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The Hearing Voices Movement: In Response to a Father – ‘My Daughter, the Schizophrenic’

Originally posted on: http://www.madinamerica.com/

There was a heart-breaking and disturbing story in yesterday’s Guardian newspaper entitled, My Daughter, the Schizophrenic’, (1) which featured edited extracts from a book written by the father of a child called Jani. He describes how Jani is admitted into a psychiatric hospital when she is 5, diagnosed with schizophrenia when she is 6 and by the time she is 7, she has been put on a potent cocktail of psychotropic medications:

”Jani is on three medications: Clozapine, lithium and Thorazine (known in the UK as Largactil). This combination has been the most successful. Are her hallucinations completely gone? No, but as she will tell us, they are not bothering her. It’s like having the TV on in the background, volume turned down, while you’re doing something, and every so often you look up at the screen to see what 400 the cat and other hallucinations are doing. They remain on Jani’s periphery, but she can still function in our common reality.”(2)

This harrowing description exemplifies the worst excesses of responding to a deeply troubled child’s distress as if it were a pathological illness, with the full psychiatric arsenal. What ensues can only be described as an account of psychiatric, human rights abuse.

If only Jani and her family were offered alternative kinds of help such as that developed by Voice Collective, (3) a London-wide project set up to support children and young people who hear, see and sense things others don’t. Voice Collective works with children, young people & families, and with professionals and organisations offering a whole range of services including peer support groups, so young people can meet with other young people with similar experiences, creative workshops, 1-2-1 support around making sense of voices and finding coping strategies, an online support forum. Voice Collective also offers a range of support services to families as well as supporting schools, social services, child and adolescent mental health services and other youth agencies to work with children & young people who have these experiences.

As one parent who has been supported by Voice Collective said:

‘You have brought us ‘normality’ within these experiences. You have taught us that with the appropriate support young people can lead happy and successful lives. You recognise the love we have for our children and have taught us how to support them”.

– Mother of a 12 year old           

How different things could be for Jani, her family and countless other children and families around the world if there were greater awareness that such humane and healing alternatives exist; approaches which help without doing more harm.

Questions, comments and/or reflections are welcome on this website or via Twitter @JacquiDillon

Jacqui Dillon’s website: http://www.jacquidillon.org

(1)  http://www.guardian.co.uk/society/2013/jan/19/my-daughter-the-schizophrenic

(2)  January First: A Child’s Descent Into Madness And Her Father’s Struggle To Save Her, by Michael Schofield, published on 1 February by Hardie Grant Books.

(3)  http://www.voicecollective.co.uk/

 

Jani and her family originally appeared on the Oprah show in 2009. Many of us within the Hearing Voices Movement were so saddened and disturbed by Jani’s treatment that we wrote an open letter to Oprah Winfrey. Here is the open letter from INTERVOICE – the International Network for Training, Education and Research into Hearing Voices – an international organisation dedicated to spreading positive and hopeful messages about the experience of hearing voices across the world, reprinted again.

Dear Oprah,           

We are writing in response to your programme about “The 7-Year-Old Schizophrenic”, which concerned Jani, a child who hears voices, which was broadcast on the 6th October 2009. We hope to correct the pessimistic picture offered by the mental health professionals featured in your programme, and in the accompanying article on your website. What upset us most and moved us to write to you, is that parents will have been left with the impression that they are powerless to help their children if they hear voices. We are also concerned that the programme gave the impression that children with voices must be treated with medication. We note that the medications mentioned in your programme all have very serious side effects. (For example, antipsychotics such as Haldol cause neuronal loss, block the dopamine pathways in the brain required to processes rewarding stimuli, and carry a high risk of neurological and metabolic side effects such as Parkinsonianism and diabetes. Their effects on the developing brain are largely unknown and, in our view, they should only be given to children as a treatment as absolutely last resort.)

We have been researching and working with adults and children like Jani for the last twenty years, and our work has led us to very different conclusions from those reached by the mental health professionals on your programme. One of our founding members, Dr. Sandra Escher from the Netherlands, has spent the last fifteen years talking to children who hear voices, and to their parents and carers. This work is the most detailed and thorough investigation of children who hear voices carried out to date [1, 2]. The most important findings from recent research on hearing voices are as follows:

Prevalence of voice hearing in adults and children

Recent large-scale population (epidemiological) studies have shown that about 4-10 % of the adult population hear voices at some time in their lives [3-5]. Only about a third seek assistance from mental health services. Amongst children, the proportion hearing voices may be even higher [6] and, again, only a minority are referred for treatment. Hence, it is wrong to assume that voice hearing is always a pathological condition requiring treatment.

Psychological mechanisms

Everyone has an inner voice. Psychologists call this phenomenon ‘inner speech’ and it is an important mechanism that we use to regulate our own behaviour (plan what we want to do, direct our own actions). Child psychologists have long understood that this ability begins to develop at about 2-years of age [7, 8]. Hearing voices seems to reflect some kind of differentiation in the mind’s ability to tell the difference between inner speech and the heard speech of other people [9, 10].

Link to trauma

A common theme in research with both adults and children is the relationship between hearing voices and traumatic experiences. In adults, around 75% begin to hear voices in relationship to a trauma or situations that make them feel powerless [11-13], for example the death of a loved one, divorce, losing a job, failing an exam, or longer lasting traumas such as physical, emotional or sexual abuse. The role of trauma was identified in 85% of the children we have studied, for example being bullied by peers or teachers, or being unable to perform to the required level at school, or being admitted to a hospital because of a physical illness. In short, our research has shown that hearing voices is usually a reaction to a situation or a problem that the child is struggling to cope with.

Voices have a meaning. A related and equally striking finding is that the voices often refer to the problem that troubles the child, but in an elliptical manner. To take just one example from the children studied by Sandra Escher:

The voices told an 8-year-old boy to blind himself. This frightened his mother. But when we discussed whether there was something in the life of the boy he could not face, she understood the voices’ message. The boy could not cope with his parents’ problematic marriage. He did not want to see it.

We wonder whether anyone has attempted to establish why, in Jani’s case, the rat is called “Wednesday”, why the girl is called “24 Hours”, and why is the cat called “400″? What do these mean for her? Why does Jani want people to call her “Blue-Eyed Tree Frog” and “Jani Firefly”?

Good outcomes without treatment

Recently, Sandra Escher conducted a three-year follow up study of eighty children who heard voices, aged between 8 and 19 [1]. Half received mental health care but the other half were not given any specialist care at all. The children were interviewed four times, at yearly intervals. By the end of the research period 60% of the children reported that their voices had disappeared. Very often, this was because the triggering problems were dealt with or because the child’s situation changed – for example, following a change of schools.

Helping children who hear voices: Advice to parents

It is important to appreciate that the desire to make voices disappear, although usually the goal of the mental health care services, is not necessarily in the best interests of children. Some children do not want to lose their voices. If children can find within themselves the resources to cope with their voices, they can begin to lead happier and more balanced lives.

The most important element in this process is support from the family. Unfortunately, we have found that mental health services often fail to have a positive effect on children’s voices, because they foster fear rather than coping. However, we have found that referral to a psychotherapist who is prepared to discuss the meaning of voices is often helpful.

It is important that parents do not assume that hearing voices is a terrible disaster but instead regard it as a signal that something is troubling their child. If parents assume that voices are a symptom of an illness, and are afraid of them, the child will naturally pick up on this feeling. This can lead to a self-defeating cycle in which the child becomes fearful and obsessed by the voices.

We would like to offer this 10-point guide for parents, indicating what they can do if a child tells them that he or she hears voices:

1. Try not to over react. Although it is understandable that you will be worried, work hard not to communicate your anxiety to your child.

2. Accept the reality of the voice experience for your child; ask about the voices, how long the child has been hearing them, who or what they are, whether they have names, what they say, etc.

3. Let your child know that many other children hear voices and that usually they go away after a while.

4. Even if the voices do not disappear your child may learn to live in harmony with them.

5. It is important to break down your child’s sense of isolation and difference from other children. Your child is special – unusual perhaps, but really not abnormal.

6. Find out if your child has any difficulties or problems that he or she finds very hard to cope with, and work on fixing those problems. Think back to when the voices first started. What was happening to your child at the time? Was there anything unusual or stressful occurring?

7. If you think you need outside help, find a therapist who is prepared to accept your child’s experiences and work systematically with him or her to understand and cope better with the voices.

8. Be ready to listen to your child if he or she wants to talk about the voices. Use drawing, painting, acting and other creative ways to help the child to describe what is happening in his or her life.

9. Get on with your lives and try not to let the experience of hearing voices become the centre of your child’s life or your own.

10. Most children who live well with their voices have supportive families who accept the experience as part of who their child is. You can do this too!

Conclusion

In conclusion we would like to stress that, in our view, labelling a seven-year-old child as schizophrenic and subjecting her to powerful psychotropic medication and periodic hospitalisation is unlikely to help resolve her problems. Indeed, the opposite is most probable: children treated in this way will simply become more powerless. Because your well respected, award winning show reaches out to so many people, we are concerned that there will be many viewers who will be left with the impression that the treatment Jani receives is the only method available. We fear that this may cause some children to be subjected to an unnecessary lifetime in psychiatric care. It is very important to recognise that hearing voices, in itself, is not a sign of psychopathology.

We hope you will give consideration to the possibility of making a future programme showing the other side of the story, one of hope, optimism and with a focus on recovery. Perhaps you could make a programme about a child with similar voice experiences to Jani, who has been helped to come to terms with her or his experiences and to discuss with the child, parents and therapists how this was achieved? If there is any way we could help make this happen, please contact us.

We look forward to hearing from you on the issues raised in our letter.

Yours sincerely,

Paul Baker

INTERVOICE coordinator

(Letter re-edited with the kind assistance of Professor Richard Bentall)

Selected bibliography:

1.         Escher, S., et al., Independent course of childhood auditory hallucinations: A sequential 3-year follow-up study. British Journal of Psychiatry, 2002. 181 Suppl 43: p. 10-18.

2.         Escher, S., et al., Formation of delusional ideation in adolescents hearing voices: A prospective study. American Journal of Medical Genetics (Neuropsychiatric Genetics), in press.

3.         Tien, A.Y., Distribution of hallucinations in the population. Social Psychiatry and Psychiatric Epidemiology, 1991. 26: p. 287-292.

4.         van Os, J., et al., Strauss (1969) revisited: A psychosis continuum in the normal population?Schizophrenia Research, 2000. 45: p. 11-20.

5.         van Os, J., et al., Prevalence of psychotic disorder and community level of psychotic symptoms: An urban-rural comparison. Archives of General Psychiatry, 2001. 58: p. 663-668.

6.         Poulton, R., et al., Children’s self-reported psychotic symptoms and adult schizophreniform disorder: A 15-year longitudinal study. Archives of General Psychiatry, 2000. 57: p. 1053-1058.

7.         Berk, L.E., Why children talk to themselves. Scientific American, 1994: p. 61-65.

8.         Vygotsky, L.S.V., Thought and language. 1962, Cambidge, Mass: MIT Press.

9.         Alleman, A. and F. Laroi, Hallucinations: The science of idiosyncratic perceptions. 2008, Washington: American Psychological Association.

10.       Bentall, R.P., Madness explained: Psychosis and human nature. 2003, London: Penguin.

11. Read, J., et al., Sexual and physical abuse during childhood and adulthood as predictors of hallucinations, delusions and thought disorder. Psychology and Psychotherapy: Theory, Research and Practice, 2003. 76: p. 1-22.

12. Hammersley, P., et al., Childhood trauma and hallucinations in bipolar affective disorder: A preliminary investigation. British Journal of Psychiatry, 2003. 182: p. 543-547.

13. Shevlin, M., M. Dorahy, and G. Adamson, Childhood traumas and hallucinations: An analysis of the National Comorbidity Survey. Journal of Psychiatric Research, 2007. 41: p. 222-228.

Signed by 155 people from 20 countries, listed in order of the time they were received.

Dr. Sandra Escher, – Board member of INTERVOICE, The Netherlands

Professor Marius Romme, psychiatrist, MD, PhD, President of INTERVOICE, The Netherlands

Dirk Corstens, Social psychiatrist and psychotherapist, Chair of INTERVOICE, The Netherlands

Paul Baker, coordinator of INTERVOICE, Spain

Jacqui Dillon, consultant trainer and voice hearer, chair of Hearing Voices Network England, board member of INTERVOICE, UK

Ron Coleman, consultant trainer and voice hearer, board member of INTERVOICE, UK

Hywel Davies, chair of Hearing Voices Network Cymru (Wales), honorary board member of INTERVOICE; UK

Amanda R. E. Aller Lowe, MS, LPC, LCPC, QMRP – Agency Partner, Communities In Schools & Area Representative, The Center for Cultural Interchange, Aurora, Illinois, INTERVOICE supporter, USA

Adrienne Giacon, Secretary and Hearing Voices Network Support group facilitator Hearing Voices Network Aotearoa, INTERVOICE member, New Zealand

Dr John Read, Associate Professor, Psychology Department, The University of Auckland, Auckland, New Zealand

Ann-Louise S. Silver, MD, founder and past president, International Society for the Psychological Treatments of Schizophrenia and Other Psychoses (www.isps-us.org), ISPS-US, USA

Matthew Morrissey, MA, MFT, Board Member, MindFreedom International, Northern California Coordiator, ISPS-US, San Franciso, USA

Irene van de Giessen, former voice hearer and foster-daughter of Willem van Staalen and Willem van Staalen, voice integrating foster-father of Irene, The Netherlands

Olga Runciman, consultant trainer and voice hearer (BSc psychiatric nurse and graduate student in psychology), INTERVOICE member, Denmark

Professor Wilma Boevink, Chair of Stichting Weerklank (Netherlands Hearing Voices Network), Professor of Recovery, Hanze University; Trimbos-Institute (the Dutch Institute of Mental Health and Addiction), Netherlands

Marian B. Goldstein, voicehearer, (fully recovered thanks to trauma-focussed therapy, the opportunity to make sense of the voices) INTERVOICE supporter, Denmark

Professor Dr J. van Os, Department of Psychiatry and Neuropsychology, Maastricht University Medical Centre, Maastricht, INTERVOICE supporter, Netherlands

Virginia Pulker, Mental health Occupational Therapist with young people with psychosis, recovery promoter, HVN Australia, Northern Ireland and England. INTERVOICE supporter, UK/Australia

Professor Richard Bentall, PhD, Chair Clinical Psychology, University of Bangor, INTERVOICE supporter, Wales, UK

Alessandra Santoni, professional working in a Mental Health Service of Milan, voice hearer and facilitator of a hearing voices group, INTERVOICE supporter,Italy

Geraldo Peixoto and Dulce Edie Pedro dos Santos, São Vicente – Est. São Paulo – INTERVOICE supporter, Brasil

Joanna & Andrzej Skulski, INTERVOICE supporters, Polska

Darby Penney, INTERVOICE supporter and President, The Community Consortium, Inc., Albany, NY, USA

Jacqueline Hayes, researcher at Manchester University about hearing voices in ‘non-patients’ and therapist, UK

Phil Virden, MA, MA, Executive Editor, Asylum Magazine, UK

Matthew Morris, Mental Health Locality Manager, East Suffolk Outreach Team, Suffolk Mental Health Partnerships NHS Trust, INTERVOICE supporter, UK

Ros Thomas, Young Peoples Worker, Gateway Community Heath, Wodonga Victoria, INTERVOICE supporter, Australia

Dr. Rufus May Dclin/ Consultant Clinical Psychologist, INTERVOICE supporter, UK

Dr. Simon Jones, INTERVOICE supporter, UK

Dr. Louis Tinnin, Psychiatrist, Morgantown, West Virginia, USA

Linda Gantt, PhD, Intensive Trauma Therapy, Inc., USA

Burton Norman Seitler, Ph.D., New Jersey Institute for training in Psychoanalysis and Psychotherapy, Child and Adolescence Psychotherapy Studies

Ron Bassman, PhD., Founding member of International Network Towards Alternatives for Recovery (INTAR), Past president of The National Association for Rights Protection and Advocacy, USA

Michael O’Loughlin, Adelphi University, NY, USA

Dorothy Scotten, Ph.D., LCSW, USA

Marilyn Charles, Ph.D., The Austen Riggs Center, USA

Bex Shaw, Psychotherapist, London, UK

Ira Steinman, MD, author of “TREATING the ‘UNTREATABLE’ : Healing in the Realms of Madness”, USA

Mike Lawson, Ex Vice Chair National MIND UK 1988-1992, INTERVOICE supporter, UK

Dr. Dan L. Edmunds, Ed.D., B.C.S.A., International Center for Humane Psychiatry, USA

Ron Unger LCSW, Therapist, USA

Daniel B Fisher (Boston, MA): Person who recovered from what is called schizophrenia, Executive Director National Empowerment Center; National Coalition of Mental Health Consumer/survivor Org., member of Interrelate an international coalition of national consumer/user groups, community psychiatrist, Cambridge, Mass., USA

Mary Madrigal, USA

Paul Hammersley, University of Manchester, INTERVOICE supporter, UK

Phil Benjamin, mental health nurse and voices consultant, Australia

Eleanor Longden, Bradford Early Intervention in Psychosis Service, England, UK

Karen Taylor RMN, director Working to Recovery, Scotland, UK

Bill George, MA, PGCE, Member of the Anoiksis Think Tank, Netherlands

Dr Andrew Moskowitz, Senior Lecturer in Mental Health, University of Aberdeen, Scotland, UK

John Exell, BA(Hons), Dip Arch, voice-hearer, sculptor, artist, writer, poet, UK.

Tineke Nabben, a voice hearer who has learned to cope with her voices and student, learning to help other children and parents to cope with their voices. Germany

Marcello Macario, psychiatrist, Community Mental Health Centre of Carcare, Italy, INTERVOICE supporter, Italy

Ian Parker, Professor of Psychology, co-director of the Discourse Unit, Manchester Metropolitan University, England, UK

David Harper, PhD, Reader in Clinical Psychology, School of Psychology, University of East London, England, UK

Wakio Sato, representative of the Hearing Voices Network – Japan. President of the Japanese Association of Clinical Psychology. The representative of an NPO named “Linden” for community mental health in Konko town, Okayama prefecture, Japan

Suzette van IJssel, Ph.D., spiritual counsel and voice hearer, Utrecht, The Netherlands

Jeannette Woolthuis, psycho-social therapist working with children hearing voices, The Netherlands

Dr. Louise Trygstad, Professor Emerita, University of San Francisco School of Nursing, USA

Erik Olsen, Board member ENUSP European Network of Users (x)-users and Survivors of Psychiatry and Executive Committee in European Dsability Forum (EDF)

Astrid Zoetbrood, recovered from psychosis and voices, the Netherlands

Christine Brown, RMN, Hearing Voices Network Scotland, INTERVOICE supporter, UK

Rachel Waddingham, Manager of the London Hearing Voices Project (inc. Voice Collective: Young People’s Hearing Voices Project), trainer and voice-hearer, UK

Joel Waddingham, Husband and supporter of someone who hears voices, sees visions and has other unusual experiences, UK

Professor Robin Buccheri, RN, MHNP, DNSc, University of San Francisco, CA, USA

Jørn Eriksen, Board member of INTERVOICE, the Danish Hearing Voices Network and The International Mental Health Collaboration Network, Denmark

Douglas Holmes, voice hearer working in a Mental Health Service in Darlinghurst, Sydney, and facilitator of a hearing voices group, INTERVOICE supporter, Australia

Matthew Winter, Student Mental Health Nurse and INTERVOICE supporter

Anneli Westling, Relative of a voice hearer from Stockholm, Sweden

Lia Govers, recovered voice hearer, Italy

Molly Martyn, MA in Clinical Mental Health, Hearing Voices Network of Denver, USA

Tsuyoshi Matsuo, MD, INTERVOICE supporter, Japan

Janet M. Patterson RN, BSN, USA

Odette Nightsky, Sensitive Services International, Australia

Barbara Belton, M.S., M.S. trauma survivor who has recovered and former behavioral health professional, USA

Luigi Colaianni, PhD sociologist, researcher, Community Mental Health Centre, Milano, Italy

Teresa Keedwell, Voice Hearer Support Group, Palmerston North, New Zealand

Maria Haarmans, MA, Canadian Representative INTERVOICE, Canada

Ami Rohnitz, Voice hearer, Sweden

Sharon Jones, University of York, INTERVOICE Supporter, England, UK

Gail A. Hornstein, PhD, Professor of Psychology, Mount Holyoke College, USA

Siri Blesvik, INTERVOICE supporter, Norway

Lynn Seaton, mental health nurse, Scottish Hearing Voices Network and INTERVOICE supporter, UK

Rozi Pattison, Clinical Psychologist, CAMHS, Kapiti Health Centre, PARAPARAUMU, New Zealand

Suzanne Engelen, Experience Focussed Counselling Institute (efc) and member of INTERVOICE. She is an expert by experience and also works for Weerklank (Dutch Hearing Voices Network) and the TREE project, The Netherlands

Susie Crooks, Voice hearer, Mad & Proud, Hawkes Bay, New Zealand

Lloyd Ross, Ph.D., FACAPP., P.A., New Jersey, USA

Catherine Penney, RN, USA

Nancy Burke, PhD, Northwestern University Medical School, Chicago Center for Psychoanalysis, USA

Nels Kurt Langsten, M.D., USA

Michael S. Garfinkle, PhD, New York, USA

Andy Phee RMN, community mental health nurse, Kings Cross, London ,facilitated a hearing voices group for 10 years, member of the London Hearing Voices Project advisory group. England, UK

Helen Sheppard, AMHP, West Yorkshire, England, UK.

Dr Gillian Proctor, Clincial Psychologist. Bradford, UK

Jane Forrest, sister of voice hearer, Sweden

Tami Williams, Ph.D., Licensed School Psychologist, Clinical Psychologist, Psychiatric Survivor, USA

Lone Jeppesen, Works as a social teacher in an institution with a lot of voice hearers and the diagnosis of schizophrenia, INTERVOICE supporter, Denmark

Judith Haire, author and voice hearer, Ramsgate, Kent, England, UK

Peter Lehmann, Peter Lehmann Publishing, Berlin, Germany / Eugene, OR / Shrewsbury, UK

Sigari Luckwell, Senior Clinical Psychologist, Bunbury Clinic, INTERVOICE supporter, Western Australia

Will Hall, voice hearer with schizophrenia diagnosis, founder of Portland hearing voices, host of madnessradio.net, USA

Richard Gray, specialist mental health support worker, random hearer/ seer of voices, visions and past lives. HVN NZ treasurer. New Zealand

Jacqueline Roy, Department of English, Manchester Metropolitan University, England, UK

Dr Mike Jackson, Consultant Clinical Psychologist, Betsi Cadwaldr University Health Board, North Wales

Frank Blankenship, Chair of Affiliate Support Committee, MindFreedom International, MindFreedom Florida Gainesville, Florida USA

Dorothy Dundas, psychatric survivor, MA, USA

Sigrun Tømmerås, mental health acitvist/ childhood abuse survivor, Norway

Karyn Baker BSW, MSW, RSW, Executive Director, Family Outreach and Response Program, Toronto, Canada

Monika Hoffmann psychologist and co-founders of the “NeSt”, the German Hearing Voices Network, Germany

Paul Beelen connected to the INTERVOICE network and voice hearer, The Netherlands

Rossa Forbes Holistic Schizophrenia, North America

Teresa Keedwell Voice Hearer Support Group, Palmerston North New Zealand

Yutaka Fujimoto Psychologist, Tokyo Metropolitan Govemment Mental Health and Welfare Cente, vice president of the Japanese Association of Clinical Psychology, member of the Hearing Voices Network Japan. Tokyo, Japan

Cheontell Barnes High support mental health worker and voices group co-facilitator Brighton UK

Yutaka Fujimoto Psychologist, Tokyo Metropolitan Govemment Mental Health and Welfare Cente, vice president of the Japanese Association of Clinical Psychology, member of the Hearing Voices Network Japan. Tokyo, Japan

Pino Pini, Psychiatrist, Mental Health Europe, INTERVOICE supporter, Italy

Ivona Amleh Psychiatrist, Bethlehem Psychiatric Hospital, Palestine

John Robinson, Integrative Therapist (and voice hearer) for the Hearing Voices Project, SE London

Yann Derobert Psychotherapist, France

Indigo Daya , Voices Vic Project Manager, Melbourne, Australia

Stephen McGowan , Early Intervention in Psychosis Lead. Yorkshire and the Humber Improvement Programme, UK

Adam James Editor and award winning journalist, psychminded.co.uk, UK

Tori Reeve, counsellor, member of HVN, Intervoice supporter, UK.

A. C. Sterk MA Psychologist and psychotherapist, director of the Ann Lee Centre community mental health project, and person with previous experience of psychosis. Manchester, UK.

Geoff Brennan Nurse Consultant Psychosocial Interventions for Acute Inpatient Care, Berkshire healthcare NHS Foundation Trust, Co-editor Serious Mental Illness a manual for clinical practice”, UK

Lyn Mahboub voice hearer, trainer, consultant, mother, daughter, student, teacher and, also, one who has navigated the psychiatric service system, Australia

Kristin Hedden, Ph.D. VA Puget Sound Health Care System, Tacoma, Washington, USA 126

Agna Bartels MSc , psychologist and researcher in the University Medical Center Groningen, The Netherlands.

Rita Brooks, BS in Human Services Recovery Consultant, writer and producer of DVD called: The Reality of Recovery, Covington, Kentucky, USA

Angel Moore David Romprey Oregon Warmline, Oregon, USA

Chuck Hughes Corresponding Secretary Los Angeles County Clients Coalition, USA

Amy Sanderson, Bradford Early Intervention in Psychosis Team, UK

Pam Pinder parent of voice hearer, Plymouth, Devon, UK

Gerard van de Willige MSC psychologist and researcher, University Medical Center Groningen, The Netherlands

Mette Askov voice hearer with the diagnosis of schizoprenia and on the road to recovery, INTERVOICE supporter, Denmark

Claire Attwood , Voice hearer and mental health support worker, Isle of Wight. UK,

Alberto Diaz MSc Argentinian psychologist, PhD student in collective health at Universidade Estadual de Campinas, researching mental health, special interest schizophrenia, Campinas, São Paulo, Brazil

Barney Holmes, running a Level 1 Affiliate – MindFreedom, Lancaster, UK

Cindy Highsmith Myron, psychiatric survivor, completely recovered from voice hearing and severe mental illness, mental health professional and life coach for persons with mental illness in a self-directed care program, INTERVOICE supporter, Florida, USA

Mad Hatters of Bath. We are a group of people who have experienced mental extremes, including hearing voices and seeing visions. Bath, England, UK

Karin Daniels, mother of a voice hearing daughter who suffered a lot, but who has now recovered. Maastricht, The Netherlands

Jim Probert, PhD Psychologist, Student Health Care Center, University of Florida, USA

Dr David Lee Clinical Psychologist, Dept of Psychological Therapies, Royal Bolton Hospital, Bolton, Supporter of INTERVOICE, UK

Professor Sue Cowan, Registered Mental Health Nurse and Chartered Health Psychologist, University of Abertay Dundee, Scotland, UK

Paul Harris psychotherapist and support worker based in the UK

Marina Beteva voices hearer for 8-9 years, on medication treatment, Moscow, Russia

Monica Cassani North Carolina, USA

Rikke Bitsch Denmark

Afaf Swaity Nursing Director of Bethlehem Psychiatric Hospital, Palestine

Mary Maddocks MindFreedom Ireland, Ireland

Tania Linden North Lincolnshire Early Intervention Service, UK

Rosemaree Ashford honours psychology student, recovery worker, Richmond Fellowship of WA, Australia

Gemma Hendry Trainee Clinical Psychologist with a specialist interest in Community Psychology and Voice hearing, UK

Erica van den Akker Social worker in Forensic Psychiatry, The Netherlands

Caroline von Taysen psychologist, Netzwerk Stimmenhören, Germany and Normal Difference, Mental Health Kariobangi in Kenya, Germany

Poppy Rollinson Mental Health Nurse, Brighton, UK

Vanessa Jackson Healing Circles, Inc. , USA

Dr. Julie Arthur Kirby Supporter of INTERVOICE and Senior Lecturer, UK

Peter Bullimore Expert by experience, Asylum Associates, UK

Paul Cheminais voice hearer, Bournemouth, UK 159

See: http://www.intervoiceonline.org/news-events/campaigns/open-letter-oprah/dear-opra

 

Demedicalising Misery: Psychiatry, Psychology and the Human Condition.

Demedicalising Misery: Psychiatry, Psychology and the Human Condition. Co-edited with Mark Rapley  and Joanna Moncrieff. Published by Palgrave Macmillan.

Thomas Szasz (1960) suggested that the myth of ‘mental illness’ functions to ‘render more palatable the bitter pill of moral conflict in human relations’. The medicalization of distress enables the mental health professions to manage the human suffering that they are confronted with, and also the suspicion that there is little that they can do to help. But the medicalization of misery and madness renders people unable to comprehend their experiences in ordinary, meaningful terms. In this collection we restore to everyday discourse a way of understanding distress that, unlike contemporary psychiatry and psychology, recognises and respects the essential humanness of the human condition. De-medicalizing Misery is a shorthand term for this project. The book resists the psychiatrization and psychologization of human experience, and seeks to place what are essentially moral and political – not medical – matters back at the centre of our understanding of human suffering.

Notes on Contributors
Preface; R.Dallos
Carving Nature at its Joints? DSM and the Medicalization of Everyday Life; M.Rapley, J.Moncrieff & J.Dillon
Dualisms and the Myth of Mental Illness; P.Thomas & P.Bracken
Making the World Go Away, and How Psychology and Psychiatry Benefit; M.Boyle
Cultural Diversity and Racism: An Historical Perspective; S.Fernando
The Social Context of Paranoia; D.J.Harper
From ‘Bad Character’ to BPD: The Medicalization of ‘Personality Disorder’; J.Bourne
Medicalizing Masculinity; S.Timimi
Can Traumatic Events Traumatise People? Trauma, Madness and ‘Psychosis’; L.Johnstone
Children Who Witness Violence at Home; A.Vetere
Discourses of Acceptance and Resistance: Speaking Out About Psychiatry; E.Speed
The Personal Is the Political; J.Dillon
‘I’m Just, You Know, Joe Bloggs’: The Management of Parental Responsibility for First-Episode Psychosis; C.Coulter & M.Rapley
The Myth of the Antidepressant: An Historical Analysis; J.Moncrieff
Antidepressants and the Placebo Response; I.Kirsch
Why Were Doctors so Slow to Recognise Antidepressant Discontinuation Problems?; D.Double
Toxic Psychology; C.Newnes
Psychotherapy: Illusion With No Future?; D.Smail
The Psychologization of Torture; N.Patel
What Is To Be Done?; J.Moncrieff, J.Dillon & M.Rapley
Figure: Papers Using Term ‘Antidepressant’ On Medline 1957-1965
Index

‘Despite longstanding awareness of the limitations of the medical model when applied to difficulties of human behavior and adjustment, the fields of psychiatry and psychology continue to accede to the pressures of medicine and the drug industry in their conceptualization of these human realities. Ironically, however, this medical model, eager as it is to fit so much of people’s experience into diagnostic categories, is a social construction. This book represents a significant effort to de-mystify, de-medicalize, and reclaim important aspects of the human condition.’ – Kenneth D. Keith, Professor, Department of Psychological Sciences, University of San Diego, USA

 

De-Medicalizing Misery has assembled an impressive cast of leading mental health experts. Together they challenge the simplistic and pessimistic biological model of human distress that has, with eager support from the pharmaceutical industry, dominated the mental health field for far too long. This evidence-based, humane and optimistic book not only explains where biological psychiatry went wrong, it spells out the alternatives.’ – John Read, University of Auckland, New Zealand and Editor of ‘Models of Madness’

 

  ‘The psychiatrist or psychologist is expected to do something for every patient sitting in front of him or her, but how robust is the intellectual basis of psychiatric science when psychiatric ‘diseases’ are merely symptom clusters – clustered by us, not by nature? We are in indeed in the age of the medicalization of everyday life, when Lord Layard, economist and architect of the IAPT programme, can write in the BMJ that ‘mental illness’ has taken over from unemployment as our greatest social problem. But what is the test of ‘mental illness’? In DeMedicalizing Misery the authors examine some of the domains lamentably absent from orthodox psychiatry and psychology training programmes, with their medical model focus, and in so doing raise the IQ of the whole debate. And not just for clinicians.’ – Dr Derek Summerfield, Consultant Psychiatrist & Senior Lecturer, Institute of Psychiatry, King’s College, London, UK.
 

Authors: MARK RAPLEY is Professor of Clinical Psychology at the University of East London, UK. He is the author of The Social Construction of Intellectual Disability, Quality of Life Research and, with Susan Hansen and Alec McHoul, Beyond Help: A Consumers’ Guide to Psychology.
 
JOANNA MONCRIEFF is Senior Lecturer in the Department of Mental Health Sciences at University College London, UK and a Practising Consultant Psychiatrist at the North East London Foundation Trust. She has spent her academic career re-evaluating the nature and efficacy of psychiatric drugs and exploring the history and politics of psychiatry. She is the co-chair of the Critical Psychiatry Network, and has campaigned against the dominance of the biomedical approach to psychiatry, the extension of psychiatric coercion and the influence of the pharmaceutical industry, in alliance with service user groups. She is the author of The Myth of the Chemical Cure (Palgrave Macmillan), A Straight Talking Introduction to Psychiatric Drugs, and numerous papers and book chapters.
 
JACQUI DILLON is the National Chair of the Hearing Voices Network, UK, and a Director of Intervoice – the International Network for Training, Education and Research into Hearing Voices. She is a campaigner, international speaker and trainer specialising in hearing voices, psychosis, dissociation and trauma. She is the co-editor of Living with Voices: An Anthology of 50 Voice Hearers’ Stories of Recovery. She has published numerous articles and papers, is on the editorial board of the journal Psychosis: Psychological, Social and Integrative Approaches and is a member of the collective for Asylum, The Magazine for Democratic Psychiatry.


A role model in the Hearing Voices Movement

For us Jacqui is unique and it is a great pleasure having known her for many reasons personally as well professionally. Jacqui survived terrible abuse and became strong by using her experience to learn from it. She is one of the few people who is able to really understand that the voices are related to her life history and even more important allow herself to feel it. This combination of understanding on a rational and emotional level became her power. This also enables her to be the caring mother of 2 teenage daughters.

As a professional from experience Jacqui is a role model in the Hearing Voices Movement. She has developed a qualitatively very good course in setting up and guiding Hearing Voices Groups. She has helped many individuals to better cope with their voices and their problems in their lives. She is a very good speaker and has a lot to tell about the voice hearing experience and their backgrounds. She has written many very good articles and book chapters. She especially clearly explains the interaction between different consequences of traumatic experiences like hearing voices, dissociation, self harm and eating disorders. She has a lot to give and a lot to teach professionals and also voice hearers. Besides all this she is Chairing the English Hearing Voices Movement and a member of the Board of Intervoice.

Marius Romme & Sandra Escher