Open Letter to Oprah Winfrey in response to the programme about “The 7-Year-Old Schizophrenic”
Updated 04/11/2009
19th October 2009
Open letter to Oprah Winfrey in response to her program about “The 7-Year-Old Schizophrenic”
This is an open letter addressed to Oprah Winfrey and intended to be seen by the public through newspapers and other media, such as a letter to the editor, or included in websites, blogs, Facebook etc.
This is where you come in, please circulate this letter as widely as you can. It would be helpful if you copied me into any email you send, so I can keep track of where it is being posted. Also if the letter is published anywhere online or elsewhere, please let me know.
If you want to add your support, send me your name and some details about who you are and where you live. The more people who sign up the better. You can do this by adding your comments and details to the comment box at the bottom of the page.
Best wishes and my heartfelt thanks for the many suggestions and messages of support.
You can see the program about Jani and the accompanying article here
You can download a copy of the open letter here
Paul Baker
Introduction: This letter has been written in response to the Oprah Winfrey programme about Jani "The 7-Year-Old Schizophrenic” broadcast on the 6th October 2009. We want to tell you about an alternative and more empowering approach to the experience of hearing voices. To date 151 members of the mental health community from 19 countries around the world, including voice hearers, relatives, citizens, academics and educators, psychiatrists, therapists, psychologists, nurses and researchers have been moved to sign this letter. Such is the level of concern we feel about Jani.
Dear Oprah
We are writing this letter in response to your programme about “The 7-Year-Old Schizophrenic”. This concerned Jani, a child who hears voices, and was broadcast on the 6th October 2009.
We do so in the hope we can provide a more hopeful and positive alternative to the generally pessimistic picture offered by the members of the mental health community featured in the programme, and in the accompanying article on your website.
What upset us most and moved us to write the letter, is that, as a result of the program, parents of children who have similar experiences to Jani will be left with the impression that they are powerless and will not be able to do anything constructive to help their children to come to terms with their experience of hearing voices.
For it is simply not true that nothing can be done.
We say this because we have been researching and working with adults and children like Jani and their parents for the last twenty years, and in doing so have reached very different conclusions from the ones reported on your program.
We write this letter primarily for parents and carer givers, in the hope that it will enable them to develop a new and more empowering way of thinking about their children´s experiences, and that it will help them to find ways to help those children with their emotional development and with recovering from being overwhelmed by hearing voices.
Unfortunately, there is very little practical advice available about children who hear voices which addresses the needs of parents or other members of the family. This is a shame because they are the most important form of support to such children. So, we want you to know that there are some simple commonsense things that parents can do to help children who hear voices - even children in seemingly hopeless situations, like Jani.
We would like to make the following observations:
One of our founding members, Dr. Sandra Escher from the Netherlands, is an expert on the issue of children who hear voices. She has spent the last fifteen years talking to children who hear voices, and to their parents and carer givers. To date, on this issue, Sandra has carried out the most detailed and thorough research in the world. As a result of her work she offers a new perspective on what troubling voices may represent, and how parents can help a child cope if he or she hears voices.
First of all, from the research carried out into the experience of adults and children who hear voices it has become apparent that::
Several large-scale population (epidemiological) studies have shown that about 4 % of the population hear voices. Of this 4%, about 30% seek assistance from mental health services. Amongst children, however, even more hear voices (8%), and as with adults, about 30% are referred to the mental health services.
This means that there are apparently many more people who hear voices who do not require the support of mental health services than those who do. This is because the majority can cope with their voices and function well in everyday life.
Unfortunately, most of the information that we have about the experience of hearing voices comes exclusively from research with patients: people who obviously cannot cope with the voices and needed help. These are people who feel that the voices made them feel powerless and who were overwhelmed by them. This is the case for research about adults and children who are hearing voices.
However, in our research we found that a common theme in both groups (adults and children) is the high percentage of traumatic experiences that have been the trigger for hearing voices. In adults, around 75% began to hear voices in relationship to a trauma or situation that made them feel powerless. Examples of the kinds of traumas that trigger voices include the death of a loved one, divorce, losing a job, failing an exam, but also longer lasting situations like being physically, emotionally or sexually abused.
The percentage of traumatic experience found as the trigger to hearing voices was even higher amongst children. It stood at 85%, with some traumas specifically related to childhood. These traumas might include being bullied by peers or teachers, or being unable to perform at a certain level at school. Another commonly reported traumatic incident related to hearing voices was being admitted to a hospital for a long time due to a physical illness.
Generally, our research indicates that hearing voices is a reaction to a situation or a problem the child or young person cannot cope with. Voices act as messengers and it may well be a mistake to try to kill the messenger - for instance through administering medication.
Another striking finding is that what the voices say often indicates the problem which troubles the child, but in an elliptical manner. Take just one example: 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.
In Jani's case, has anyone tried to establish why 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? Are there reasons behind this? Furthermore, why did she want people to call her "Blue-Eyed Tree Frog" and "Jani Firefly".
Is this something she associated with safety, and if so why?
Our research also revealed that when full attention was given to the problems facing the child, he or she was able to establish a more constructive relationship with the voices. As a result children became less afraid of their voices. When a child is able to consider the problems that are at the root of his or her distress, and with the emotions and feelings involved, the child is no longer preoccupied with the voices.
Recently, Sandra conducted a three-year follow up study on eighty children who heard voices, aged between 8 and 19. Half of this group received mental health care because of their voices. However, the other half were not given any special care at all. She interviewed the children four times, at yearly intervals. By the end of the research period 60% of the children reported that the voices had disappeared.
Of course figures and statistics like this do not directly relate to Jani. But the overall message is that the chance that the voices might disappear are quite high.
We saw that when children have problems which bring on the experience of hearing voices, their ability to learn to cope with their voices is inhibited. However, if the problems were dealt with or the child’s situation changed - for example, because of changing schools - the voices disappeared.
It is important that we appreciate that the desire to make the voices disappear is a goal of the mental health care services and not necessarily that of the children themselves. There are some children who did not want to lose their voices. This is OK, for the most significant thing is that the voices no longer remain at the center of their attention. This is because, as the relationship with the voices change and became more positive, instead of hindering the child the voices start to take on an advisory role. If children find within themselves the resources to cope with their voices, and the emotions involved with hearing them, then they can begin to lead happier and more balanced lives.
The most important element in the process of positively changing a child's relationship with his or her voice is support from the family. Unfortunately, our research has shown that being in the mental health care system had no positive effect on the voices. However, we did find that what had a positive influence on how the child coped with hearing voices was being referred to a psychotherapist who accepted the reality of the voices and was prepared to discuss their meaning with the child.
We also saw that ‘normalizing’ the experience can help parents to deal with the voices. Try not to think of it as a terrible disaster but rather as a signal for something that troubles your child and which can be resolved.
On the other hand, if parents cannot accept that hearing voices is fairly normal, but believe only that it is a symptom of an illness, and are afraid of them, then the child naturally picks up this feeling. Imagine for a moment if you were the child and were afraid of the voices, and when you looked for support from your parents you found that they were even more afraid of the voices than you. Obviously, this would put you under great pressure and probably mean that you would become reluctant to talk about your experiences at all.
There is a second problem. If a person is afraid of the voices then he or she can become obsessed simply by the fear of them. If one is distressed and anxious one cannot listen very well to the story a child tells about his or her experiences. This means that a sympathetic other may fail to pick up on the related emotions and problems that the voices represent.
In our experience, what helps children the most is a systematic approach to understanding the voices. So, in order to help we have developed an interview to help map the experience. This can be used as a way to understand the stress the child is under, and then to work together to find solutions for the problems raised by the experience of hearing voices.
We would like to offer this 10-point guide for parents, indicating what they can do if their 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, do they have names, what they say, etc.
3. Let your child know that lots of children hear voices and that usually they go away after a while.
4. Even if the voices do not disappear your child might learn to live in harmony with his or her voices
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 trying to fix those problems. Think back to when the voices first started. When did the voices arise for the first time? What was happening to your child when the voices first appeared? Was there anything unusual or stressful that might have occurred?
7. If you think you need outside help, find a therapist who is prepared to accept your child's experience 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 around them who accept the experience as part of who their child is. You can do this too!
In conclusion we would like to stress that, in our view, labeling a seven-year-old child as schizophrenic and subjecting her to powerful psychotropic medication and periodic hospitalization is unlikely to help resolve her problems with voices. Indeed, the opposite is most probable: Jani will simply become more powerless when it comes to finding ways to cope with her voices.
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 kind of treatment Jani receives is the only one available. If this is the case then there will be children who will be subjected to an unnecessary lifetime in psychiatric care because their families believe there are no alternatives. It is very important to recognise that hearing voices, in itself, is not a sign of psychopathology - and - voice hearers who are patients can be helped to recover from their problems by being supported in developing their own ways of coping with their emotions.
We hope you will give consideration to the possibility of making a future program showing the other side of the story, one of hope, optimism and with a focus on recovery. Perhaps you could make a program about a child with similar voice experiences to Jani, who has been helped to come to terms with her or his voices and to discuss with the child, parents and therapists how this was achieved? If there is anyway 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
Signed by 151 people from 19 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, B.A. (Combined Honours) PGCE Chair : 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), The 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, The 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 Sevice, England, UK
Karen Taylor RMN, director Working to Recovery, Scotland, UK
Bill George, MA, PGCE, Member of the Anoiksis Think Tank, The 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 HearingVoices Project advisory group. England, UK
Helen Sheppard, AMHP, West Yorkshire, Engalnd, 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
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 Ppsychologist 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
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 Vanessa Jackson Healing Circles, Inc. , USA
Dr. Julie Arthur Kirby Supporter of INTERVOICE and Senior Lecturer, UK
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Peter Bullimore Expert by experience, Asylum Associates, UK
Further information:
INTERVOICE - The international community for hearing voices.
Working across the world to spread positive and hopeful messages about the experience of hearing voices.
We have found there are many people who hear voices, yet are not troubled by them or have found their own ways of coping with them outside of psychiatric care. This is very significant as it shows you can hear voices and remain healthy.
However, there are also significant numbers of voice hearers who are overwhelmed by the negative and disempowering aspects of the experience. Many are diagnosed as having a serious mental health problem such as schizophrenia – a harmful and stigmatizing concept, in our eyes.
The experience of hearing voices prevents some people from living a fulfilled life in society (especially those in psychiatric and social care) and can lead to having a very poor quality of life. We seek to enable voice hearers troubled by their experience to change their relationship and attitude to their voices and to take up their lives again. We also want to ensure that our innovatory approach is better known by professionals, family members and friends.
We have spent the last 20 years trying to better understand why some people can cope with the experience and others can’t. We have discovered that those people who are not able to cope with their voices, on the whole have not been able to cope with the traumatic events that lay at the roots of their voice hearing experience.
Many voices can be unthreatening and even positive. “It’s wrong to turn this into a shameful problem that people either feel they have to deny or to take medication to suppress.” - Professor Marius Romme
See articles about our work with children here:
Silencing unwelcome voices in children, The Guardian, 22/11/2001
A psychosocial therapist in Holland has adapted an innovative approach to voice hearing to help very young children dispel the imaginary friends that become realistic foes. Read article here
'She was like a personal coach': An account of hearing voices as a child, The Guardian, 16/11/2001. Read article here
Most children hearing voices stop within three years, Royal College of Psychiatry, 03/09/2002. Read article here
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I want to add my support for the letter to Oprah Winfrey and to the work you do in the Interational community for hearing voices. I think what you do is fantastic and I am moved by how many people want to change the negative stereotypes that come with schizophrenia and hearing voices. I have forwarded the facebook message with the letter to Oprah to as many people as possible.
I am 26 years old, live in Sweden and I am interested in the work you do as my sister hears voices and I will do all I can to understand more about it. Reading the letter to Oprah helped improve my understanding and I really appreciate that, and I am so pleased to know there are people out there working to educate society about this.
Best regards
Jane
I facilitate the Social Interest group at Colorado Recovery. It quickly evolved into a support group for the clients at this organization, and it is the best attended group at CR! Kinda cool! I'm also developing a private practice for psychotherapy to work primarily with psychiatric consumers/survivors, and people who hear voices. In addition, it is my intention to start a Hearing Voices Support group in Boulder, Colorado USA, although I am just beginning to understand the ins and outs of funding...lots of new and mind boggling stuff to me! Until I obtain funding, I will hold one free support group per month, starting sometime before the end of this year.
I believe you and I have connected before via email. I wanted to attend the Conference and Workshop on developing hearing voices support groups...but I could not afford it. I ordered the DVD by Working to Recovery instead and it is very helpful! Also, I just ordered Hearing Voices: A Common Human Experience. I'm trying to educate myself as much as I can. My heart is totally invested!
Thanks for your time, and thanks for all the work you do!
All my best
Monika
I very much endorse all the things said in your letter.
With greatest respect,
John
I'm an RMN and community mental health nurse who practices in the Kings Cross area of London. I facilitated a hearing voices group for 10 years and am a member of the London Hearing Voices Project advisory group.
I am working on my project of a documentary in France and in Europe about "schizophrenia" and hearing voices.
Thank you again for your work.
Best regards
From what I have seen, the letter is brilliant, excellent and sensitive.
It’s a great letter, and should maybe circulated round the American Psychiatric Association. Please add me to the signatories
Many kind regards from Lone
I hope Oprah will take an interest in our approach to "mental illness" and that Jani will be protected from the power of the psychiatric establishment.
Thank you!
Maria
Thanks so much for this excellent letter.
I am the mother of a voice hearing daughter who suffered a lot, but who has recovered. She is now 13 years old and she has been freed of the voices at the age of 11. Thanks to the help and support of Dr Escher, I finally found an alternative therapist who succeeded in getting the voices away within 9 weeks. "Regular" therapy did not have any effect during 1.5 years.
Kind regards, Karin Daniels