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.]