Mad as hell
The Star, 10 March 2007
Angry activists say treatment for mental illness is too often
more about the pills than the person
Geoffrey Reaume was 21 when he headed for the Dominican Republic with a youth group and a secret.
It was the summer of 1983. For seven years, Reaume had been taking chlorpromazine, a drug prescribed to people diagnosed with schizophrenia. For seven years, he had also endured the drug's side effects.
"I was zonked out, tired all the time" he recalls. "People were always asking if I just got back from Florida because the skin on my face was all red."
Silenced by the stigma associated with any diagnosis of mental illness, Reaume, who now teaches at York University, couldn't bring himself to tell anyone what he was going through. "I was scared but I wanted to try to wean myself off the drug," he recalls.
Slowly but surely he succeeded. "When I came back and told my doctor, to his credit, he came round his desk and shook my hand."
Reaume's agonizingly solitary ordeal is typical of most of his generation facing a psychiatric diagnosis. But a new century has bred a group of young people openly supporting each other in a bid to consolidate their strengths.
They are determined to erase the stigma faced by those branded as mentally ill. And in much the same way as the gay movement gained empowerment by embracing the queer epithet, they are building a growing community and identity.
Psych rights. Nutters with attitude. Welcome to the madness, they say. Embrace it. Learn from it.
"I'm proud to identify myself as mad," says Jeremiah Bach, 25, a veteran member of the inter-university Mad Students Society and a community service worker with Sound Times, a Toronto-based group that helps people who use or have used the mental health system.
Like the movement itself, Sound Times embraces both those who count themselves as consumers of mental health services and psychiatric survivors, who believe the system does more harm than good.
"The queer identity is a good parallel," says Bach, who also is taking a post-graduate course in critical disabilities studies at York University.
"We're reclaiming an identity. It's empowering for a fragile community."
It's still not easy to be different. But more possibilities and opportunities are out there, starting with the most "Ivied" of the so-called Ivy Leagues. Consider:
- Reaume today teaches a post-graduate course in "Mad People's History" at York and is one of the organizers of the Psychiatric Survivor Archives of Toronto.
- Yale University researcher Charles Barber talks to medical schools across the U.S. about his own experiences with obsessive-compulsive disorder and the importance of peer support in his work in New York City homeless shelters.
- A proposed University of Toronto endowment will fund research into homelessness and anti-psychiatry, the belief that communities pulling together do far more good than drug companies and psychiatrists pushing electroshock and pills.
- In May, British Columbia will play host to a summit held by the International Network of Treatment Alternatives for Recovery, a group of world psychiatrists, people who have experienced psychiatric treatment and others.
- On campuses across the country, the Mad Students Society works to empower and mobilize, helping tear down barriers to education and offer a range of perspectives on life.
Bach was among the first to champion the proposed U of T scholarship for research into anti-psychiatry and solutions to homelessness.
It is the brainchild of Bonnie Burstow, a senior lecturer at U of T's Ontario Institute for Studies in Education. Burstow, who is still very much alive, has included the endowment in her will. It also stipulates that scholarship priority be given to students who identify as psychiatric survivors and/or those who have experienced repeated bouts of homelessness, too often a side effect of society's attitude to anyone who views the world from a dramatically different perspective from the mainstream.
"This is about empowerment," she says. "I've been involved all my life with disenfranchised communities. You get to your 60s and you start thinking: 'How do I do something that will continue to have meaning?'"
In a culture where universities are heavily endowed by big business, including pharmaceutical giants, the idea definitely has meaning for Bach and his peers.
Seven years ago, U of T and its affiliate the Centre for Addiction and Mental Health (CAMH) rescinded a high-profile job offer to a British psychiatrist after he gave a speech in Toronto warning that Prozac could increase the risk of suicide for some people. Prozac is manufactured by Eli Lilly, which provided funds to build a multi-million-dollar learning centre at CAMH.
After some very public legal wrangling, the psychiatrist, Cardiff University professor David Healy, and U of T buried the hatchet.
Healy, author of Let Them Eat Prozac, continues to question the mainstream in his books. "There's certainly plenty to research there," he emailed this week on learning of Burstow's anti-psychiatry scholarship plan. "In principle, I'm all in favour."
And Harvard-educated psychiatrist Peter Breggin, who also has broken with the majority of his peers by speaking out against drugs, calls the endowment "a significant step. Until now, psychiatry has been the only major discipline not subjected to serious scrutiny. It has been unwilling to accept criticism from within or without."
Ironically, news of Burstow's proposal comes as Eli Lilly has been in court in the U.S. defending itself against charges that it has spent 10 years knowingly playing down the health risks of Zyprexa, its latest best-selling medication for schizophrenia.
A series by New York Times reporter Alex Berenson says hundreds of internal documents show Lilly executives held back information about Zyprexa's links to obesity and its tendency to raise blood sugar, risk factors for diabetes.
Lilly has already agreed to pay more than $1 billion (U.S.) to settle suits by thousands of people who claimed they developed diabetes or other medical problems after taking Zyprexa. But the company also says the Times documents show "selective and distorted information" and adds it "looks forward" to telling "the complete story."
The story for clients taking Zyprexa or any other drug is between them and their doctor, says David Goldbloom, chief medical adviser at CAMH.
The relationship between psychiatrists and their clients should be a "collaborative discourse, a leveraging of the experience of physician and patient," he says. "For individuals, generalized statements and studies and percentages are not what's important. What's important is how they themselves feel."
Goldbloom says he's concerned about the amount of "unfiltered information" the public is exposed to through the Internet.
He points out that psychiatry is by no means the only medical field in which the public sometimes disagrees with prescribed treatments. And he takes exception to anti-psychiatry's approach.
"I'm not saying bad treatment doesn't happen but to say all treatments are toxic and all psychiatry abusive is unfair," he says.
Jim Gottstein, the Anchorage-based co-founder of the Law Project for Psychiatric Rights and one of the lawyers facing Eli Lilly in the Zyprexa case, calls Burstow's endowment for more study into the subject "terrific, ground-breaking.
"I'm not a fan of the term 'anti-psychiatry,'" Gottstein says.
"I prefer the term 'psych rights,' but I do think the public is realizing that the psychiatric establishment has not told the truth about drugs and mental illness.
"There's starting to be a lot of scientific evidence for what psychiatric survivors have been saying for years."
No one can deny the damage of the past, says Chris Summerville, interim chief of the Schizophrenia Society of Canada. "Today we know how harmful certain drugs and treatments were."
Summerville argues that newer medications "are helping people get better." But he also believes it is community and peer support that sustains recovery. "We've gone from the biomedical model to the bio-psychosocial-spiritual-recovery-empowerment model."
Meanwhile, Geoffrey Reaume takes heart from young people like Jeremiah Bach and the Mad Students Society.
"I wish they'd been there when I was going to school," he says. "It might have made things a lot easier."
What does madness feel like? Think 9/11
The Star, Mar 10, 2007
Two days after 9/11, Charles Barber made it back to the New York City men's shelter where he worked. "Manhattan was like a war zone," he recalled in a telephone interview this week. "There were sirens, hate graffiti, military helicopters overhead."
Barber, a Yale University researcher and writer who has battled his own obsessive compulsive disorder, expected the men at the shelter, many of whom had been diagnosed as psychotic, to be in a state of panic. Instead he found them calm.
"At first, it made me angry," he says. "Then, finally, I realized they were calm because they felt normal."
As he writes in his book Songs from the Black Chair: A Memoir of Mental Interiors: "I realized that, on that day only, the world's trauma matched their own. They live out the violence and despair and bloodiness and trauma of 9/11 every day, and it was an enormous relief that for one or two days the world experienced that same level of trauma. They weren't alone anymore, and they felt good and ... normal. For once, everybody else felt like them."
Barber is in the forefront of those seeking the route from homelessness and desperation to hope. It's one of the reasons he's glad to hear Toronto lecturer Bonnie Burstow plans to endow a University of Toronto scholarship to research the subject.
Burstow's scholarship endowment, for the study of anti-psychiatry and activism on homelessness, stipulates that priority be given to students who identify as psychiatric survivors and/or those who have experienced repeated bouts of homelessness.
Barber calls the idea "remarkable. I doubt it would happen at a major American university," he says.
Supportive housing and community programs co-managed by their peers are key to helping marginalized populations, he argues.
"The typical medical mode is treatment with drugs, then community engagement and support programs. The community engagement should come first."
A University of Pennsylvania study of supportive programs in New York shows they save money, Barber says. And a peer advisory program in Georgia has been adopted by four other states.
But success depends on very careful planning. "It's difficult, very complicated and it has to be well managed," Barber says.
Barber's next book, tentatively titled Zoloft At The Super Bowl, will look at the pervasiveness of psychiatric medications and their impact on society.
In sessions with medical students and doctors, Barber says he tries to demonstrate the importance of listening. "I tell them to pay attention to the stories."
Being open to alternative solutions is also key, he says. If someone diagnosed with schizophrenia will speak to no one but a maintenance worker at a shelter, "I tell them that's the guy who should help work out a housing plan," he says.