Our lives, our selves: beyond categories

A survivor

I had my first emotional and mental crisis (my preferred term) in the late 1960s. According to an insider, it took the psychiatrist two or three days to decide whether to give me a diagnosis of ‘schizophrenia’ or ‘manic depression’, settling on manic depression as I appeared to be ‘more responsive’ than I might otherwise be. The psychiatrist told me later he thought he had a ‘case of catatonic schizophrenia’ as I remained completely rigid (like a plank) when asked to bend my knees. (I recall quite clearly deciding not to co-operate!).

I was moved to a small ward in a teaching hospital which epitomised the clinical model that William Sargant had sought to establish (See The Unquiet Mind, 1967), i.e. a relatively short stay in a general hospital while a suitable drug regime is established, to be maintained on discharge. I became hugely distressed, unable to work out what was happening to me and what could be attributed to the drugs and what was the outcome of my crisis. I hated being ‘cut of’ from the experiences (heightened perception and, as I understood it, insight) that landed me in hospital in the first place and various side effects, such as a distortion of my vision, which were not explained to me.

Unusually, I guess, I had a fuller explanation of the medical model – chemical imbalances – than most as my brother was a medic at London teaching hospital (Sargant was also working within London teaching hospitals). For the life of me, I could not see how this talk of chemical imbalances explained the experiences and thoughts (thought processes) I was having, which psychiatry describes as ‘religious psychosis’. And the prospect of ‘stabilising medication’ for the rest of my life – no more heightened visual awareness, huge difficulty in concentration- was too much too bear. Only a chance encounter prevented me from taking my life.

I did however agree to go to a ‘therapeutic’ hospital (as I knew I shouldn’t remain alone). Here the psychiatrist evaded my question as to what my diagnosis had been, asking me instead what I thought. I guess this was intended to diminish stigma but I wanted to know what the psychiatrists were writing about me. He said something about ‘exam stress’ as I was at university at the time, which again can be seen as an attempt to place my experience in some context but, actually, exam stress had very little to do with my crisis. At no point was I asked to talk about ‘my psychosis’ or the process – the experiences and thought processes – which culminated in a ‘eureka moment’. And when I did talk of some of my life experiences – e.g. violence I had witnessed in my home as a child - staff were unable to deal with this other than to urge me to accept medication or even ECT. The focus of this hospital was to return us to ‘normality’ – to behave properly and nicely! I had three stays in this hospital, none of which helped me. And, I had only agreed to go into the hospital on the basis that I would not have to take medication. The hospital did not honour this initially and, to this day, I remain outraged at treatment being given without consent.

After my fourth time in hospital I signed myself out against medical advice - which was possible in those days (late 1960s) but which is now unlikely, ironically because some organisations have insisted that ‘care packages’ should be provided when people leave hospital rather than their being left to their own devices which now may include ‘contracts’, where a person must agree to continue with medication in order to be released from hospital. This can amount to being pressurised. I vowed never to seek support or otherwise end up under psychiatric ‘care’ no matter how desperate and so my last few decades have been spent trying to make my own sense of my experiences, find my own support, strategies and techniques for getting by, and to advocate, when the opportunity has arisen, for alternative support and sanctuary.

In 1988, I came across Edith Weisskopf-Joelson book, Father, Have I Kept My Promise? Madness as seen from Within. Edith was diagnosed as ‘schizophrenic’ but her experiences echoed mine – the religious ‘psychosis’ that undermined her admission to hospital, her reaction to the medication, her psychiatrist’s insistence that she was sick . What she also encountered was an intern who was able to place her experience in the context of her life.

Like Edith, I had what is described as ‘religious psychosis’. I came to realise quite soon that some of the conclusions I had reached in trying to explain what I regard as ‘extra-ordinary’ experiences (but which the Hearing Voices Network has described as ‘non-ordinary’ experiences) were mistaken but, in the absence of a more meaningful explanation that ‘delusion’ due to chemical imbalances this simply left me confused and trying even harder to find an explanation – where in my thinking had I gone wrong?

What has also been striking to me was a comment made by Mike Lawson, a founding member of Survivors Speak Out, when being interviewed shortly before the first national conference of Survivors Speak Out in 1987: “When your headlights hit a hedgehog and it curls up into a ball as a survival instinct, you don’t call that catatonic schizophrenia. Yet when a person feels so helpless and distressed that he curls up in his own reality because the other is too painful to contemplate, doctors call that paranoid schizophrenia and say it requires lifelong treatment with drugs.”

I am wholly opposed to treatment without consent which I view as violation of body and self and am angered at the refusal of the authorities to explore and provide alternative forms of support and sanctuary based on what people say have been personally helpful to them especially as there have been reports of alternatives that people have found helpful such as the Vancouver Emotional Emergency Centre (VEEC) that Judi Chamberlin wrote about in 1977 in On Our Own: Patient-Controlled Alternatives to the Mental Health System (although this took a further decade before it was reissued by MIND in the UK).

Those of us who have objected to the treatment we have received on, for example, psychiatric wards or challenged the way in which our experiences are interpreted have been consistently ignored , When the government wished to reform the Mental Health Act 1983 and its own Expert Committee (Scoping) recommended that there should be an underlying ‘principle of autonomy’, the government responded by saying this was irrelevant to legislation about compulsion and that any discussion on compulsion per se was not in its brief.

I understand our neurophysiology as a medium between ‘psyche’ (our ‘selves’/soul) and our environment (personal, social, political, cultural, physical). I would now add ‘spiritual’ to our varied environments. This perspective allows us choices – we may indeed wish to alter features of the brain’s circuitry, suppress/excite its activity, for example ,or we may wish to change our environments, as suggested by two clinical psychologists in 1984: “in struggling to free ourselves … we may be able to create lifestyles where being alone with our depression will not be so terrifying or lonely …(although) our desire must be for all women to live with the vigour and intensity we should have as a birth right” (Kath Nairne and Gerrylyn Smith, Dealing with Depression). Or we may transform ourselves, make adjustments to what we believe, to how we think about our experiences by, for example, revisiting past experiences using visualisation techniques or how we behave as in cognitive behaviour therapy. Not only did Sargant believe trying to change one’s circumstances and environment was not viable he also asserted that psychoanalysis/psyochtherapy took far too long and was largely ineffectual (which led to his publishing Battle for The Mind and an acrimonious relationship with the profession).

And so we end up in the situation we are in today where so-called psychosis is so poorly understood and we may find ourselves maligned and coerced into treatments which some of us certainly do not find meaningful or helpful and where public misconceptions lead us to be feared and rejected.

At the first national meeting of Survivors Speak Out, The Edale Charter of Needs and Demands was unanimously agreed. The Charter included:

  • That mental health service providers recognise and use people’s first-hand experience of emotional distress for the good of others
  • Provision of refuge, planned and under the control of survivors of psychiatry
  • Provision of free counselling
  • Choice of services, including self-help alternatives
  • Provision of resources to implement self-advocacy for all users
  • Adequate funding for non-medical community services, especially crisis intervention.

Also in 1987 a Charter of Rights for People in Mental Distress was drawn up by Hackney Mental Health Action Group (and added to by Lambeth Link in 1990). This was premised on a definition of ‘mentally distressed’ people, where the severity and nature of their distress and the circumstances of their lives cause some people to ask for help or be forced to accept treatment. It is my view that, in the same way that Congresses held by Marius Romme found that there are people who hear voices and either find these enrich their lives or at least are not unduly troubling so, in our society and culture there are people who hold views and perform rituals, especially in some major religions but also some antiquated parliamentary ceremonies that I find very strange indeed but which others find meaningful. But, for others, our experiences may be extremely troubling and our beliefs land us in difficulties.

The Hackney Charter went on to state that strategies must be developed to deal with the need to intervene in the lives of people actually in crisis, evolved from the experiences of people actually in crisis and of those who have experience of assisting in crisis, and that it is also important to have genuine places of asylum, ‘non-medical, humane, safe, caring places’ where people can explore their own experiences in a secure environment in their own time. I would add that ‘psychotic’ experiences profoundly challenge the usual frameworks that had been guiding our lives and that new explanations are not readily .. We cannot rely on people who have not had such experiences necessarily being able to come up with meaningful explanations.

I wish to end with a couple of quotations which point to the need to consider the wider context of psychiatry. First, Janet Frame in Faces in the Water, 1961: “ One felt like an angler who discerns the ripple of a rainbow fish which will surely die if it stays in foul water. How to trap it without hurting it? But the ripple of humanity may take many forms of protest, depression, exhilaration, violence. It is easier to stun the beautiful fish with a dose of electricity than handle it with care and transfer it to a pool where it will thrive” (p168).

And Kate Millett, author of The Loony Bin Trip, in an article in 1992 in NAPS (National Association of Psychiatric Survivors) News. She claims that we: “… are survivors … of one of the meanest systems of oppression ever developed. We are the ones to tell the truth, to bring the word that mental illness is an illusion, intellectually and scientifically, but also a system of social control of unprecedented thoroughness and pervasiveness. It is our role to expose this illusion, while freeing all of us, for we are all constrained and oppressed, limited, intimidated by this phantom of mental illness.”

Of course, this is Kate Millet’s personal political point of view. Many people do find a diagnosis of ‘mental illness’ and associated treatments helpful, being more concerned about stigma, discrimination and exclusion (not helped by the word ‘schizophrenia’) but one thing my circle of friends has confirmed to me is that despite some common experiences of ‘psychosis’ we cannot be simply be categorised (usually in terms of deficits, or dysfunctions). We remain varied in our personalities, our outlooks, our politics, our beliefs, the ways in which we try to deal with our experiences …

I am hopeful the Inquiry will find and represent this broad perspective. It is hugely encouraging to me to see issues around “psychosis” being returned to just at a time when it had seemed to me that the medical model has returned to widespread acceptance and that all the effort to, for example, talk of ‘mental distress’ as a challenge to ‘mental illness’ in the 1980s/90s (including a recognition that it was not enough to talk solely of ‘distress’) had been lost.