The Guinea Pigs' Rebellion

The movement for the rights of mental patients is gaining momentum as "survivors" and "consumers" join forces.

BY CHRIS LYDGATE

In the mid-'70s, as a student at Harvard, David Oaks experienced what he calls "emotional problems." Diagnosed as psychotic, schizophrenic and manic-depressive, he was hospitalized five times, dragged into solitary confinement, thrown on a mattress, held down and injected with neuroleptic drugs. He can still remember pounding on the wire-mesh screen that separated him from the outside world.

Now, 23 years later, Oaks stands behind a lectern, puts his index finger to his forehead and crosses his fists in front of his face in the style of Malcolm X. Then he flings his arms apart like a prisoner breaking his chains, his outstretched fingers fluttering winglike over his shoulders.

In American Sign Language, the gesture means "mind freedom"--an appropriate topic for the National Summit of Mental Health Consumers and Survivors, which was held in Portland last weekend.

The 400 people at the conference know all about the stigma of being diagnosed with a mental illness. Many were hospitalized against their will and forced to take drugs that slowed their thoughts to a trickle. Now they are determined to challenge the institutions that once declared them insane, to scrutinize the system that subjected them to the unwavering surveillance of padded cells and psychiatric wards.

After his release, Oaks, 47, returned to Harvard, graduated with honors and moved to Eugene, where he dedicated himself to fighting for human rights in psychiatry. Watching audience members laugh and applaud as they repeat the freedom gesture, he allows himself a wry smile.

As he previously told WW, "The guinea pigs are fighting back." Until recently, mental patients had little say in their own treatment and less input in policy issues such as involuntary commitment or forced treatment. But at last week's summit, it was clear that activists like Oaks are changing the face of the mental-health system--and challenging long-held beliefs about the nature of insanity itself.

Indeed, at times the summit featured the kind of revolutionary rhetoric usually associated with the civil-rights movement. "This is not about reforming an ailing health care system," said Cecelia Vergaretti, program director of the Mental Health Association of Oregon, to cheers and applause.

"It's about reforming society." Like any emerging movement, this one is beset with rivalry and doctrinal disputes, which are reflected in the terminology. There are two distinct factions: those who continue to use mental-health services and call themselves "consumers" and those who reject the psychiatric system altogether and call themselves "survivors."

Joe Rogers, executive director of the Philadelphia-based National Mental Health Consumers' Self-Help Clearinghouse, which organized the event, represents the consumer wing. A 47-year-old Quaker with a quick smile and a bushy beard, Rogers was diagnosed with what is now called bipolar disorder at the age of 18. He takes medication and maintains contact with his psychiatrist. His primary concern is that none of the other voices in the mental-health system--providers, advocates, parents, spouses, siblings--really speaks for the consumers themselves. Rogers, whose outfit is primarily funded with federal money, seeks to build "a stronger voice for the recipients of services."

At the other end of the spectrum stands Oaks, rapid-fire and confrontational, who rejects what he calls the "medical model" of mental illness and even deplores the term "symptom." Describing neuroleptic drugs as "a hundred times worse than a bad acid trip," Oaks says most mental patients can recover from their illness through diet, exercise, meditation, writing and peer support. "I was told I had a biochemical brain disease," he says. "They still tell people that. They tell people that every day. It's a horrible lie."

"The system wants people to believe that mental illness lasts forever," agrees psychiatric survivor Pat Risser, 46, a West Linn resident who underwent dozens of involuntary hospitalizations before recovering from a variety of mental disorders. "That's very, very defeatist. In subtle ways, the system brainwashes people into being mental patients--hopeless, helpless and dependent."

In their less charitable moments, survivors insinuate that consumers are federally funded stooges, psychiatric castrati clinging to the system that neutered them. Consumers, on the other hand, occasionally float the implication that survivors--who often sound like Scientologists--are "symptomatic," a polite term for "off the deep end."

Despite their differences, the two groups have more in common than not. They both agree that coercion--including the use of restraints, forced medication and involuntary outpatient commitment--should be banned from the mental-health system. They oppose any efforts to strengthen civil commitment laws and favor opening up the mental-health system to closer scrutiny.

Across the nation, consumers and survivors are taking an increasingly prominent role in the mental-health system. In Oregon, for example, the state-funded Office of Consumer Technical Assistance (itself run by consumers/survivors) is pushing for more consumer representation within the system.

At his day job, Kevin Fitts, OCTA's director, remains strictly nonpolitical. But at the conference, Fitts has few kind words for psychiatry and the pharmaceutical industry. "It's like the medieval Catholic church," he tells a reporter during an impromptu parking-lot interview. "If you question it, you're excommunicated."

In many ways, this eruption of resentment is the result of decades of stigma, over-prescription of tranquilizers, institutional abuse and the ability of activists to get organized via the Internet. But recent high-profile episodes of violence on the part of the mentally deranged have also galvanized consumers and survivors, who fear they will be scape-goated by an ignorant public. "I've never seen folks as united and active and organized," says Oaks.

The question is no longer whether they can make their presence felt, but how.

According to the National Institute for Mental Health, more than 19 million adult Americans suffer from major depression, bipolar disorder, or dysthymia; more than 2 million adults are affected by schizophrenia.

NIMH estimates that more than 16 million adults suffer from anxiety disorders, which include panic disorder, obsessive-compulsive disorder, post-traumatic stress disorder, social phobia and generalized anxiety disorder.

There are several other terms used by people who have undergone mental-health treatment, each reflecting slight differences of philosophy or experience: "mental patient," "ex-mental patient," "user," "client" and "recipient."

 

[Originally published in Willamette Week, September 1, 1999.]