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Ken Steele was a fascinating and resilient character and this book is a testimony to a life led within the world of schizophrenia, a life dominated by fear and psychiatrists. Steele was a schizophrenic whose voices stopped in 1995 after some 30 years of their persistent presence. As his voices stopped he began to work on a campaign to register the 'insane' as voters within New York State, gradually building up a political constituency as part of an ongoing strategy of empowerment for people within the psychiatric environment. According to all the brief biographies that I found, he became a powerful and eloquent exponent of empowerment. His autobiography is a fitting testament to the dire need for a clear and radical rethinking of the way in which schizophrenia is treated.
There are literally hundreds of books on the subject of schizophrenia, as even a cursory search at Amazon will reveal. There is a vast and varied literature that includes medical, personal and socio-political accounts. Whilst Steele's autobiography is plainly personal, its story tells us as much about the psychiatric environment in which he lived as it does about Steele himself. From the first signs of schizophrenia, denied by his family, through to the rape he suffered within a psychiatric ward, the main struggle Steele faced was as much with the behavior of those around him as it was with his own schizophrenia.
It was this aspect of the story that was most disturbing. As a reader it was easier to read Steele's account than other accounts by schizophrenics. There are at times unsettling effects when reading the histories schizophrenics tell of their lives. Those minor inconsistencies which we perhaps all would fall prey to when writing an autobiography become possible symptoms of a delusional state. There is thus a double bind for the readers of schizophrenics, one that can be felt when reading Steele's story since he describes a continuous string of deceptions and embellishments in his dealings with psychiatrists. He learnt how to 'tongue' medicines whilst within psychiatric institutions and subsequently took up a practice, common to many schizophrenics no doubt, of 'self-medication', whereby he would alter the amount he took of a particular medication from that prescribed by the doctors. He also engaged in a lot of fabrication with regard to his life story. The fact that these deceptions seem eminently rational within the context of Steele's story only adds to the concerns that are raised regarding the establishments and psychiatrists who were supposedly helping Steele. Whilst it is encouraging to read of Steele eventually meeting with doctors who approached his situation with care and open-mindedness, as well as to read of the admirable re-establishment of a productive life that he achieved, it is devastating to realize that it took thirty years to reach such a point. It is all the more galling to the realize that he had barely five years left with which to lead such a life since the effects of the previous thirty years had literally destroyed his body.
What Ken gives us, then, is not simply a battle with schizophrenia or the voices and delusions as a personal problem. Ken Steele's book is a journey through the system, an account of the psychiatric oppression encountered by schizophrenics. Steele is not, though, engaging in any polemical argument against psychiatrists, simply telling a story, maintaining a remarkable willingness to return to the system which failed him for so long. This perhaps is the double bind of the schizophrenic and of those who want a more human and rational approach to the difficulties encountered by those we term schizophrenics. Whilst there is a legitimate argument over the role of psychiatrists, even perhaps over the very way in which we understand insanity, there is also a practical problem faced by schizophrenics and those who care for them. The practical problems can only be helped by the activities of Steele and by encouraging a continuation of such activities: empowering the 'insane' through fighting for civil rights, better social and economic provision and political representation. Steel also shows that 'advocacy' can not only work as a strategy for developing better long term policies and practices it can also operate on the personal and individual level, as a way of re-establishing a sense of identity and purpose in a life that is beset by a level of self-doubt any one of us would find intolerable to live with permanently.
There is one aspect to the book that is troubling however. Steele's eventual relief from the voices came as a result of a new medication he was given called risperidone. Interestingly, when he is offered this drug it is the only time the doctor prescribing it reasonably suggests that he will not have to continue with it if it he doesn't like it. As Steele says, "no other doctor had ever given me that choice" (P.184). He agrees to take the medication, although even then at "a lower dosage than was prescribed" (ibid.) and after about six months he notices his voices have stopped. Such effects with various drugs have been reported and are obviously worth following up with careful monitoring, yet there is a sense that Steele's story is being pushed by some people who see it as a personal account of a drug working. This impression is strengthened when it is found that Janssen Pharmaceuticals, the company that manufactures risperidone (as Risperdal) gave out free copies of Ken Steele's book to everyone that attended the 2001 Kenneth Johnson Memorial Library Book Awards, held by the American organization NAMI-NYC (National Association of Mental Illness - New York City) on May 2 this year. Such behavior by drug companies does nothing to encourage a sense of objectivity within the debate on schizophrenia. The profit-motives behind the activities of the drug companies and the psychiatric institutions, in particular in America, must be thought of as open to question since it is precisely these institutions that failed people like Ken Steele for thirty years.
My only criticism of Steele in terms of his policy towards schizophrenia would perhaps be that he too bought into the idea of a legitimate role for profit when he took the notion of 'mental health consumers' as liberation from the passivity of the label 'patient' (P.152). Whilst perhaps initially giving a new sense of 'rights', unfortunately I feel this approach would eventually lead into yet another cul-de-sac. The important thing, however, is not whether I or anyone else fully agrees with everything he says but that Steele's voice and the voices of those like him are heard and placed at the center of the debate around schizophrenia.
© 2001 Matt Lee Matt Lee, PhD research student, Philosophy, Sussex University, UK.
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