For the past five years, Gail Hornstein (left) has sat in on support groups organized by people who hear voices.
Across the United States and Europe, people diagnosed with serious mental illnesses are coming together to share their stories, to devise coping strategies, and to reframe what it means to be “mentally ill.” Hornstein’s new book takes readers inside this world.
A psychology professor at MHC, Hornstein has always been interested in states of mind beyond the normal. But it was not until she did the research for Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness, to be published in March 2009, that she came to understand “what a truly patient-centered approach could achieve.”
“I was forced to reject much of what I learned in graduate school and from other professionals,” says Hornstein. “People who have been diagnosed with mental illness have been working for more than thirty years to develop alternatives to mainstream psychiatric approaches. It’s important to listen to their ideas.”
Rather than accepting the drugs and behavioral treatments favored by professionals, the people Hornstein writes about recover mainly with support from their peers. In the groups they organize, patients encourage one another to describe, often for the first time, what the voices in their heads are saying, and to analyze traumatic experiences that seem linked to the appearance of symptoms.
“Medicalizing these experiences tends to create passivity,” she says. “If the medication doesn’t work, people don’t know what else to try. Peer support groups teach them a range of ways to help themselves.”
In her book, Hornstein introduces readers to some of these people, including historical figures and contemporary activists. The book’s title refers to the jacket made by Agnes Richter, a woman institutionalized against her will in 1890s Germany. Every inch of the garment she fashioned from her institutional uniform is hand-embroidered with an autobiographical text recording her experiences.
For Hornstein, Agnes’s jacket symbolizes “the conundrum we face in understanding madness. People have an intense desire to tell their stories, but we can’t always grasp their meaning.” Hornstein hopes her book will serve both the storytellers and her readers.—M.H.B.
Learn More: To see Hornstein’s 600-title bibliography of first-person narratives of madness, go to www.mtholyoke.edu/acad/misc/profile/ghornste.shtml. For information and links to the psychiatric survivor movement, go to www.freedom-center.org or www.mindfreedom.org.See below for excerpts from Mieke Bomann’s interview with Hornstein.
Excerpts from an interview with Gail Hornstein
New Book
My new book is Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness. The subtitle captures a key part of what it is about: my search for a different way to understand mental illness. I don’t use that term [mental illness]. The people I’m writing about reject that particular way of framing what they are more likely to call emotional distress.
Madness
The people I’m writing about in this book are people who have themselves experienced emotional distress—some historic figures, some contemporary activists, some of whom live in Northampton or London or elsewhere. Madness is the word that is preferred by the people I’m writing about. In a more profound sense, I use it because it has precisely the kind of symbolic resonance that I’m trying to encourage readers to have. I’m trying to get them to think about states of mind that are seriously disturbed without presupposing that they have a biological cause. I’m trying to decipher the meanings of madness using an archeological metaphor rather than biological.
I am taking the readers in this book on a journey to meet many of these people, to participate in their meetings and gatherings and plunge into different ways of thinking about mental illnesses.
I want people to know that the methods that the survivor movement has come up to help people are as effective as or more effective than the treatments of mainstream psychiatry. It’s helpful for family members [of people who] have been diagnosed with mental illness. This is a really positive message.
Peer Support
I’m a PhD psychologist who is reframing her own understanding on the basis of what these people are telling me. I’m rejecting much of what I learned in grad school and what colleagues think, and presenting the viewpoint that patients themselves have come up with. And a word like madness is part of that.
The people I write about are people who have joined together—mental health professionals are allies but not leaders—and the core method of helping people is a peer-support model that is based on an understanding of emotional distress as trauma, and other abuse. (An overwhelming number tell of trauma.
The Hearing Voices Network in England has hundreds of peer-support groups. I started one here in Holyoke. In these groups people who have the experience of hearing voices (not called schizophrenic experiences) see what can they do to help themselves if they’re frightened by them. Some hear the voices of their dead husband and it’s reassuring.
But for those that are tormented, the Hearing Voices Network has pioneered a self-help model where people come together once a week in groups that are not run by mental health professionals, just voice hearers. I have gone to dozens of these meetings. They talk in ways that they are rarely able to do in the mental health system. They are asked what the voices are saying and when and where. What these groups do is help to identify triggers and coping strategies. It’s such an insightful and optimistic approach and really interested in what’s going on in people’s minds.
Resilience
Psychiatry in the last years has become very narrow—here. It’s not nearly as narrow in Europe … The British National Heath plan now sends practitioners to meetings of the Hearing Voices Network to learn how to deal with potential crises and alternative treatments. Medicalization of these experiences tends to make people more passive—and if the meds don’t work, they don’t have any choices. A lot of my book is about resilience—in terms of mental health. Many of us have come to understand that in physical health we shouldn’t just wait until we catch a disease, that we can do things to make ourselves healthier. Wellness. What I’m saying is that the psychiatric survivor movement has set up ways for emotional resilience so that if bad things happen to you, you can cope with them better.
