Friday, May 16, 2008

NYT: They're mad, and proud of it

from the New York Times:

By Gabrielle Glaser, New York Times
Published Thursday, May 15, 2008 4:35 PM

In the YouTube video, Liz Spikol is smiling and animated, the light glinting off her large hoop earrings. Deadpan, she holds up a diaper 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, Spikol, 39, a 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 and force-fed medications.

Like many Americans who have severe forms of mental illness such as schizophrenia and bipolar disorder, Saks and Spikol are speaking publicly about their demons. Their frank talk is part of a
conversation about mental illness 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 one of a group of mood disorders, 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 movement 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 in at least seven countries including the United States, draw thousands of participants, said David W. Oaks, director of MindFreedom International, a nonprofit group in Eugene, Ore., which tracks the events and says it has 10,000 members.

Recent 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.

Members of the mad pride movement do not always agree on their aims. For some, the objective is to destigmatize 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 say they are publicly discussing their struggles to help those with similar conditions and to inform the 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. We are hoping to change all that by talking."

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