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No More Shame

They fought the fear and the stigma. And now activists are seeing mental illness get the kind of treatment--and understanding--other brain diseases receive.

June 03, 1997|JULIE MARQUIS | TIMES STAFF WRITER

They came together over a meal--one woman, angry; the other, terrified. Each had a secret, a son whose psyche had inexplicably crumbled as he entered manhood.

Harriet Shetler was furious at doctors' suggestions that family dynamics had somehow driven her boy mad. Bev Young just didn't know what to do, now that the family had retrieved her son from college, where he had taken to perching himself perilously high on windowsills.

Introduced by a church acquaintance, the two Madison, Wisc., women met for lunch in 1977, when "mental illness" was something to be whispered about, and "schizophrenia," cause to consult the dictionary.

"It was so important, I kept forgetting to pick up my silverware," Young recalled. "Finally, I was speaking to someone who knew what I was talking about. . . . After a second lunch, we said, 'Let's organize.' "

Little did they know how common their feelings of fury and fear were--and, once harnessed, how powerful they would become. Against the forces of stigma and with little more training than volunteer work, these two mothers fostered a movement that has fortified families across the country and now is muscling its way into public policy and popular awareness.

"We got this family group going, and it just sort of took off," said Shetler, 79, who with Young co-founded the National Alliance for the Mentally Ill in 1979. "Everybody was ready."

Families inside the alliance and other grass-roots groups have worked doggedly--and many would say, with remarkable success--to draw mental illness out from under its shameful cloud. United by miserable experience, these mostly middle-class families have won the sort of credibility that many more conventional special interest groups cannot muster.

They are now "the greatest single advocacy force [in mental health] and in some ways, have greater moral authority than the professional societies," said Dr. Steven Hyman, director of the National Institute of Mental Health.

Sheer numbers help. From the time of its inaugural convention 18 years ago in Madison, attended by 250 people, the alliance, or NAMI, has grown to 140,000 members with 1,100 chapters.

Family advocates threw their weight behind psychiatric research, which exposed the once-mysterious concept of "insanity" as a product of brain disorders, for which no one, patient or parent, is to blame.

They made it safer to be sick: The likes of newsman Mike Wallace, actress Patty Duke and musician Naomi Judd now openly discuss their own struggles with mental disease.

And they enlisted politicians, some with mentally ill relatives of their own, in their cause. Thirteen states have passed bills of varying scope requiring employers to cover mental illnesses on par with so-called physical diseases.

A limited, but symbolically significant, federal parity law passed last year. And such bills are pending in more than a dozen other states, including California, where an Assembly vote is expected as early as today. All this leaves family advocates a little breathless, but not nearly satisfied. Patients still fall ill, get fired, use up or lose their insurance, and end up on the streets or in jail.

Families still mortgage homes to pay the medical bills and suffer in silent isolation. Aging parents, some with health problems of their own, still agonize over what will happen to their ill children when they are gone.

Even those family activists plugging away hardest often see no rewards close to home.

"I couldn't help my own son," said one 68-year-old mother from Riverside County whose adult son is manic-depressive. "Perhaps I can help someone else."

She grew afraid, over the years, of his volatility--so much so that she took out a restraining order against him and returns the letters he writes from jail. He is doing time for vandalism.

"He's my only child," the woman said, "and I never mention his name."

*

If the progress of the mental health movement seems dramatic, it is partly because the past was so dismal.

In the late 19th and early 20th centuries, mental patients were crowded--essentially incarcerated--in institutions. Some were no better treated than animals--neglected, beaten and experimented upon.

The policy of "deinstitutionalization," adopted officially in the 1960s, gave patients back their freedom, but even proponents who applauded the principle acknowledged it could be cruel in practice. The welcoming, ubiquitous community mental health centers they had envisioned never materialized.

Just as parents, by default, became caretakers for their mentally ill children, they often were blamed, directly or subtly, for causing their youngsters' plight.

Cold mothers who gave impossibly mixed messages, women who secretly wished their children were never born--these were the erroneous explanations for schizophrenia and autism. Doctors cut off families from the treatment process, suggesting they'd done quite enough.

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