The Radical Movement Redefining Schizophrenia

People with unquiet minds are locked up, medicated, and stigmatized. Now an international support network is telling them they might not be sick at all.

Photography by Hannah Whitaker

One afternoon about seven years ago, Marty Hadge tentatively stepped outside a two-family, white-shingled house in the former mill town of Holyoke, Massachusetts. Hadge, who was pushing 50, lived in one of the units, alone. He wore 280 pounds on his 5-foot-2 frame, a side effect of consuming antipsychotic medication for several decades. His skin was marred by a haphazard array of tattoos and scars from hundreds of small cuts he’d inflicted on himself. Going out in public wasn’t easy for Hadge, but he was desperate to save his own life.

He didn’t have a car and was afraid of taking the bus, so Hadge set out on foot, walking down roads dotted with hand-painted Pentecostal church façades, liquor stores, and auto-body repair shops. Mountains and the smoke-stacked ruins of brick factories sat in the distance. At the end of his mile-and-a-half journey into downtown Holyoke was a cozy room at the Western Mass Recovery Learning Community (RLC), which offers assistance to individuals overcoming trauma, addiction, and other challenges. Bookshelves were cluttered with self-help books, plants, an old boombox, and a clock in the shape of a sun. About eight people, all part of a support group, sat on worn couches and recliners arranged in a loose circle. Hadge was nervous. He took a seat in a stuffed rocking chair set apart in a corner.

What came next, he hoped, would help him silence the urgent voices in his head that had repeated the same cruel refrain for going on 40 years: Kill yourself.

Hadge started hearing voices when he was a small child. Born in West Roxbury, a suburban neighborhood in southwest Boston, his mother was an alcoholic who beat him. A neighbor sexually abused him. When he was 4 or 5, Hadge remembers having a waking vision of four “dark ghosts” on the stairs leading up to the neighbor’s apartment, an omen that he would die if he returned there.

As a preteen, other voices began calling to him. Sometimes, they told him he had to commit suicide or murder his mother. “They said I had to make a choice, that the both of us could not live together,” Hadge recalls. “They could go from being a whisper to yelling so loud it was hard to think.” Once, when he was about 12, his mother hit him with a cast-iron pan. Schooled in Bible verses about honoring thy parents, Hadge had never fought off the beatings. That day, though, a voice urged him to retaliate.

You have to do this, do this right now! it shouted.

When his mother struck him a second time, he hit her back.

In his 20s, while working as a janitor and selling drugs to scrape together college tuition, Hadge self-medicated with alcohol and heroin to drown out the voices. Over the years, he spent time in nearly every hospital in western Massachusetts, from Springfield to Deerfield to the Berkshires. He was told at different times that he had bipolar disorder, borderline personality disorder, major depressive disorder, trauma, and schizophrenia. Hadge didn’t put much stock in the diagnoses because they kept changing.

He was prescribed numerous drugs, including Haldol, Thorazine, Lithium, Effexor, and Lamictal. “I was drugged to where I couldn’t get off the couch, but I still heard voices,” Hadge says. Some meds damaged his neurological system; his face would freeze in strange expressions, he struggled to read and to remember thoughts, and he sometimes shook so hard that he fell down. Periodically, he stopped taking his pills “to feel alive for a little while.” He would end up in a locked hospital room, naked, not knowing where he was.

Things got so bad that, when he was 41, Hadge’s college-aged daughter from a long-gone romantic relationship declared herself his caretaker to prevent him from being committed to a psychiatric facility. A caseworker from social services regularly visited the house in Holyoke, which Hadge’s daughter owned, and was happy as long as the patient took his pills. Hadge, though, was too bleary to function outside the walls of his home. And the voices were still there, telling him, You’re too screwed up to fix.

With nowhere else to turn, Hadge Googled “peer support and mental health” one day, hoping to find a program like Alcoholics Anonymous, which had helped him quit heroin. He discovered that RLC hosted one that promised “a non-pathologizing, open way of understanding and supporting people through the experience of hearing voices.” The support group was part of the Hearing Voices Network (HVN), a two-decade-old international health and social justice crusade.

So Hadge found himself sitting anxiously in the rocking chair at RLC. From his many encounters with doctors, he had learned that if you talked about voices, you got in trouble: locked up for longer periods or given more medication. But he observed as Gail Hornstein, a professor of psychology at Mount Holyoke College who led the HVN session, encouraged people to identify their voices, listen to them, even answer them. If music came on in another room, someone might pipe up, “Is everyone hearing that music playing? Do we have consensus reality on that?”

To his astonishment, Hadge realized that the gathering took one thing for granted: Everyone’s voices were real. The goal was not to get rid of them — it was to engage them. The ethos was nothing short of radical.

Even though no one took notes, monitored attendance, or would report what was said to outsiders, Hadge was too scared to speak. He returned the following week and kept coming back for six months, fascinated but never saying a word. A turning point finally came when Hornstein posed a question: “If you were walking down the street and someone was following you, wouldn’t you stop and ask them, ‘What do you want?’”

Voices had berated and intimidated Hadge for most of his life. Now, for the first time, he started asking them why.

The concept of madness has existed for thousands of years, but the diagnosis of schizophrenia, derived from the ancient Greek words for “split mind,” was coined only in the early 1900s. It was based on patients’ inability to distinguish what was real from what was not. Symptoms included delusions, hallucinations, and hearing voices. When Sigmund Freud’s theories dominated the psychiatric field, schizophrenia was believed to be the result of emotional issues, in particular the effects of having a withholding or cold mother. Later in the 20th century, professional opinion swung toward the belief that schizophrenia is a disease of the brain; that model was reflected in the Diagnostic and Statistical Manual of Mental Disorders (DSM).

There is no definitive test for schizophrenia. Diagnosis is based solely on observations of symptoms. In 2013, Thomas Insel, then-director of the U.S. National Institute of Mental Health, wrote on the agency’s website, “In the rest of medicine, this would be equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever.” For some experts, the fact that the most damning of psychiatric labels — made more so by cultural depictions of schizophrenics as incurable, violent lunatics — is based on imprecise criteria signals, at the very least, the need to name it something that more accurately captures its multifaceted nature. (Japan officially renamed schizophrenia “integration disorder” in 2005.)

Research now points to both biomedical and environmental causes of schizophrenia. A growing body of studies shows a strong genetic component — it tends to run in families — and an association with abnormalities in brain structure. The U.S. Centers for Disease Control and Prevention’s Adverse Childhood Experiences Study, one of the largest research projects about the lingering effects of early-life trauma, found that the death of a first-degree relative in childhood resulted in a 39 percent greater chance of being diagnosed with schizophrenia as an adult. Other studies have found higher rates of the disorder, believed to afflict between 0.5 and 4 percent of people worldwide, in urban areas and among poor and minority populations.

What nearly everyone who studies schizophrenia agrees on is that the diagnosis often has an abysmal impact on people’s lives. In the United States, people identified as schizophrenic are incarcerated at very high rates; compared with the general population, the percentage of individuals with serious mental illness is four to six times larger in jails and three to four times larger in prisons. Mortality also takes a blow. Some studies show that a schizophrenia diagnosis can take 25 to 30 years off a life, through suicide, an accident, or lack of access to medical care.

Outcomes may vary across borders and cultures. Research from the World Health Organization published over the last 30 years has found that people in some parts of the developing world with schizophrenia have better outcomes than those in developed countries; for instance, they are nearly six times more likely to be able to work. There are a number of hypotheses as to why, including that the nature of life in poor contexts — less regimented and more community oriented — makes it easier for people with schizophrenia to get by. And some experts say the answer may be non-Western cultures’ tendency not to frame psychosis as a dreaded, permanent disease.

As an anthropologist at the University of Puget Sound, Juli McGruder spent several years in Zanzibar. She found that anyone who violated social norms — from speaking out of turn to hallucinating — was seen as possessed by a spirit. People who would be diagnosed with schizophrenia in the West, then, were not seen as sick; they were under attack by outside forces. Rather than stigmatizing them, their communities offered support and ministrations.

Research by Stanford University anthropology professor Tanya Luhrmann points in a similar direction. She and colleagues interviewed voice-hearers in the United States, India, and West Africa. Americans were more likely to hear voices that threatened and belittled, while some foreign subjects heard family members, friends, or deities and engaged in “back-and-forth relationship[s] with the voices.” Luhrmann argues, “I think the consequence of the American idea that the mind is broken is so horrifying and upsetting for people that they feel assaulted by these voices.”

The insight that how people interact with voices might affect what they hear overlaps with HVN’s central tenet: Hearing voices is only a problem if it causes a person distress.

HVN began in the Netherlands in 1987 as a collaboration between Dutch psychiatrist Marius Romme and a patient named Patsy Hage, who had taken medication but still heard voices. She asked Romme why, if people believed in a god they never saw, they so quickly dismissed the notion that what she heard was real. Romme was intrigued.

Through a television call-in program, Romme invited people to share their experiences with voice-hearing. Hundreds responded, and a significant proportion claimed they were untroubled by their voices and had never been treated by psychiatric professionals. In 1988, Romme organized a conference on voice-hearing in Maastricht. Two years later, the first peer-support groups started gathering. They rejected clinical terms like “schizophrenia” and “auditory hallucinations” and considered voices part of some people’s natural life experiences, potentially even vehicles for personal growth. All major religions have a story of a heroic voice-hearer, proponents like to point out, from Joan of Arc to the Prophet Mohammed.

Today, HVN groups exist in about 30 countries, from Europe to Australia to East Asia. The network holds a global conference each year; it will gather in Boston this August. In England, there are more than 180 groups, including one in most prisons in London. In the United States, where the movement is still finding its footing, there are some 85 chapters. A few years ago, the Connecticut Department of Mental Health & Addiction Services helped establish groups in the state. In 2015, the Foundation for Excellence in Mental Health Care (Excellence for short) began a three-year project to expand the network’s national reach by training 100 group facilitators. Hornstein, of Mount Holyoke College, is working on the Excellence initiative and notes that demand for HVN chapters far exceeds the money available. “If we had enough…we could be doing a training every day of the week for many years to come,” she says.

There is no formal structure or leadership to HVN. Although founders are encouraged to participate in network-approved trainings, anyone can start a group based on a set of basic principles: During meetings, there should be no assumption that attendees are “sick,” and members, who are treated as experts in their own experiences, should make decisions together. Collectively, the network sees itself as nothing short of a human rights campaign in defense of a marginalized group.

Hornstein cites a historical comparison to illustrate the big picture: Homosexuality was listed as a psychiatric disorder in the DSM until 1973. Today, gay people are a protected class of citizens. By removing homosexuality from the DSM, Hornstein says, “Psychiatrists were admitting that the problems gay people faced weren’t necessarily the result of some intrinsic pathology, but reflected the homophobic assumptions of society and long-standing medical models.”

Marty Hadge spent decades trying to ignore his voices. Now, though, he listens and attempts to compromise with them. If one shouts, Throw that chair across the room! he will gently tip it over instead to see if that’s enough to appease the voice.

Such are the strategies that several years of HVN meetings have given him. Over his time with the group, Hadge has realized that, when he was a child, some of his voices were actually helpful companions — the voice that told him to hit his mother, for example. Some voices, Hadge adds, “were expressing feelings that there was no space for me to express.”

Hadge has come to believe that most of his voices are related to trauma or are spiritual in nature — “of a higher power.” They come to him when he’s having trouble recognizing his feelings or when an environmental trigger reminds him of some unresolved emotional issue from his past. “The warning type,” like the dark angels on the stairs or the ones that tell him to kill himself, “almost never get big any longer,” he explains. As soon as he hears them, he uses HVN guidance to respond. For the most part, his voices have become reassuring, “like hearing or seeing friends or…things that are comforting.”

After years of profound isolation, HVN has also given Hadge a social group. “I learned how to have a conversation again, how to interact with people, build myself up,” he explains. Hadge weaned himself off all medication. His psychiatrist said he had to stop taking Haldol, because it can inflict brain damage over the long term; his daughter was nervous about him going cold turkey but supported a gradual process. After kicking meds, Hadge slowly regained his ability to read and think more clearly.

Eventually, he was asked to learn how to facilitate HVN meetings. Hadge was skeptical that he could handle the responsibility, but also stunned that he’d been asked. For his whole adult life, the medical system had treated him as too fragile to withstand failure. Being encouraged to take a risk was a revelation.

As it turned out, Hadge was a top-notch facilitator. He now travels around the country leading HVN trainings. His official title is “community bridger and trainer.” Last spring, he led grand rounds at the Massachusetts Mental Health Center to give doctors an overview of what HVN does. He regularly goes into the local psychiatric units where he used to be locked up and supervises peer-support groups — although he cannot always call what is being discussed “hearing voices,” for fear that patients might be forced to stay in the facilities even longer.

During a three-day training at a Holyoke community college last June, Hadge and Caroline White, an HVN colleague, educated a group of some 30 attendees about how to lead their own groups. White, who is 34, opened the training. Thin with long dark hair, she was clad in black Adidas sneakers and a black dress. “In order to pick up new tools, sometimes we have to put down old tools,” White told the audience. She handed out small pieces of paper on which clinical words were written: “prodromal,” “oppositional,” “high functioning,” “command hallucination,” “schizophrenia.” For the duration of the event, White explained, the terms had to go.

“Many of us have been taught to use these words, but it’s really important to learn to describe our experience in our own words,” she said. Hadge added, “We need to create the meaning of our experience. By calling it a hallucination, we are saying it’s false, it’s a symptom, or a sickness. Whereas having a vision is more neutral and can be defined in lots of different ways.”

One by one, attendees ceremoniously crumpled the papers they had been given into balls and described how discarding them felt. Charlie Davidson, a clinical researcher from New Haven, Connecticut, noted that he was bound legally to use many of the words in his diagnostic reports. Hilary Andreoli, a voice-hearer who also works in a clinical setting, tilted her head back in relief when she tossed “schizophrenia” into the communal heap of trash. “I’m overjoyed to throw it in the middle of the room and never use it again,” she said.

White spoke about religious voice-hearers, including Mohammed: “He describes hearing a voice from the sky that moved through him like a powerful wind.” Many of the experiences that lead people to “be slapped with” psychiatric diagnoses, White added, “are common in Kundalini awakening.” Everyone then broke into groups of three. Two people took turns trying to have a conversation, while the third person spoke to them through a wrapping-paper tube in order to simulate a voice-hearing experience.

A few voice-hearers shared their personal experiences with the room. One HVN participant — who asked not to be named in this article — said he’d been accompanied with no distress for many years by the voice of a friend who had died when he was 16. “It’s the most important relationship in my life,” the man told the room. “I would never want to lose that.” In HVN, he had been relieved to find a forum where he could discuss the voice without being judged.

White said that she had been medicated starting when she was a teenager. In her 20s, she lived in a halfway house. When she got involved in HVN, she found ways to comprehend her voices and friends who helped her — including some with whom she played roller derby for a while, under the name Mazel Tov Cocktail.

“I learned how to be assertive,” said White, who is now married. “I can talk back to my voices when they taunt me: ‘I’m Mazel Tov Cocktail. Who do you think you are?’ Now I have strategies. I can read a book out loud or ask them, ‘Could you come back in a half hour?’”

Some aspects of HVN’s methods have made inroads into the mainstream. In 2014, the British Psychological Society released a report, “Understanding Psychosis and Schizophrenia,” which suggested that hearing voices should not necessarily be considered a sign of mental illness. It linked psychosis to creativity and discussed the idea that giving people a schizophrenia diagnosis may harm them, not help. In a study conducted at University College London, 16 people were asked to dialogue directly with a computer avatar representing their voices. In follow-up research, three people reported that they had stopped hearing voices, and all others experienced a decrease in their voices’ intensity and frequency. An expanded $1.7 million randomized study of avatar therapy is underway with 142 new patients.

HVN’s engage-the-voices approach, though, has never been the subject of rigorous clinical evaluation. Because the network grew up outside formal health and academic spheres, some of its members are wary of formal research. Many refer to themselves as “survivors” of the medical establishment. In a 2014 speech at a conference in Austin, Texas, Hadge said: “There’s a huge divide between intent and impact. What some people call treatment, other people like myself call torture.” The statement was met with applause.

Larry Davidson, a psychiatry professor at Yale University, is seeking funding to determine if it would even be possible to study HVN. It’s a tricky proposition. “The things research requires — recording progress, symptoms before or after treatment — none of those are consistent with the hearing-voices model,” he explains. “It’s not a clinical service, and people are not assessed. Participation cannot be recorded.”

Critics of HVN see the network’s core beliefs as a risky reversion to the era when schizophrenia was seen as an emotional problem and patients didn’t get proper medical care.

E. Fuller Torrey, a medical researcher who specializes in schizophrenia and bipolar disorder and who founded the Virginia-based Treatment Advocacy Center, which promotes laws allowing forcible commitment and medication of severely mentally ill people, says treating schizophrenia as anything but a disease is dangerous. “Focusing on the content of auditory hallucinations is a waste of time,” Torrey argues. “Schizophrenia is as much a disease as tuberculosis. Like Parkinson’s, it’s a disease of the brain.” He points to research indicating that people who have psychotic episodes that go untreated often have worse long-term outcomes than those who receive medical care.

Joseph M. Pierre, co-chief of the Schizophrenia Treatment Unit at the VA West Los Angeles Healthcare Center, acknowledges that voice-hearing exists on a spectrum: Some people experience pleasant visits from dead relatives, while others are haunted and harassed by voices whose origins they can’t locate. Pierre says there is a fine line, however, between destigmatizing mental illness and romanticizing it. “Sometimes, people’s lives are transformed by cancer in positive ways — for example, gaining perspective on what’s important in life and what they want to do with it,” he explains as a point of comparison. “But that doesn’t mean that we should think of cancer as a gift, taking time to understand its meaning in your life at the expense of seeking medical care.”

Some individuals have spoken out against HVN based on personal experience. Susan Inman, author of After Her Brain Broke, a memoir about her daughter’s schizophrenia, wrote an article for the Huffington Post that criticizes the “alarmingly de-medicalized approach” of the 2014 British Psychological Society report and HVN. “Many people might want to be part of a nurturing group providing advice on how to respond to disturbing voices or other difficult experiences, since underfunded mental health services haven’t met these needs,” Inman notes. “It’s problematic that the only group meeting these needs for voice-hearers uses ideas that don’t support science-based ways of understanding their illnesses.”

In 2013, a journalist named Robert Whitaker was invited to speak about the dangers of antipsychotic drugs at a conference hosted by the Virginia-based National Alliance on Mental Illness (NAMI). Randye Kaye, a volunteer NAMI trainer who helps families with mentally ill children and who wrote a book about her son’s schizophrenia, Ben Behind his Voices, says some audience members were “outraged” by the presentation. “On a Facebook thread, one [family] posted that their son was doing incredibly well on medication and excited enough about recovery to go to the NAMI conference,” Kaye explains. “He attended the HVN presentation and decided he didn’t need medications. He lost his job, lost his car, lost everything because of what he heard there.”

Kaye admits that there might be value in HVN-style support groups, but only as a supplement to medical treatment. She would never encourage her son to join the network. “Sure, maybe if we lived in a tribal culture, he’d be a medicine man,” she says, “but we live in Fairfield, Connecticut.”

One Sunday afternoon last June, Hadge opened the front door of RLC, where he first encountered HVN and now works. A blond woman who looked to be in her 30s was sprawled in the entryway wearing two different shoes. He bent over to talk to her.

“Are you OK?” Hadge asked. “Can I help you get up? Do you need an ambulance?”

The woman was agitated and confused. All she could manage was, “Not good. Not good. I’m not good.”

Hadge took her inside and microwaved some ramen noodles for her in the kitchenette near the room where his HVN group gathers. (Journalists aren’t allowed to document those meetings.) He brought an almost preternatural calmness and empathy to the situation. “I try to talk to people like there’s someone in there,” he explained a little sadly, “because I know what it’s like.”

These days, Hadge has lost some weight, and his dark hair is graying near his temples. Because he took medication for years, his speech sometimes slurs and his hands shake from nerve damage — so badly that he cannot use a touch screen. He has to look directly at a speaker in order to follow what is being said. Any external voice without a face still presents trouble. In 2014, when Hadge was on a layover in Atlanta on his way to an HVN training, the airport’s automated announcements bombarded him. “I was already tired, and all these voices were just coming out of the ceiling. I started losing my shit and yelling: ‘Shut up! Everyone, shut up!’” he recalled. Other people he was traveling with reminded him that he was in control: “They said, ‘You’re not making sense, Marty.’ They told me to put on my headphones to block the sound and to focus on not yelling so I wouldn’t get arrested.” Hadge managed to calm down and make it onto his flight.

A few years ago, when his mother died and he had to travel for her funeral, the thought of seeing people from his childhood was so upsetting that Hadge decided to go back on Haldol temporarily, just to make it through the experience. He said that Hornstein told him, “That’s an excellent use of medication, Marty.”

Before joining HVN, Hadge faced multiple hospitalizations every year; in the last four years, he had been admitted just three times for episodes that, in his words, “interfered with the ability to navigate the here and now.” The stays were different from previous ones. With HVN techniques, Hadge was able to understand what had happened — often, activation of bad childhood memories — and tell himself he would get through it. Also, when he’s in a hospital, he isn’t alone. “I have friends now, and they come and visit, bring me cigarettes,” he says.

At RLC, Hadge implored the woman he’d brought inside to have some water. “When I get into a state, I can forget to drink for a really long time and the dehydration makes things worse,” he explained. “Is there anyone you want to come get you?” he asked the woman gently. “Is there anyone I can call?” He urged a coworker to find her some new pants, because she had urinated in hers.

By the time she left the building, about an hour after Hadge had found her, the woman could manage full sentences. She looked him right in the eye.

“Thanks a lot,” she said. Hadge nodded.

Hadge says HVN has given him purpose and lent coherence to his days. He has what he’s always wanted — “a life that’s worth living.”

A version of this article originally appeared in the January/February 2017 issue of  FP  magazine.

Correction, Jan. 17, 2017: Gail Hornstein is a professor of psychology at Mount Holyoke College. A previous version of this article mistakenly said she was a professor of psychiatry.

Samantha M. Shapiro is a writer living in New York City. (@Ms_SamShapiro)