'I was locked in a psychiatric institution and diagnosed with schizophrenia. After a brief interview with a psychiatrist, I was taken to a room and injected with an antipsychotic drug called haloperidol. When I awoke from that drug-induced stupor, I could barely recognize myself. My tongue was thick. My vision was blurred. Saliva drooled and leaked down my face. The medication made it hard to swallow, so food spilled and soiled my shirt. I began to smell of last night's supper.
Just weeks before I had been a strong athlete who excelled in sports. Now I was in a chemical straightjacket. I moved stiffly and slowly, as if some old woman had crawled into my body and my bones were nothing but arthritic crutches, propping me up against the wall of a mental institution.
Drugged on haloperidol I could not feel anything. I did not care about anything. I could not smile or laugh or cry or think. In the distance I could still hear the auditory hallucinations, but they had lost their power to grab my innards and shake me to attention. They drummed like a dull ache in the background and were easy to ignore. Everything and everyone else were also easy to ignore, because I cared about nothing and felt nothing. I had been muted. I had become the muted body. I had been silenced - erased and disappeared under the tyranny of those small green pills.
It is widely assumed that anti-psychotic drugs are helpful because they suppress psychosis and restore one to a more familiar sense of self. In my experience, antipsychotic drugs at these high dosage levels were not helpful. Haloperidol did not return me to a non-psychotic, more familiar self. Rather, it delivered me into a negation of myself, an absence, a silenced echo of my former self.
Haloperidol replaced me with the drugged-me. And worst of all, the professionals kept telling me how good this medication was for me. They kept telling me I would have to take this medicine for the rest of my life. They said I should be grateful modern psychiatry had a medicine that could so quickly restore my functioning. The psychiatrist said my hallucinations and delusions were gone. The symptoms were abating he said. I was more in control and I was stabilizing he said.
From my perspective, however, things appeared quite different. I did not feel better. The so-called hallucinations were still there although they were no longer a bother to the people around me. I was not more in control but rather, I felt controlled by the medication. I was not stabilizing. Rather I was becoming a shadow of my former self, unable to think or feel.
I was not beginning to function. Instead, I was learning to play the game in order to get discharged from that institution as soon as possible. I was not grateful for this medicine. I was not grateful for this help. As far as I was concerned, this help was not helpful.
What I am describing here is a clash of perception between the psychiatrist and myself. This chart summarizes some of the main points of that clash of perception:
Table 1: The Clash of Perception
Psychiatrist vs Me
"You are getting better" vs "Your cure is disabling me"
"Your symptoms are gone" vs "My symptoms no longer bother you"
"You are more in control" vs "Haloperidol is controlling me"
"You are stable" vs "I can’t think or feel"
"You are functioning again" vs "My life is without meaning or passion"
It is important to remember that this clash of perceptions I am describing went largely unspoken and unacknowledged. The psychiatrist and I did not sit down and have a thorough discussion of our divergent perspectives.
It is also important to see there is a terrible power imbalance here. This clash of perception occurred between a psychiatrist and myself during one of my most vulnerable times. Because of his enormous power in relation to me, the psychiatrist's interpretation of me became the only valid story. His story about me became the truth and my story, my experience and my voice were silenced.
What I am describing, therefore, is a double silencing. The first silencing was imposed by a therapy (haloperidol) that muted me. The second silencing was imposed when my experience of the therapy was ignored and the professional's interpretation of the outcome of therapy was prescribed as the only truth.
The silencing I am describing is not confined to people with psychiatric disabilities. Silencing people with disabilities through the assertion of the expert's professional opinion occurs routinely. It is not uncommon for an expert to declare that a person is making good progress in a sheltered workshop while the person with the disability feels like a failure because they are not working a real job.
It is not uncommon for a rehabilitation specialist to applaud the progress a child is making in speech therapy, although the child is quite clear they are tired of all the therapy and would rather play with kids in the neighborhood after school. In these and thousands of other instances, the professional's interpretation becomes the official story while the stories, the voices and the experiences of disabled people are silenced.
Who gets to say if a therapy is working? Whose directives are followed and whose are silenced? Who gets to say if professional help is helpful? I would propose that help which ignores the perspective and autonomy of the person with a disability is toxic help. Toxic help is, at best, a waste of time, money and resources and, at worst, toxic help hurts and may even kill.'
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