The LA Times profiles MindFreedom International and director David Oaks.
Losing the Mind: David Oaks and Others in the ‘Mad Pride’ Movement Believe Drugs Are Being Overused in Treating Mental Illness, and They Want the Abuse to Stop.
Source: Los Angeles Times Sunday Magazine
Standing on a concrete island in downtown San Francisco, 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?
In conversation, Oaks is earnestly persuasive. He 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.
At the American 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.”
Oaks 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.”
David Davis last wrote for the magazine about cowboy singer and actor Herb Jeffries.
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