When I was admitted to a psychiatric hospital, the clear message I received from the mental health system was that I was ill. Everything that I said and did was caused by my illness. The horrendous abuse which I had disclosed “never happened” – even thinking it did was part of my illness. If the abuse did happen (one psychiatrist did believe me) then, in his words, “Pandora’s box should never have been opened”.
Because I was ill, “I needed to take medication.” The fact that I didn’t want to take medication was “because I was ill.” If I wanted to get better, I “must accept my diagnosis and take medication” and then they would give me welfare benefits and a free bus pass. I wouldn’t ever recover. I would always have this illness. I wouldn’t be able to work. I didn’t know what was best for me. I lacked insight. As mental health professionals, they all knew what was best for me, because they were the experts.
As far as I am concerned, I am not mentally ill. What my abusers did to me was sick. I have had a perfectly natural, human response to devastating experiences. Living with the knowledge of what was done to me, and the way in which psychiatry has added insult to injury by blaming me, is enough to drive anyone mad. My first psychiatric admission in 1993 was my last. I knew then, and I still know now, that to be in such a desperate state in such an unsafe environment was potentially lethal. Ironically, the place that was meant to provide sanctuary for me became the place that nearly drove me over the edge once and for all.
Sadly, my experience, like many people in the psychiatric survivor movement, is still all too common. Every week across the world, intelligent people are expected to accept discredited diagnoses for fear of being labeled as `lacking in insight’ and having treatment forced on them. Every week thousands of people are coerced into taking medication that they don’t want and which frequently does more harm than good. Every week, people are incarcerated against their will, “for their own good”. Fighting for the rights of people deemed mad, many who have already suffered more than enough, is the last great civil rights movement.
The recent furore surrounding publication of the new DSM has provided a much-needed opportunity to discuss and debate crucial issues about how we make sense of, and respond to, experiences of madness and distress. Many psychiatrists, psychologists and other mental health professionals have expressed their dismay about the dominance and inadequacy of a biomedical model of mental illness.
Whilst we share these concerns, welcome these debates and support colleagues that are willing to take a stand, The Hearing Voices Network believes that people with lived experience of diagnosis must be at the heart of any discussions about alternatives to the current system. 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. That is why we have launched this debate on DSM5 and psychiatric diagnoses.
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PRESS RELEASE: Monday 20 May, 2013
HEARING VOICES NETWORK LAUNCHES DEBATE ON DSM 5 AND PSYCHIATRIC DIAGNOSES
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: InterVoice Online, MindFreedom, PsycDiagnosis, Mad in America, Occupy Psychiatry, The Open Paradigm Project
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 editors:
- 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 www.hearing-voices.org
- Hearing Voices Network Chair, Jacqui Dillon (07951 635 033) and Trustees Rachel Waddingham (07969 161 586) and Peter Bullimore (07950 837 694) are available for interviews.
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Position Statement on DSM 5 & Psychiatric Diagnosis
DSM 5, the fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders – often referred to as the ‘psychiatric bible’ – has now been released in the wake of huge controversy and debate. The alternative classification system, ICD, is based on exactly the same principles. Some of the world’s most eminent psychiatrists have spoken out about the current system.The former director of the US’s largest funding body for mental health research, the NIMH, recently described DSM as ‘totally wrong, an absolute nightmare’. The chair of the DSM 5 committee admitted that ‘We have been telling patients for several decades’ that the biological causes of distress are about to be discovered, but ‘We’re still waiting.’ Another senior psychiatrist said, ‘Patients deserve better.’ In the UK, clinical psychologists have challenged the use of diagnosis and the ‘illness’ model.
The Hearing Voices Network, alongside many of our professional allies in psychology and psychiatry, has serious concerns about the way we currently understand, categorise and respond to mental distress . We also recognise the confusion that can be caused when accepted facts, often presented to service users as truths, are challenged.
We believe that people with lived experience of diagnosis must be at the heart of any discussions about alternatives to the current system. 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 statement outlines the main issues, as we see them, and invites people on the receiving end of a diagnosis to have a voice in this debate.
Main Issues
Psychiatric diagnoses are scientifically unsound:
- No objective tests: Unlike most fields of medicine, psychiatric diagnoses are not provided on the basis of objective tests or measures.
- They’re artificial: There is strong evidence that diagnoses do not represent meaningful clusters of problems or link to known biological abnormalities. Diagnoses are voted into existence by committee, representing opinion rather than scientific fact.
- Drug company involvement: There is growing concern that new diagnoses are both suggested and shaped by (initiated by) drug company funded research and interests.
- Unreliable: The diagnosis you receive from a psychiatrist is based on their opinion about what you have told them. Different psychiatrists often have different opinions about the same person, leading to multiple diagnoses. Two people with the same diagnosis may have nothing in common.
- Limited explanation: Whilst diagnosis seems to provide an explanation for people’s problems, this isn’t the case. People are told they have ‘schizophrenia’ on the basis of their unusual thoughts, experiences, feelings & behaviour. If they then ask why they are having these unusual experiences, they are told it is because they have ‘schizophrenia’. This circular argument explains nothing.
- Limited use: The issues raised above mean that diagnoses are a flawed basis for deciding on treatment, predicting outcomes and carrying out research.
Psychiatric diagnoses have damaging consequences:
- Misses the point: Increasing evidence demonstrates mental distress is an understandable reaction to adversity, including: bereavement, loss, poverty, discrimination, trauma, abuse and victimisation. By focusing on ‘what’s wrong with you’, diagnoses can stop professionals asking ‘what’s happened to you’.
- Missed opportunity: Psychiatric diagnoses can stop people addressing the links between social and economic policy and mental distress. Essential funds are used in the ongoing futile search for genetic markers instead of addressing the societal issues we know lead to mental health problems.
- Disempowers: Psychiatric diagnosis ignores people’s own explanations for their distress and encourages them to defer to an ‘expert’ for treatment. Having your reality redefined in terms of illness and biology is an incredibly powerful experience that can set the scene for a lifelong psychiatric career.
- Medication-focused: In diagnoses such as ‘schizophrenia’ treatment is primarily medication, which is becoming increasingly criticised for its harmful effects and lack of efficacy. Medication does nothing to address underlying difficulties.
- Human rights: People are expected to accept diagnoses for fear of being labelled as ‘lacking in insight’ and having treatment forced on them, violating their basic human rights. Others may, understandably, hide their voices or visions to escape forced treatment – blocking them from receiving help to cope with their experiences.
- Takes away hope: Diagnoses such as schizophrenia and personality disorder, seen as a life-long condition, can unnecessarily take away people’s hope for a meaningful recovery.
- Discrimination: People diagnosed with ‘severe and enduring mental illnesses’ are often subject to stigma, discrimination and exclusion. They may have trouble getting insurance, security clearance to travel overseas, and difficulty fostering or adopting children.
A Way Forward
Finding the best way to support those of us who are suffering and struggling to cope without relying on diagnoses and the existing system is a challenge. It can be hard to see what is possible when all we have known is what is available. Still, we want to engage people with lived experience of diagnosis and our allies, in a discussion to create a way forwards.
Our initial ideas include:
- Seeing mental distress as human and, ultimately, understandable: Rather than seeing voices, visions and extreme states as symptoms of an underlying illness, we believe it is helpful to view them as meaningful experiences – even if we don’t yet know what that meaning is. We believe it’s important to use human language when describing human experiences rather than medical terminology. Given the role of trauma and adversity, we need to start asking ‘what has happened to you?’ rather than ‘what is wrong with you?’
- Keeping the person in the driving seat: We want people to have the freedom to define their own experience. Support should be based on need, not diagnosis. Equally, people need to access a wide range of alternatives to understand and manage their experiences. Medication is just one way, amongst many, that people may choose. We need information about the pros/cons of each approach – true choice and collaboration, no coercion.
- Supportive communities: Mental distress is not just the domain of mental health services. Communities have an important role to play in supporting those who are struggling to cope. Community based options can run alongside, and as alternative to, psychiatry. Equally, these approaches must go hand in hand with greater awareness of the causal impact of social factors such as poverty, gender and racial inequalities, unemployment, deprivation and abuse, on mental distress
Invitation to Debate
We want to know what you think. So, what has your experience been of receiving a diagnosis? What has your experience been of alternatives to traditional services, like peer support? What aspects of professional care have been helpful? Whilst we’re hosting this debate on our website, we want you to talk about it in your Hearing Voices Groups and down the pub. Get a conversation going and tell us about it on here. This is not just an academic or professional issue – it’s one that affects our lives.
Join the debate: leave a comment on this page
See also:
Jacqui,
I agree with you – this is the “last great civil rights movement.”
IMO, those diagnosed as “mentally ill” are the most marginalized and abused group of people on this earth.
I look forward to the day when these abuses become part of our *past* (not present) and can be more clearly seen by all for what they *were* – atrocities, sins against humanity and all things sacred.
In solidarity,
Duane
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Very well said, Duane.
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Thank you for those supportive comments Duane – I too look forward to a time when these abuses of people’s human rights are a thing of the past. In the meantime, let’s keep fighting the good fight!
In solidarity,
Jacqui
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The first two paragraphs read like a plot summary of Kafka’s The Trial. This needs to be heard more, it’s not just that psychiatry can be abusive it can actively drives people mad
As for the rest – Hurrah for the Hearing Voices Network for making such strong statements about diagnosis and adding to the debate.
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“Kafkaesque”
Kafka’s writing has inspired the term “Kafkaesque”, used to describe concepts and situations reminiscent of his work, particularly Der Process and “Die Verwandlung”. Examples include instances in which people are overpowered by bureaucracies, often in a surreal, nightmarish milieu which evokes feelings of senselessness, disorientation, and helplessness. Characters in a Kafkaesque setting often lack a clear course of action to escape the situation. Kafkaesque elements often appear in existential works, but the term has transcended the literary realm to apply to real-life occurrences and situations that are incomprehensibly complex, bizarre, or illogical – wikipaedia entry on Kafka
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I agree John, Kafkaesque is a good description of my own and many other people’s experiences in the mental health system. I was fortunate to escape…not everyone is so lucky. I too am pleased that the Hearing Voices Network are taking a stan in this important debate!
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Where can I find a list of the groups you talk about outside UK?
I do not live in England but in Scandinavia.
What you have started here will end up as important reaseacher on what works and what harms us.
I have 40 years of experience with this, and so have many others here.
We know what helps us and what messes us up.
I accept that I am a bit different from more robust persons,but I hate to be stigmatized and experimented on therapy wise.
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And why should you be stigmatized for being different Licinia? I want to live in a world where we can be curious about our differences and celebrate our diversity.
You can find out more about Hearng Voices Network in Scandanavia here: http://www.intervoiceonline.org/
Good luck!
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Thank you!
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Great, wonderful point John. The whole thing is very Kafkaesque – nightmarish, bizarre, unbelievable.
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Jacqui, I’ve started reading Trauma and Recovery from Judith Herman, the book that you mentioned in your talk at the Family Care Foundation conference. This book is so much more relevant than all the DSMs and all psychiatric drugs combined.
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Yes!!!!
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Delighted to hear that you are reading ‘Trauma & Recovery’ Oli! I agree, if we had a mental health system based on Judith Herman’s work than the unscientific and pessimistic biomedical model, then the world would be a better place for us all.
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Consider joining our boycott. Be happy to discus further with you. Best, Jack Carney
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Know of your boycott Jack – good work!
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Hi Jacqui
I also want to join in on this.
But to tell about my experience of what therapy helped and what did not takes a long time.
Sadly enough what had hust me the most is when my closest friends refused to belive me when I shared my diagnoses with them. They said:” I do not belive you!. Not you….this must be just a little bit….weak variety..” And so on.
It is I,possible for them to take in that I do have a serious diagnoses and still are llikable, and relate to them like any other. Maybe even better due to my sensitivity.
I have learned never to tell diagnoses to anyone. It harms me,weather it is friends or health worker. They get scared even if they felt comfortable and safe with me before I shares my diagnoses.
Even new psychologists get scared! I have visited new psychologist and told my diagnoses in the first meeting,and saw the scared look in their face. So I dropped up. Who wants a psychologist that is scared of you? I have never harmed anyone in my liife.
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I agree, who needs a psychologist who is scared of you! Sounds like they have a problem to me! Sad that you have to go through this though when all you are trying to do is get some help and talk to someone. I do hope that you are able to find the a Hearing Voices Group near to you – we accept all people, regardless of diagnosis. We are all just people.
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Thanks Jacqui.
Like you I was never ‘mentally ill’, didn’t accept the diagnoses/labels and as a result was forcibly treated because of being ‘non-compliant’ or not believing any of it. And for over 40yrs I stood with family members in and through the psychiatric belief system, some of whom stayed in, others got clean away and didn’t look back. I did and have come back in as a resistance fighter, it’s not been easy and the worst attacks have been as a result of ‘friendly fire’.
I agree wholeheartedly that “people with lived experience of diagnosis must be at the heart of any discussions about alternatives to the current system” and on two occasions I invited Mary O’Hagan, NZ survivor activist, writer and thought-leader:
http://www.maryohagan.com/
http://www.chrysm-associates.co.uk/images/feedbackReportMOHagan28mar11.pdf
to speak in Fife, Scotland, where I live. Mary spoke of service user participation and leadership, survivors and users setting the agenda, changing underlying beliefs about ‘madness’, and that mental health acts were inherently discriminatory.
My family and I have had no alternative experiences to psychiatric treatment when in mental distress or having what they label a ‘psychosis’ but we have all experienced forced psychiatric drugging and either remained in the system or took charge of our mental health, tapered and got off the neuroleptics.
I got involved in mental health activism because of the peer support worker pilots here in Scotland, following the Scottish Recovery Network’s PS conference in December 2005:
http://www.scottishrecovery.net/Event-Resources/srn-national-conference-celebrating-and-developing-peer-support-in-scotland-december-2005.html
although unfortunately the PS role has been assimilated into services, an employability tool, which maybe was always the agenda. More like a support worker post than a civil rights movement. It’s why I got involved in 2008, setting up Peer Support Fife:
http://www.peersupportfife.org.uk/
but now find myself a survivor activist, writer and campaigner.
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So many people have said that their recovery began when they escaped mental health services which seems so absurd to me. As you know all too well Chrys, unhelpful and damaging experiences in services, are all too common. I have huge admiration for your work and your determination to change the system. Yet another woman on a mission!
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I feel all over proud to be a Voice Hearer and a part of this movement! We the Danish Hearing Voices Network will be having our annual general meeting tomorrow and having just read your blog I am tossing my planned speech to one were we align ourselves with you, our UK HV family and will start the Danish Debate on DSM-5 and Psychiatric Diagnoses.
Which shoulder do you want to be on Jacqui 🙂 left or right?
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Ha! That is so cool to hear Olga! Delighted to hear that our Danish family have joined us!
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“Pandora’s box should never have been opened”.
IMO the box was opened by Darwin and we are still grappling with denial about our susceptibility to trauma and its effects on the human mind. We are still largely in denial about the embodied reality of being an evolved animal, labeled human.
This current anti diagnostic movement seems to be pointing towards new possibilities in human self-interpretation, and I wonder if an era of further self-realization has begun?
The evolutionary worm turns, slowly, and we are, I believe, on the verge of a new era of self-perception and understanding, with Stephen Porges “polyvagal theory” as important a revelation as Darwin’s theory of evolution.
The Polyvagal Theory gives use a solid science perspective on the social context of emotional distress, in recovering from traumatic experience. His discovery of a third process of innervating the human heart, via the nerves of the head and face, which he calls “the social engagement system” gives a solid science platform for what we all know about the therapeutic process of healing. Its the quality of the “emotional” relationship that is crucial in allowing people to feel safe, and reengage a neural stimulation of the heart, in face to face engagement with another human being. Its what Porges calls “the face-heart connection,” and how we learn to be human in the first years of life.
IMO Porges “social engagement system,” is the social context of which so many psychologists speak, and it gives a clear foundation for a biobehavioral approach to un-pathologizing behaviors, seen too simplistically as a mental illness. The Polyvagal Theory gives us a clear framework for exploring emotional/mental distress as natural reactions to overwhelming stress, going beyond the historically simplistic “chemical imbalance” metaphor, in a “how” and “why” explanation.
Best wishes to all,
David Bates.
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Thanks for sharing those thoughts David, very interesting. I hope that one day we will be able to have the freedom to choose from a broad range of theories, ideas and explanations for the human condition and not have to be subjected to the dominance of this unscientific, unhelpful biomedical model.
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The only point I’d take issue with you on Jacqui is “I “must accept my diagnosis and take medication” and then they would give me welfare benefits and a free bus pass”, that’s often something people do not easily acquire and not a helpful statement in the current UK climate given what a judge recently said: http://www.guardian.co.uk/society/2013/may/22/fitness-work-tests-mental-health-unfair
what research is revealing:
http://www.guardian.co.uk/commentisfree/2013/may/11/benefits-claimants-other-research
and how in addition housing issues are directly impacting on victims of abuse:
http://www.guardian.co.uk/society/2013/may/23/benefits-cap-catastrophic-effect-families
A number of judicial reviews have been heard and are being sought including demands for the minster to answer for his persistent lies on statistics, so I would ask that you consider very carefully what you say on those issues given these issues are pressing very hard on some people and few survivor groups are speaking out about it, it’s the physical disability groups who have been most active. Bus passes are being taken away on grounds of “mental illness”, and welfare assessments have been shown to be prejudiced against people defined as “mentally ill”, and the ‘Work Programme’ offers no specialist support to people who have survived psychiatry
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My point about the bus pass was less about whether subsidised travel is of value to those who are living on benefits and more about the pessimistic messages I received as a psychiatric inpatient. Indeed, the current cuts to benefits and the merciless attacks on the vulnerable by our government are deeply concerning. For many, recovery is a luxury they can ill afford; survival is the name of the game.
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fair enough, it was just poorly phrased, and your acknowledgment is the first I’ve seen from HVN, as many survivor groups on the whole are not speaking out about these attacks, and any discussion about DSM has to recognise at the same time that people’s distress remains real whatever we call it and needs support which can include benefits
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ps your comment about ‘Pandora’s Box’ struck a cord with me as I remember many years ago a psychiatrist telling me that he didn’t like to discuss issues of childhood abuse because he didn’t want to open ‘Pandora’s Box’, and I said to him if you don’t open those boxes you are doing your patients a grave injustice, you are colluding with their abusers by maintaining the silence. Although I’m guessing people like him also didn’t possess the skills to have those conversations, psychiatric training isn’t good on those issues
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The fact is people increasingly need medics (as in the recent court ruling) as allies to back claims for ongoing support and assistance,no matter what anyone thinks of that, judge it however you wish.
Some people use Direct Payments to employ support workers of their choosing, to work by non-medical methods, but acquiring that income requires a medical definition, so how do we square that in the here and now with politicians who would happily withdraw anything if they could get away with it? The only reason they don’t is because they would want to retain the Mental Health Act for those who come into contact with medium/high secure services and criminal justice system. Decent professionals are well aware that diagnosis is complete nonsense but are equally well aware that they need to use it – this has always been the case – but it’s becoming even more necessary, something which needs acknowledgement of in DSM/ICD debates. I say this recognising US psychiatric system is not the same as the UK. Also the fact that not every service user would want to have alternative descriptions, we can’t ignore them just because we don’t agree [we work with psychiatrists after all!]. I’m thinking of the PD orgs, they really are the worst case of Stockholm syndrome you’ll ever encounter and they will be on the other side of this debate and you have to understand why that’s happened for them, I think I’ve grasped why this is for some of them.It’s an uncomfortable contradiction but these issues need to be faced. There’s already too much emerging division and judgement around who takes meds/uses services/is employed/accepts a diagnosis and why, etc.
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Deconstructing psychiatry’s DSM: http://www.psychologytoday.com/blog/feeling-relating-existing/201204/deconstructing-psychiatrys-ever-expanding-bible
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