Listening to Madness

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http://www.newsweek.com/id/195694

Listening to Madness

Why some mentally ill patients are rejecting their medication and making the

case for 'mad pride.'

By Alissa Quart | NEWSWEEK

Published May 2, 2009

From the magazine issue dated May 18, 2009

We don't want to be normal, " Will Hall tells me. The 43-year-old has been

diagnosed as schizophrenic, and doctors have prescribed antipsychotic medication

for him. But Hall would rather value his mentally extreme states than try to

suppress them, so he doesn't take his meds. Instead, he practices yoga and

avoids coffee and sugar. He is delicate and thin, with dark plum polish on his

fingernails and black fashion sneakers on his feet, his half Native American

ancestry evident in his dark hair and dark eyes. Cultivated and charismatic, he

is also unusually energetic, so much so that he seems to be vibrating even when

sitting still.

I met Hall one night at the offices of the Icarus Project in Manhattan. He

became a leader of the group—a " mad pride " collective—in 2005 as a way to

promote the idea that mental-health diagnoses like bipolar disorder are

" dangerous gifts " rather than illnesses. While we talked, members of the

group—Icaristas, as they call themselves—scurried around in the purple-painted

office, collating mad-pride fliers. Hall explained how the medical establishment

has for too long relied heavily on medication and repression of behavior of

those deemed " not normal. " Icarus and groups like it are challenging the science

that psychiatry says is on its side. Hall believes that psychiatrists are prone

to making arbitrary distinctions between " crazy " and " healthy, " and to using

medication as tranquilizers.

" For most people, it used to be, 'Mental illness is a disease—here is a pill you

take for it', " says Hall. " Now that's breaking down. " Indeed, Hall came of age

in the era of the book " Listening to Prozac. " He initially took Prozac after it

was prescribed to him for depression in 1990. But he was not simply depressed,

and he soon had a manic reaction to Prozac, a not uncommon side effect. In his

frenetic state, Hall went on to lose a job at an environmental organization. He

soon descended into poverty and started to hear furious voices in his head; he

walked the streets of San Francisco night after night, but the voices never

quieted. Eventually, he went to a mental-health clinic and was swiftly locked

up. Soon after, he was diagnosed with schizophrenia. He was put in restraints

and hospitalized against his will, he says. For the next year, he bounced in and

out of a public psychiatric hospital that he likens to a prison. The humiliation

and what he experienced as the failure of the medication were what turned him

against traditional treatment. Since then, Hall has been asking whether his

treatment was really necessary. He felt sloshily medicated, as if he couldn't

really live his life.

Hall and Icarus are not alone in asking these questions. They are part of a new

generation of activists trying to change the treatment and stigma attached to

mental illness. Welcome to Mad Pride, a budding grassroots movement, where

people who have been defined as mentally ill reframe their conditions and

celebrate unusual (some call them " spectacular " ) ways of processing information

and emotion.

Just as some deaf activists prefer to embrace their inability to hear rather

than " cure " it with cochlear implants, members of Icarus reject the notion that

the things that are called mental illness are simply something to be rid of.

Icarus members cast themselves as a dam in the cascade of new diagnoses like

bipolar and ADHD. The group, which now has a membership of 8,000 people across

the U.S., argues that mental-health conditions can be made into " something

beautiful. " They mean that one can transform what are often considered simply

horrible diseases into an ecstatic, creative, productive or broadly " spiritual "

condition. As Hall puts it, he hopes Icarus will " push the emergence of mental

diversity. "

Embracing " mental diversity " is one thing, but questioning the need for

medication in today's pill-popping world is controversial—and there have been

instances in which those who experience mental extremes harm themselves or

others. Icaristas argue that some of the severely mentally ill may avoid taking

medication, because for some the drugs don't seem to help, yet produce difficult

side effects. And while some side effects like cognitive impairment are surely

debilitating, others are more subtle, such as the vague feeling that people are

not themselves. Icaristas call themselves " pro-choice " about meds—some do take

their drugs, but others refuse.

Mad pride has its roots in the mad-liberation movement of the 1960s and '70s,

when maverick psychiatrists started questioning the boundaries between sane and

insane, and patients began to resist psychiatric care that they considered

coercive. But today the emphasis is on support groups, alternative health and

reconsidering diagnostic labeling that can still doom patients to a lifetime of

battling stigma. Icarus also frames its mission as a somewhat literary

one—helping " to navigate the space between brilliance and madness. " Even the

name Icarus, with its origin in the Greek myth of a boy who flew to great

heights (brilliance) but then came too close to the sun (madness) and hurtled to

his death, has a literary cast.

Although Icarus and Hall focus on those diagnosed as mentally ill, their work

has much broader implications. Talking to Hall, I was acutely aware just how

much their stance reflects on the rest of us—the " normal " minds that can't read

through a book undistracted, the lightly depressed people, the everyday drunks

who tend toward volatility, the people who " just " have trouble making eye

contact, those ordinary Americans who memorize every possible detail about

Angelina Jolie.

After all, aren't we all more odd than we are normal? And aren't so many of us

one bad experience away from a mental-health diagnosis that could potentially

limit us? Aren't " normal " minds now struggling with questions of competence,

consistency or sincerity? Icarus is likewise asking why we are so keen to

correct every little deficit—it argues that we instead need to embrace the range

of human existence.

While some critics might view Icaristas as irresponsible, their skepticism about

drugs isn't entirely unfounded. Lately, a number of antipsychotic drugs have

been found to cause some troubling side effects.

There are, of course, questions as to whether mad pride and Icarus have gone too

far. While to his knowledge no members have gravely harmed themselves (or

others), Hall acknowledges that not everyone can handle the Icarus approach.

" People can go too fast and get too excited about not using medication, and we

warn people against throwing their meds away, being too ambitious and doing it

alone, " he says.

But is this stance the answer? Stanley, a director of the Treatment

Advocacy Center, a nonprofit working to provide treatment for the mentally ill,

is somewhat critical. Stanley, who suffers from bipolar illness with psychotic

features, argues that medication is indispensable for people with bipolar

disease or with schizophrenia. Stanley's group also supports mandatory

hospitalization for some people suffering severe mental illness—a practice that

Icarus calls " forced treatment. "

Scholars like Kramer, author of " Listening to Prozac " and " Against

Depression, " also take a darker view of mental extremes. " Psychotic depression

is a disease, " Kramer says. As the intellectual who helped to popularize the

widespread use of antidepressants, Kramer is nonetheless enthusiastic about

Icarus as a community for mad pride. Yet he still argues that mental-health

diagnoses are very significant. " In an ideal world, you'd want good peer support

like Icarus—for people to speak up for what's right for them and have access to

resources—and also medication and deep-brain stimulation, " he says.

For his part, Hall remains articulate, impassioned and unmedicated. He lives

independently, in an apartment with a roommate in Oregon, where he is getting a

master's in psychology at a psychoanalytic institute. He maintains a large

number of friendships, although his relationships, he says, are rather

tumultuous.

Nevertheless, it's not so easy. Hall periodically descends into dreadful mental

states. He considers harming himself or develops paranoid fantasies about his

colleagues and neighbors. Occasionally, he thinks that plants are communicating

with him. (Though in his mother's Native American culture, he points out, this

would be valued as an ability to communicate with the spirit world.)

On another night, I had dinner with eight Icarus members at a Thai restaurant in

midtown Manhattan. Over Singha beer, they joked about an imaginary psychoactive

medication called Sustain, meant to cure " activist burnout. " It was hard to

imagine at the dinner what Hall had suffered. While he and his " mad " allies were

still clearly outsiders, they had taken their suffering and created from it an

all-too-rare thing: a community.

© 2009