Recovery in the Mainstream

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Health Medicine 6/3/02
Consuming passion:
The mentally ill are taking charge of their own recovery. But they disagree on what that means
By Marianne Szegedy-Maszak

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 effortsˆfor 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 insistsˆmuch to the dismay of many of his psychiatric colleaguesˆthat 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 thingˆthe most expedient way to help someone regain control over their illness through compliance with careˆthen 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."

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