medication. Unfortunately, many programs lack an essential human element, and the drive for pharmaceutical research to make psychosis medically curable just like other illnesses leaves psychotherapy, rehabilitation, and follow-up care in the shadows. Neugeboren provides a literate, lively guide, rich in history, biography, and economics as well as psychology and neurochemistry. This should be on the short list of books on mental health that can be called great. Recommended for all libraries.--E. James Lieberman, George Washington Univ. Sch. of Medicine, Washington, DC Copyright 1999 Cahners Business Information.
Kirkus Reviews
Clearly, we could be doing much more to help those with mental illness. This is a thoughtful consideration of what social settings, assistance, and connections would offer the most help to those striving to return to productive, fulfilling lives. Novelist Neugeboren wrote earlier of his brother Robert's severe, chronic, incapacitating mental illness (Imagining Robert, 1997). Here he relates travels and visits to facilities, and conversations both with mental health care professionals and with those who've made it back to a more normal life from severe illness; all undertaken while undergoing a parallel search for a more humane life and home for his brother. Robert Neugeboren has for years lived in locked psychiatric wards, punctuated by brief, unsuccessful forays to hopelessly inadequate community residences. His story and others related here drive home the message that not only is our biological understanding of mental illness grossly incomplete, but that progress in improving care has been distressingly slight. Neugeboren patiently examines a few outstanding facilities (one in New Hampshire, one in the Bronx, N.Y., to which Robert eventually was transferred) and sets out suggestions for an ideal facility. He suggests, in the end, small, community-based assisted living facilities similar to those we now have for the elderly, which could be adjusted for level of care as regressions and remissions occurred and "so that one was not living only with others who suffered from serious mental illness. And cost should be a consideration." Neugeboren pegs an excellent Boston-area supervised residential program with strong support services to cost between $25,000 and $35,000 per person per year,while "the cost of keeping my brother on a locked ward without anything resembling psychological, vocational or educational counseling—without anythingi that might offer the possibility for a fuller, more productive life outside a hospital—is, according to the New York State Office of Mental Health, $127,000 a year." An affecting personal story, coupled with a well-supported plea for revolutionizing care.
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Product Details

  • ISBN-13: 9780520228757
  • Publisher: University of California Press
  • Publication date: 5/16/2001
  • Edition description: New Edition
  • Edition number: 1
  • Pages: 390
  • Product dimensions: 6.00 (w) x 9.00 (h) x 1.00 (d)

Meet the Author

Jay Neugeboren has published seven novels, two short story collections, and two memoirs, including 1997's acclaimed Imagining Robert, a New York Times Notable Book of the Year. His stories and essays have appeared in more than a hundred magazines and have been reprinted in more than fifty anthologies. He has won numerous awards for his work, as well as fellowships from the National Endowment for the Arts and the Guggenheim Foundation. He is a professor and writer-in-residence at the University of Massachusetts, Amherst.

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Read an Excerpt

For the entire period of time between 21 October 1723 — when the prior and nuncio agree to continue keeping Hu shut up in Charenton as a charity patient - until 9 August 1725, a period of 658 days, only one single item of precise information on John Hu is known. One of the staff at Charenton gives him a warm blanket, of good quality, to ward away the night cold. He tears the blanket to shreds.

— Jonathan Spence,
The Question of Hu

On a bitter cold day in early March 1996, I drove down from my home in Northampton, Massachusetts, to visit with my brother Robert in his new home on Coney Island Avenue in Brooklyn. This will be our last visit together for a while, since, in a few weeks I will be leaving the United States for a four-month teaching position at the University of Freiburg, in Germany. Robert's new home, Park Manor Adult Care Facility, a proprietary residence for some sixty to seventy physically and mentally disabled adults, is about a twenty-minute walk from the four-room apartment on Martense Street in which Robert and I grew up together in the years during and after World War Two. Robert has been transferred to Park Manor from South Beach Psychiatric Center, a state mental hospital on Staten Island, where he has been confined to a locked ward for the past thirty-two months.

Eager as I am to spend time with Robert outside a mental hospital, during the drive down, and especially as I get closer to Brooklyn, I find myself becoming increasingly nervous — talking to myself, telling myself to slow down, to take it easy, to just relax. I find myself making an effort to bank the fires of my hopes and eagerness a bit, fornot only do I want to be careful not to have my hopes become expectations that Robert will feel as pressures, but I am aware that previous departures in my life — to Indiana, California, France, Massachusetts — have invariably been accompanied, in Robert's life, by psychotic episodes and breakdowns.

Robert experienced his first breakdown in 1962, two months before his nineteenth birthday, and he has spent most of the thirty-four years since then in and out of mental hospitals, day treatment centers, halfway houses, group homes, supervised residences, emergency wards, and welfare hotels. For the past half-dozen years I have been writing a book (Imagining Robert) in which I have tried to set down the story of his life — of our growing up together in Brooklyn, of Robert's early breakdowns and hospitalizations, and of our relationship in the years since, years in which I have been his primary caretaker. Robert has collaborated with me on the book, recalling, in conversations and in writing, his life before and after his first breakdown, and, working together, we have chosen the family photos that appear at the start of each chapter, and that help chronicle our story.

Now, on a bright, icy day in early March, a month before Robert's fifty-third birthday, and for the first time in nearly three years, Robert has been released from his locked ward, and — a sweet convergence — on the day he is transferred from the hospital to his new home, I have mailed off the final draft of my book to the publisher.

I bring some things he has asked for: a camera, a deck of cards, marshmallows, some clothes — along with a copy of the book's title page, on which I have reproduced a photograph of the two of us. In the photo, taken in the summer of 1943 when I was five years old, I am sitting in a sunlit field, smiling down at Robert, who — born a few months before, on April 17 — sits on my lap. I've kept the photo in an old oval silver frame on the night table beside my bed for years, and during the drive down to Brooklyn some of the peacefulness and happiness I have always found in the picture — some sense of a future that may yet be filled with easy, sunlit days — is with me again. "This is the most beautiful picture in the world," Robert says each time he sees the photo, and he has suggested we use it for the book's jacket.

Despite the sheer misery that has been the matter of so much of Robert's life, I am feeling once again, for him as well as for me, optimistic and expectant. It is as if Robert and I have both been set free this week — Robert from the locked ward where, most of the time these past two and a half years, he has been kept on isolation, often allowed out of his room for only one hour each day. And, the book completed, I am feeling that I have been set free too: from a story I first began trying to tell thirty-four years ago, shortly after Robert's first breakdown, and from the fear, through all the years since, that I might die without having done so.

Robert can now come and go in the world — visit friends, take trips, play lottery tickets, hang out at OTB parlors, eat in restaurants, find work, go to movies, concerts, plays, and museums, and wander the city — he can return, that is, to those things, old and new, that give him pleasure. And, the final draft of the book done, and my three children grown and out on their own (for the previous dozen years I have been a single parent to them), I can leave my home too, and return to my first love: the writing of stories and novels. The people, places, and things that have been roaming the caves of my mind while I tried to conjure up the world Robert and I actually experienced — these imagined and vaguely sensedcharacters, scenes, stories, and who-knows-what-else — can now be given their freedom too.

During the year preceding Robert's discharge from South Beach, I have been speaking with people in New York and Massachusetts about programs — for rehabilitation, housing, employment, education — that might be available for Robert once he is discharged, and I have been keeping Robert informed about what I have learned. What I have been discovering is that the world of individuals with mental illness is not at all what it was ten, twenty, and thirty years ago, when most people with conditions and histories similar to Robert's were condemned to lifetimes of hopelessness and institutionalization. It is not even what it was five or six years ago, when I began doing background research for Imagining Robert.

I have also been meeting people who share with Robert the fact of having a severe psychiatric condition, and a history of repeated and/or long-term hospitalizations, but who, unlike Robert, have recovered, and have made viable lives for themselves in our world. I have been meeting men and women who have been incarcerated for a dozen years and more in mental hospitals, who have had long-term psychiatric disorders, who have been given up on and abandoned by friends, families, and mental health professionals, yet who are out here with the rest of us now, living lives like those most of us live: lives that include college educations, full-time jobs, ongoing friendships, marriages, divorces, children — lives marked and informed not by madness and the fear of madness, but by the ordinary joys, losses, and struggles that are the stuff of most lives.

While my discovery of several new and good programs for people with long-term psychiatric disorders does not make me believe that Robert will suddenly, at fifty-three, recover into the kind of life he or I might have imagined possible for him twenty, thirty, or forty years ago — that some magical cure is imminent — I am convinced Robert can have a better life than the one that has been his.

When I visited Robert at South Beach a month before, he had, for the first time in more than two years, been allowed out of the hospital on a pass. We had eaten lunch in a nearby restaurant, taken a long walk along a deserted beach, played lottery tickets, and passed the time talking and joking about things we usually talk about: reminiscing about the past — about friends, family, and times spent together — and making provisional plans for the future, when Robert would be out of the hospital again.

In the decade preceding his most recent hospitalization, he had done well — his hard times had become less frequent, his hospitalizations less lengthy. He had maintained himself for several years without any hospitalizations at all, and during these years he had spent his days working part time at various jobs in Staten Island Hospital, visiting friends and family in and around New York City and in upstate New York, vacationing in Atlantic City (both by himself and with me), and visiting me and my three children — his niece and nephews — in Massachusetts. At the time of his most recent hospitalization, in June 1993, he had been living with two housemates in a private home on Staten Island, without onsite supervision.

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Table of Contents

1 It's Safe Here 1
2 The Psychiatric Diaspora 29
3 Travels with Moe 57
4 Give Robert Back His Teeth! 89
5 Expert Consensus Guidelines 111
6 Degrees of Discordancy 133
7 Respite 173
8 Moving Beyond Disability 205
9 Approaches to the Mind 243
10 Pathways to Recovery 285
Epilogue: Intimations of Possibility 327
Acknowledgments 353
A Note on Sources 359
Index 384
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  • Anonymous

    Posted February 7, 2007

    What a great book

    I just finished reading this wonderful book. It has so many insights into what it is like for people living and coping with mental illness. If someone reads this book, they would begin to understand the humanity of people living and recovering from mental illness. One of the great things about this book is that it shows that people can have mental illness and the hell that goes with it and can recover, that recovery is possible. Mental illness is presented as something that can absolutely be transformed and recovered from and people can live in the 'real' world again and lead interesting and meaningful lives even as they have had mental illness. I loved this book. I found sections of it to be very moving. Reading this book will help people not afflicted with mental illness to better understand those who are afflicted. I recommend this book to anyone interested in learning about or learning more about mental illness and how people who live with mental illness can recover.

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