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New York Times

May 11, 2008

‘Mad Pride’ Fights a Stigma

By GABRIELLE GLASER

IN the YouTube video, Liz Spikol is smiling and animated, the light glinting off her large hoop earrings. Deadpan, she holds up a diaper. It is not, she explains, a hygienic item for a giantess, but rather a prop to illustrate how much control people lose when they undergo electroconvulsive therapy, or ECT, as she did 12 years ago.

In other videos and blog postings, Ms. Spikol, a 39-year-old writer in Philadelphia who has bipolar disorder, describes a period of psychosis so severe she jumped out of her mother’s car and ran away like a scared dog.

In lectures across the country, Elyn Saks, a law professor and associate dean at the University of Southern California, recounts the florid visions she has experienced during her lifelong battle with schizophrenia — dancing ashtrays, houses that spoke to her — and hospitalizations where she was strapped down with leather restraints and force-fed medications.

Like many Americans who have severe forms of mental illness such as schizophrenia and bipolar disorder, Ms. Saks and Ms. Spikol are speaking candidly and publicly about their demons. Their frank talk is part of a conversation about mental illness (or as some prefer to put it, “extreme mental states”) that stretches from college campuses to community health centers, from YouTube to online forums.

“Until now, the acceptance of mental illness has pretty much stopped at depression,” said Charles Barber, a lecturer in psychiatry at the Yale School of Medicine. “But a newer generation, fueled by the Internet and other sophisticated delivery systems, is saying, ‘We deserve to be heard, too.’ ”

About 5.7 million Americans over 18 have bipolar disorder, which is classified as a mood disorder, according to the National Institute of Mental Health. Another 2.4 million have schizophrenia, which is considered a thought disorder. The small slice of this disparate population who have chosen to share their experiences with the public liken their efforts to those of the gay-rights and similar movements of a generation ago.

Just as gay-rights activists reclaimed the word queer as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives.

Mad pride events, organized by loosely connected groups in at least seven countries including Australia, South Africa and the United States, draw thousands of participants, said David W. Oaks, the director of MindFreedom International, a nonprofit group in Eugene, Ore., that tracks the events and says it has 10,000 members.

RECENT mad pride activities include a Mad Pride Cabaret in Vancouver, British Columbia; a Mad Pride March in Accra, Ghana; and a Bonkersfest in London that drew 3,000 participants. (A follow-up Bonkersfest is planned next month at the site of the original Bedlam asylum.)

Members of the mad pride movement do not always agree on their aims and intentions. For some, the objective is to continue the destigmatization of mental illness. A vocal, controversial wing rejects the need to treat mental afflictions with psychotropic drugs and seeks alternatives to the shifting, often inconsistent care offered by the medical establishment. Many members of the movement say they are publicly discussing their own struggles to help those with similar conditions and to inform the general public.

“It used to be you were labeled with your diagnosis and that was it; you were marginalized,” said Molly Sprengelmeyer, an organizer for the Asheville Radical Mental Health Collective, a mad pride group in North Carolina. “If people found out, it was a death sentence, professionally and socially.”

She added, “We are hoping to change all that by talking.”

The confessional mood encouraged by memoirs and blogs, as well as the self-help advocacy movement in mental health, have deepened the understanding of bipolar disorder and schizophrenia. Books such as Kay Redfield Jamison’s autobiography, “An Unquiet Mind: A Memoir of Moods and Madness,” have raised awareness of bipolar disorder, and movies like “Shine” and “A Beautiful Mind” have opened discussion on schizophrenia and related illnesses. In recent years, groups have started antistigma campaigns, and even the federal government embraces the message, with an ad campaign aimed at young adults to encourage them to support friends with mental illness.

Members of MindFreedom International, which Mr. Oaks founded in the 1980s, have protested drug companies and participated in hunger strikes to demand proof that drugs can manage chemical imbalances in the brain. Mr. Oaks, who was found to be schizophrenic and manic-depressive while an undergraduate at Harvard, says he maintains his mental health with exercise, diet, peer counseling and wilderness trips — strategies that are well outside the mainstream thinking of psychiatrists and many patients.

Other support groups include the Mad Tea Party in Chicago and the Freedom Center in Northampton, Mass., which provides education, acupuncture, yoga and peer discussions to about 100 participants.

The Icarus Project, a New York-based online forum and support network, says it attracts 5,000 unique visitors a month to its Web site, and it has inspired autonomous local chapters in Portland, Ore., St. Louis and Richmond, Va. Participants write and distribute publications, stage community talks, trade strategies for staying well and often share duties like cooking or shopping.

The Icarus Project says its participants are “navigating the space between brilliance and madness.” It began six years ago, after one of its founders, Sascha Altman DuBrul, now 33, wrote about his bipolar disorder in The San Francisco Bay Guardian, a weekly newspaper. Mr. DuBrul, who is known as Sascha Scatter, received an overwhelming response from readers who had experienced similar ordeals, but who felt they had no one to discuss them with.

“We wanted to create a new language that resonated with our actual experiences,” Mr. DuBrul said in a telephone interview.

Some Icarus Project members argue that their conditions are not illnesses, but rather, “dangerous gifts” that require attention, care and vigilance to contain. “I take drugs to control my superpowers,” Mr. DuBrul said.

While psychiatrists generally support the mad pride movement’s desire to speak openly, some have cautioned that a “pro choice” attitude toward medicine can have dire consequences.

“Would you be pro-choice with someone who has another brain disease, Alzheimer’s, who wants to walk outside in the snow without their shoes and socks?” said Dr. E. Fuller Torrey, executive director of the Stanley Medical Research Institute in Chevy Chase, Md.

Dr. Torrey, a research psychiatrist who specializes in schizophrenia and manic depression, said he understood the roots of the movement. “I suspect that not an insignificant number of people involved have had very lousy care and are still reacting to having been involuntarily treated,” he said.

Many psychiatrists now recognize that patients’ candid discussions of their experiences can help their recoveries. “Problems are created when people don’t talk to each other,” said Dr. Robert W. Buchanan, the chief of the Outpatient Research Program at the Maryland Psychiatric Research Center. “It’s critical to have an open conversation.”

Ms. Spikol writes about her experiences with bipolar disorder in The Philadelphia Weekly, and posts videos on her blog, the Trouble With Spikol (http://trouble.philadelphiaweekly.com).

Thousands have watched her joke about her weight gain and loss of libido, and her giggle-punctuated portrayal of ECT. But another video shows her face pale and her eyes red-rimmed as she reflects on the dark period in which she couldn’t care for herself, or even shower. “I knew I was crazy but also sane enough to know that I couldn’t make myself sane,” she says in the video.

IN a telephone interview, she described one medication that made her salivate so profusely she needed towels to mop it up. “Of course it’s heartbreaking if you let it be,” she said. “But it’s also inherently funny. I’d sit there watching TV and drool so much, it would drip on the couch.”

Ms. Spikol said she has a kind doctor who treats her with respect, and she takes her pharmaceutical drugs to stabilize her mood. “I have asthma, and I use medications to maintain it, too,” she said.

Ms. Saks, the U.S.C. professor, who recently published a memoir, “The Center Cannot Hold: My Journey Through Madness,” has come to accept her illness. She manages her symptoms with a regimen that includes psychoanalysis and medication. But stigma, she said, is never far away.

She said she waited until she had tenure at U.S.C. before going public with her experience. When she was hospitalized for cancer some years ago, she was lavished with flowers. During periods of mental illness, though, only good friends have reached out to her.

Ms. Saks said she hopes to help others in her position, find tolerance, especially those with fewer resources. “I have the kind of life that anybody, mentally ill or not, would want: a good place to live, nice friends, loved ones,” she said.

“For an unlucky person,” Ms. Saks said, “I’m very lucky.”

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Copyright 2008 The New York Times Company

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