New communities ready for donors. The research and development team’s project to bring Hearing Voices peer support groups to hundreds of communities across the United States is in full swing, sending trainers into the field to equip group facilitators in five regions of the U.S. and fostering the creation of a stronger regional and local infrastructure of trained facilitators over the long term. Communities interested in sponsoring a training in their area are encouraged to contact Caroline Mazel-Carlton, Training Coordinator, at 413.539.5941 x316 or Caroline@westernmassrlc.org to learn about costs and training requirements.
Thanks to the generosity of our donors, researchers are also collecting and analyzing survey data from group participants to create a research base that explains the safety and effectiveness of the Hearing Voices approach and motivates health care agencies and insurers to help make Hearing Voices groups accessible in every neighborhood in America.
Where the problem lies
People who hear voices, see visions, or experience other unusual perceptions, thoughts, or actions are often diagnosed as psychotic and given a poor prognosis. The medications used since the 1950s to treat those who suffer in these ways are effective for some but not for the majority; when these medications do provide some symptom relief, their benefits typically diminish over time while destructive physical and psychological side effects become increasingly problematic. Hearing voices in particular remains a challenge for many, many patients even after they have tried every possible medication over many years.
For the past 30 years, the Hearing Voices Network, an international collaboration of professionals, people with lived experience, and their families and friends has been working to develop an alternative approach to coping with voices, visions, and other extreme states that is empowering and useful and does not start from the assumption that such people have a chronic illness (see www.hearing-voices.org, www.hearingvoicesusa.org, and www.intervoiceonline.org). A large body of research data, published in major professional journals, now provides support for key aspects of this approach, and the hundreds of peer-support groups that have developed in 30 countries across 5 continents are enabling voice hearers – even those who have been chronically disabled – to learn to cope more effectively or to rid themselves of the negative effects of their voices.
Help is on the way
Excellence’s Hearing Voices Fund supports the development of a network of hearing voices peer-support groups across the United States. These groups offer a safe place for people to share their experiences of voices, visions, tactile sensations, unshared beliefs, and other distressing experiences. By meeting together to help and support one another, to exchange information, and most importantly to learn from each other’s coping strategies, these groups can transform the lives even of people who have suffered for many years. As a consequence, some people stop hearing voices entirely, once they understand the symbolic significance they have been serving (e.g., to preserve a memory of trauma that has yet to be worked through). Others learn to accept and “live with voices” in ways that enable them to regain more control over their lives.
The current situation in the U.S. stands in striking contrast to that of other countries. England, for example, with a population of 54 million, has 180 hearing voices groups, whereas the U.S., with a population of 315 million, currently has only a few dozen groups. Even Australia, whose population is separated by great distances in a challenging landscape, has large and effective regional hearing voices networks. The Hearing Voices Fund is supporting a systematic program of training intended to create a network of hearing voices peer-support groups in five key regions of the U.S. Participants are being selected using a rigorous model in which mental health professionals and voice hearers collaborate in an intensive shared learning experience that equips them to apply HVN’s concepts and methods to the creation of positive alternatives for people diagnosed with psychosis.
An equally important part of the Hearing Voices Fund’s mission is to conduct research that can systematically analyze the mechanisms by which these peer-support groups work. Personal testimonies and some initial phenomenological studies of people’s experiences in groups suggest promising avenues for more intensive analysis, and the Fund’s research arm seeks to advance this work across the U.S.
The Hearing Voices Research and Development Fund is administered by Gail A. Hornstein, Professor of Psychology, Mount Holyoke College.
Gail A. Hornstein is Professor of Psychology at Mount Holyoke College, where she has been a member of the psychology faculty since 1978. She received her BS from the University of Pittsburgh in 1972, her PhD from Clark University in 1981, and a Postdoctoral Fellowship in Personality and Social Structure from the University of California, Berkeley in 1981-82. Since the 1990s, Hornstein’s research has concentrated on 20th-century psychology, psychiatry, and psychoanalysis, supported by grants and fellowships from the National Library of Medicine, the National Science Foundation, the National Endowment for the Humanities, the American Council of Learned Societies, the American Philosophical Society, and the Marion and Jasper Whiting Foundation, among other sources. She has been a visiting research fellow in the History of Science Department, Harvard University; the Bunting Institute, Radcliffe College; Clare Hall, Cambridge University; Magdalen College, Oxford University; the School of Advanced Study, University of London; the Centre for Research in the Arts, Social Sciences, and Humanities, Cambridge University; the Birkbeck Institute for Social Research, University of London; and the School of Advanced Study, Durham University. In 2011, she was awarded the Meribeth E. Cameron Faculty Award for Scholarship at Mount Holyoke College, and in 2014 she received the Ally Award of the Western Massachusetts Peer Network.
Hornstein’s articles, interviews, and opinion pieces have appeared in many scholarly and popular publications, and she is the author of two books: the widely-reviewed biography, 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, which documents the history, operation, and effectiveness of the Hearing Voices Network, among other peer-led initiatives, about which she has lectured across the US, UK, and Europe. Her Bibliography of First-Person Narratives of Madness in English (now in its 5th edition) lists more than 1,000 titles and is used by researchers, clinicians, and educators around the world. Hornstein founded and co-facilitated one of the first hearing voices peer-support groups in the US (in Holyoke, MA) and she has trained dozens of facilitators across the Northeast. For further information, see www.gailhornstein.com.