Consumer Movement Impacts System
This week's Newsweek includes this prominent piece on the
tremendous gains made over the past few decades by the national
consumer/survivor/ex-patient movement which, in all its diversity, has
successfully made personal rights and self-determination, and healing and
recovery as priority goals for local and state mental health systems across the
nation.
Consuming passion
The mentally ill are taking charge of their own recovery. But they disagree
on what that means
By Marianne Szegedy-Maszak Newsweek Health & Medicine June 3, 2002
Joseph Rogers has languished in both back alleys and back wards. Once, inflamed
by the mania of his bipolar disorder, he bought a ticket to Belgrade,
Yugoslavia, so that he could personally unearth the land mines in Bosnia. Some
psychiatrists remember awkwardly maneuvering around him when–to protest
mistreatment by the psychiatric establishment–he led and was arrested at a
sit-in during the annual meeting of the American Psychiatric Association in
Toronto. With his massive build, slightly deranged appearance, unruly beard, and
assortment of hats, the formerly homeless Rogers is not a figure one forgets
easily.
Rogers is no longer using his imposing presence to obstruct the psychiatric
establishment. For the past 18 of his 50 years, he has been one of the leaders
of the mental health "consumer movement." Since 1997 he has been executive
director of the Mental Health Association of Southeastern Pennsylvania, a $12.1
million organization that runs 30 programs for the mentally ill in Philadelphia
and surrounding communities. Most of its 326 employees are, like Rogers,
consumers (their preferred label, which they consider less stigmatizing than the
many others). Says Estelle Richman, Philadelphia's health commissioner: "Without
Joe, our system would not be what it is today. It would not be nearly as
responsive to the needs of consumers as it is."
Rogers is one of thousands of people suffering from brain disorders who have
radically changed how services are delivered to the mentally ill. Their mission
is simply stated: to encourage self-help, eliminate stigma, emphasize recovery,
and provide hope to those with mental illness. The movement is a curious hybrid
of the 1960s civil rights movement and more-recent health advocacy efforts–for
AIDS and breast cancer, for example. Although it began with a marginalized
collection of former mental institution patients demanding the closure of state
hospitals, today it's a national, mainstream movement, representing the entire
array of psychiatric diagnoses and challenging psychiatrists and other "helping
professionals." The first surgeon general's report on mental health, issued in
December 1999, stated: "Consumers are now seen as critical stakeholders and
valued resources in the policy process."
Shakeup
Mental health professionals, after long dragging their heels, have also come
to embrace the partnership. "The consumer movement has rattled what we were
taught," says Robert Bernstein, executive director of the Bazelon Center for
Mental Health Law. "The new model is that consumers will define for us how we
can be helpful," not the other way around.
Consider the sheer numbers: During the course a year, more than 40 million adult
Americans are affected by one or more mental disorders, and 6.5 million suffer
from severe mental illnesses. Estimates of the number of children with severe
emotional or behavioral problems range from 7.7 million to 12.8 million.
Despite the gains of recent years, the consumer movement also remains deeply
divided over the most basic ideas: what constitutes a mental disorder, and what
constitutes recovery. Those like Rogers, radical though he may appear, see their
disorders from a fairly orthodox medical perspective: "From my personal
experience, I think that there is such a thing as mental illness–that is as good
a name for it as anything–and that the brain is involved, and biochemistry is
involved, and things go wacko."
At the other extreme is Daniel Fisher, a psychiatrist, who has recovered from
schizophrenia and insists–much to the dismay of many of his psychiatric
colleagues–that there is little evidence for either a genetic or biochemical
cause for many of these disorders. For Fisher, recovery is not an ongoing
process often helped through medication but rather, like recovering from the
flu, a final and explicit goal for everyone who is diagnosed with a psychiatric
disorder. He explains the philosophy of his Lawrence, Mass.-based National
Empowerment Center: "We believe that you can do much better on your own without
too much treatment."
Fisher and the center's Laurie Ahern have developed a "recovery curriculum"
called Personal Assistance in Community Existence, or PACE. The program focuses
on the "development of trusting relationships, which in turn allows people to (re)capture
their dreams and (re)gain a valued social role." Considered to be the most
radical approach to mental illness by consumers, it nonetheless contains
elements present in even the most mainstream groups: an appreciation for
recovery, strong peer assistance, and the removal of stigma.
In the past, mental disorders were seen as chronic conditions from which one did
not "recover." Consumers, however, have changed that. Fisher through his own
experience asserts that while he once was diagnosed with schizophrenia, he no
longer has the disorder. Rogers says, instead, that he is "in recovery. I adopt
the AA model that recovery is something you can lose, so you must do things to
maintain it." The idea, never before associated with mental illness, is winning
converts. For example, the surgeon general's report acknowledges that a "new
recovery perspective is supported by evidence on rehabilitation and treatment as
well as by the personal experiences of consumers."
During the 1970s, when social justice movements burgeoned, patients who had been
released from mental institutions began what is now the consumer movement. The
names of the early groups–Network Against Psychiatric Assault, Mad Pride, Insane
Liberation Front–reflected the radicalism and the rage of that time. For these
activists, anger was not simply an expression of that era's zeitgeist. Many of
the founders were vet-erans of mental institutions with One Flew Over the
Cuckoo's Nest standards of care: forced, sometimes violent, treatment and
aggressive, often arbitrary medication. "The philosophy at the beginning of the
movement was very clear," recalls Sally Zinman, who was one of the early
activists and now is executive director of the California Network of Mental
Health Clients. "We were totally against forced treatment and for
self-determination."
Insight
For those with vivid personal memories of forced treatment in psychiatric
hospitals, treatment itself became the central issue. Emboldened by shared
experiences (and more recently armed with information from the Internet), many
rebelled at the notion that they didn't have sufficient insight into their
disorders to have a voice in their care. For some doctors, this came as a shock.
"Some professionals feared losing control of the treatment environment, " says
Michael Vergare, psychiatry chairman at Albert Einstein Medical Center, who has
worked closely with Rogers. "But once they see that we all want the same
thing–the most expedient way to help someone regain control over their illness
through compliance with care–then a partnership begins."
Sometimes. After all, no other illness so completely deprives the afflicted of
basic rights. Someone who is mentally ill often rides in a police car, not an
ambulance. A psychiatric diagnosis can lead to the loss of a job, health
insurance, even parental rights. And involuntary treatment, including forced
medication and hospitalization, is gaining support around the country. In one
national study, consumers were asked if the fear of involuntary treatment ever
caused them to avoid seeking traditional mental health services. Nearly half
said it had.
Ask Larry Fricks, the director of the Office of Consumer Relations for Georgia's
Division of Mental Health. He has been hospitalized three times for his bipolar
illness. He thought God was talking with him and had anointed him as one of his
prophets. While his family and doctors tried to make him take medication, he
refused for a very powerful reason: Medication was part of Satan's plan to take
away Fricks's ability to become one of God's great prophets.
Peer groups
In the hospital, he became friendly with a fellow patient who had a similar
illness and similar delusions. The patient said to him, "You know, Larry, I
talked to God, too, and I think you should take the meds because it helped my
relationship with him." Fricks says this marked a turning point in his illness:
"If a peer can help you take ownership of your own recovery and help you
understand your own illness, you are less likely to go into crisis and need
more-expensive services."
Fricks's experience was highly individual, but it reveals the therapeutic power
of both self-help and peer-to-peer support that is a hallmark of the consumer
movement. People with serious mental illnesses have formed many groups to help
one another with both emotional and practical issues like employment, housing,
and insurance.
Research has shown that participation in these groups lessens feelings of
isolation and increases the coping abilities of participants. One survey of the
self-help group Recovery Inc. found that participants reported fewer symptoms
and fewer hospitalizations after joining the group. In another study of 115
former mental patients, those who continued to attend self-help meetings at
least once a month over a period of 10 months were more likely to improve both
psychologically and interpersonally.
In the end, as fractious as the consumer groups may be, they at least agree on
one of the movement's most important contributions: hope to the afflicted. Says
Fisher: "We have influenced the widely held idea that a label of mental illness
does not have to mean a lack of hope."
The journey of Rogers shows how far the consumer movement has progressed. Last
week he was once again at the psychiatrists' annual convention, but this year he
was not wielding a bullhorn. Instead, he received an outstanding achievement
award from the American Association of Community Psychiatrists. "Usually, I am
outside getting arrested by the police for blocking the door," he says, smiling
at the fact and the metaphor. "It's nice to be invited inside."
Source:
http://www.usnews.com/usnews/issue/020603/health/3recover.htm
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