Hi Tina
Your experiences sound awful. I guess there may have been many black protestors in there with you?
I agree with a lot of what you say.
Bear with me. This is a long response to you. I won't forward all of it to Rethink.
I think it is possible to label people though it is a meaningless practice which often leads to assumptions being used, for example black people are good at sports. Some aren't.
Schizophrenia as a pseudoscientific concept does exist - just about - but doesn't exist as such in clinical practice. Stuff like the mini mental state examination are open to abuse.
In the late 1970s I guess schizophrenia meant hearing voices though other things still came with it, such as dressing differently or being a promiscious woman. Modern (younger) psychiatrists may not use the same criteria. Today you'd be pretty darn cool. :-)
The diagnosis is used to oppress a type, at least historically. The type has shifted and perhaps narrowed in some ways. I think there's less focus on the voices aspect and other factors in Bleuler's idea have risen in prominence. This is especially true since DSM 3 and 4, perhaps because of the beating psychiatry received from the antipsychiatry movement.
I don't know enough to say what it means now but I know enough to say no two psychiatrists from different countries or widely different psychiatric schools of thought would agree on what it is when applied to a patient.
I don't think schizophrenia is a real thing but I think the prognosis is. Schizophrenics (and manic depressives and psychotic depressives) do much worse in developed world nations for a variety of reasons - not least treatment itself. I think treatment has improved but...imagine what they did to schizophrenics in the early 20th century.
A modern definition? It is difficult. In part there is distress and disability caused by the inability to cope with the delusions and hallucinations. Then there's the disability caused by the negative symptoms which, in my opinion, are the effect of the delusions and hallucinations. Then there's other problems caused by positive symptoms such as bizarre behaviour; this is not a scientific concept but a social judgement which results in exclusion or misunderstanding. There's also the Jungian idea of schizophrenia as an introverted mind state which, again, can lead to disability.
It is worth noting that India has Sadus and Fakirs - wise men and sages who, without the cultural construct and accepted place in society, would be otherwise diagnosed with something like schizophrenia. I am strongly a believer that schizophrenia is not a real illness but a social or cultural construct. I also believe the future will need the quality of schizophrenics (esp. If Alvin Toffler's Third Wave idea is the next revolution of humanity).
It is the prognosis which I hope will change. This is what I want treatment to focus upon and this is where the innovation and research also needs to focus. The measures have to change because I think they're wrong in many respects. There needs to be a much higher focus on well being. There also needs to be a significant shift towards solving the problem of the exceptionally high suicide rate (both attempts and completed attempts). Research and innovation is also needed to protect rights and the sovereignty of schizophrenics as equal citizens - equal to automotons which is the word I use to pejoratise normal people. For example, genetic screening could potentially wipe out schizophrenics if Meehl's theory of schizotaxia proves to be correct.
It isn't all rosy. I also think schizophrenics need to work. This is part of their reintegration into society and how the healing of The Great Confinement will happen. This will also better outcomes in my opinion in the long term but it is a very unpopular idea I would guess. There needs to be massive shifts in the problems of stigma and discrimination.
There still needs to be a safety net for first episode psychosis and I'm afraid it may involve incarceration. I'm sorry Tina but psychosis can be dangerous to life - mainly through regretable suicide but also through Abrahamic murders (the Bible schizophrenic, not the US presedential voice heater). After first episode I would consider creating expert patients is the way to avoid future coercion because the person can learn to self manage and retain insight. This is about empowering people and taking power away from psychiatry.
There is also the need to find new ways to contextualise and understand the unusual experiences. This is about changing the distress but it is also about something far greater. It is about the truth of psychosis. Perhaps it is an evolutionary step or perhaps it is connection with an alien/higher being. The latter - the religious interpretations - are much easier than the "it is a government conspiracy and I am being monitored by a secret agency" sort of thing. The important thing is discovering the truth.
My own experience of psychosis where I prolifically self harmed and was parasuicidal was a battle against a controlling force. It may have been what people call god - and this is the intepretation I use - or it may have been a battle between two consciousnesses, each residing in one half of my brain. The latter idea came to me when I was reading about alien hand syndrome. People who have their brains cut in half can find one half of their body acts independently and without the control of the main consciousness.
This last paragraph I definitely won't pass on to Rethink. Regardless though, people have a right to take whatever significance from their experiences.
What do you think?
In solidarity
Arj
Sent from my smartphone
Arj,When I was locked up they first gave me a label of schizophrenia. I honestly have no idea why or what it meant to them. A week later I transferred to a different unlocked place as a coerced voluntary, where they gave me a label of depression. The only difference I could see was that the first place was a dungeon where there was nothing to do and the broken TV was not fixed (and they served us coffee mixed with tea "because some people like coffee and some people like tea"), the second place had cushioned chairs and a sofa and a working TV. Depression was a "nicer" label that went with the nicer furnishings and the pretense of voluntary status. Schizophrenia meant they wanted to drug me with haldol, at a time when there was no right to refuse recognized even in principle. A woman who refused the drugs for days, and also kept her own clothes (kind of hippie-like - flowing skirt and Indian gauzy cotton shirt, and flowered sandals) was eventually straitjacketed and forcibly injected, just for those reasons.No one ever told me what schizophrenia meant to them or why they applied it to me. Nor do I want to guess. I didn't speak to anyone there and the psychiatrist could only observe that I was crying and afraid to a point of shock.So in my experience schizophrenia isn't an illness or a condition or a kind of madness, it's a designation of exclusion and selection for annihilating and disabling application of mind-altering drugs.My experience happened in the U.S. in 1978. But nothing in the intervening years makes me think there is any more validity to psychiatry's use of the label. When someone tells me they or someone else is schizophrenic I need to know what it means. Some people use it to mean voices/visions, thinking you can fly, or a profound experience of death and rebirth. Or just generally madness or being out of touch with consensual reality, in touch with a different reality, etc. I'd like to explore what these things mean without having to medicalize it or use a Latin or Greek derived big word.I'm interested to know what your experience and thoughts are about schizophrenia and what you think the commission needs to know.Take care,TinaTina Minkowitz, Esq.Center for the Human Rights of Users and Survivors of Psychiatry
On Jan 21, 2012, at 6:06 AM, Arj Subanandan wrote:Hi Enusp
Rethink is one of the leading mental health charities in the UK and has launched a Schizophrenia Commission to celebrate (ugh...as if there's anything to celebrate) 100 years of the label of schizophrenia.
I'm putting together a personal response. If anyone knows of any relevant research or has any views please feel free to pass them on to me to inform my personal response to the Schizophrenia Commission.
I would encourage anyone in the UK to respond to Rethink's SC because I expect many of you on this list are the harbingers of the progress which is so desperately needed for those diagnosed with a serious mental 'illness' and they need your views. I'm not a researcher or anything really so please don't think you need to be to have a view which is worth contributing.
I hope the commission is a small step and a giant leap for schizophrenics everywhere.
In solidarity
Arj
Sent from my smartphone
---------- Forwarded message ----------_______________________________________________
From: "The Schizophrenia Commission" <rethinkweb@gmail.com>
Date: 20 Jan 2012 19:15
Subject: The Schizophrenia Commission
To: <arj.name@gmail.com>
The Schizophrenia Commission
Calling all schizophrenia and psychosis researchers!
Posted: 19 Jan 2012 01:20 PM PST
We are finally ready to launch the last of our three surveys on schizophrenia and psychosis. Our third survey is for researchers and research teams to describe their work on schizophrenia and psychosis. We are interested in the impact of research work and ideas for further studies to improve outcomes for people affected and increase our understanding of causes, concepts, consequences, treatments and recovery. Closing date – end of March. We look forward to hearing from you!
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