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Why mental health is a 'disability' issue / 10 December 2012

I've been mulling over the range of comments that were entered in last weeks online debate as posted in DAOs editorial. In response I have to say, first off, that we have stop thinking of disability as a physical attribute. Disability is a state of inequality brought about as a result of oppression within society. This is often to do with physical barriers and lack of physical access, but it is also because of attitudinal barriers.

What I would like to emphasise to those who would trivialise mental health issues and deny them as being a disability issue, is that what they have to take on board is that we have been living in a war of attrition with psychiatry ever since chlorpromazine was announced as the wonder drug in 1955. At that point in time the so-called pharmacological revolution introduced the concept of mental illness resulting from a chemical imbalance in the brain, with glib ideas about how the brain works, used as if 'chemical imbalance' were a known pathology.

Over the past 57 years anti-psychotic medication has caused unwritten, untold damage as the power relationships maintained by the medical model of psychiatry remain underpinned by the large pharmaceutical companies, who continue to dole out the idea that their drugs can and do 'cure'. The arguments the psychiatric profession proffer correlate with the kind of arguments enforced by witch-finders in the 300 years or so of the state persecution of witches.

Once submitted to the ducking stool, it was proof of your guilt and allegiance to evil if you rose to the top of the water; and of your innocence if you drowned. Similarly, under the rules of psychiatric intervention if you admit to being ill and take your medication, then you are getting 'better'. If you refuse and deny the professionals' reflection on how you 'present', then you are ill and therefore need further medication. No-matter that psychiatric medication itself has been proven to cause chemical imbalance and to shrink the actual size of the brain. The terrible thing is that like many, addictive illicit drugs which alter the brains chemistry, the impact of neuroleptics is devastating if, once introduced, they are not taken away over time and with careful consideration. What we are living in is a state of institutional abuse at a national level in which millions of individuals in the west are being systematically poisoned in the belief that this is somehow for the greater good.

I went to the Open Paradigm conference last Friday. US Journalist Robert Whitaker (author of Mad in America) talked through psychiatry's own statistics on how dangerous and ineffective psychiatric medication is. He discussed the statistics for how neuroleptic drugs intervene with brain chemistry; how preventing the brains production of dopamine is like driving a car with the brakes on. He discussed the rates of low age expectancy for individuals on neuroleptics long-term, the long-term brain damage through brain shrinkage, tardive dyskinesia and akithisa, which are a physical manifestation of a brain trying to produce dopamine naturally, when the transmitters are being blocked by the 'medication'. He also discussed the financial costs of disabling people through making them incapable of functioning in any capacity for work or study. He discussed the statistics produced by NIMH and all the research into neuroleptic drugs from the introduction of chlorpromazine in 1955 to statistics around the current 'wonder drug' clozapine. He was passionate and took on board how very upsetting the information he has gleaned would be for the 120 or so people in the room, many of us whom were survivors.

In a constructive response psychotherapist Nick Putman talked about his experience of the Finnish Open Dialogue psychiatric model which was introduced as the method of treatment in the mid-1990s. West Lapland has gone from being the country with the highest incidence of 'schizophrenia' in Europe per capita to the country with the least incidence. Why? Because the Open Dialogue method advocates medication as the very last resort. It advocates looking at psychosis as a breakdown in communication between people, rather than a breakdown 'in' people. It advocates setting aside the traditional power relations between doctor and patient through a process of mirroring.

Open Dialogue is in accord with other developments in psychiatric care, such as the Soteria project developed by Loren Mosher in Canada. Now there have been moves to establish a Soteria house in Brighton, East Sussex. The root meaning of psychiatry is care of the soul. Yet the medical model approach defines us by our symptoms of anxiety, depression or psychosis. It puts us in the control of the professionals and the government puts itself in the position of protecting the public from the ‘mentally ill.’

The beauty of the Soteria and the Open Dialogue approaches are that they offer potential for a paradigm of care which takes the notion of the individual being in a state of 'division'; of having a divided self; and looks at unravelling how that person has entered into a state of division from other people.

I don't know how we move forward to creating a fairer society, one which breaks down the barriers which disable us? But to say that "the mainstreaming of mental illness is a greater problem than the genuine problems that need support and assistance" is to ignore hundreds of years of persecution and to lay a foundation for an argument that will lead us straight back to the gas chamber.

Comments

Colin

/
28 January 2013

The awful truth after 57 years of neuroleptics is that for by far the majority they do not work as a long-term solution to difficulties. The statistics for those who move beyond psychiatric intervention is far higher for those who do not succumb to medication, long-term.

If you read the reports from journalists like Robert Whitaker or psychiatrists like Joanna Moncrief you see a picture of consistent obfuscation as the common understanding that drugs are necessary is held sway with the idea of "a chemical imbalance in the brain."

The position of this simplistic notion is often maintained to uphold the idea of using dangerous psychoactive drugs that block the brain's production of dopamine. Whitaker describes the effect of neuroleptics on dopamine activity within the brain as "trying to drive a car with the brakes on".

The more neuroleptics block neurotransmitters and stop dopamine production, the more the brains neurotransmitters do to produce the chemical. The result is that unless coming off anti-psychotics is done with extreme caution a dopamine supersensitivity can lead to both dyskinetic and psychotic symptoms.

The Soteria Network is a a group here and worldwide who are promoting alternatives to drug treatments for these very reasons. The National Health Services in West Lapland have proved over nearly two decades that alternatives are viable as psychiatric services there looked at the statistics for drug treatments and realised they didn't add up to sensible care and prevention of so-called mental illnesses http://www.soterianetwork.org.uk/index.php

John Hoggett

/
12 December 2012

Lynn, I think the Recovery Model as it is preached by services is pants. It started out as the idea that those with extreme mental distress could indeed recover, contrary to what Dr's said. Ron Coleman wrote a book on this called, "Recovery, an alien concept." He meant that in the NHS if you had a diagnosis like schizophrenia you were not expected to recover but instead were expected to take drugs and live an in poverty for the rest of your life. He thought differently and developed ways of helping people to do just that based on intense social support and understanding.

Now services talk of The Recovery Model but don't change how they treat people. It seems to mean that you can go back to work, just take the drugs and have the nice chat with the CPN once a fortnight, same as before they started using the term. I guess if people say they want to go back to work they won't discourage them these days but apart from that nothing seems to have changed.

Open Dialogue isn't this. It is nothing to do with the idea of Recovery. It has been going for about 20 years in Western Lapland in Finland. They have the lowest rate of schizophrenia diagnosis in the developed world and very low drug use. I know schizophrenia is a loaded term however most people using the service are back at work or college within 2 - 5 years and don't end up in hospital or on drugs for life. That's a huge improvement from what happens here.

The way it works is by teams of therapists come into peoples homes, by negotiated consent, for conversations with the family and other people in the persons life. A friend who does a lot of group work, but not in the mental health arena, said it sounded like the sort of work she does in business or with communities where she sees her job as helping the conversation go more smoothly. I told the person who developed Open Dialogue about this and he agreed that is indeed what they do.

They specifically do not, "Do to," they see there role as helping the social network reflect on itself. They specifically do not try to take agency away from the person who is distressed or from friends, family or others. They are there to try to help the distressed person and their social network to try to solve the problems which drove the person mad so that they have the best chance of recovering. So it is very much about helping people find their own ways of surviving but also about helping the persons social network find ways of supporting the person too.

Although it is practised by a state mental health programme it doesn't sound like a medical model to me. It is all about helping the social network understand the person who is distressed and about helping the person who is distressed to be more self confident so that they can have more agency in their life.

That is why it sounds like a social model of disability to me. Just as people with physical impairments may need conversations about what are reasonable adjustments so that they can be part of society as equals people in mental distress needs conversations with people around them about what they need to integrate too.

My guess is that open dialogue has not been heard of much outside critical psychiatry and some related disciplines because it seriously challenges the drug based treatment of bio-psychiatry.

We all want people to understand and encourage us. This seems to be one small part of the developed world where services are specifically designed to do just that

Richard Downes

/
11 December 2012

Well put young sir.

The one thing you missed out re social modelling is the classification of mental ill health as an impairment.

I have not seen a definition of impairment which excludes mental issues.

What you did extremely well was to discuss mental health as a struggle with the medical model of disability. There are possibly a thousand more examples of where society oppresses people with a mental health issue. The social model does proffer some solutions to this.

I have worked for more than 20 years for an organisation of disabled people providing advocacy. The oprganisation mnever had any problems with accepting people regardkless of impairment type - our committee and advocacy team have been well represented by mental health service users who have made a positive contribution to the organisation. However, when you speak to disabled people you often find people with learning disbailities saying they are not disabled because they do not use a wheelchair and wheelchair users saying they do not want to assoicated with mental health service users.

It is vital that we address these perceptions within our movement - after all we have the same needs and the same problems re acceptance by society. At one point this year, in recognition of these problems i proposed a hugging day where we get together and discuss our commonality and shared issues. It was not well named but it was well intended - perhaps it should become a shake day where we shake hands and each other up.

Lynn Harrison

/
10 December 2012

Well said Colin!

People with mental health diagnoses seem to be disabled by society in a number of ways, not least of which is our treatment by psychiatry and by the mental health system.

On a most fundamental level, there can be few things more terrifying and disabling than being sectioned and having your freedom taken away from you and having experienced this I have also witnessed some terrifying things that can happen in the name of treatment including people being restrained and given injections of accuphase neuroleptic drugs which render people unconscious for many hours, also, I have witnessed the coercion which still happens to some people who are 'persuaded' to submit to ECT - the most distressing incident of this was a young woman who was an abuse survivor being persuaded by her family and mental health staff to undergo this, without the possible effects being explained and without the perpetrators of the abuse ever being apprehended. On another occasion, a woman was told that she would not be allowed to see her children unless she agreed to have ECT.

And this seems to be the crux of how we are disabled, in that, many of us find ourselves in intolerable situations which result in severe distress and then are given stigmatising labels, drugs, incarceration and our hopes for equality and our own aspirations and those who care for us, of us having the same opportunities as other people, or indeed, even being heard or believed are removed and we are in effect punished and made pariahs for crimes we didn't commit.

John Hoggett

/
10 December 2012

What I like about the Open Dialogue model is that is assumes that people are disabled by their social situation and that if the social situation is addressed the person will be able to function better. It is about trying to heal social bonds that are broken and twisted, it is about trying to understand everyone in the room and about helping them understand each other.

When people facing psychosis are recovered enough to consider going back to work or to college the Open Dialogue practitioners introduce employers, teachers and those from the employment service into the conversations so as to help reintegrate the person into society.

To me this is similar to the social model of disability. It is society which needs to change to enable people with disabilities, whether they be physical or mental, to fully participate and Open Dialogue is one way of helping people facing overwhelming mental distress do just that.

Lynn

/
10 December 2012

I'm sorry John but I disagree. The 'recovery' model has been much discredited by mental health survivors as it has been much manipulated by mental health professionals, i.e. those who are not survivors but make a living by continuing to take away our autonomy and 'do for' not even 'with' us let alone enable and support us to define our experiences and find our own ways of surviving. Also, because it sits the cause and the responsibility for functioning within the person experiencing the distress and implies that all that needs to happen is for the person to be 'normal' and 'fit in' and the kind of 'support' mentioned rarely exists and is it appropriate? This in fact appears to be the antithesis of the social model

Colin Hambrook

/
11 December 2012

Open Dialogue is very different from the Recovery Model, Lynn. From what I understood of the Finnish film presented at the Open Paradigm conference, it attempts to create a much more equal relationship between 'professional' and 'patient'.

Susan Quick

/
11 December 2012

Thank you for a brilliant editorial. I have a form of brain damage - result of a near fatal car accident - which left me 'head injured' one of the commonest disabling conditions in our car driving world. But we look very "normal", so people think we are cheating when we claim to be disabled. A doctor once came to 'examine' me to confirm that I qualified for the DLA I was receiving and which the hospital had applied for on my behalf. Of course he took one look at me, having arrived half an hour early so as to catch me unprepared and before my carer got there, and he declared me perfectly fit and able to go back to work. Just a stroppy bitch who didn't talk to him. It took more than a year to get my DLA reinstated: I was bed-ridden for a month prior to the tribunal and three people had to take me there.

But I'm not mentally ill - or so they say. You are absolutely right the distinction between mental and physical health is all wrong. Sadly it has got so institutionalised that disabled people themselves perpetrate it. A year ago Calderdale Disability Partnership invited the organisation which I lead, Enabling Radio Drama, to perform at an event for International Disability Day. After the show the Secretary took two actors to one side and asked them what their disabilities were. Anne is agora-phobic, Jane is suffers psychological distress. Both were told they were not welcome; they should go to their doctors.

Following this debacle I resigned from the Management Committee of the Partnership and discovered I'd only been allowed to join the Partnership because I walk with a stick. When I tried to correct the Partnership's definition of disability as purely physical I was banned from meetings. Such was the level of anger that my confrontation with their definition of "disability", that the Chair prevented me from continuing to play wheelchair rugby at the local college, even though non-disabled participants were welcome.

I suggested that they revise their name in the constitution, as they were in the process of applying for charitable status. I had no response, but I've been firmly removed from their mailing list. I am not welcome to attend their "open" meetings. This is the depressingly sad present day reflection of the division to which you refer and the drug domination of our disabling environment.

You comment on the unhealthy division between mental and physical health. But it's more than that. We are sub-divided into the strata of our own particular condition. A small group of us who were disabled in different ways set up Ecobility to straddle the divide and to look at ways of making our environment more disability friendly. Enabling Theatre grew from Ecobility, using Theatre of the Oppressed to explore ways society disables us. We lead workshops at different venues at no fee. However we were once told that we would not be welcome to work with one group as they all use wheelchairs; only one or two of us do.

Your reference to drug dependence is also very significant. When I left hospital I wasn't on drugs, so they sent me home with a HUGE box of paracetemol. An Enabling Theatre member with severe depression, threw his drugs down the loo for 6 months so he could continue attending Art Therapy. When he finally confessed to his 'sin' he was told he could only continue Art Therapy if he took his drugs. Fortunately, he was strong enough to argue his case and they finally let him continue painting without swallowing drugs.