Can you hear voices and be healthy?
Can people who hear overwhelming and distressing voices be assisted to find ways to live successfully with their voices?
The hearing voices approach originating in Europe and developed in partnership with voice hearers indicates that this is indeed the case.
There are now peer support networks in over 27 countries across the world with groups and a network now being developed in the USA.
In November 2012, Cardiff, Wales, more than two hundred and fifty people who hear voices, see visions and have other unusual and extreme experiences (referred to as “hearing voices” in the rest of this post), family members, friends, activists and allied experts by profession came together from around the world. The purpose of the three-day meeting was to celebrate the twenty fifth anniversary of the formation of hearing voices movement, to consider the lessons learnt so far and to envisage what we should be doing over the next 25 years. The excellent film, “Voices Matter“, that you can now view on this site, is a record of the event and I strongly recommend that you take a look.
It all started In 1987, when Patsy Hage, a voice hearer made this challenge to her psychiatrist Marius Romme: “You believe in a God we never see or hear, so why shouldn’t you believe in the voices I really do hear?”. At the time, Marius, like many psychiatrists (as they still do today) dismissed voices as being part of an illness process and it was this conversation with Patsy that first led him to reconsider. Marius explained how it effected him a couple of years later:
“It was Patsy Hage, who made it clear to me that the psychiatric approach was not very helpful. Because as a traditionally trained clinician I was only interested in her voice hearing experience as far as it concerned the characteristics of a hallucination, in order to construct a diagnosis in combination with other symptoms. But she was interested in the voices and the power they exerted over her; in the stress she experienced; in what they told her etc. She did not like my reductionist approach. She was hindered by her voices and medication did not work with her. And as a result she became more and more isolated because the voices forbade her all kind of social activities.
“In order to break through this isolation, I suggested she should talk to another patient who also heard voices. First she felt some resistance to the idea, but eventually she accepted the proposal as we did not know of another way to learn more about hearing voices. I also realised that I did not know much about the experience of hearing voices. So I organised a meeting and the patients who attended were very enthusiastic about talking about their voices. They recognised each others experience. However, after some contacts they, as well as I, realised that they still did not know how to cope with their voices, because all the patients I knew were more or less powerless against their voices.
“To solve this problem we asked for help from a national TV talk show (like the Oprah Winfrey Show). We wanted to contact people who not only heard voices, but also were able to cope with them. In this talk show Patsy told her story and I asked if people who knew how to cope with the voices would contact us. To our astonishment 700 people responded. To organise the information we constructed a questionnaire together with Patsy Hage. From those who returned the questionnaire we selected people who could explain clearly what they did in coping with their voices. This was the beginning of our new understanding of the meaning of voices.”
450 people returned the questionnaire and of those 150 people said they were able to cope with their voices without assistance from psychiatry, indeed in many cases reported they were happy to hear voices.
For Marius this was a the first step in walking away from the accepted medical view of what voices meant (e.g. nothing) and instead take his lead from Patsy and other voice hearers. Following on from conducting the initial research they did something more, something that is quite unusual. Rather than publishing the findings in a peer reviewed journal and perhaps setting up some kind of professional institute instead they founded an organisaton of and for people who hear voices and organised conferences.They did this in order to encourage a broader discussion, to change the attitude of society and to try to change the way voice hearers were treated by the medical profession and especially psychiatrists.
Thus began a stream of inquiry and Independent research that has discovered that many more people than imagined do hear voices – and that the majority of people are not troubled by the experience. Indeed many even see it as a positive experience. This lead to the conclusion that it is the relationship that a person has with their voices they hear that determines whether the experience is a good one or a frightening one. And learning from others and with support a person can learn to change that relationship.
My own involvement in the hearing voices movement began shortly after this, when in 1988 I met Marius and Sandra Escher in Trieste, Italy at a World Health Organisation sponsored conference entitled (somewhat ironically as it turned out) “The Question of Psychiatry”. Marius, and his colleague and now partner, Sandra Escher, a science journalist, presented information and results about the work on “hearing voices”.
The main reason I was intrigued by their work was because of my brother’s experience. We had always had a close relationship and in 1983, my brother had a spiritual awakening, at times troubling, even frightening and at other times enjoyable and enlightening. Talking about this later, he said he felt he needed to embrace this new world he was living within. This occurred shortly after he had moved to live in Manchester (where I was) following the break up of a long term relationship, and abruptly resigning his job in advertising.
At the time I thought I knew a lot about mental health. As a campaigner for better services for people with mental illnesses, I had seen for myself the negative aspects of psychiatry such as the use of anti psychotic medication, electro convulsive therapy (ECT) and the lack of interest in developing empowering and supportive services in the community. As a member of a local association of Mind (the English mental health charity) I was part of an attempt to change the nature and role of mental health services. Emphasising the importance of working alongside people with mental health problems, rather than for them. None of this helped, though, when my brother began to behave and think very differently then he had before. In spite of my best efforts to keep him out of psychiatry (which by then I had little faith in) he ended up in a hospital and had been given the diagnosis of schizophrenia.
On reflection my lack of faith in his explanation that he was undergoing a spiritual crisis, was a kind of betrayal. I feel I reacted in the same way as psychiatry – I was so blinded by the supposed scientific credibility of schizophrenia that I was unable to fully accept an alternative explanation. Later, it began to occur to me that what he said was right and what I thought was wrong. Although my doubts about the meaning of his experience began to form, I had a problem working out what I could do about it. I could not understand how he had transformed into a person I sometimes felt I no longer knew. Although I could see that there was joy in what he experienced, there was also pain and bewilderment (including at the reactions of the people around him) and a vulnerability, due to his total commitment to really experiencing what was happening to him.
Unsurprisingly, my attempts to help him were hindered by my own anxieties and fears. It became obvious that even though I was involved in mental health campaigning there was little I could do to prevent him from being hospitalised and subjected to coercive treatment I had little faith in and had seen fail many other people. Even though I had always been concerned to promote and support forms of work that assisted people in maintaining their own autonomy, I found myself helpless in the face of my brother’s experience.
Fast forwarding to 1988. On the basis of the initial work, Marius and Sandra had made a priority of searching for allies, people who might be prepared to carry out similar investigations in their own countries. I wanted to emphasise this starting point because what they were saying had a powerful effect on me and on other people I talked to in England about this new way of thinking about voices. This is the challenge that Marius set me:
“I ask you to try to do the same in England. Groups need to be established in each country where people can talk together about hearing voices… it takes groups of people with the same experience to change attitudes… in America and England now, psychiatrists are following the needs of parent organisations. My goal is not changing psychiatry, not changing parents, but offering people hearing voices an organisation from which they can emancipate themselves. You have to organise groups, and then psychiatry follows.” (Marius Romme in interview with the author in November 1988)
Later that year the first English Hearing Voices Group was formed, modelled on the Dutch peer support group. There are now over 200 groups.
The hearing voices movement is founded on the principle of finding ways to help voice hearers who are troubled by their experience to change their relationships and attitudes to their voices. To find ways of helping people who heard voices who were subject to psychiatric intervention to take up their lives again and to make sure that what was learnt was well known to people who hear voices, family members, friends and wider society.
We have always looked for ways to increase everyone’s understanding of the experience of hearing voices and to challenge the misconceptions that many people have about voices. We have always believed that if society changes its attitude to “voices” then psychiatry is much more likely to follow. Marius puts it like this:
“What this approach shows is that we must accept that the voices exist. We must also accept that we cannot change the voices. They are not curable, just as you cannot cure left-handedness – human variations are not open to cure – only to coping. Therefore to assist people to cope we should not give them therapy that does not work. We should let people decide for themselves what helps or not. It takes time for people to accept that hearing voices is something that belongs to them.”
Yesterday I talked with my brother about the hearing voices movement, his main regret was at the time there was no one to provide him with the kind of support that he needed to understand the crisis he was in, I reminded him that twenty years ago he told me:
“The experience is an overwhelming one. It’s like being thrown into a turbulent river of change and not being able to swim or being in an alien world without a guidebook and unable to read the signposts. I suggest that we need to learn to swim or that we are taught the language and know a little about this world before we get there. Obviously the confusion and fear associated with an unexpected arrival would result in distress and often an inability to function. This is added to by the social/cultural response to the individuals apparent loss of control.
“I hope one day those who may experience a so called “psychosis” in the future and mostly to those that already do so will be able to find this kind of support. I would hope that this would empower individuals by putting their experience on a more positive footing and by putting the experience into a framework and context that can be easily related to. In addition I would hope that once so empowered the individual might be enabled to seek out or take up an established practice and transform an otherwise negative experience into a positive one.”
Maybe we are getting there. A different way of thinking about hearing voices and a new way of helping people who are troubled by their voices is being developed. A journey that continues to this day, a journey that crucially, recognises that people who hear voices are the experts of their own experience, who are in the best position to appreciate what this experience means and what really helps. With the support of the worldwide hearing voices network, voice hearers, some of whom have spent long periods of time in psychiatric care, have reclaimed their lives and are now able to say they hear voices and accept them as part of themselves.
It has certainly had that effect on me, the next time I was part of someone’s life who heard voices, I felt far more confident about how to listen and how to help. That person was Ron Coleman (who some of you will know), but that is another story. Now though, I can say I feel comfortable talking to people about their voices and even with their voices, in a future posting I’ll say more about that.
There was a happy resolution to my brother’s life story, too. With his friends he found his own route out of traditional treatment and although it took him some time, he later joined a hearing voices group and found his own explanations, ways of coping, ways of accepting and of living with his experience. He has had his own business as a Tai Chi teacher for the last fifteen years, is a father of three and has a great life. We talked about this article last night and he told me he still has the same experiences, without them he wouldn’t be who he is today; it is part of him. The difference, he said, is that now he knows how to keep his head in the clouds, whilst ensuring his feet are planted in the earth.
“Voices Matter”
Information:
For more information about INTERVOICE (International Network for Training Education and Research into Hearing Voices) and the hearing voices movement, check out the following:
INTERVOICE Facebook group: An open forum for discussion, support, advice and information about hearing voices and is aimed at anyone with an interest in hearing voices including voice hearers, family members, friends and workers and not forgetting voices themselves.
Hearing Voices Movement Media Watch provides regular information on research and media coverage of hearing voices and related topics
Google World Map shows the location of groups that are running in 27 countries around the world
The hearing voices movement has been beautiful but it also has it’s failings – for some of us it feels like your voice only matters if your recovery is good enough, if it isn’t then you find yourself tossed aside and that is as bad as what the medical model does, and there have been models of sorts promoted within the hearing movement regarding causation and recovery. Human rights also includes social justice and there isn’t a single survivor group campaigning on those issues in the UK because forced treatment and medication are always the cool topics but housing, benefits and access to services [despite them not being that good but the vol/survivor sector really can’t cover it all yet] are clearly the embarrassing subjects. Fact is these issues are posing a serious threat to people’s lives right now, and secure housing/income has to be the foundation before you can look at how you want to manage your voices.
Too often [and this isn’t only the preserve of hearing voices activism] there are demands for ‘recovery stories’ irrespective of whether people even relate to that concept which doesn’t in itself mean not believing in self-management. The most marginalised are left behind, and radical movements need to recognise where it too can be abusive too i.e. being threatened for your views, being denigrated for ‘failing’ to not cope better. The testimonies of endurance and struggle are swept under the carpet in the era of happy shiny recovery and criticism swiftly deleted.
There’s a lot online berating of others who take any service support, medication, are in receipt of any benefits, all in the name of recovery and getting away from psychiatry and it’s not acceptable that any critique is met with sneers of accusations of being ‘medical model’ and assumptions of being too lazy to work. I want to see the fall of the DSM, I want to see psychiatry become a very small cog in a much broader wheel, where non-medical support of a person’s choosing is accessed easily something those survivors you refer to [as though that word is a relic] tried to fight very hard for. We also didn’t stifle debate and criticism of ourselves and our actions and we reached out to people whose views were different to ours.
There are people on monthly depot injections being pushed into ‘recovery groups’ by statutory services where it’s all life coach speak and then they leave to nothing. They are not the people you would see in a hearing voices group. You don’t represent them.
Prof Nik Rose once referred to the ‘obligation’ to recover and Lynne Friedli has eloquently spoken about how unpoliticised this whole area is.
http://www.researchintorecovery.com/content/lynne-friedli
Lynne is the only survivor whose words on recovery I can take seriously.
Services have employed ‘recovery champions’ who ‘correct’ service users language talking the service commissioners talk, the NHS has bastardised concepts of recovery it’s merely wrapped around a medical model and dove tails with discharge and employment as the key outcome measures of it. Equally, there are valid criticisms to be levied at survivors too who have turned recovery into neo-liberal activism where you’re either for it or against ‘em, and if the latter you are the enemy.
In an ideal world no one would end up in the mental health system to start off with but we’re not at that point yet, and part of the problem is capitalism which only values economic productivity as the value of a human being and because ALL social supports require a diagnosis. So unless you can get through crises or longer term difficulties [I know they’re not supposed to exist but they do] without needing any assistance with housing, income, time off work, then it’s incredibly difficult to get around those things without contact with a doctor unless you win the lottery.
One can feel anger at mental health systems who destroy lives and be justifiably concerned at some aspects of survivor activism too, it’s not either/or. I remember having a conversation with the late Judi Chamberlain about these issues, it’s not specific to the UK. There’s a great report by Canadian survivors called Mental Health “Recovery”: Users and Refusers.
I’ve listened to fellow voice hearers distress at feeling like they must be failures because they haven’t managed to reach the point of their voices no longer bother them, or do higher education, or get a job/back into employment, or other expected life milestones. Are they welcome? They don’t feel it.
brilliant video of Lynne Friedli – here’s a quote, ‘17% of people with psychosis have been in local authority care as children.”
We’re back to mental distress being caused by oppression in all it’s forms which raises questions about who cares about this and who addresses this?
Parts of the hearing voices movment does seem to address some parts of the difficult experiences that drive people mad – surving child sexual assault for example is an expereince that some part so of the hearing voices movement is active on. But other areas, such as poverty, racism and homophobia are not acknowledged much.
Sometimes it seems like we survivors, voice hearers, ex-patients, peers….whatever, are our own worst enemies. Just because we’ve been in the system and have suffered at its hands doesn’t mean that we’ve given up our own individual prejudices and assumptions. Many of us say that we’re for freedom of choice but what it seems we are actually saying is that you need to conform to our way of seeing and doing things for it to really be proper. Very few people examine their assumptions on a daily basis, whether they’ve been in the system or not. Our assumptions end up cauging trouble not only for ourselves but for others.
Joanna is spot-on. We’ve reached a point where those of us who have enduring problems are a liability to the ‘Recovery” movement. There’s no one doing advocacy for those of us whose lives don’t resolve neatly into a shiny Hearing Voices recovery story…just a strong sense we are personal failures and apologists for the medical model.
Lynne is magnificent and the blog by Sera here on recovery is also really good because it touches on issues which survivor movements as a whole are not looking at and are quite divided on.
Yes the hearing voices movement has [rightly] highlighted child sexual abuse, although some of us have experienced attempts to ‘persuade’ us that voice hearing must have stemmed from an abusive childhood which is a bit alarming when that is not your experience, and other areas such as the ones you list are less acknowledged. Nor is the reality that people might have ongoing difficulties and be unable to fit traditional working patterns and the stringent procedures and conditions attached to any state support cannot be accessed without a diagnosis. This is turn places housing at risk of which there is a national shortage of affordable social housing in the UK. This impacts on people receiving in-work and out of work benefits.
Better non-medical approaches don’t count for much if you don’t have a roof over your head and can’t eat. People are ending up back in hospital or worse because they can’t fight both psychiatry and punishing welfare/housing policies at the same time.
http://www.youtube.com/watch?v=qD36m1mveoY
Channel 4 screened Eleventh Hour’s “We’re not mad we’re angry” in 1986. This was a unique docu-drama which took two years to make with a group of current and former psychiatric patients who held full editorial control. Many of the actors in the drama sequences had been service users, others were involved in the editing and production process. Many of the survivors interviewed were activists such as; Jan Wallcraft who became Mindlink’s first co-ordinator, David Crepaz-Keay, who went onto managing Mental Health Media, then Head of Empowerment and Social Inclusion at Mental Health Foundation, Peter Campbell the founder of Survivor’s Speak Out’, Mike Lawson the first survivor vice-chair of National Mind (who got elected in favour of a psychiatrist who was so angry at not being elected he demanded a recount). Mike also designed one of the first Crisis Cards. It’s a seminal piece of work which you would never see now as criticism of services is more stifled and radical activism has been dumbed down by policy and recovery approaches.
http://vimeo.com/41967871
Prof Peter Beresford [posted in the recovery trap blog] but it seemed relevant to here too
Ps the word ‘survivor’ was coined by activists and groups before the hearing voices movement and remains as relevant now as it ever was.
It always meant surviving services/life/distress/trauma, it’s meaning has not changed no matter who claims it has.