Standing on a concrete island in downtown San Fancisco,
David Oaks yells into a bullhorn the climactic line from the film
"Network": "We're mad as hell and we're not going to take it
anymore."
The line would be a cliché if it weren't for one thing:
Oaks means to be taken literally.
On this sunny day, as thousands
of mental-health professionals stream into the air-conditioned cool of the
Moscone Center for the 156th annual meeting of the American Psychiatric
Assn., Oaks and his cadre of supporters are quite mad, thank you. They are
former patients in what many would call a dysfunctional mental-health
system.
As protesters carry signs that read "Psychiatrists Cure
Dissent, Not Disease" and "Self Help Works," Oaks invokes his holy trinity
of social activists—Martin Luther King Jr., Cesar Chavez and Justin Dart,
the father of the Americans with Disabilities Act. "We're calling for a
nonviolent, global revolution of self-determination and empowerment," he
says, eyes dancing. "The inmates are ready to take over the
asylum."
Soft-spoken and even-keeled in private, Oaks unleashes his
rage publicly by tapping into the trauma he experienced as a patient in
the mental-health system. In the 1970s, while he was a student at Harvard
University, Oaks was diagnosed as schizophrenic. He was institutionalized
and forcibly medicated. He recovered, he says, by rejecting drugs and
getting support from family and friends. "I was put on Haldol and
Thorazine, and it was torture," he tells the San Francisco crowd. "They
took a wrecking ball to the cathedral of my mind."
Oaks, now 48, is
executive director of MindFreedom Support Coalition International, a
Eugene, Ore.-based umbrella group for the "Mad Pride" movement. The
grass-roots campaign, also known as "MindFreedom," includes so-called
psychiatric survivors and dissident psychiatrists who reject the
biomedical model that defines contemporary psychiatry. They say that
mental illness is caused by severe emotional distress, often combined with
lack of socialization, and they decry the pervasive treatment with
prescription drugs, sales of which have nearly doubled since 1998.
Further, they condemn the continued use of electro-convulsive therapy—or
ECT, also known as electroshock—which they say violates patients' human
rights.
Theirs is a philosophy born of "being chewed up and spit
out by the system," says Oaks, and their views pit them against nearly
everyone within the medical establishment, including American Psychiatric
Assn. members, the pharmaceutical companies that increasingly fund drug
development and testing, and even the National Alliance of the Mentally
Ill, a prominent advocacy group.
Broadly speaking, those
organizations believe that decades of research have proven that
schizophrenia, bipolar, severe depression and other mental disorders are
biological illnesses of the brain caused by some undiscovered combination
of genetic, neurochemical and social factors. They believe that, along
with psychotherapy, these illnesses should be treated with drugs (and
sometimes a panoply of drugs) that target the biochemical mechanisms of
psychiatric disorders.
"Our brains are biological organs by their
very nature," says Dr. Paul Appelbaum, past president of the American
Psychiatric Assn. "Any disorder is in its essence a biological
process."
Given the expertise and money involved in those
organizations, Oaks and his allies would seem to face hopeless odds.
MindFreedom operates on the fringe of the mental-health community; its
protest in front of the Moscone Center drew all of 100 people. Oaks admits
that he has no evidence to dispute the medical-scientific model of mental
illness. What he and his small army do have is look-in-the-mirror evidence
about their recovery from mental illness, often accomplished by not taking
medication. They also trumpet evidence that, notwithstanding the experts'
medical degrees and their "miracle" drugs, confirms that the nation's
mental illness system is in crisis. Consider:
• Four of the
10 leading causes of disability worldwide are neuro-psychiatric disorders,
according to a 2001 World Health Organization study.
• The
National Institute of Mental Health estimated in its most recent study in
1995 that the annual cost of mental illness in the U.S., including medical
care and lost productivity, was $185 billion.
• Only about
one in five Americans with major depression receives adequate care,
according to a recent Journal of the American Medical Assn.
study.
• More than 30,000 Americans committed suicide in
2001, 10,000 more than those killed in homicides that year.
"The
system is broken," says Robert Whitaker, author of "Mad in America: Bad
Science, Bad Medicine and the Enduring Mistreatment of the Mentally Ill."
"The so-called triumph of the psychiatric-pharmaceutical model has
produced the horrible outcomes we have today."
Given those
outcomes, can anyone completely dismiss the experiences of people who have
lived with, and overcome, mental illness?
I conversation, Oks is
earnestly persuasive. H keeps his wavy hair tied back in a ponytail, and
his pale blue eyes are hidden behind clunky glasses. Because of a fused
spine, he is unable to turn his head normally.
The incidents that
turned him into a radical activist occurred during his sophomore and
junior years at Harvard. He arrived in Cambridge in 1973 on an academic
scholarship, a working-class kid from Chicago's South Side who wanted to
study government and economics (or, as he calls it, "power and money").
Intimidated by Harvard's lofty reputation and the boarding-school
backgrounds of many of his classmates, Oaks says he struggled to find his
place. After experimenting with marijuana during his sophomore year, he
entered what he describes as "an altered state." He heard voices and
believed he was communicating with God—classic signs of schizophrenia, a
disease suffered by more than 2 million Americans.
At the college
infirmary, Oaks was given medication that included heavy doses of
Thorazine, an anti-psychotic drug. Oaks says he only managed to take
Thorazine for 10 days before quitting. "It just wiped me out," he
says.
He managed to finish the term, then returned to Harvard after
the summer. Again he smoked pot and experienced hallucinations. "I thought
the CIA was making my teeth grow, and the TV was talking to me, and God
was communicating with me through the radio."
This time he was
taken to McLean Hospital, where Nobel Prize-winning mathematician John
Nash ("A Beautiful Mind") and poets Robert Lowell and Sylvia Plath had
been treated. Oaks says he was locked in solitary confinement and
underwent what patients call "a gooning," or forced drugging. "The male
attendants hold you, pull down your pants and inject you in the butt," he
says. "It felt incredibly intrusive and humiliating. I felt like it was
about them dominating my being rather than about helping me."
He
left McLean after one month, then flushed his remaining lithium down the
toilet. He then found the Boston-based Mental Patients Liberation Front,
one of the original rights groups for mentally ill patients, where he
learned how to eat healthfully and exercise, to ask for and get support
from peers, to feel part of a community.
The latter half of the
1970s was a heady time for psychiatric survivors. Former patient Judi
Chamberlin had just written "On Our Own," her critique of the
mental-health system that has since become the movement's bible. Support
groups sprang up across the nation. Their message: Recovery is possible
through housing arrangements, job training and rehabilitation. "The
doctors told me I had a broken brain," Oaks says. "They told me there was
nothing I could do about it. Well, I did get better."
The
self-empowerment model provides hope for those recovering from mental
illness, says Dr. Daniel Fisher, a psychiatrist and executive director of
the National Empowerment Center, an information clearinghouse for medical
services consumers. "People need to realize that they can and do fully
recover from mental illness, but they have to be an agent in their own
life. If they're a passive recipient [of care], they're worse off. They
may not have severe symptoms anymore, but they're never going to go out
and get a job."
Oaks worked with the Mental Patients Liberation
Front for four years before moving to Berkeley and then settling in
Eugene. Throughout the 1980s, he organized rallies against the American
Psychiatric Assn., protested the revival of electroshock therapy and wrote
for Madness Network News, a now-defunct magazine for the nation's
psychiatric survivors. In 1990, he and others founded Support Coalition.
Now called MindFreedom, it has an annual budget of about $80,000, which
comes from membership fees, donations and sales of books and T-shirts.
Some 100 grass-roots groups have joined as sponsors. Bearing names
such as "Prozac Survivors Support Group," "Women Prisoners Convicted by
Drugging" and "Network Against Psychiatric Assault," they promote
alternative options for psychiatric treatments.
"The fact that the
movement has survived is due in large part to David's ability to work like
a dog for almost no money and his ability to mollify those people who are
outraged," says Dr. Loren Mosher, former director of the National
Institute of Mental Health who resigned from the American Psychiatric
Assn. over what he dubs the "unholy alliance" between psychiatrists and
drug companies. "He has managed to keep a lot of disparate opinions under
the tent."
Oaks quips that he is now "quote-unquote normal" by
society's reckoning. He owns a home, is happily married and works full
time with MindFreedom. He boasts that the movement to which he's devoted
his life has earned respect and tangible gains. State and federal
governments routinely fund local community drop-in centers, support groups
and the annual "Alternatives" conference. The survivors' perspective is
included in President Bush's New Freedom Commission on Mental Health,
while MindFreedom has been accredited by the United Nations as a
nongovernmental organization with consulting status.
Psychiatric
survivors now have "a seat at the table," says Sally Zinman, executive
director of the Sacramento-based California Network of Mental Health
Clients.
A the Aerican Pychiatric Asn. convention, it's not
difficult to see what Oaks is up against. The floor of the Moscone Center
resembles a brightly colored field of California poppies. Dozens of
carpeted booths, in lavish hues of aqua green and shocking purple, line
the gigantic hall, each one trumpeting the benefits of modern-day
pharmacology. Here's Paxil, for relief of anxiety; there's Zoloft, to
combat depression; and here's Ritalin, for attention-deficit disorder.
Even the schedule for the hotel shuttle buses is "sponsored" by Risperdal,
a popular treatment for schizophrenia.
The effect is, at once,
soothing and disquieting. Help is at hand, these drugs promise, while the
sheer volume of products screams: You Need Help, Now!
Oaks and
other Mad Pride advocates emphasize that they're not anti-drug; many of
their members take medication to overcome mental illness. What they object
to is the pervasiveness of medicating every facet of human behavior. "This
pill-for-every-ill method is just a quick fix that treats the symptoms,
not the problems," says Fisher. "We've lost something along the
way—connecting with people and helping them."
Many of these highly
touted drugs, notes journalist Whitaker, have been deemed harmful.
Thorazine was introduced by pharmaceutical giant Smith, Kline & French
in 1954, when many psychiatrists believed that it and other
"mind-ordering" anti-psychotics would help patients recover. Its
development, according to one medical historian, "initiated a revolution
in psychiatry, comparable to the introduction of penicillin in general
medicine." Thorazine proved effective, but it also had debilitating side
effects. Some patients developed symptoms similar to those of Parkinson's
disease, including a shuffling gait and drooling. Permanent brain damage
can occur.
Thorazine has been replaced by a new generation of
anti-psychotics known as atypicals, which psychiatry boasts are more
effective in treating schizophrenia. But research would appear to bolster
Mad Pride's claim that the drugs have unintended side effects. This year,
a Veterans Administration study indicated that certain atypicals increase
the risk of diabetes in some patients.
In addition, studies have
demonstrated that the drugs currently used to combat depression—known as
SSRIs, or selective serotonin reuptake inhibitors—are dangerous for some
patients. The United Kingdom has banned the use of Paxil in children under
18 following a spate of suicides; the FDA announced that it will
re-examine clinical trial data on Paxil. And the Archives of General
Psychiatry reported that SSRI use during late pregnancy may cause
neurological disorders in babies.
Many in the Mad Pride movement
blame the pharmaceutical companies' deep pockets. The companies routinely
bankroll the studies published in the most prestigious medical
journals—often without the public's awareness of this practice. According
to pharmaceutical sales data and information from the
consulting company IMS Health, sales of psychotherapeutics
reached $21 billion in 2002, almost double the $11 billion in sales in
1998.
Even one of Oaks' most vocal critics, Dr. E. Fuller Torrey,
president of the board of the Arlington, Va.-based Treatment Advocacy
Center, agrees that psychiatry has been usurped. "Many of my colleagues
have accepted more money [for research and as gifts] than they should
have," he says. "This is a huge problem."
But Rick
Birkel, executive director of the National Alliance of the Mentally Ill,
defends the drug companies as funding critical research
and development of lifesaving drugs. "We couldn't do this work—we couldn't
make the advances we've made—without industry developing psychiatric
drugs. Those medications allow some people to live the lives they
want."
Drugs aside, the treatment Oaks objects to most vehemently
is electroshock therapy. ECT induces a series of epileptic-like seizures
through shocks to the brain. Although its use diminished in recent decades
as drugs became more prevalent, ECT has made a quiet comeback as a
last-resort treatment for the severely depressed. In California, one of a
handful of states that require tracking of ECT, the Department of Mental
Health reports that nearly 3,200 patients have received
ECT.
According to Torrey, ECT is effective in emergency situations.
"ECT is a primitive form of therapy, but it's the only form that works for
some severely depressed patients," he says. "We will all be happy when we
can develop something different, but ECT can be a lifesaver."
Oaks
considers ECT "barbaric," with a high relapse rate, and notes that it
often causes memory loss. He says that, in certain situations, ECT is
administered without patients' consent. This gets to the heart of
MindFreedom's philosophy; to Oaks and his allies, such invasiveness is a
violation of civil rights. As pioneer activist Chamberlin put it, "If it
isn't voluntary, it isn't treatment."
To the medical establishment,
this is heresy. Its members have lobbied for laws that mandate involuntary
treatment of the severely mentally ill, including California's AB-1421,
also known as Laura's Law, named for the 19-year-old woman shot to death
by someone who was mentally ill. Without such safeguards, they argue,
patients could harm themselves or others.
"There are a small
percentage with mental disorders who by virtue of the disorder lose the
insight into their own condition to appreciate they're ill and that they
need treatment," Appelbaum says. "Mental illness is no different than
other illnesses that may impair the decision-making capacity of an
individual."
Counters Chamberlin, "It's a coercive system by its
nature, one that doesn't listen to, much less respect, the people. The
person thinks her life is worse [on medication], but the doctor says she's
better. He's the judge, jury and executioner."
By staking out turf
at the fringe of the survivors' movement, Oaks regularly clashes with the
National Alliance of the Mentally Ill, which bills itself as a
"grass-roots, self-help, support and advocacy organization of consumers,
families and friends of people with severe mental illnesses." Oaks and
others accuse the group of taking substantial donations from
pharmaceutical companies. The result, he says, is that the drug industry
has appropriated it. "They want a simple answer," he says. "They want to
dam up the problems, even if that means forcible drugging and years of
being locked up in an institution. As long as an adult child isn't
homeless or openly hurting themselves, they think it's a success."
Birkel says the alliance does accept millions in drug company
donations, estimating that the money is about 20% of the group's budget.
He defends the practice, saying that "all advocacy groups in the health
fields take donations from the pharmaceutical industry. The real issue is
how do you maintain independence? We can walk away from the pharmaceutical
industry on any issue."
Birkel claims that Oaks is targeting the
wrong groups. "I don't know what they do, other than the protests," Birkel
says. "I don't think they're the good guys."
Other survivors,
however, believe that Oaks' radical politics serve as a necessary
counterbalance. "David is like the Malcolm X of the psychiatric survivor
movement," says Zinman of the California Network of Mental Health Clients.
"He's out there speaking the truth in all its rawness and
purity."
Oks and the psychiatry establishment may disagree
philosophically, but they do agree on one point: America's mental-health
system is in a shambles. "At a time when treatment for psychiatric illness
has never been more effective, access to that care is fragmented,
discontinuous, sporadic and often totally unavailable," a recent American
Psychiatric Assn. Task Force concluded. "The numbers of individuals with
serious and persistent mental illness who are incarcerated or homeless and
without support have reached epidemic proportions."
Birkel has
called it "a broken system of care," while the American Psychiatric
Assn.'s Appelbaum concedes that "we've focused on new, more effective
treatments, but we've neglected to pay attention to put the systems in
place to implement them."
To publicize the crisis in mental health,
Oaks took a page from his heroes' book by staging a hunger strike in
August. Holed up in a small building in Pasadena, he and several others
challenged the American Psychiatric Assn., the National Alliance of the
Mentally Ill and the U.S. surgeon general to produce evidence that
established "the validity of schizophrenia, depression or other major
medical illnesses as biologically based brain diseases" and that "any
psychotropic drug can correct a 'chemical imbalance' attributed to a
psychiatric diagnosis."
The alliance and the surgeon general did
not officially respond. Says Birkel: "I found the challenge to be
useless—it's like proving how many angels dance on the pin."
The
American Psychiatric Assn. did reply, meeting personally with a delegation
of hunger strikers. In a statement released in September, the association
said that "it is unfortunate that in the face of this remarkable
scientific and clinical progress, a small number of individuals and groups
persist in questioning the reality and clinical legitimacy of disorders
that affect the mind, brain and behavior."
The association,
however, also conceded that "brain science has not advanced to the point
where scientists or clinicians can point to readily discernible pathologic
lesions or genetic abnormalities that in and of themselves serve as
reliable or predictive biomarkers of a given mental disorder or mental
disorders as a group . . . . Mental disorders will likely be proven to
represent disorders of intercellular communication; or of disrupted neural
circuitry."
To Oaks, who fasted for 12 days of the 22-day strike,
that admission was no small victory. "They acknowledged that they didn't
have the biological evidence [of mental illness], so that's on the
record," he says. "Now it's time for the APA to implement a far more
complex model [of mental illness] that reflects the whole person and not
just this narrow, reductionist, biological model."