Republic of Outsiders

The Power of Amateurs, Dreamers, and Rebels

Alissa Quart

• Publisher: The New Press
• Year: 2011
• Print ISBN: 9781620970294
• eBook ISBN: 9781595588944
• Topic: Social Sciences
• Subtopic: Social Aspects in Computer Science
• Index: Social Sciences

“Vivid portraits” of individuals and subcultures by a writer who “unmasks the assumptions we make about what counts as normal” (The New York Times).
 
They are outsiders who seek to redefine fields from mental health to diplomacy to music. They push boundaries and transform ideas. They include filmmakers crowdsourcing their work, transgender and autistic activists, and Occupy Wall Street’s “alternative bankers.” These people create and package themselves in a practice cultural critic Alissa Quart dubs “identity innovation.”
 
In this “fascinating” book, Quart introduces us to individuals who have created new structures to keep themselves sane, fulfilled, and, on occasion, paid. This deeply reported book shows how these groups now gather, organize, and create new communities and economies. Without a middleman, freed of established media, and highly mobile, unusual ideas and cultures are able to spread more quickly and find audiences and allies. Republic of Outsiders is a critical examination of those for whom being rebellious, marginal, or amateur is a source of strength (Barbara Ehrenreich).
 
“Even if you don’t consider yourself an outsider or a rebel, Quart’s book has several lessons for creative work, particularly when it comes to making art outside a heavily commercial system.” —Fast Company
 
“One of the smartest cultural interpreters of her generation. In Republic of Outsiders, she mixes sharp-eyed analysis with an empathetic heart. The result is a great read, and a brand-new lens through which to view outsiders, insiders—and ourselves.” —Susan Cain, author of Quiet: The Power of Introverts in a World That Can’t Stop Talking

PART ONE

OUTSIDER MENTALITY

1

BEYOND SANITY

I first met Sascha DuBrul when he was the only man in a little bookstore full of young feminists. He passed out postcards bearing the image of the Greek mythic hero Icarus. Within minutes of our meeting, unprompted, he showed me the tattoo on his back. I saw the image of a winged man, a black figure hovering over him. I didn’t know that when he started to speak to me, I’d be part of a world that would include schizophrenics, an ashram in the Bahamas, and long-distance phone calls. He wore a sparkly belt and had splotchy, ruddy skin on the sort of face people used to call “sensitive”: a scarred, pretty young man. His infrequently washed hair pointed in many different directions.

DuBrul’s postcards were advertisements for an online mental health support group called the Icarus Project. Founded in 2002, the project had a website that stressed alternative self-definitions for those labeled bipolar or schizophrenic and also stressed an educated skepticism about the mental health system. What made the group singular was that it was entirely peer-run by those whom others would call—or who would call themselves—either insane or mad.

DuBrul himself, a leader of Icarus, is bipolar. An early crisis came when the radio in his dorm room in Portland, Oregon, started talking to him—even though it was turned off. He eventually was flown back to New York by his mother and taken to the Bellevue Hospital emergency room and then the psych ward at a hospital in upstate New York. After leaving the psych ward, he floated around the country for several years, jumping trains, living on the street, working on a farm. Even after years of leading Icarus, DuBrul continued the uprooted, interrupted life of the intermittently institutionalized; at one point he wound up in the psych unit of the Los Angeles County Jail, where he conversed with lightbulbs. When he recovered, DuBrul became a farmer, working land near the San Francisco Bay Area. He wrote journals well and copiously in a spidery hand. Among his traveling companions during this time was a young manic-depressive friend who, he said, eventually killed herself. Afterward, he wondered: would his friend’s fate have been different had she had a group of peers who understood and supported her? In his mind, the answer was at least potentially yes—especially since “expertise” clearly had failed her. So DuBrul started Icarus with a friend, Jacks Ashley McNamara.

Icarus grew out of an anarchic Web culture in which labels and personal definitions of self were not immutable things, but, rather, changeable and elastic. Communities could come together quickly to help a member in need. The Icarus and Mad Priders’ position is that mental health disorders might not be wholly unwanted conditions that need to be eradicated with drugs. The Icarus Project prefers to call mental health conditions such as bipolar disorder “dangerous gifts” rather than illnesses. These groups defended the right of even those labeled very sick to choose not to take their meds if they felt those meds were doing nothing or harming them—or even if they were simply tired of taking them. Members of Icarus thus called themselves “pro-choice” about meds. While some Icaristas (as they refer to themselves) took their meds, others refused them. They asked: Do people with these mental conditions really need to see themselves through a label? Will a psychiatrist or a specialist really be more helpful to a lifelong “mad” person than a loyal group of friends who understand his or her experience?

Icarus members were renegades when it came to both self and language. Like many outsiders today, they were trying to create a new language with which to describe their minds. They challenged the entire rationale behind diagnosis itself: did such diagnoses help in the end or simply box people in with labels and mislabels? They represented one of the key "rebel rules": outsiders can change the language people use to describe them and thereby change the mainstream a little.

Icarus started as a kind of DIY service provider. Eventually fifteen thousand or so people joined Icarus online. The site recorded visits from twenty thousand unique IP addresses every month. Here the Web showed its power to offer, at least virtually, a novel kind of public space, where people with like mindsets or needs connected. The group developed chapters in New York, the Bay Area, and Portland; several chapters were established at colleges or universities as well. They used slogans such as “Friends Make the Best Medicine.” They questioned the definition of themselves as “diseased” to begin with. Mad Pride was sometimes the name they used for themselves, sometimes the slogan they rallied under.

To me, they were part of one of the more limit-testing rebel spheres out there: DIY mental health. In the same way musicians were firing their managers and filmmakers were distributing their films outside the multiplex, the Mad Priders were using the Web and banding together to help themselves, sometimes refusing medication and even psychotherapy. What they were doing resembled something more familiar, called intentional peer counseling, when amateurs and fellow sufferers counsel one another rather than simply being counseled or medicated by a psychiatrist or a doctor.

But Icarus and its brethren were going further than that. They were taking diagnosis and treatment away from the gatekeepers and taking it upon themselves to define their own madness. Even when members assented to expert diagnosis and treatment, they often reshaped its form or meaning for themselves.

At the end of one of our New York meetings, DuBrul opened a bottle of pills and tapped his daily dose of lithium carbonate onto his palm. “I don’t remember life without them,” he said with a shrug before swallowing the pills as we sat in a coffee shop in winter Manhattan. He reminded me of the people I had met and sometimes hung out with in New York City when I was a teenager and in my twenties. He had an unwavering gaze and an aggressive vulnerability, what Yeats called “passionate intensity,” as if he wanted to live in an urban treehouse or a squat with me as his favorite roommate, even though he had just met me.

“Meds allow me to lead a normal lifestyle—to stay up late, to travel. If I weren’t taking them, I’d have to take way better care of myself, and not eat sugar or drink,” said DuBrul. “What lithium does—check it out—it’s like having lead weights on my feet. The drug lets me fly as high as I want to without having to keep myself in check. I don’t take drugs because I think I am sick, but because I have superpowers I need to control.”

This claim was outsize, even grandiose. But it was part of how he, like so many of the rebels I met, revised his disability or outsider status into a kind of power. Help from insiders and experts was construed as necessary but irritating, a needed limit on their independent action and impulses. They permitted this kind of assistance because it helped them to be more efficient or simply survive, but they considered it an evil exigency.

In place of activist dogmatism, DuBrul emphasizes the Icarus Project’s focus on changing cultural perceptions and helping members change their perceptions of themselves. They took on the way that terms such as sick and healthy are used today. Even the word productive was challenged: he rejected, at least partially, the perceived need to become better, more pliant workers. He asked why anyone should get a prepackaged identity through mental health diagnoses.

Twenty years ago, another Mad Pride activist, Will Hall, got depressed. He went to a psychiatrist, who prescribed Prozac. He had a manic reaction, an occasional side effect of the drug, perhaps stemming from the fact that he’s bipolar—without mood stabilizers, Prozac has the potential to exacerbate mania. In his manic state, Hall lost his job at an environmental organization. He 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. He got so desperate that he went to a clinic for help; he was swiftly locked up. He said he was diagnosed as schizophrenic, hospitalized, and placed in restraints against his will. Then his health insurance ran out. A social worker came and arranged his discharge. He wound up in a homeless shelter and went from there to group homes and programs. He eventually recovered a little, enough to begin asking whether the treatment he’d received was the most useful to him and other people like him, people he had met in clinics and hospitals.

On the surface, this story is about the fall of a promising young man into pain and out of the ordinary world. But in truth, Will Hall’s history led him to become a renegade—and, in a way, to become truly himself. As soon as he was on his own, Hall began to imagine a different kind of treatment for people like him, people with extreme mental states and different ways of thinking. What if he had had someone like him counseling him at the hospital? What if he refused to see himself as a “broken invalid,” as he has written, fearing “what was inside me as signs of my ‘disorder’ ”? What if he refused to turn over authority of his mind and experience to doctors and therapists? He decided to throw himself into what is called “alternative mental health”: avoiding milk, caffeine, and sugar; embracing yoga and exercise; watching his sleep patterns.

Hall started to read books about mental health and get involved in the budding online mental health scene, where people who called themselves “patient-survivors” met and chatted about their experiences. He wanted to find groups, online or off-, run by people with, as he put it, “severe mental illness labels” themselves. But when he couldn’t find these communities outside the mental health system, Hall and a man named Oryx Cohen started their own such community, the Freedom Center, in 2001, with an Internet radio show and a weekly support group. He posted other people’s stories of their recoveries on the center’s website.

“We don’t want to be normal,” Hall proclaimed. Many say this, but Hall really meant it. Like DuBrul, he cut a striking figure: delicate and thin, with dark plum polish on his fingernails and black fashion sneakers on his feet, his mother’s Native American ancestry evident in his dark hair and eyes. He was unusually energetic, seemingly vibrating even when sitting still. He spoke in a precise, scholarly tone, although I could hear a bass line of anger in his voice as well. The medical establishment, he said, has for too long relied on medication and repression of behavior of those deemed “not normal.”

Throughout the 2000s, both Hall and DuBrul got better mentally, despite their schizoaffective and bipolar disorders. They led Icarus’s growing constellations: the online and IRL (“in real life”) meetings across the country, the other “mad people” they trained to help people like themselves avoid what they called forced drugging or hospitalization. Hall and DuBrul told people about prescription side effects and fought against what they called “drug overmedication.”

Getting better did not mean the end of their challenges. DuBrul still struggled with manic episodes, when he might wind up half dressed on a roof in the middle of the night. Hall still occasionally believed plants were communicating with him. He found an alternative way of interpreting such contact, one that created a normative context in which it was not labeled evidence of insanity. Hearing voices, according to his mother’s Native ancestors, was a sign not of madness but of an ability to communicate with the spirit world. He didn’t think of himself as being antidrug, but he disliked the effect drugs had on him: what they did to his head and his personality, how they made him feel soft and slushy.

DuBrul and Hall offer an inspiring but also, to some, challenging model, not just for the mad but also for many of those considered “well.” Some supposedly mentally healthy people take sleeping pills or go to couples therapy. Could they learn how to get to sleep without Ambien or take therapy into their own hands, talking with friends about the worst parts of their marriages? Should they? Although Mad Pride is not that widely known, the thinking behind it is increasingly part of a therapeutic counterculture: people who have gone off their psychoactive medications for garden-variety depression; those who remain wakeful but now lay off the sleeping pills, seeking to “go natural.”

In the hopes of impacting both the “well” and the mentally ill, Icarus posts videos of its meetings on Vimeo and elsewhere to show members and interested parties how they work. In one video, “Icarus Project Peer Support, Part I—Checkins,” a small group convenes in a book-lined room, and two co-leaders start off the discussion. The fact that two people share leadership suggests an effort to decenter the authority in the room, even as they explain the rules. One leader starts with the Meeting Agreements, ground rules for the discussion, “to make this a safer space for everyone and to make everyone feel a little more comfortable.”

“Conflict is OK,” says one leader. “It’s how we learn and grow.” Several of the rules acknowledge that there will be disagreement and divergent experience in the room and ask for attention and respect. The other leader encourages “ ‘I’ statements”—“I am hearing,” “I am feeling”—by which attendees can let others know they hear and are reacting to what others say. The rules aspire to a group that is conscientious, aware, and careful.

Neither leader presents herself as an expert or an unimpeachable authority. Both are clear that rules are rules, but that everyone in the room is equal and deserves equal airtime and respect. (One of the rules is that people who talk a lot will be asked to listen, and those who don’t talk much will be encouraged to speak.) The leaders are there to organize the discussion but not to establish hierarchies of knowledge or authenticity. Personal experience is what’s authentic. There will be no middleman, no relay of fiat from on high. In this small room, for this small group, the ideal is a level playing field.

One night I spent with the Icaristas was at a party hosted by a psychologist. It was for the publication of a book of photographs of (what else?) a famous mental institution. DuBrul was clearly a star. Thin, with a dusty backpack and a shambolic walk, he gave tremendous embraces; he had a hint of the guru about him. DuBrul was surrounded by young Icarus Project members and was deep in his punk rock alter ego, whom he called “Sascha Scatter.” At one point he spoke to the assembled shrinks, mentioning his own psychic struggles. He was applauded by these psychologists and analysts, who seemed eager to show their approval of patients as the prime movers in their own recovery.

PATIENTS LIKE ME

The diagnosis and prevalence of psychological disorders have increased dramatically in the past few decades: one in four American adults is said to have one, and the number of people taking medications for all of these newly diagnosed conditions has mushroomed. In 2011, the U.S. Centers for Disease Control studied the 2.7 billion drugs (this includes over-the-counter preparations and dietary supplements) that had been provided, prescribed, or continued during visits to doctors and hospitals in 2007.

Of those, 120.57 million were for antidepressants. Between 1995 and 2002, the use of antidepressants went up 48 percent. According to another statistic, between 1994 and 2003 the number of children and teenagers diagnosed as bipolar jumped fortyfold. From the mid-1990s through the late 2000s, the rate of antidepressant use went up 400 percent.

In such a social context, the Icarus Project railed against what it considered to be excessive medication and diagnosis. By constantly challenging authority on the basis (at least in part) of their superior knowledge of how they themselves have reacted to diagnosis and treatment, they were arrogating to themselves a kind of authority that competes wit...

Table of contents

• Cover
• Title Page
• Copyright
• Contents
• Introduction
• Part One: Outsider Mentality
• Part Two: After the Gatekeepers
• Part Three: The Center Cannot Hold
• Postscript
• Afterword
• Acknowledgments