Oliver Sacks, MD
Author of The Man Who Mistook His Wife for a Hat, An Anthropologist on Mars, and Uncle Tungsten: Memories of a Chemical Boyhood
Forty years ago, schizophrenia was seen in the grimmest light, as a hopeless, deteriorating disease, condemning its victims to lives of institutionalization, misery, isolation, and disability. But this view has changed radically in the past few decades, and schizophrenia is now seen by many as a condition which, with early intervention–skilled, delicate, intensive, and human therapy, coupled with some medication–can allow a high rate of social and psychological recovery, and the achievement of lives full of work, meaning, affection, and human contact. This revolution in our understanding was largely pioneered in the 1970s by Dr. Loren Mosher and Voyce Hendrix and their dedicated co-workers at Soteria in California. It is vital that this seminal enterprise he remembered and given its place in history as the authors have done so beautifully and meticulously in Soteria: Through Madness to Deliverance. This is an immensely impressive and moving book, full of vivid clinical and personal detail, a book which inspires and reminds us all of what can be achieved in the treatment of mental illness.
[ Back to Top ]
Author of Mad in America: Bad Medicine, Bad Science, and the Enduring Mistreatment of the Mentally Ill.
During the 1970s, our country’s care of the severely mentally ill went through a defining moment. Today, of course, “antipsychotic” medications are the centerpiece of psychiatric care in the United States, but 25 years ago, there was still an active discussion about whether these drugs really benefitted people over the long run. As a result of that debate, there were a handful of experiments conducted that provided “schizophrenics” with social and community support but minimized the use of the drugs.
The result? In every instance, people treated psychosocially did as well as or better than those treated conventionally with drugs, and, naturally, they didn’t suffer the many adverse effects caused by the medications, like Parkinsonian symptoms. But that was not an outcome that mainstream psychiatry-and the pharmaceutical industry-wanted to hear, and the experiments were brought to an end.
In this book, Loren Mosher, Voyce Hendrix, and Deborah Fort have revisited the most visible of those experimental programs, the Soteria Project. By doing so, they provide us with a powerful reminder of what we, as a society, lost when we failed to embrace care of this kind.
We regularly hear today about the progress that we are making in treating “schizophrenia”-that we now know that it is a brain disease and that we are developing ever better drugs to treat that disease. Unfortunately, this is a claim that just isn’t true. Researchers at Harvard Medical School have found that outcomes for “schizophrenia” patients have worsened since the 1970s and are now no better than they were 100 years ago, when the treatment of the day was to plunk people in bathtubs for hours on end. Even more damning, the World Health Organization has found that “schizophrenia” outcomes in poor countries like India, Nigeria, and Colombia, where only a small percentage of patients are regularly maintained on antipsychotic medications, are much, much better than in rich countries like the United States. The difference in outcomes is so dramatic that the World Health Organization concluded that living in a rich country like the United States is a “strong predictor” that a person diagnosed with “schizophrenia” will never fully recover.
And therein lies the tragedy: Soteria showed us the possibility of a better way, but we ignored it.
The fundamental philosophical difference between the two types of care-treatment centered on drugs versus treatment focused on environmental support-can be vividly seen in how the providers of such care talk about “madness.” If you read articles in medical journals on the merits of drug treatments, you’ll find that they always discuss how the medications reduce symptoms. What you won’t find in those reports is any sense of the people who are being so treated. There is no sense that we are talking about an individual with a life history, and that there was a path-most likely one filled with trauma-that led up to their psychotic breaks. Nor is there any discussion of how the medicated patients are faring as human beings. Are they forming friendships, pursuing ambitions, able to feel the world? These questions aren’t addressed. But at Soteria, as you’ll see in this book, the discussion was all about people. People with names, with families, and with hopes.
As a result of this different philosophy, at Soteria there wasn’t the usual drawing of a line separating the “crazies” from the “normals.” Go to a psychiatric hospital and that line is carefully drawn. But at Soteria, the philosophy was one that emphasized a shared humanity, rather than how different the “mad” are from “us.”
Indeed, as I read this book, I felt envious of those who worked at Soteria. They had the opportunity to “be with” unmedicated people who were battling with “madness.” They clearly learned a great deal from this experience. They may have found it. frustrating at times and often emotionally draining, but always rewarding and meaningful. The disappearance of a place like Soteria from our society is not just a loss for those who might find a refuge there, but also for those who work in the field of “mental health.”
The authors don’t sugarcoat Soteria’s story. They candidly tell of the many problems associated with running the two Soteria houses, staff burnout among them. They don’t claim that a Soteria approach will produce miracles. Some people so treated will recover, and others will continue to struggle with their delusions and behavioral problems. Providing people in severe distress with care of this type-a place to be, staffed by people who will care about them-is not an easy thing to do. It is, in fact, easier for a society to rely on medication as the treatment of choice. It requires less of us. But it is also a societal response that–as the World Health Organization studies revealed–does not do well by those in need.
We can, of course, learn from the past. I only hope that this book will help inspire many to think about how we can reform our care, and how we, as a society, might choose one day to “be with” those who struggle with “madness.”
[ Back to Top ]
Holly Wilson, RN, PhD
Professor Emerita, School of Nursing University of California, San Francisco
Part case history, part case study, and part personal odyssey, this book tells the story of the Soteria project through the voices of psychiatrist, Loren Mosher and his long-term colleague Voyce Hendrix. The two were the parents of Soteria House, creating it, caring for it, and seeing it through over a controversial, tumultuous, and fascinating moment in the history of community-based psychiatric care. For mainstream psychiatric professionals, many of the ideas and opinions in this history will be viewed as marginal if not heretical. Yet for social scientists and humanists, Soteria illustrates the applied interpersonal phenomenology of a meaning-seeking social movement and of an island of innovation in the quest for humanized care for society’s disturbed and disturbing members.
[ Back to Top ]
Medical Director of the Mental Health Center, Boulder County, Colorado,
Professor of Psychiatry and Adjunct Professor of Anthropology, University of Colorado,
Author of Recovery from Schizophrenia: Psychiatry and Political Economy
The results of the Soteria Project sounded a thunderclap throughout the field in the 1970s. They completely and permanently changed my view of how to practice psychiatry. The passage of time has only increased the importance of these findings and endorsed their validity.
[ Back to Top ]
Director, MindFreedom International, Eugene, Oregon
As a psychiatric survivor, I hope Soteria stories will be told and retold, again and again, because together they illuminate an exhilarating path toward deliverance from a mental health “system” gone mad.
In this book, Soteria’s stories about how people can support and help others experiencing extreme mental and emotional crises emerge in loving (and sometimes humorous) detail. Here, the authors detail how dissident mental health workers, professionals, and researchers heroically championed an historic project in the face of a tidal wave of repression from the arrogant, tradition-bound psychiatric profession. These stories teach us how to survive a confused, drug-addicted, authoritarian, and, at times, deadly mental health establishment. For all those who-when confronted with psychiatry’s crimes-ask, “But what’s the alternative?” Soteria offers an elegant reply. It tells the inside story of an effective, hopeful, commonsense, empowering alternative to mainstream mental health practices.
[ Back to Top ]
Courtenay M. Harding, PhD
Senior Director, Center for Psychiatric RehabilitationDirector,
Institute for the Study of Human Resilience,
Sargent College of Health and Rehabilitation Sciences,
For at least 30 years, Dr. Mosher has been a burr under the saddle of mainstream psychiatry. However, no one can argue with his central message: “If you treat people with dignity and respect and want to understand what’s going on, want to get yourself inside their shoes, you can do it.” The Soteria team identified crucial steps that persons with serious and persistent mental problems take to reclaim their lives: 1) connecting 2) partnering 3) communal identification 4) extending to outside relationships, and 5) network balance. Here are clinicians willing to talk about what worked and what didn’t. There are important lessons to be learned from Soteria’s history.
[ Back to Top ]