«CHAPTER 4 The stairs didn’t go anywhere!: A Self- Advocate’s Reflections on Specialized Services and their Impact on People with Disabilities ...»
Giangreco, M.F. (2004). "The stairs didn't go anywhere!": A self-advocate's reflections on specialized services and
their impact on people with disabilities. In M. Nind, J. Rix, K. Sheehy, & K. Simmons, K. (Eds.) (pp. 32-42).
Inclusive education: Diverse perspectives. London: David Fulton Publishers in association with The Open
"The stairs didn’t go anywhere!": A Self-
Advocate’s Reflections on Specialized Services
and their Impact on People with Disabilities Michael F. Giangreco The information included in this article is based on a semi-structured interview conducted with Norman Kunc by Michael F. Giangreco on July 4, 1995 in Montreal, Quebec, Canada. The interview was tape recorded with Mr. Kunc’s permission and was transcribed. The contents include selected portions of that interview and have been reviewed by Mr. Kunc to ensure that his opinions and ideas have been accurately presented in his own words.
Norman Kunc (pronounced Koontz) is a sought-after consultant and speaker on a wide range of educational, disability, and social justice issues. He was born with cerebral palsy and attended a segregated school for students with disabilities from the age of three until 13 when he was included in a general education school. Earning a Bachelor’s Degree in Humanities and a Master’s Degree in Family Therapy have augmented a lifetime of learning from his experiences of being labeled ‘disabled’ in North America. I have had the pleasure of being in the audience on a number of occasions when Norman has spoken, and each time I have come away with more to think about and act upon. His message is at times provocative and his insights are undeniable. Here is a bit of my afternoon with Norman Kunc.
Michael: Norman, thanks for taking time to sit down with me. Let’s start by establishing what specialized services you received when you were in school.
N or m an : Physiotherapy, occupational therapy, and speech therapy. Each specialist had her own room and they would pull me out of my classroom for a half an hour to an hour to get therapy, two to three times a week.
Mi ch ael: Could you tell me about some of your memories receiving those services?
Norman: First, I’d like to say that it’s fitting that we are talking about rehabilitation issues on none other than Independence Day! To answer your question, I remember thinking that the physical therapy room was a very weird place.
Mi ch ael: Why do you say that?
N or m an : They had all this strange equipment and weights and mirrors and bars. But the weirdest part of the physical therapy room was the staircase. There was this staircase with a handrail on either side but the stairs didn’t go anywhere – they went right into the wall! The physical therapist would come up to me and say, ‘Walk up the stairs.’ And I’d say, ‘Why? They don’t go anywhere.’ But she’d say, ‘Never mind, walk up the stairs.’ So, I’d walk up the stairs and nearly kill myself getting up there. When I got to the top the physical therapist would say, ‘Good! Now walk back down the stairs.’ I’d say, ‘Wait a minute! If you didn’t want me up here in the first place, why did you ask me to walk up here?’ Mi ch ael: Did she give you a reason?
N or m an : She would say, ‘You want to walk better, don’t you?’ I didn’t know any better, so I said, ‘Yeah.’ And what I learned at that moment in life was that it was not a good thing to be disabled and that the more I could reduce or minimize my disability the better off I would be. When I was in segregated school, I fundamentally saw myself as deficient and abnormal. I saw myself as inherently different from the rest of the human race. The implicit message that permeated all my therapy experiences was that if I wanted to live as a valued person, wanted a quality life, to have a good job, everything could be mine. All I had to do was overcome my disability No one comes up and says, ‘Look, in order to live a good life you have to be normal,’ but it’s a powerful, implicit message. Receiving physical and occupational therapy were important contributors in terms of seeing myself as abnormal. Every part of my life, from the minute I was born, told me that I was abnormal, whether it was getting physical therapy, going to Easter Seal Camp, or wearing leg braces at night.
Mi ch ael: How did you react at the time?
N or m an : Well I wanted all those things, to have a good life – so I ended up declaring war on my own body. It was me against my disability; and my disability was my enemy.
I was bound and determined that I was going to conquer that disability.
Mi ch ael: How did you propose to do battle with yourself?
N or m an : I turned into a kid that physiotherapists only see in their dreams. If they wanted me to do ten repetitions of a certain exercise, I did 20. If they wanted me to hold a precarious balance position to the count of ten, I held it to the count of 30. I was determined I was going to get to be a valued person. And if that meant conquering my disability, so be it.
Mi ch ael: These early experiences happened when you were in a segregated school.
What happened when you went to a regular school?
N or m an : I thought I could overcome my devalued status as a person with a disability by being in the regular school. At first the school administration wanted to send me to a special class for students with physical disabilities in a regular school about ten miles from my home. I said, ‘The hell with that!’ First of all, I wanted to go to the regular school in my neighborhood because, for me, I guess that represented being valued.
Secondly, I was offended by the stigma of being in a special class. I didn’t want all my nondisabled neighborhood friends to see me getting on that big blue bus for kids with disabilities. Why not just hang flowers around my neck with a sign that says ‘crippled’.
I wanted to avoid all of that.
Mi ch ael: From what you are saying it sounds like there were a lot of professionals who saw your disability but didn’t see you as a person.
N or m an : That’s true. If I had to describe myself to you now I’d say that I have an undergraduate degree in humanities and Master’s in family therapy. I got divorced, now I’m remarried and I live with Emma and two step kids. I like classical music and jazz. Having cerebral palsy is one small aspect of who I am: it’s part of who I am, but it’s not the defining characteristic that makes me who I am.
Mi ch ael: When people disproportionately focus on your disability, how have they treated you?
N or m an : People make unwarranted assumptions about who I am as a person because of my disability. People in airports sometimes think I have a mental disability or treat me like a child. Sometimes they assume that I need their help. People sometimes assume that people with disabilities are asexual, have unresolved anger, are in denial, or that all of us must be lonely or sad, that our lives are filled with frustration. The fact is that a very small part of my life gets blown up into a very big part. Unfortunately, too many people see me as nine-tenths disability, one-tenth person.
Mi ch ael: What has been the impact of these assumptions on your life and lives of other people with disabilities?
N or m an : It makes you feel that you are not quite human. Almost like you have to earn your right to be human. In earning your right to be human, what do you get? Human rights! So when you are perceived as less than fully human, what typically are rights for nondisabled people become privileges for people with disabilities. It’s like if you have a disability they are doing you a favor by letting you live in the community. As soon as I demonstrate I am mentally capable then I have earned my right into the community. I see this going on not only with people with disabilities but also around the whole issue of poverty. You have to demonstrate your merit. It’s categorizing people as producers versus non-producers. When people see that I am intelligent and articulate, the message is, ‘Even though this guy has a disability, he can make a contribution to society. Therefore we’ll let him in!’ Mi ch ael: It sounds like what you have experienced is a classic example of what Marc Gold called the "competency/deviancy hypothesis" where the more competent the person is perceived to be, the more others will tolerate deviance in him. Of course, even that language, the term ‘deviance’, is so loaded with negative connotations.
N or m an : I prefer to think of my disability as type of diversity rather than deviance or deficiency; my disability is just one characteristic or attribute among many that make me who I am. People do not need to prove their worthiness. Obviously, what we are talking about here is a human rights issue. We need to establish the unconditional and inherent worthiness of people regardless of what combinations of diverse characteristics they present.
Mi ch ael: Let me tell you a story from when did you start feeling as though your disability was a characteristic of your personal diversity rather than a deficiency?
N or m an : When I was a university student. One night I was at this pub with a bunch of my friends. At one point, one of the guys started imitating my voice. It surprised me and I didn’t like that he was doing it. So, afterwards I went up to him and said, ‘Why did you imitate my voice?’ He said, ‘Because that’s how you talk.’ I told him, ‘Hey, I’m articulating my words. I’m using my voice clearly. I’m not drooling. You imitate my voice and my whole show goes out the window.’ And he said, ‘Norman, why are you trying to be non-handicapped?’ And that caused a categorical shift in my thinking. We talked for a long time that night and went through a lot of beer. Finally it dawned on me that I had the right to be disabled. And rather than seeing my disability as a deficiency, I began to see it as part of the inherent differentness among people; it was simply a characteristic. I came to understand that it really was no different from any other characteristic like height or weight or race or gender. So to say it another way, prior to that incident in the bar, I saw myself as abnormal. You were the normal people, I was abnormal. You are all nondisabled, I’m disabled. I saw myself as categorically different from most of the human population. I was part of a group with all the other abnormal, deficient, broken, disabled people. Once that shift happened to me I said, ‘Wait a minute, I’m part of the normal diversity of the human community. I’m normal in that I am diverse.’ I began to think, ‘Wait! Why has this small characteristic of who I am been used as a criteria to put me in a segregated school, to do this to me, to do that to me?’ Everything that happened to me suddenly came up for evaluation.
Mi ch ael: Let me back up for a moment and ask you about your experiences receiving therapy services when you went to regular school. Did you continue to receive the same types of services to the same extent?
N or m an : No, it pretty much stopped.
Mi ch ael: Who made that decision?
N or m an : Well, I think the therapists actually made the decision because they thought I could do a lot of things, plus I wanted to stop anyway. Ironically, my speech improved the most the year I quit speech therapy.
Mi ch ael: It sounds like by high school you had strong ideas about what you wanted for yourself. Did those coincide with what your therapists thought was best for you?
N or m an : I believe they thought they knew the best destination for me, but they were mistaken. The therapists usually saw the destination as one of two things. The more naive therapist often perceived the destination as being one of normalcy; to make me more valuable in society’s eyes. So that was one destination. This may not even have been conscious to the therapists; I think it may have been unconscious.
Mi ch ael: Do you think people in special education and rehabilitation fields are professionally socialized and trained to think that way?
N or m an : Yes, absolutely, but it goes beyond that. I think the field of rehabilitation is to people with disabilities what the diet industry is to women. We live in a society that idolizes a full and completely artificial conception of bodily perfection. This view of the ‘normal’ body tyrannizes most, if not all, women so that far too many women in our culture grow up believing that their bodies are inadequate in some way. The issue here is that I want professionals to think about the whole parallel between dieting and rehabilitation. That’s why I always tell people with disabilities, ‘Never do physical therapy with a therapist who is on a diet!’ If she hates her own body, she’ll inevitably hate yours!
Mi ch ael: You said there were two views. You talked about people who want to strive toward "normalcy," whatever that is. What is the second view you alluded to earlier?
N or m an : Now there may be some therapists who say, ‘Wait a minute, I don’t want to make people more normal. I want to help them function better so that they can do more things.’ Although that seems to be a far more enlightened perspective, I still have serious concerns about it because professionals mistakenly equate functioning level with quality of life and that may not be what’s going on for some folks. Professionals say, ‘If I can help you function better, then your quality of life will improve.’ Mi ch ael: This is a very mainstream view. What are your concerns with that way of thinking?