Help is not help if it is not helpful

Silence: What We Don't Talk About in Rehabilitation


Patricia E. Deegan Ph.D.
Presented at SKUR Conference, BODØ, Norway
June 14, 2005
Copyright © Pat Deegan, PhD & Associates, LLC.


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Good morning. Thank you for this opportunity to speak with you today. I really like the title of this conference: Det Vi Ikke Snakker Om - What We Don't Talk About in Rehabilitation. What a great subject for a conference! In the next two days we will have the chance to explore silences. We will have the chance to examine some of the things society and the rehabilitation professions don't talk about, or prefer not to listen to.


I think it is significant that we are having this conference about silences in Bodo, above the Arctic Circle in Norway. Ever since I was a young girl, I have dreamed of coming to the Arctic. As a young girl, I would imagine myself standing utterly alone on a flat, frozen landscape of ice and bright light. In my mind's eye I was always a tiny red spec in a white ice field, wearing a red hooded jacket that fluttered like a Buddhist prayer flag against the summits. I would imagine that perhaps I was the first and only human to have stood on that precise spot. And as I imagined myself standing on that ice field, the thing I most wondered about was what the silence of that place sounded like. What does arctic silence sound like? What is the sound of a silence so vast and pristine and still? What is the sound of arctic silence, with me standing in the midst of it, unspeaking, beholding, and being held (beheld) by it? Surely, I imagined, such a silence would be a good and wondrous thing. At church I had heard the psalm (46:10) where God said, "Be still and know that I Am". Even as a girl I wanted to know that stillness and that silence.


I never did get to the Arctic as a child. Instead, the silence I imagined in my childhood was shattered when, at the age of 17, I experienced the onslaught of distressing voices, or what clinicians call auditory hallucinations. I remember exactly where I was when the distressing voices started. I was a passenger in the front seat of a car that was going down a highway with a lot of curves on it. As each new curve loomed in front of me, a voice would hiss, "Watch out. It's coming." My stomach would clench, a terror would come over me, the car would round the curve and approach the next one. Again a voice would curse, "Killing. Spilling. Watch out it's coming". I remember looking around to see where these voices were coming from, but I could not see who was speaking the words. However, I did notice that everyone else in the car seemed unperturbed, as if they were just listening to the radio. Soon after, I began to notice that instead of being upset by these terrible voices, all the people in the car were glancing sideways at me with their lips turned up in barely disguised snarls. Were they part of it? Were they part of what was coming? What was coming? What did the voices mean? I yelled for the driver to pull over to the side of the highway, stumbled out of the car and vomited as the voices laughed at me.


Following two weeks of such torment, 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	Me
You are getting better	Your cure is disabling me
Your symptoms are gone	My symptoms no longer bother you
You are more in control	Haloperidol is controlling me
You are stable	I can’t think or feel
You are functioning again	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.


Help, and in particular toxic help, is not a topic that is discussed often in professional rehabilitation cultures. The nature of help is one of those topics about which we are often silent because we are too busy being helpful to stop to talk about it. But we must break that taboo. We must dare to talk about help because power, including the power to oppress, often disguises itself as help. Power-disguised-as-help is used to silence disabled people. Paolo Freire (1989) says that oppressive power submerges the consciousness of the oppressed into a culture of silence. Toxic help oppresses and silences people with disabilities. Just like the oppressive silencing I experienced with the psychiatrist, those of us with disabilities have been the recipients – whether willing or unwilling – of a lot of toxic help. We have become experts at seeing oppressive power cloaked in the disguise of help. * From that silence has emerged the irreverent and emancipated voice of people with disabilities or, as we call ourselves, the dis-labled:


Perhaps one of the most fundamental critiques that the disability community makes about toxic help is that it is not unusual to find ourselves completely surrounded by helpers yet still unable to find help. Cartoonist and disability activist Scott Chambers (2000) captures the irony many disabled people experience, that is, the irony of drowning in rehabilitation help that is unhelpful.





  
*Scott Chambers calls this piece, "Tested and Proven Methods of Drowning in Help". * In this first cartoon strip, we see a person in the water who looks pretty distressed. He is calling out "Help!". Next we see the person looking up into the air only to discover that a wheelchair has been thrown to him. In the next slide we see that the wheelchair, having landed on the man's head, is now sinking along with the man, to the bottom of the sea.









*In the second comic strip we see a man who is also looking distressed, floundering in the sea, and calling out "Help!". Next we see the man looking up into the sky with a smile on his face. Paper money is floating down from the sky. In the final scene we see the man has once again drowned in the sea, with the paper money floating on the surface above him.







*The final cartoon in this series once again shows a distressed person in the sea, crying out "Help!". This time help comes in the form of a gigantic, heavy book that has the title, "Report on Drowning." The report on drowning comes flying down from the sky and the heavy book hits the man on the head, drowning him under the water while the report on drowning floats above him.


*The moral of this cartoon story is clear: *There are too many reports on drowning and not enough life preservers! That is, *Help isn't help if it's not helpful. *Help that is not helpful can actually do harm. *Being helpful requires that professionals ask us what we need. But asking is never enough. Professionals must also listen to what we say. In this way *help becomes something that is co-created between the disabled person and the professional. When help is co-created as an explicit agreement between the professional and the individual, then silencing is avoided.


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