Author Jay Neugeboren's brother Robert experienced his first breakdown in 1962, two months before his 19th birthday. Robert has spent most of the years since then in and out of mental hospitals, day treatment centers, halfway houses, group homes, supervised residences, emergency wards, and welfare hotels. Jay Neugeboren, who is professor and writer-in-residence at the University of Massachusetts at Amherst and a widely published author, wrote about his brother's experiences in Imagining Robert: My Brother, Madness, and Survival (1), reviewed here in 1997 (2).
Now, in Transforming Madness, Jay writes about people who have histories like Robert's but, unlike Robert, have recovered or are on the way to recovery, and about the programs and people and relationships that made the difference. We have asked four separate reviewers, who have varied roles in the mental health system, to comment on this important book.—Jeffrey L. Geller, M.D., M.P.H.
This book is a focused critique of the mental health system that serves persons with severe and persistent mental illness, with an underlying message and some implicit solutions. The narrative revolves around the author's brother Robert, whose experiences with schizophrenia were chronicled in an earlier book (1). In both accounts, Jay Neugeboren vents the frustrations of a man who has been devoted to his sibling through many years of illness.
The author has educated himself about schizophrenia and has investigated a wide range of remedial resources, yet has been unable to save a loved one from multiple rehospitalizations, an impoverished life, and an ongoing need for long-term care. Dissatisfied with Robert's progress after years of traditional services, Jay Neugeboren has discovered the world of psychiatric rehabilitation, self-help, and peer support. Deeply embedded in this new world is a message of recovery and hope.
Written for the general public but targeted toward stakeholders in the mental health system, service providers, and particularly policy makers, Transforming Madness is full of well-documented information about schizophrenia, current trends in service delivery and managed care, and the changing roles of professionals and consumers. Although much of the information is available from more formal sources, the book is exceptionally valuable as it depicts an array of treatment facilities and the search of a concerned family member for the most beneficial placement for a loved one. The author describes the various programs he visits, primarily in the New York and Boston areas, and the differences between institutions that emphasize structure and rules and those that emphasize positive staff attitudes, family involvement, and consumer participation.
A large section of the book is devoted to psychosocial rehabilitation and peer support and to personal accounts of recovery of former patients. Many of the individuals interviewed have been associated with Boston University's Center for Psychiatric Rehabilitation or the National Empowerment Center in Lawrence, Massachusetts, a peer-support program whose director has impeccable credentials as a psychiatrist and a consumer. Except for the personal accounts published in Psychiatric Services and Schizophrenia Bulletin, and perhaps a few current books now being reviewed in professional journals, practitioners have had limited access to the recollections of articulate patients about their experiences in the treatment system and their ideas about the variables that promote recovery.
The stories that appear in Transforming Madness are edifying. They show the power of the message of self-determination that informs and spurs the current consumer-survivor movement and the development of consumer-operated services.
Like most people, consumers and clinicians alike, Jay Neugeboren maintains that pharmacotherapy alone cannot restore a sense of self and possibility to persons with serious mental illness. In contrast to the idea that such restoration is possible mainly through psychotherapy alone, Neugeboren accepts the consumer vision that motivation for change is largely contextual. For persons with psychiatric disabilities, this motivation is promoted by the attitudes and expectations of staff who show ordinary kindness and validate their patients' value as human beings, and by the understanding and role modeling of peers who represent their potential for recovery.
Under these conditions, any patient will have greater life satisfaction, but not all will show symptomatic improvement. The author acknowledges that unfortunately his brother Robert is one of those whose severe and persistent schizophrenia requires long-term care and possibly continuing institutionalization His book emphasizes that not all individuals are happy or appropriately treated in independent community settings. The author suggests that for persons with severe impairments, the concepts of sanctuary and asylum, perhaps best attained in assisted living facilities, have validity. However, in any setting, staff members should always be aware that human kindness and respect are the most therapeutic aspects of service delivery, and that hope is the most motivating factor for recovery.
Frederick J. Frese III, Ph.D.
In many ways great progress has been made since I was first hospitalized with schizophrenia some three decades ago. Hundreds of thousands of us have left the institutions. We and our families have begun to organize and to become effective political forces. The research we have demanded and supported has uncovered much, particularly concerning the neurobiological substrates of our conditions. Treatments of all kinds have improved. But in the eyes of the general public, schizophrenia and other serious mental illnesses remain misunderstood and frightening.
Transforming Madness is an effective effort to demystify serious mental illness. The author, Jay Neugeboren, recently published Imagining Robert, a volume about his relationship with his brother who is severely disabled with schizophrenia. In the current book the author describes with dignity the travails of many persons who also have mental illness but have come a long way toward recovery. They include Sheryl Mead, director of a respite program for mentally ill persons; Gaston Cloutier, who works full time helping others with supported employment; and Moe Armstrong, director of consumer and family affairs for a mental health organization.
All these persons have returned enough from psychosis to have been able to graduate from college and establish careers in mental health. Neugeboren points out ways in which recovered persons think and act differently. He quotes Moe Armstrong, who describes the mentally ill as being "as a group the most frightened, mild mannered, unthreatening folks you'll ever meet."
In stressing these characteristics, Neugeboren creates an image of mentally ill persons that is both reasonably accurate and refreshingly hopeful. He is particularly poignant when he quotes Armstrong as expressing "how our lives and our brains work differently from so-called normal people" and saying that we really cannot be changed into something we are not. What emerges is a picture of recovering persons as a group of people who have special insights into these disorders. This perspective has clear implications for the possible advantages of self-help and peer-support initiatives.
Neugeboren also gives interesting examples of some of the unfortunate attitudes he has encountered among those who work in the mental health system. Running throughout the book is the theme that those who have personal experiences with these disorders are better able to understand and assist mentally disabled persons than are those without such backgrounds.
Besides describing mental illness through the eyes of those with personal experiences of it, the author provides an overview of recent scientific findings, and he describes many innovative rehabilitation programs in detail. Although Transforming Madness focuses primarily on people and programs in the New York and New England area, the types of changes that are portrayed in those areas are also occurring in many other parts of the country.
Particularly valuable is the listing of relevant organizations, publications, and other helpful resources at the end of the book. All this information can be of real assistance to anyone wishing to help in further transforming the world of mental illness.
Richard E. Fortier Jr., M.D.
In this book the author moves beyond his earlier work, Imagining Robert, which focuses on his brother's lifelong battle with schizophrenia and the author's experiences as his brother's responsible relative. Here Neugeboren crafts a tapestry of hope through sequential snapshots and vignettes of persons in all walks of life who have transcended their own mental illnesses to live meaningful and productive lives. From the springboard of his brother's need for care and treatment outside the state hospital, the author seeks out and explores a wide array of successful, innovative programs such as Odyssey in New York City and Genesis Clubhouse in Massachusetts.
The tapestry is woven by personal interviews and experiences with individuals, many of whom continue to help themselves by helping others who struggle with serious mental illness, recovery, and relapse. Yet the book is more than a patchwork quilt of success stories. It draws on the historical perspective of a family member who has seen his loved one through the Dark Ages of institutional treatment, through what he refers to as "the psychiatric diaspora" into the Decade of the Brain and the new age of aggressive community treatment, self-help, respite care, and assisted housing and employment.
The fabric of this work offers something of value to a broad range of readers, including patients or consumers, advocacy activists, besieged family members, community support workers, clinical professionals, medical sociologists, and the general public in need of enlightenment. The thread that holds the fabric together is Neugeboren's thesis that challenges the notion that "madness" (that is, "mental illness") transforms "men and women into human beings who are so different in their essence from the rest of us that they are somehow less than human . . . less worthy, valuable, or godly—than those of us who are not considered mad."
Citing prevalence statistics from the Epidemiological Catchment Area study, the author argues that mental illness is so pervasive in the population that "madness" in all its forms is a normative aspect of the human condition: "Since . . . more than one out of every four of us will go mad for a time . . . most of us may often sense, in a 'There-but-for-the-grace-of-God-go-I' way of thinking, that we are not all that different from friends and relatives who have gone mad." It is the denial of this vulnerability in the individual and collective unconscious that transforms madness into such a feared and alien state—the genesis of stigma.
The perception of "madness" as immutable, damnable, chronic, and untreatable persists in our culture despite the age of media communication. This perception serves to perpetuate stigma that, internalized by the afflicted, stifles their self-esteem and hinders the impetus and motivation for rehabilitation and reintegration into mainstream society: "Thus, they come to carry within themselves internalized labeling that corresponds to the external labeling the world has put on them. This passivity . . . in Martin Seligman's phrase . . . 'learned helplessness' is at least as lethal as the disease."
Neugeboren weaves into his work some of this century's historical evolution in systems of care. Proclaimed throughout the work, and especially in the chapter "Pathways to Recovery," are the astonishing advances in the biological understanding of major mental illness. The author credits the science of brain biochemistry both for the hope and the potential it offers, and also for the ways in which it has veiled and averted attention from the human and social needs of persons with mental illness.
Madness has been transformed by clinical science from an untreatable condition carrying with it an institutional life sentence to a state of ill health and dysfunction amenable to effective medical intervention. Unfortunately, society has not transformed its systems of care to keep up with state-of-the-art clinical science. Thus "the paradoxical effect of the new medications [is] that precisely because they are effective, they create a need for more rather than for fewer services." The result of the politics of deinstitutionalization and cost-containment has been the creation of vast numbers of homeless, inadequately treated, and even incarcerated mentally ill persons. They constitute Neugeboren's "psychiatric diaspora."
The tale of hope spun by Neugeboren is a trail of discovery: discovery of the ways in which individual people transform their view of themselves and their potential; discovery of the transformation in the science of psychiatry; discovery of the new programs and care systems that are evolving and transforming to meet the human needs of patients; and discovery by families—who have struggled alone and in silence—of a vast new movement of mutual support and advocacy. The National Alliance for the Mentally Ill, through its pioneering work against stigma, against shame and family blaming, and for access to care, is seen as transforming the political landscape for the mentally ill.
Perhaps the most poignant messages of hope and encouragement from Neugeboren to family members like himself are based on the working assumption "that people with severe mental illness can take responsibility for their own lives, can become increasingly autonomous, can rejoin the larger communities beyond the world of mental illness, and can, like the rest of us, regain and make for themselves very full if imperfect lives." He invites families to transform their perspective by trying "to enjoy and love their friend or family member not for who they wish that person to be, but for who he or she truly is, in all the wonder of his or her being, complexity, and mystery."
Transforming Madness: New Lives for People Living With Mental Illness offers a refreshing and hopeful look at recovery from mental illness. In a straightforward and compelling way, Jay Neugeboren makes the case for mental illness as a disease that affects body, mind, and soul. He does so by skillfully weaving four threads: anecdotal evidence from people who have recovered, the outcomes from a variety of model service programs, summaries of the latest medication and brain studies, and his personal experience with his brother Robert, who has struggled with schizophrenia for decades. The result is a thorough, sometimes disquieting, and always deeply moving account of lives transformed by courage, acceptance, opportunity, faith, respect, and unconditional love.
Neugeboren provides an insider's view of the mental health system. With unflinching honesty, he describes treatment programs ranging from the back wards of institutions, where patients are isolated and devoid of hope, to successful leading-edge programs, where people are provided with support, choice, and opportunity. In case after case, he points to the people, the programs, and the policies that promote lasting recovery.
In this way, the author develops a picture of how the right elements enable people whose lives have been stunted and twisted by mental illness to emerge not only restored but, in many ways, recreated. Using a combination of first-person accounts and excerpts from their creative writings, Neugeboren introduces a memorable group of individuals who have clearly transcended madness.
Neugeboren passionately describes the very real and insidious impact of stigma, shame, isolation, and difficulty of obtaining decent care and treatment on those who deal with mental illness on a personal level. From the limitations in mental health coverage to the expectation of failure promoted by service providers, he graphically portrays the many barriers that individuals labeled with a diagnosis must navigate beyond the arduous challenges presented by the illness itself. Neugeboren presents a clear and cogent definition of recovery, and he skillfully sketches the characteristics shared by those who achieve it.
Transforming Madness is brimming with warmth, wit, and wisdom. For service providers who treat individuals with chronic mental illness, Jay Neugeboren offers an alternative to the limited and sometimes conflicted view of mental illness as simply a physical, brain-based disorder. He offers fresh insights that can inform and enrich treatment. For family members touched by mental illness, he offers an understanding and supportive account of navigating the system from someone who has traveled that path. Neugeboren offers them a brilliant and welcome ray of hope. And for those who still suffer, he offers evidence that they have been heard, a powerful collection of engaging and inspirational role models, and an uncompromisingly optimistic view of the future.
Dr. Lefley is professor of psychiatry and behavioral sciences at the University of Miami School of Medicine in Miami, Florida.
Dr. Frese is assistant clinical professor in the department of psychiatry at Northeast Ohio Universities College of Medicine in Rootstown, Ohio.
Dr. Fortier is in the private office practice of general adult psychiatry in Auburn, Maine.
Ms. Gordon is project associate for the Mental Illness Education Project, Inc., in Brookline Village, Massachusetts.