New York Times on Mad Pride, MindFreedom, Mental Health Activism

Sun May 11 00:38:47 PDT 2008

    NEW YORK TIMES: MAD PRIDE IN FASHION!

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!

http://www.mindfreedom.org/campaign/media/mf/new-york-times-mad-pride

or use this link: http://tinyurl.com/64k3qd

NY Times: http://www.nytimes.com/2008/05/11/fashion/11madpride.html

*BELOW* is the text -- please forward this news to all appropriate  
places on and off the Internet, now!

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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  
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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~~~~~~~~~~~~~~~~~

ACTION ACTION ACTION: Please forward to all appropriate places on &  
off Internet, NOW! Mad pride!

~~~~~~~~~~~~~~~~~

MORE MAD PRIDE NEWS -- All The Fits That's News to Print!

Check out some of the Mad Pride 2008 events:

http://www.mindfreedom.org/campaign/madpride/mad-pride-2008-events

Updates and links about Mad Pride:

http://www.mindfreedom.org/campaign/madpride

MindFreedom co-sponsors Mad Pride celebration of United Nations  
historic disability treaty!

http://www.mindfreedom.org/campaign/global/disability-convention

or here: http://tinyurl.com/5s5j3k

For other international events about changing mental health system see:

http://www.mindfreedom.org/events_sf

~~~~~~~~~~~~~~~~~

"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:

http://www.heliosnetwork.org/grantinfo.htm

~~~~~~~~~~~~~~~~~

MindFreedom calls May "Nonviolent Revolution in Mental Health Month."

MindFreedom Journal #48 is out & mailed with campaign news.

http://www.mindfreedom.org/campaign/media/mf-journal/mfj48

~~~~~~~~~~~~~~~~~

All New Mad Market Launches!

http://www.mindfreedom.org/kb/resources/new-madmarket

To go directly to the all-new Mad Market, click here:

http://www.madmarket.org

~~~~~~~~~~~~~~~~~

Lots more Mad Pride news:

http://www.mindfreedom.org

Don't see a news item? Submit it to news at mindfreedom.org

~~~~~~~~~~~~~~~

Build united strength in numbers!

JOIN OR RENEW EARLY IN MINDFREEDOM INTERNATIONAL!

Now is the time!

http://www.mindfreedom.org/join-donate

* Win human rights campaigns in mental health.

* End abuse by the psychiatric drug industry.

* Support self-determination of psychiatric survivors.

* Promote safe, humane, effective options in mental health.

* Show your MAD PRIDE!

MindFreedom is a nonprofit human rights group that unites 100 sponsor  
and affiliate groups with individual members.

MindFreedom is one of the very few totally independent activist  
groups in the mental health field with no funding from governments,  
drug companies, religions, corporations, or the mental health system.

All human rights supporters are invited to join MFI by donating here:

http://www.mindfreedom.org/join-donate

For hard-to-find books and gear go to MFI's ALL-NEW Mad Market here:

http://www.madmarket.org

MindFreedom International Office:

454 Willamette, Suite 216 - POB 11284; Eugene, OR 97440-3484 USA

web site: http://www.mindfreedom.org
e-mail: office(at)mindfreedom(dot)org
MFI office phone: (541) 345-9106
MFI member services toll free: 1-877-MAD-PRIDe or 1-877-623-7743 fax:  
(541) 345-3737

Please forward!

~~~~~~~~~~~~~~~~~

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