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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