Gail Hornstein on First-Person Narratives of Madness
On the future of mental health
Posted April 16, 2016
The following interview is part of a “future of mental health” interview series that will be running for 100+ days. This series presents different points of view about what helps a person in distress. I’ve aimed to be ecumenical and included many points of view different from my own. I hope you enjoy it. As with every service and resource in the mental health field, please do your due diligence. If you’d like to learn more about these philosophies, services, and organizations mentioned, follow the links provided.
Interview with Gail Hornstein
EM: You are the author of Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness. Can you tell us a little bit about that book?
GH: My aim in writing Agnes's Jacket was to show how people who have experienced very serious emotional distress – the kind that gets diagnosed as schizophrenia, bipolar illness, personality disorder, paranoia, etc. – have insights that force us to reconceive some of our fundamental assumptions about madness, treatment, and mental life.
From Agnes Richter, who stitched an autobiographical text into every inch of the jacket she created in a 19th-century German asylum, to the hundreds of other patients who have managed to get their stories out, the book shows how first-person accounts can help to bridge the gulf between the ways that medicine explains psychiatric illness and the experiences of those who suffer.
Agnes’s Jacket also documents the history, operation, and effectiveness of the Hearing Voices Network (HVN), an international collaboration of professionals, people with lived experience, and their families and supporters who have been working together for 25 years. They have developed an alternative approach to coping with voices, visions, and other extreme states that starts from the assumption that such occurrences are within the realm of human experience, and are not necessarily pathological.
The core of HVN’s work takes place in the hundreds of peer-support groups now held each week in 30 countries across 5 continents. Countless people who had been diagnosed with schizophrenia or other chronic psychiatric conditions have been significantly helped by participating in these groups and are now living normally.
I speak widely about HVN and other innovations in mental health across the US, UK, and Europe (for many resources, see www.gailhornstein.com), and I co-founded – and for six years co-facilitated – one of the first HVN peer-support groups in the United States, in Holyoke, Massachusetts (part of the Western Massachusetts Recovery Learning Community). I also co-direct (with Jacqui Dillon, Chair of HVN in England) a major research and training project (supported by the Foundation for Excellence in Mental Health Care) that is training dozens of new hearing voices group facilitators across the US, and conducting research to identify the key mechanisms by which this approach works.
EM: You’ve compiled a bibliography with hundreds of first-person narratives of madness. Can you share with us your intentions in creating that bibliography?
GH: Unlike most scholars who study emotional distress and the experiences that get diagnosed as “mental illness,” I have always been just as interested in the insights of those with first-hand experience as in doctors’ theories.
Before I got involved in the research for Agnes’s Jacket, I spent many years reading and discovering the accounts that people have published throughout history about their anomalous or distressing experiences, and sharing these resources with anyone who was interested. My Bibliography of First-Person Narratives of Madness in English, now in its 5th edition with more than 1,000 titles, is used by researchers, clinicians, educators, and peer groups around the world, and includes narratives from the 15th century up through last year (available for free download or distribution). These books offer a wealth of knowledge to anyone interested in how the mind works.
EM: You are also the author of To Redeem One Person is to Redeem the World: The Life of Frieda Fromm-Reichmann. What are some of the headlines and highlights of that book?
GH: My biography tells the story of a pioneering psychiatrist who dedicated her life to doing intensive psychotherapy with the most disturbed patients. Many people know of Frieda Fromm-Reichmann’s work through the slightly fictionalized account of one of her most famous treatments, written by the patient, under the title I Never Promised You a Rose Garden (by Joanne Greenberg). I wanted to give a fuller account of Fromm-Reichmann’s inspiring life and work; it took 10 years to complete the research, but it was worth it!
One of my major goals in writing the biography was to show that despite the spread of medication and electroshock (ECT) as the primary treatments in 20th century American psychiatry, psychotherapy has long had powerful results with even the most seriously distressed people. We can all learn from Fromm-Reichmann’s innovative accomplishments, her courage, and above all her true dedication to helping each patient move closer to a creative and emotionally unfettered life.
EM: What are your thoughts on the current, dominant paradigm of diagnosing and treating mental disorders and the use of so-called psychiatric medication to treat mental disorders in children, teens and adults?
GH: I think that there are far too many anguished people in our society, and we don’t know how to cope with the extent of this suffering. We don’t know how to respond to the increasing exposures of sexual abuse at all levels of society. We don’t know what “PTSD (post-traumatic stress disorder)” really means, and we are frightened about the violence that seems to be escalating everywhere.
Parents are increasingly pressured at work and teachers required to “teach to the test” in schools, so children must conform to narrower and narrower roles. Psychiatry offers a convenient and reassuring framework for understanding emotional distress of any kind, from mild to severe – seeing it as stemming from some “disorder” whose biological cause may not yet be known, but which can nevertheless be treated with medication in some form. This framework has allowed psychiatry to survive in a competitive mental health marketplace, but not because it is based on any well-established scientific theories or findings.
In fact, psychiatric diagnoses are based entirely on matching a person’s presenting problem to a list of behaviors or mental states in the current edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM), whose categories are constantly being revised (or abandoned, or collapsed together). Since the causes – especially the physiological or genetic causes – of any such disorders remain unknown, these categories are essentially metaphors for describing a person’s suffering, a way to substitute medical-sounding terms for other forms of description. There’s no blood test or brain scan or other biological test that can confirm a psychiatric diagnosis, so psychiatrists just use educated guesswork to decide what medication, in what dosage, to prescribe to each patient, and alas, they are often wrong.
I agree with the important critiques of some key British psychiatrists, especially Joanna Moncrieff, author of The Myth of the Chemical Cure and The Bitterest Pills: The Troubling Story of Antipsychotic Drugs, and Sami Timimi (author of The Myth of Autism: Medicalizing Men’s and Boys’ Social and Emotional Competence and Misunderstanding ADHD), and I hope that more American readers will become familiar with their work and that of their colleagues in the Critical Psychiatry Network.
EM: If you had a loved one in emotional or mental distress, what would you suggest that he or she do or try?
GH: First, I would ask if I could sit quietly with them so we could try together to get a better sense of what was going on. If the person is able to articulate what they need or what might help to ease their distress at that moment, I would try to do this, so long as it was feasible and did no harm to anyone else.
In the longer term, I would make sure that the person understood the full range of options available to them, and I’d point them toward resources that might be especially useful to their particular needs and challenges. Even the most seriously distressed people are able – far more than my training as a psychologist would have led me to believe – to articulate the meanings of their actions and feelings and to identify specific ways of reducing their distress, so long as they are in a supportive, non-judgmental context.
People have sometimes mistaken my critique of current practice in psychiatry as an “anti-medication” stance that might deprive a person of useful treatment. This is completely false. I am grateful to live in the 21st century, and to have whatever benefits modern medicine has to offer. But everything I have learned in 40 years of research has demonstrated the individuality of people’s experiences, and the impossibility of any one solution working for everyone. I always teach my students this maxim: “In psychiatry, every treatment works for some and no treatment works for all.” In the end, what matters is that the person gets on a path to healing, one however that is defined by them.
There are a few exceptions. I would never personally support someone’s choice to undergo electroshock treatment (ECT) or a surgical intervention for an emotional problem. I also think that there are a small number of situations where a person is so acutely distressed that someone else has to make the choice about how to respond (just as there are situations where a person’s physical state precludes their deciding what to do for themselves).
Peer-led initiatives like Hearing Voices groups or Alternatives to Suicide groups achieve more far-reaching and powerful results than many professionals realize. Psychotherapy is crucial to many people’s healing. Medications can help to calm highly agitated people or to make distressed states less intense or frightening. Of course, peer support and psychotherapy have few “side effects” as compared to medication, and can be used indefinitely (unlike medication, which Robert Whitaker’s book Anatomy of an Epidemic makes clear can often have damaging long-term consequences). What is truly essential is listening to the person in distress and crafting responses that actually help.
Gail A. Hornstein, Professor of Psychology at Mount Holyoke College (Massachusetts, USA), researches contemporary history and practices of psychology, psychiatry, and psychoanalysis. Her articles and opinion pieces have appeared in many scholarly and popular publications, and she is author of two books: To Redeem One Person is to Redeem the World: The Life of Frieda Fromm-Reichmann, and Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness. Her Bibliography of First-Person Narratives of Madness in English, now in its 5th edition with more than 1,000 titles, is used internationally by educators, clinicians, and peer organizations. She is actively involved in training and research to expand the Hearing Voices Network in the United States, and speaks widely about mental health issues across the US, UK, and Europe. www.gailhornstein.com
Eric Maisel, Ph.D., is the author of 40+ books, among them The Future of Mental Health, Rethinking Depression, Mastering Creative Anxiety, Life Purpose Boot Camp and The Van Gogh Blues. Write Dr. Maisel at firstname.lastname@example.org, visit him at http://www.ericmaisel.com, and learn more about the future of mental health movement at http://www.thefutureofmentalhealth.com
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