Why some mentally ill patients are rejecting their medication and making
the case for 'mad pride.'
We don't want to be normal,"
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
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
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? Jonathan 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
Scholars like Peter 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.