Silence: What We Don't Talk About in Rehabilitation

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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.

In my opinion, one of the best methods for amplifying the voice and values of those of us who are disabled is * the shared decision making process (Stewart, Brown, et al 2003). In this process, the clinician and service user come to agreement on *what the service need is, *what the course of rehabilitation will be, *what the desired outcomes of services are and *what the respective responsibilities of each party will be in achieving those outcomes. It seems to me that the shared decision process is more than a method. It is an ethical obligation that makes explicit the power of the professional and brings it into alignment with the voice and directives of the disabled person.

Another form of silencing those of us with disabilities is what I call being buried alive. An indicator of how we silence disabled people when they are alive, can be found in how people with disabilities are buried when we die. Here is how people with disabilities were historically buried at state hospitals and rehabilitation centers in the United States:

*This is grave marker number 359. It is round, 3-inch piece of concrete with the number 359 blazed. It is placed in a barren field. Who is number 359? We do not know. We found number 359 lying in this anonymous grave among thousands of other numbered markers in a forgotten and overgrown cemetery at Danvers State Hospital in Massachusetts. Similarly, * we found Jew number 5 at Kings Park State Hospital in New York. You can see the Star of David indicating number 5's faith tradition. But we will never know number 5's name.

We have found literally tens of thousands of forgotten and desecrated graves all over the United States on the grounds of institutions for the disabled. * Here you see row upon row of metal stakes at the mental institution in Milledgeville, Georgia. At this one institution alone, we found over 20,000 disabled people buried in racially segregated, anonymous, numbered, graves.

A wide and gaping silence surrounds these forgotten and desolate places. What these cemeteries all have in common is that the names of people with disabilities are disappeared and silenced forever under anonymous, numbered markers in cemeteries lost to memory and overgrown with decades of bramble and rubbish.

And I would propose that many of us with disabilities have been buried in a similar fashion while still alive. Many of us have experienced our individuality buried and silenced beneath a diagnosis – a C3 quadriplegic, a schizophrenic, a minimally conscious vegetable, a developmental disability, a pervasive developmental disorder, a spina bifida. We know what it means to have our individuality buried and subjugated beneath the carefully calibrated numbers of the Diagnostic and Statistical Manuals. We know what it means to be silenced and condemned to live out a diagnosis, rather than a life.

And just like the people who were buried in these segregated cemeteries, many of us know what it means to be buried away in segregated, special programs, living impoverished lives in the artificial world of the human services, where the only people with you are those who are paid to be with you: a very poor substitute for real life lived in freedom, in fully integrated settings. We are too often buried away in nursing homes, retirement homes, institutions for the chronically ill, state hospitals, state schools and the like. Too many of us live in * handicaptivity, serving a life sentence for the crime of being disabled. I am showing a slide now of a naked man in a wheelchair in a tiled institutional shower. The caption on the slide reads: Handicaptivity: Serving a life sentence for the crime of being disabled. The man in the wheelchair is at the back of a walk-in shower. In the foreground of the photograph is the stainless steel hose that will be used to shower him. You can almost smell the scent of the person who was showered just moments before. Now it is this man's turn to be hosed down. You can almost smell the antiseptic bleach smeared over the stench of stale urine that stains the tiles. His eyes are cast down in humiliation. There is nothing he can do but submit. He is held captive and buried alive in that institution. And just like those cemeteries I spoke of a moment ago, a similar gaping silence surrounds the captivity of our disabled brothers and sisters.

We must break that silence. It is imperative to speak about the systemic oppression that makes being buried alive in segregated institutions such a universal prescription for life with a disability.

To condemn people to live out lives in institutions requires first that we separate ourselves from them. People don't hurt people. People hurt things. Systemic oppression works to "thingify" or dehumanize people with disabilities. The goal of dehumanization is to make people with disabilities into things that can be placed into available beds in special programs that are equipped to meet their special needs. Systemic dehumanization happens in many ways and it is rarely intended to be mean or cruel. In fact, systemic dehumanization which is the prerequisite of requiring people with disabilities to live out our lives in institutions, is often disguised, once again, as help.

Professional helpers learn special terms and words that separate non-diagnosed people from people with disabilities and so construct us as "other" or "object". Mayer Shevin (2003) calls this the language of us and them. It goes like this *:

  • We (non-labeled people) change our minds sometimes. They (people with disabilities) have short attention spans
  • We persevere in tasks. They perseverate
  • We like things. They fixate on objects
  • We have our own opinions. They lack insight
  • We run our own lives. They are noncompliant
  • We love people. They develop dependencies on people
  • We insist. They tantrum
  • We are human. They are...?

If non-labeled people are human, then people with disabilities are what? Different? Differently abled? Physically challenged? Mutants? Genetic anomalies? Mistakes? Accidents of nature? The answer is based on what a culture values. Wolfensberger (1992) describes nine major historical roles into which devalued people are cast, depending on the culture and age in which they live. These historical roles include the person with a disability as: the menace, the subhuman (either animal, vegetable or object), the object of dread, the object of ridicule, the object of pity, the burden of charity, the holy innocent, the eternal child, or the diseased organism. Of course, those of us with disabilities can be cast in more than one devalued role at a time. For instance, as a person diagnosed with schizophrenia, I am alternately cast in the devalued roles of the diseased organism, the object of dread, and the menace. People using wheelchairs are rarely cast in the role of menace but often find themselves the object of pity and the burden of charity.

Despite some differences in the devalued roles into which we are cast, we are all included under the umbrella of disability. The word disability is, historically, a relatively new word. It grew out of cultures like ours in which ability – the ability to work and to produce and consume goods - is highly valued. In cultures that value ability, disability is devalued. However, in an ironic twist, servicing the disabled has become an industry unto itself that is highly valued because it provides work, income and consumption of goods for thousands of medical and rehabilitation professionals.

Within the disability community we sometimes break the silence about this perspective on the medical and rehabilitation professions. We are alarmed at the rate at which new disorders and disabilities are being "discovered". There is a virtual epidemic of ADHD (Attention Deficit Hyper Activity Disorder), Social Anxiety Disorder, Aspergers and the other autism spectrum disorders. The list of disabling conditions is growing rapidly, fueled by the multi-national pharmaceutical juggernaut. Sometimes it seems the professionals are outnumbering us, giving rise to what we call * the Attack of the Gangsta Do-Gooders. Again, the cartoonist Scott Chambers (1999) captures the irreverent humor of the disability community:

* In this cartoon we see a couple of nurses dressed in white, 1950's style hospital uniforms. They are on a city street and they are calling out to a man in the foreground, "Help! You need our help!" Of course this is a play on words. It is actually the nurses who need the help. The nurses need people to need their help.

* The cartoonist then helps us see what happens if the professionals run out of people to help. The heading of the next cartoon reads, "Gangs of do-gooders roam the streets, performing interventions". In the comic we see a nurse rushing up behind a man dressed in a business suit. She reaches out, hand upon his shoulder and with a rather desperate look on her face and says, "You seem stressed sir...Let us help!" The man turns and says, "Help? Yes, I'd like some help..."

The point here is not the people with disabilities don't want help. We do want help. But we want help when we indicate that we want it, and when we can direct how it is carried out.

The final kind of silencing I want to talk about today is called deathmaking. Deathmaking is a term I learned from Wolf Wolfensberger (1993). It refers to any actions or pattern of actions that lead, either directly or indirectly, to the death of people with disabilities (p.1). Deathmaking can be as direct as killing people with disabilities under so-called euthanasia, or it can be as indirect as cutting disability pensions and benefits, so that people must choose between buying food or buying needed medicine.

Now I firmly believe none of us came into our professions with the intention of deathmaking. We came to help. But as we have seen, power and control can disguise itself as help. One of the more pernicious and insidious forms of "help" which is of increasing concern to those of us with disabilities, is State assisted, physician assisted suicide.

Advocates for the right to die argue that people should be assisted or helped to die with dignity. Dr. Kevorkian is a leading advocate of the right to die in the United States. Three quarters of the people that Dr. Kevorkian helped to kill were women with disabilities. They were not terminally ill. They were women with disabilities. Many of us wonder if these women were choosing to cease living, or choosing to cease living under oppression, the shadow of rape and second-class citizenship. We wonder if these women with disabilities would have chosen to die with dignity, if there had been the opportunity to live with dignity (Cleigh 2001). Many of us in the disability rights community are against assisted suicide. We argue that you can not really choose to die with dignity unless you have the opportunity to live with dignity. We want the opportunity to live with dignity. We are not dead yet. We are not better off dead. We want to opportunity to live with dignity.

I am convinced that the very best way to insure that we live with dignity is to put the money that pays for help into the hands of those of us with disabilities. Let us direct where and how rehabilitation dollars are spent. It's time to stop funding rehabilitation programs and segregated institutions and to start putting public dollars directly into individualized, fiscally accountable budgets that people with disabilities can spend as part of self-directed care plans. Let public dollars come directly under the stewardship of people with disabilities and when applicable, their families. Let these rehabilitation dollars flow through a fiscal intermediary and into individualized budgets to become the currency through which people with disabilities can freely purchase the supports we want. Let these dollars elevate us from the oppressed status of service users and patients, to the empowered status of consumers whose spending power will drive the evolution of rehabilitation services.

I believe that putting public dollars under the control of people with disabilities is the final taboo, the final silence we must break through. Why are we so afraid to put money under the control of people with disabilities? Why do we find it preferable to put public dollars into the hands of government bureaucrats mental health corporations rather than the users of services? We know it is possible to run effective, fiscally responsible programs for self-directed care for people with psychiatric disabilities with good results (see resources below for studies etc.). Putting public dollars directly under the control of people with disabilities to use to direct our own care and supports – this is the final taboo, the big silence we must be willing to break open and speak about.

In closing, I would like to return to the beginning. I would like to return to the story of me as a child in my red hooded jacket on an icefield, imagining the silence of the frozen artic tundra. The philosopher Martin Heidegger said that language is the house of Being. If that is so, then silence is the ground upon which the house of Being is built. My prayer is this. That you – you people of Norway whose Arctic silence has flowed through your blood for generations – my prayer is that you will, for a moment, stop helping and draw close to those of us with disabilities. Stop helping and be still. Be still and know that I Am. Be still and know that in the silence our hearts beat as one. Be still and know that we are equal though we are not the same. Be still and know that to live as free men and free women is the heart's deepest desire. And then, let us walk into that silence together.

Thank you.

References

  • Chambers, S. (2000). Four tested and proven methods of drowning in help. Mouth Magazine, Vol. X, 6, p. 24.
  • Chambers, S. (1999). Attach of the Gangsta Do-Gooders. The Gag (Ragged Edge and Mouth Magazines, Advocado Press and Free Hand Press) p.G-9.
  • Cleigh, W.C. (2001). Attempted suicide, completed. Ragged Edge Online, Issue 2, http://www.raggededgemagazine.com/0301/0301ft4.htm (last accessed 5/30/2005).
  • Freire, P. (1989). Pedagogy of the Oppressed (Trans. Myra Bergman Ramos). New York: Continuum.
  • Shevin, M. (2003). The language of us and them. Mouth Magazine, 14,1, p.10
  • Stewart, M., Brown J.B., Weston, W.W., McWhinney, I.R., McWilliam, C.L. Freeman, T.R. (2003). Patient-Centered Medicine: Transforming the Clinical Method 2nd Edition. Radcliffe Medical Press.
  • Wolfensberger, W. (1992). The new genocide of handicapped and afflicted people (2nd revised edition). Syracuse, NY: Author.

Resources on Programs for Self-Determination and Self-Directed Care

  1. The Center for Self-Determination – http://www.self-determination.com/
  2. The Cash and Counseling Demonstration: An experiment in consumer-directed personal assistance services by Pamela J. Doty – http://aspe.hhs.gov/daltcp/reports/ccdartcl.htmhttp://www.independentliving.org/docs4/ar398.html
  3. Webcasts: 1. Self-Direction: Principles; 2. Model Programs (discussion of programs and research findings); 3. Self Direction & Mental Health: From ideas to action (funding Programs for Self-Direction). Broadcasts and Powerpoints archived at http://www.connectlive.com/events/samhsa/