In the run up to the BBC Horizon show – Why did I go Mad? – Rai Waddingham and I headed up to Media City to appear on BBC Breakfast show. We shared some of our experiences about hearing voices, talking about how they have become part of our lives and how we live with them. We talk about the importance of creating spaces where people can engage with their voices and make sense of them.
If you’d like to hear my talk at this event, check out: http://backdoorbroadcasting.net/2015/04/sanity-madness-and-the-family-family-life-an-urgent-retrospective/
Details on the event:
It is just over 50 years since the publication of Sanity, Madness and the Family, R.D. Laing’s and Aaron Esterson’s groundbreaking study of ‘schizophrenia’ in 11 young women. Birkbeck Research in Aesthetics of Kinship and Community (BRAKC) and the Birkbeck Guilt Working Group have organized a one-day symposium to discuss the lasting impact of that book.
Do people still read it? Why is it almost never referred to in psychotherapy trainings in this country? How have the ideas it introduced been either absorbed into or rejected by clinical, academic and more general discourses about the family and mental/emotional illness?
Andrew Asibong, co-director of BRAKC, will facilitate the event, and participants will include Jacqui Dillon, Robbie Duschinsky, Suman Fernando, Amber Jacobs, Oliver James, Lucy Johnstone, Chris Oakley, Lynne Segal and Anthony Stadlen.
2nd May, 2017, BBC 2 9PM, See: http://www.bbc.co.uk/programmes/b006mgxf
For hundreds of years, psychiatry has treated voices and hallucinations as an enemy – regarding them as ‘insanity’ or ‘madness’ and seeing them as something to be quashed and even frightened of. But today, new scientific and psychological insights into how the brain works are leading to a radical rethink on what such experiences are – and how they should be treated.
Horizon follows three people living with voices, hallucinations and paranoia, to explore what causes this kind of phenomena. Providing a rare first-hand insight into these experiences, they reveal just what it is like to live with them day to day. They examine the impact of social, biological and environmental influences on conditions traditionally associated with insanity, such as schizophrenia and psychosis, and within the film they look at how new ways of understanding the brain are leading to a dramatic change in treatments and approaches, and examine whether targeting the root causes of psychosis can lead to recovery. Above all, they try to uncover why it happened to them – and whether it could happen to you.
Coming to a town near you: real help for voice hearers
The Foundation for Excellence in Mental Health Care is pleased to announce that its Hearing Voices Research and Development Fund has received $250,000 in funding for a 3-year project to bring Hearing Voices peer support groups to communities across the United States and to research the mechanisms by which these peer-support groups work.
The project will train more than 100 facilitators in 5 regions of the country and create a stronger regional and local infrastructure of Hearing Voices peer support groups across the US. People who hear voices, see visions, or experience other unusual perceptions, thoughts, or actions have long been diagnosed as psychotic and given a poor prognosis. Medications provide only partial help and their benefits typically diminish over time while destructive physical and psychological side effects become increasingly problematic.
For the past 25 years, the Hearing Voices Network (HVN), an international collaboration of professionals, people with lived experience, and their families and friends has worked 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 of chronic illness (see www.hearing-voices.org, www.hearingvoicesusa.org, www.intervoiceonline.org). A large scientific literature now provides support for key aspects of this approach, and the hundreds of peer-support groups that have developed in 30 countries on 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.
The US lags far behind other countries in offering this important new approach, and the new funding provides crucial support as more and more mental health organizations across the country seek training to start their own hearing voices peer-support groups. An open competition will be launched in April to choose the 5 project regions, with participants selected using a rigorous model in which mental health professionals and voice hearers collaborate in an intensive shared learning experience that itself illustrates HVN’s concepts and methods.
Equally crucial to the project is an ongoing research component that will allow identification of the distinctive components of hearing voices peer-support groups and better explain what enables them to provide such an effective and positive alternative for people diagnosed with psychosis. “This effort promises to be a movement that will measurably advance mental wellness and recovery for people in distress, their families and the community across the nation,” said Gina Nikkel, President and CEO of the Foundation for Excellence in Mental Health Care. “Hearing voices can be truly terrifying for the person experiencing them and for their loved ones. Hearing Voices Network support groups transform the fear into understanding and then empowerment.”
The Hearing Voices Research and Development Fund is jointly administered by Gail A. Hornstein, Professor of Psychology, Mount Holyoke College, and Jacqui Dillon, National Chair, Hearing Voices Network, England. Their more than 10-year collaboration models the kind of engaged research and advocacy that the project seeks to foster. More background on the project administrators can be found here. Read their recent article on hearing voices groups here.
Key partners in the project include Mount Holyoke College and the Western Massachusetts Recovery Learning Community, based in Holyoke, MA, which has pioneered the training of HVN facilitators in the US as part of its broader mission to “create conditions that can support healing and growth for individuals and the community as a whole.”
Hearing voices peer support groups offer a powerful alternative to mainstream psychiatric approaches for understanding and coping with states typically diagnosed as “hallucination”. In this jointly authored first-person account, we distill what we have learned from 10 years of facilitating and training others to facilitate these groups and what enables them to work most effectively in the long term. Having witnessed the transformative power of these groups for people long considered unreachable as well as for those who receive some beneﬁt from standard psychiatric treatment, we describe effects that cannot easily be quantiﬁed or studied within traditional research paradigms. We explain the structure and function of hearing voices peer support groups and the importance of training facilitators to acquire the skills necessary to ensure that groups operate safely, democratically, and in keeping with the theories and principles of the Hearing Voices Network. The greater use of first-person experience as evidence in deciding what works or doesn’t work for people in extreme distress is advocated; randomized designs or statistically significant findings cannot constitute the only bases for clinical evaluations.
IT’S THE BAD THINGS THAT HAPPEN TO YOU THAT CAN DRIVE YOU CRAZY!
The Hearing Voices Network in England has issued a position statement on DSM 5 and the wide issue of psychiatric diagnoses following last week’s debate on the need for a new paradigm in mental health services, reported largely as a ‘turf war’ between psychiatry and psychology. Concerned that this debate can all too easily sound ‘academic’ and miss the voices of the very people these systems impact upon – those diagnosed with mental health problems – HVN are taking the debate back to the people.
“We believe that people with lived experience of diagnosis must be at the heart of any discussions about alternatives to the current system.”
Jacqui Dillon, Hearing Voices Network, Chair.
In their statement, the Hearing Voices Network (HVN) state that psychiatric diagnoses are both scientifically unsound and can have damaging consequences. HVN suggest that asking ‘what’s happened to you?’ is more useful than ‘what’s wrong with you?’.
Concerned that essential funds are being wasted on expensive and futile genetic research, they call for the redirection of funds to address the societal problems known to lead to mental health problems and provide the holistic support necessary for recovery.
This is part of a growing, international movement by survivors of the psychiatric system who are questioning the adequacy of a biomedical model to make sense of and respond to madness and distress (see: http://www.intervoiceonline.org/ http://www.mindfreedom.org/ http://psychdiagnosis.weebly.com/ http://www.madinamerica.com/ http://www.occupypsychiatry.net/ http://www.youtube.com/openparadigmproject )
HVN invites people with lived experience of diagnosis and their supporters to engage in a discussion about the issues and help plan a way forwards.
“People who use services are the true experts on how those services could be developed and delivered; they are the ones that know exactly what they need, what works well and what improvements need to be made. This is not just an academic or professional issue – it’s one that affects our lives.”
Jacqui Dillon, Hearing Voices Network, Chair
Notes for the editor
- The Hearing Voices Network (England) is a national, user-led charity that supports people who hear voices, see visions or have other unusual experiences. The Hearing Voices Network is part of the rapidly expanding global Hearing Voices Movement with 26 Hearing Voices Networks operating, across 5 continents. The Hearing Voices Network’s position statement can be read, and commented on, via their website http://www.hearing-voices.org/
- Hearing Voices Network Chair, Jacqui Dillon (07951 635 033 Jacquidillon333@aol.com) and Trustees Rachel Waddingham (07969 161 586, firstname.lastname@example.org) and Peter Bullimore (07950 837 694 email@example.com are available for interviews.
Here is a link to my recent presentation ‘The Personal is the Political’ which was filmed at the Critical Perspectives and Creative Responses to Experiences of Trauma and Distress Conference at University College Cork, Ireland:
This was a fantastic free event, attended by over 450 people over two days was organised by the School of Nursing & Midwifery & School of Applied Social Studies:
and Critical Voices Network Ireland. See: http://www.criticalvoicesnetwork.com/
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- Intervoice Congress 202131/08/2021 - 7:18 PM
- BBC Breakfast: Jacqui and Rai talking about Hearing Voices on TV18/07/2021 - 8:07 PM
- Jasper Gibson & Jacqui Dillon in conversation at AD4E Festival05/05/2021 - 3:37 PM
- Jasper Gibson and Jacqui Dillon, In Conversation – Fiction about Psychosis: Impact, ethics, effects05/05/2021 - 2:45 PM