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.
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Robert Whitaker
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."
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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.
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Richard
Warner
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.
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David Oaks
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.
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Courtenay
M. Harding, PhD
Senior Director, Center for Psychiatric RehabilitationDirector,
Institute for the Study of Human Resilience,
Sargent College of Health and Rehabilitation Sciences,
Boston University
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.
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