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2 July 1999

Vol. III, No. 1

Feature Article

Transforming Madness

New book celebrates Center for Psychiatric Rehabilitation

By Eric McHenry

With Imagining Robert, an account of his brother's lifelong struggle with bipolar disorder, Jay Neugeboren felt he'd said his piece about mental illness. Then he attended the graduation ceremony of Training for the Future, a computer skills program offered by BU's Center for Psychiatric Rehabilitation.

"I sit in the amphitheater at Boston University's Sargent College . . ." Neugeboren writes in the first chapter of his new book, Transforming Madness, published by Morrow in May, "and I watch and listen to individuals who have recovered from conditions of mind, feeling, and behavior that are generally considered chronic and incurable, and I look around and wonder: Where is Robert, and why isn't he here?"

Robert has spent much of his adult life in mental hospitals, halfway houses, and day treatment centers in New York City, and his prospects for recovery have seemed to dim with each passing year. Encountering the center, Jay Neugeboren says, opened his eyes to a range of treatments for mental illness that despite the years he'd spent seeking a better situation for Robert, he hadn't known existed.

"I think BU's is an extraordinary program," he says. "I'd finished Imagining Robert and was about to turn back to a novel I'd been working on. Going to that graduation ceremony was what inspired me to write Transforming Madness. I knew I could write a book based on what I'd discovered at BU."

While Imagining Robert (Morrow, 1997) is a memoir of sorts, very personal and particular, Transforming Madness is much broader in focus -- a survey and assessment of current strategies for confronting mental illness. Its tone, however, is not scholarly or clinical. Subtitled New Lives for People Living with Mental Illness, it moves casually from sketch to sketch, familiarizing the reader with resourceful people and innovative programs. Like Imagining Robert, a New York Times Notable Book of the Year, Transforming Madness is intended for a wide audience.

The center figures prominently in the book, in part because it provides Neugeboren with his point of entry and in part because center students and alumni are among those he profiles. There's Gaston Cloutier, for example, who works full-time for an organization that provides academic counseling and assistance for people with psychiatric disorders who wish to resume their education. Cloutier's life resembled that of Robert Neugeboren -- bouts of severe depression, frequent breakdowns, and hospitalizations -- until he found the center.

"There have been a lot of small and large miracles in my life," Cloutier says in Chapter Three of Transforming Madness, "but the one that affected me most dramatically was my getting involved in the BU program."

Training for rehabilitation
Founded in the late 1970s and affiliated with Sargent College of Health and Rehabilitation Sciences, the center offers education and training both for students who wish to become psychiatric rehabilitation professionals and, through individualized career support services and the computer training program, for people coping with mental illness.

"The center is a research training and service organization," says Larry Kohn, director of services for the center. "Its mission is to improve the lives of people who have psychiatric disabilities by improving the effectiveness of people, of programs, and of service systems all over the country and the world."

Kohn attributes the center's success with those who suffer from mental illness to the unique combination of benefits it offers them. One such benefit is a valued skill, such as computer literacy. "Work is a very wide door that people can walk through to regain some sense of self-esteem," he says. Another is "a peer group of people who've had psychiatric illness but are not gathered together to talk about problems -- they're gathered together to talk about improving their lot." A third benefit, he says, is the Charles River Campus.

"People wake up in the morning and say to themselves, 'I'm going to BU today,' not, 'I'm going to some day treatment program at a hospital,'" Kohn explains.

"For the first time since high school, I was a real student again," Cloutier says in Transforming Madness. "I was not manic. I was not depressed. I was not homeless. I was not an ex-mental patient. I was a student. What this did for my self-esteem was immeasurable."

Key is staff's commitment
A fourth benefit Kohn names is the center's staff, which includes founder and Executive Director William Anthony, SAR professor of rehabilitation counseling, and teachers Lisa Bellafato and Joe Wyse. Their dedication is confirmed in Transforming Madness, where people like Cloutier and Rose Tompkins, a woman with multiple personality disorder who has earned admission to the BU master's program in rehabilitation counseling after 30 years of intermittent hospitalization, consistently point to the staff as the decisive factor in their recovery.

"One of the cruelest things for a person is loneliness," Tompkins says in the book. "That's why things changed when I was studying in the BU program and was hospitalized, and Larry Kohn came and visited me after work a few evenings -- and I thought: He really cares about me. He's really visiting me, and nobody's making him do it. He must believe in me then, doesn't he? That made more difference than all the pills."

"Showing people that you believe in their ability to recover may actually make that recovery possible," Neugeboren says. "That attitude is crucial. But the attitude without skills goes nowhere. I'm not so concerned that people have compassion for my brother unless they also have the skills to help him. At BU, you've got very skillful, intelligent people who are also dedicated to what they do, and that's the difference."