Excerpt from Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness by Gail A. Hornstein

I am pleased to present an excerpt from the book Agnes’s Jacket: A psychologists search for the meaning of madness, submitted by the author Gail Hornstein. If you want more of this after you finish reading it you can purchase the book: Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness.

Chapter 5

Who’s crazy now?
June 2004

After two terms of plunging back into teaching, department politics, and the myriad tensions of life as an academic, I return to Britain for the annual meeting of the Hearing Voices Network. My colleagues are busy planning trips to the American Psychological Association’s annual convention; they’d be astounded if I told them I was heading off to a conference of voice hearers. I haven’t yet figured out how to bring together the two worlds I’ve been living in. During the semester, I’m a psychology professor; as soon as school ends, I’m back in the world of HVN. They’re so radically different—in style, assumptions, and structure—that I feel as if I’m traveling a lot farther away than just to England.

Like every registered charity in the United Kingdom, HVN is required to have an annual general meeting (AGM) of its members to elect officers and vote on policy changes. So the AGM is basically a business meeting. If you walked into the room and didn’t know what was happening, you’d think it was pretty much like the yearly meeting of any other organization—highly structured, a bit boring, with a lot of people there mainly to see their friends and go out for a drink later.

At 10:00 a.m. on a rainy morning, after an overnight flight and a rushed trip from London, I grab a cup of tea and take my seat in a small auditorium in downtown Manchester. The faded parquet floor and shabby curtains of the Central Methodist Hall remind me of an old primary school. About fifty people are present, mostly facilitators of HVN groups who’ve come to report on activities in their region.

The tone is upbeat. They are now 160 HVN groups all over Britain, 26 in the southwest of England alone. Membership continues to grow at a rapid rate. The main office, across the street from where we’re meeting, now has a grant to run a telephone help line. “We’ve gotten such a positive response from the people who’ve called in,” says Peter Bullimore, a voice hearer who volunteers there. “A woman rang the other day and said we were the first people who’d ever talked to her about her voices. She said she’d first contacted SANE (a patient advocacy group closely tied to the medical establishment) and they kept asking, ‘What’s your diagnosis?’ She said she hung up and called us.”

At the break, I wander up to Geoff, a burly guy in jeans and a torn Manchester United football jersey who’s got a startled look. He’s slouched down in a folding chair with two grim young women glued to his either side. “Hi, where are you from?” I ask, passing him the ubiquitous plate of chocolate biscuits. Geoff stuffs two in his mouth and flashes me a wicked look. “I’m from Northumberland Hospital,” he says, “and these are my nurses. They’ve let me off the psych ward for the day to come to the AGM.” For a second I think he’s joking, but when I see how embarrassed the women look, I realize he’s not.

Geoff and I chat about the speakers. “Boy, I’m tired today,” I say, yawning, despite having just drunk three cups of tea. Geoff nods sympathetically. “Are you on clozapine? That drug used to zone me right out.” I burst out laughing. “No, it’s jet lag. I just flew over from the USA.” The two nurses glare at me. “Really,” I smile. “I’m a psychologist.” Geoff winks. “Right. You’ve heard that one before, haven’t you, girls?”

In one of the meeting’s most powerful presentations, Peter Bullimore talks about a key obstacle facing HVN—patients’ own reluctance to seek peer support. After years in the mental health system, people take on negative attitudes. “By the time I went to my first hearing voices meeting,” Peter tells the group, “I’d become the person I’d learned to be in hospital, a ‘typical schizophrenic.’ I didn’t wash. I wore clothes I found on the street. I looked terrible. I smelled worse. People avoided me wherever I went. So when I walked into the hearing voices group that first time and saw these ten people wearing nice clothes and sipping tea, I thought, these can’t be schizophrenics, they’re too clean!”

Now, six years later, Peter is a paid consultant on the staff of Asylum Associates, a survivor-run company that earns thousands of pounds each year training mental health workers to understand voice hearing from the perspective of those who experience it. Once written off as a chronic mental patient and so heavily medicated he had to wear a towel around his mouth to soak up the uncontrollably dripping saliva that was a side effect of the drugs he was given, Peter’s account of recovery through mutual support and self-help profoundly affects everyone who hears him speak.

There’s a bit of the traditional conference at this particular AGM, with some formal papers read on topics of interest to members. Philip Thomas reports on a research project funded by Mind, the United Kingdom’s largest mental health charity, which surveyed people who’d weaned themselves off psychiatric medication. This study is the first systematic attempt to find out what the “coming off” process is actually like for people who choose to go through it. Thomas is a professor at the University of Central Lancashire and a psychiatrist, one of the few to risk openly criticizing his field while also working on the senior staff of the National Health Service. He wants psychiatry to admit its limitations, help those it can, and listen more carefully to patients. In 1999, he helped to found the Critical Psychiatry Network to give dissident doctors their own form of peer support.

Thomas doesn’t need a microphone. He’s got the authoritative tone of the experienced lecturer, and bristly gray hair and a pair of reading glasses perched on his nose give him the air of a professor. For the first few minutes, he sounds like the standard speaker giving a scientific paper. He’s got slides and a pointer; he paces as he speaks. But this audience isn’t behaving the way a group of doctors would. Every time Thomas glides over some conceptual detail or statistical subtlety in the results of the Mind study, people start yelling out comments from the floor. It sounds more like a public hearing on a controversial issue than a scientific lecture, as indeed it is. HVN is full of people who’ve spent years being silenced by doctors. There’s no way they’re going to let anyone, even a staunch ally like Phil Thomas, keep them from raising challenges or questions.

It took three more years of attending these kinds of meetings, visiting support groups across England, and reading hundreds of pages of materials produced by HVN before I felt confident that I understood how hearing voices groups work. Now that I do, I want to share the optimism of this approach with everyone.

The structure of local HVN groups varies a great deal: Some have fixed membership, while others operate as drop-ins. Some are facilitated by nurses, social workers, or occupational therapists; others are run entirely by voice hearers themselves. HVN meetings are never as tightly structured as those of twelve-step groups like Alcoholics Anonymous, where there’s a fixed order and everyone knows exactly what will happen. But all HVN meetings do share certain general themes. Members give detailed descriptions of their individual experiences. They ask one another questions like, What do the voices say? What tone do they use? How many different voices are there? Are they male or female? Have they changed over time? Are there certain situations when they’re most likely to appear? How do you feel when they come? By encouraging this kind of detailed contextual analysis, hearing voices groups help people make sense of experiences that have often baffled or terrified them.

Most people who end up at HVN have spent years struggling on their own. Any experience that continues for so long and is as confusing, isolating, and heavily stigmatizing as voice hearing can eventually become overwhelming. If no doctor or nurse or priest has ever created a space for you to talk about what’s happening inside your head, suddenly finding yourself in a supportive group, with other people who are struggling as you are, who seem genuinely interested in helping you understand your experience, can be an enormous relief. As a nurse who co-facilitates one HVN group wrote recently, “The group is a safe space for people to feel desolate. Non-voice hearers cannot appreciate the impact of voice hearing on a person’s life. During the life of the group, members have used the space to describe the sheer awfulness of voice hearing and the impact that it has on their ability to cope with their day-to-day existence.”

But HVN is not just a place for sufferers to commiserate. By reframing the problem itself—not voice hearing per se, but the anxiety, guilt, or fear that often accompanies it—support groups help people to analyze the symbolic significance of the voices. For example, someone who has difficulty making decisions might have a voice that tells her what to do. A person who’s been abused may have a voice prohibiting him from talking about it, thereby keeping the threats of the abuser alive in his mind. Someone who comes from a family that forbids talking about emotions might have a voice instructing her not to trust others. By taking a curious, interested, and accepting attitude toward the whole experience, hearing voices groups help people to realize what functions the voices might be serving so they can consider other ways of handling these problems.

A particular benefit of HVN groups is that they help people identify the circumstances most likely to trigger the voices so they can have more control over the experience. Many people don’t realize until they’re in these groups that there are specific triggers, or that the voices vary in frequency or intensity in different contexts or over time. As one member of a London group wrote, “Being in the group encouraged me to develop a vocabulary to describe my own experiences, and also gave me a sense of understanding and coherence about the way I’d been and the way I had needed to be to survive. By challenging the critical content of the voices, the group helped me to feel more able to take control of my own fate.”

Another member of the same group said, “Talking with the other members has increased my self-awareness of what’s happening to me, my state of mind, and why I need to do certain things to help myself. I’ve become more responsible for myself and feel less helpless. I realize now I do have some power over my situation.” Since the most difficult part of the experience for many people is feeling completely at the mercy of the voices, unable to affect or control them in any way, trying out some of these strategies can be a tremendous help. And as people start to cope more effectively, they feel less distracted or preoccupied by the voices and more in control of their own minds.

Denying that the voices exist or trying to block them out—with psychiatric medications or heroin or loud music or earplugs—paradoxically seems to intensify them. People often end up totally isolated, terrified that if they visit friends, go to work, or even just go into a shop, their voices will be discovered.

In key research studies by Marius Romme and Sandra Escher in The Netherlands, and in HVN’s fifteen years of experience running support groups, the people with the best outcomes are usually those who make a pragmatic deal with their voices. They come to terms with being voice hearers the way people adapt to other powerful life events or challenges. They pay attention to the positive voices and ignore the threatening ones, or they listen selectively at certain times. (This isn’t so different from a person with asthma, for example, deciding to take up yoga or eliminate certain foods from their diet to limit the intensity of his or her symptoms.)

At HVN groups, people hear about a range of techniques that have proven helpful. Some voice hearers, for example, carry mobile phones (even ones that don’t work) on buses or trains or while walking down the street. That way, they can talk back to their voices without attracting attention. Others keep diaries that help them identify the kinds of situations that trigger the voices or make them worse. Some voice hearers practice deep relaxation, yoga, or meditation to reduce anxiety. HVN facilitators stress that no one strategy will be effective for everyone. People are encouraged to take an active, exploratory attitude toward figuring out what works best for them personally.

After talking with hundreds of voice hearers and intensively studying the phenomenon for two decades, Marius Romme wrote, “Hearing voices is not primarily an incomprehensible symptom of an illness but more a way of coping with personal problems. When the self is not strong enough, an outside power can enable the person to take some distance. In a hopeless situation with no way out, a spiritual solution often arises. We see this in religious inspiration and in voice hearing.”

The optimism and energy of HVN’s approach have paid off. By 2006, there were hearing voices groups in Austria, Australia, Denmark, Finland, the Gaza Strip, Germany, Ireland, Italy, Japan, Malaysia, the Netherlands, New Zealand, Norway, Portugal, South Africa, Sweden, Switzerland, and the United Kingdom. From the beginning, Britain has been the world center of the network; there are now 160 hearing voices groups in the United Kingdom alone. You can live in a remote village in Dorset or in the Scottish Highlands and still find a group near enough to meet with regularly. In 2000, the Division of Clinical Psychology of the British Psychological Society issued a revised set of guidelines for understanding and treating psychosis that incorporated HVN’s assumptions, and in 2003, the NHS started paying for its doctors, psychologists, nurses, and social workers to be trained by voice hearers and adopted parts of HVN’s model as the framework for its own services.

Without ever downplaying the anguish of voice hearing, Hearing Voices Network members have a refreshing sense of humor about certain aspects of the experience. Here’s a story—perhaps apocryphal—that has circulated for years at support group meetings.

A voice hearer is traveling by train from Sheffield to London. He’s taken the advice of people in his support group and pinned a small microphone to the lapel of his jacket. This way, he can talk back to his voices and appear to be speaking into a mobile phone. Soon after the train leaves the station, he, like other passengers, begins an animated conversation. Nearing London, the train goes through a series of tunnels. Everyone else loses telephone contact, but he keeps chatting. When the journey ends at St. Pancras station, a man comes up to him and says, “I’m sorry to intrude, but I couldn’t help noticing that your phone kept working when none of ours did. Could I just ask, what Network are you on?”

You can buy her book here:

5 thoughts on “Excerpt from Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness by Gail A. Hornstein

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  1. The DSM is both a billing code and way to justify meds: I’ve seen diagnoses shift for folks after an allergic response necessitated a shift in meds. Oddly, aside from pathological bias, which seems to be the basis of American politics, I have encountered the others in the news and field for years.

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  2. Oh, I just added this book to my “wishlist” last week though I’ll probably have to wait until getting back to school to get a copy. Thanks for the sneak preview.

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