Consumers are unhappy with clinicians' efforts in treating mental illness

By Joe Volz
Monitor staff

Mental health consumers and survivors turned the tables on psychologists attending APA's 1999 Annual Convention, Aug. 20 - 24 in Boston, by analyzing the clinicians, in what was billed as a dialogue on mental illness treatment.

Most of the 20 consumers--many psychologists themselves who had suffered schizophrenia or bipolar disorder--accused APA members of showing little interest in those suffering from severe long-term illnesses and of not doing enough to erase the stigma of mental illness at the "Consumers and Psychologists in Dialogue" miniconvention.

But there wasn't much dialogue, because few psychologists, other than those who had suffered mental illness themselves, attended the miniconvention. It was spread over 11 sessions featuring topics from diagnosing major mental illness, to family issues, to recovery techniques.

Fred Frese, PhD, a Case Western University psychology professor who announced to the audience that he was celebrating his 33rd anniversary dealing with his own schizophrenia, told absent psychologists, "You have been conditioned attitudinally to distance yourselves from the likes of us."

He said that psychologists wrestle with boundary issues. The unwritten rule is "You can't be a friend to these people [consumers]. Get off it,'" he fumed to the appreciative audience of consumers.

Ronald F. Levant, EdD, APA recording secretary and one of the organizers of the miniconvention, agreed.

"Too often such long-term conditions as schizophrenia and bipolar disorder are viewed extremely pessimistically, as incurable conditions," he said. "But evidence has been accumulating that indicates people diagnosed with serious mental illness do recover through a combination of psychotherapy, psychosocial rehabilitation, consumer-run self-help programs and medications."

Some hopeful work

Levant said that psychology would be well-advised "to work to develop partnerships with consumers. There is a growing cadre of people who have recovered from serious mental illness who can serve as invaluable allies in the recovery process."

The consumer-psychologists in attendance were not typical of the estimated 5.4 million adults who, according to the Center for Mental Health Services, have "severe and persistent mental illness." But the point they made repeatedly was that recovered patients can offer unique insight into treatment and education--and more psychologists should pay attention to them.

"Most of my education as a psychologist has come from what I learned as a consumer," said Ellen Cohen, PhD, of New York, who had suffered chronic mental illness since she was a teenager. Levant, dean for psychological studies at Nova Southeastern University of Fort Lauderdale, admitted, "Psychology is not currently a major player in the care and treatment of patients suffering from long-term mental illness. This is somewhat ironic because, at one time, clinical psychology had defined its purview as serious psychopathology."

Frese, a dramatic speaker who has become a leader in the consumer/survivor movement, said he was stimulated to pursue a psychology career as a young naval officer in the 1960s, when, after being diagnosed with paranoid schizophrenia, he was told by a psychologist: "If it weren't for your illness, you could even have become a professional."

Said Frese: "I found myself challenged by this blanket dismissal of my prospects for a professional career and became even more determined to accomplish my goals."

But although he was able to lead a successful professional life, he kept his illness secret, fearing it might affect his career. A decade ago, as director of psychology at Western Reserve Psychiatric Hospital, Frese decided to end his silence about living with schizophrenia and became active in consumer advocacy groups.

Survivors v. consumers?

Psychologist Ronald Bassman, PhD, of the New York State Office of Mental Health, agrees. In his 20s, he was diagnosed with schizophrenia and given electroshock, insulin comas and "massive doses of mind-numbing drugs."

Bassman recovered, and for the last 20 years has worked as a licensed psychologist, including in a state hospital and in independent practice. He has reached the conclusion that psychology schools are teaching techniques that may have been appropriate 50 years ago but are out of date now.

Writing in Professional Psychology: Research and Practice (Vol. 28, No. 3, p. 238 - 242) Bassman said, "when people are diagnosed with serious mental illness, they carry a label that historically has targeted them to be stigmatized, shunned, imprisoned and, in the not-too-distant past, tortured and killed."

Bassman thinks what a former patient is called is important. He says psychiatric "survivors" object to being called "consumers."

"The forced treatments that most survivors have experienced dissolved the illusion of being informed consumers in a free and open marketplace," he said.

But a young woman in the audience, who said she was a recent graduate of the University of Michigan and suffered from bipolar disorder, warned not to put too much emphasis on terminology.

"I feel a sense of animosity, of attack and counterattack," she said. "We can change the words as much as we want, but if we don't change the attitude, what are we doing?"

Levant, who was sympathetic to the speakers' concerns throughout the sessions, said APA is working to change attitudes, beginning with the resolution on stigma and serious mental illness passed by the APA Council of Representatives last February.

"A population this vulnerable and disabled," he said, referring to the nearly 3 percent of the population estimated to be severely mentally ill, "deserves much better care than our society now offers."

He disagreed, though, with groups that contend serious mental illness is a brain disease and, therefore, treatable only by biological intervention.

"Many psychiatrists have abandoned this population," Levant said. "Furthermore, the outcome research strongly indicates that while medications can suppress the symptoms of serious mental illness, psychological rehabilitation actually holds out hope for recovery."



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