Today’s Sunday _New York Times_, 11 May 2008, has a “fashion” article
*below* about the MAD PRIDE MOVEMENT, MindFreedom International,
sponsor groups Bonkersfest, Icarus & Freedom Center, psychiatric
survivors, and activism to change the mental health system!
or use this link: http://tinyurl.com/64k3qd
*BELOW* is the text — please forward this news to all appropriate
places on and off the Internet, now!
NEW YORK TIMES – May 11, 2008
Fashion & Style Section
“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
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
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
Ms. Spikol writes about her experiences with bipolar disorder in The
Philadelphia Weekly, and posts videos on her blog, the Trouble With
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
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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MORE MAD PRIDE NEWS — All The Fits That’s News to Print!
Check out some of the Mad Pride 2008 events:
Updates and links about Mad Pride:
MindFreedom co-sponsors Mad Pride celebration of United Nations
historic disability treaty!
or here: http://tinyurl.com/5s5j3k
For other international events about changing mental health system see:
“Double your money” for new members of MindFreedom International:
Helios Foundation has a matching grant for new members of
MindFreedom, for a limited time only.
Click on the MindFreedom link here:
MindFreedom calls May “Nonviolent Revolution in Mental Health Month.”
MindFreedom Journal #48 is out & mailed with campaign news.
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