No More Shame

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.

“They could have given up on the medical establishment entirely,” Hyman said. “Instead, what [parent advocates] have done is to channel their energy in a very constructive way.”

Shetler and Young fought back, but both stress they were not the first. NAMI wove together the independent parent groups throughout the country that had sprung up out of a common need for solace and basic information.

Tony and Fran Hoffman were among six couples to gather in a San Mateo living room in 1974 to form Parents of Adult Schizophrenics. Their clearest memory is of an initial, nearly joyous sense of relief.

“It was like the calves in springtime when you first let them out of the barn,” Tony Hoffman said.

At first they just shared talk and tears; they called their meetings “woe nights.”

Then, “We decided to go political,” he said. They successfully pushed for more local mental health services and for other parents to “come out.” At one meeting, the Hoffmans ran into their longtime next-door neighbors, learning only then that their son too was schizophrenic.

By the time of the inaugural NAMI conference, California already had 30 or 40 family groups, Hoffman said.

“All of us like to look back and feel like we’ve made a difference, and this is one place we feel like we have.”

*

Family activists decided early that science--good science--was their greatest hope.

Researchers eagerly snapped up government funds that advocates shook loose, and families gratefully accepted their potentially destigmatizing findings.

Largely through advocates’ lobbying efforts, the budget of the research-oriented National Institute of Mental Health swelled from $287 million to $701 million in the last 10 years.

Advances in neuro-imaging and pharmacology enabled families to point to schizophrenia, major depression and anxiety disorders as brain diseases increasingly amenable to treatment. Meanwhile, family advocates hastened to learn the layout of the brain and the language of the lab.

“I have to keep getting much more sophisticated,” said Dr. E. Fuller Torrey, a researcher with a schizophrenic sister. “They are very knowledgeable.”

Their enthusiasm is, of course, far from academic. Findings about the physiological basis of mental disease have bolstered their anti-discrimination agenda, confirming that such illness is not the product of poor parenting or of a weak character.

Hyman warns that families can carry these conclusions too far, sometimes glossing over the interplay of biology and life experience in diseases such as major depression.

But family advocates don’t dwell on the nuance: NAMI’s current anti-discrimination campaign stresses that major mental illnesses are no less physical than Parkinson’s and Alzheimer’s diseases.

As such, they argue, they are no less deserving of insurance coverage. The argument has met with growing success, as parity bills of varying scope have passed at the national and state levels.

Some critics say NAMI’s focus has been too narrow, on coverage of severe brain-based disorders to the exclusion of other diseases with strong environmental components, such as post-traumatic stress disorder.

But narrower coverage is less expensive and more politically palatable. That’s why California advocates have limited their sights to coverage for severe biological illnesses only in adult patients.

Still, insurers are resisting, saying the California bill is open to broad interpretation.

“Employers can’t afford it,” said Maureen O’Haren, a lobbyist for the California Assn. of Health Plans.

Family advocates consider it a matter not just of money, but of justice. Wallace Craig says he is living the injustice.

He and his wife, who died last November, belonged to Kaiser Permanente. When his wife, a manic-depressive, used up her allotted inpatient coverage, Kaiser refused to pay for more hospitalization, he said.

So Craig, a Realtor and former Red Cross employee, had her admitted to a county hospital for two months at a cost of about $45,000. Now 70, he said he will be paying that bill off until he is 92.

“There’s no pity for you if you are the spouse of a mentally ill person,” he said bitterly.

A Kaiser spokesman said the company sets coverage limitations with employers, and that Kaiser is far from unique in limiting mental-health coverage.

Once private insurance is exhausted, the majority of mentally ill people end up on government assistance.

Families often complain that patients are marginalized. In California, for example, poor patients on Medi-Cal often cannot obtain the newest, most effective psychiatric drugs until they have tried the older ones without success.

Advocates are pushing a bill to make the best drugs available immediately. But some patients, meanwhile, have been reduced to desperate measures.

Annette Tapper, 53, of Van Nuys posed as a psychiatrist’s secretary to get samples of an anti-psychotic she needed from the drug manufacturer.

“A lot of patients . . . wouldn’t be able to do that,” she said. “They are either stone catatonic or delusional. They don’t have the wherewithal to act on their own behalf.”

*

Acting on patients’ behalf was one of the family movement’s original goals. But now, as treatment improves, more patients are ready--and willing--to be their own advocates.

The result isn’t always harmonious. While patient and family advocates often unite on issues of nondiscrimination, they sometimes clash when it comes to involuntary commitment, medical privacy and use of medications.

“It borders on a love-hate relationship,” said Joseph Rogers, a manic-depressive who directs a national mental health consumer group.

The rifts often are political, but they are personal, as well.

“A lot of people with illness . . . are alienated from their families because they can’t forgive each other over the past,” said Frank Baron, 37, a former engineer who has a mental illness.

He said this alienation, and the fear of stigma, have kept many patients away from politics.

“I will not live in fear,” he said recently, after returning from a lobbying trip to Washington, D.C. “I hope to make a difference.”

Watching patients become involved is gratifying to some family members whose greatest regret, over the years, was losing someone they knew and loved to a disease they couldn’t fathom.

But their activism was never about replacing what was lost, only about making that loss more bearable--for themselves and other families.

Years ago, Susan Dempsay funneled her grief about her son’s schizophrenia into community work, founding a successful rehabilitation center for severely ill patients. Step Up on Second, in Santa Monica, now serves 110 people a day on an annual budget of $2 million.

Dempsay’s son, now living in a similar New York center, is not doing as well. He hasn’t hit upon the right drug and hasn’t gone back to work.

Meanwhile, Dempsay got so busy her marriage fell apart.

“I have chosen to make this [center] my life for the past 12 years,” she said. “It’s almost as though it’s what I lived for.”

The work doesn’t cure anything, but can serve as a salve of sorts.

It’s “very good medicine,” NAMI co-founder Young said. “Even if you can’t make your family member well . . . you can use that frustration, that energy, to bring about hopeful change. That is the part that gives us whatever wellness we have.”