In Spite of My Disability
Norman Kunc & Emma Van der Klift
Originally Published in: Villa, R., & Thousand, J. (Eds.) The Inclusion Puzzle: Fitting the Pieces Together.Ed: Villa, R., Thousand, J. Washington: Association for Supervision and Curriculum Development. 1995.
Norm: Emma and I were invited to speak at a conference on inclusive education. After one of our workshops, a young woman approached Emma. On the verge of tears, she explained that she had a ten year old son with cerebral palsy. "Until today," she said, "I never thought about the possibility of marriage, or even a loving relationship for him with anybody but his family. Seeing you with Norm has changed all that. Thank you." Emma smiled, and reached out to touch her shoulder.
Then, the kicker. "I think it's amazing that you love Norm in spite of his disability."
Amazing? In spite of my disability? I overheard and felt insulted, overwhelmed by the implications of her comment. One more time, relegated to the sub-human. Not a real man.
I was filled with an overpowering urge to "educate" this woman ... through retaliation. I tried to invoke my undergraduate training in rhetoric and debate as I approached her. A suitably caustic response was forming in my mind. Luckily, Emma saw my approach in time. She could tell by my increased spasticity that I'd overheard and was in revenge mode. She stepped deftly in front of me, blocked my path, and said to the woman, "I don't think you understand. I don't love Norm in spite of his disability, I love Norm. Period. His disability is part of him. I can't imagine who Norm would be without his disability." The woman walked away, obviously confused. Emma turned to me, "Feel like a double scotch?" We left in search of the bar.
Emma: It's not really that simple. The truth is, I never get used to it. A quick karate chop to the esophagous. A sharp smack on the psyche.
Norm: Needless to say, Emma saved me from weeks of self recrimination and guilt, to say nothing of how I would have wounded that woman. To be fair to myself, I'm usually more understanding than I would have been that day. I know there is no excuse for retaliation, especially as vicious as mine was going to be. Nevertheless, the words "in spite of" reveal the difficulty this woman had seeing me as a person, let alone a man. In her mind, I seemed to be a collection of abnormal speech patterns and involuntary movements. Trapped behind an opaque wall of cerebral palsy, it was impossible to correct that vision, let alone explore what we might have in common.
Situations like these happen all the time. Unwarranted assumptions and inferences get made about who I am as a person or what my life is like, solely on the basis of my disability. Many people, for example, assume that all people with cerebral palsy have a limited intellect. Therefore, when they meet me, they assume a mental disability. Some people think cerebral palsy's a disease, so they don't want to touch me, in case they catch it. Still others see me as a charity case, someone to feel sorry for.
Emma: Assumptions and inferences. Polite words for prejudice.
Norm: When people first meet me, they tend to see me as 9/10 disability, 1/10 person. What they see as paramount are the things that mark me as "different" -- the way I walk, speak and move. The disability expands in their eyes, throwing a shadow over me and my life in the same way that a shadow on a sundial widens in the afternoon light. My disability is perceived as being more influential than it actually is.
Let me counteract that view for a moment, and describe myself to you - as I see myself. First, I'm a white male who grew up in Toronto, Canada. My father is Polish, my mother is English. I have an older brother and sister, nieces and nephews. Our family is Anglican, but I grew up in a predominantly Jewish neighbourhood. I did an undergraduate degree in Humanities, and a Master of Science degree in Family Therapy. I like sailing, and used to compete in local and regional races. I'm married to Emma, and live in Port Alberni, British Columbia. I am a step-dad to Jodi, Erinn and Evan. We live in an old house we've renovated and love. Emma and I have our own business as consultants. We share a passionate interest in social justice and conflict management. I enjoy computers, classical music and Greek food. I play the drums, although not well. I have an uncanny ability to remember phone numbers and jokes. I also have cerebral palsy.
Emma: I have an affectionate recollection of Norm and Evan. In this remembered vignette, Evan is about five years old. The two of them are repairing the brass fireplace surround; an odd, rickety thing that I've carried around from house to house with me for years simply because I like its funny almost-art-deco shape. Unfortunately, in addition to its charm, it mysteriously loses its stabilizing screws on a regular basis.
Norm is replacing the screws laboriously, but since fine-motor control is not his strong suit, it's a difficult task. "Would you help me, Evan?" he asks. After explaining what has to be done, he watches as Evan carefully puts the screws in. "I know why you need me," Evan says proudly, "it's 'cause you're wiggly, right Norm?" "That's right, Evan. I'm wiggly." An unusual, though apt, description of cerebral palsy. "I'm not wiggly," Evan goes on, "but I'm not too strong yet, either. You're wiggly, but you're strong You can pick up big, heavy things.." He walks away, musing about this apparent paradox.
Norm: Cerebral palsy is a small part of who I am as a person and what my life is about. I've become so accustomed to making daily accommodations for my disability that I often forget I have one. When it does come into my awareness, I simply see it as part of my life. I honestly don't think about my disability that much. Its boring. There are other things to think about.
The "in spite of" comment not only implied an exaggerated view of my disability, it also presumed a deficiency within me. The inferences people make about my disability reveal more about their stereotypical views about the IDEA OF DISABILITY than about the limitations of a disability itself. It seemed that, for the mother, I was simply a defective adult, a grown-up version of her defective child. I was abnormal, deserving of kindness and sympathy, yet fundamentally "different". Slightly beneath her words, the unspoken insult is clear. Why would anyone marry a man with a disability? He's ugly, he's broken, not quite fully human. What could he possibly offer anyone? He'd be a burden. If I were married to him, would others think that I couldn't do any better?
Emma:When I tell people this story, or one of hundreds like it that centre around the deliberate or accidental insensitivity of non-disabled people, I am both amused and distressed at the reactions I get. "You have to understand,." they say. I always know what's coming when I hear that phrase. I usually want to sigh when I hear it. Sometimes "understanding" is very tiring, especially when you "have to". "She didn't mean it," they go on. "She just doesn't know any better. In fact, she does it to everyone."
It's true. I actually do know that lots of people who do or say silly things don't mean to be offensive. I know that often they are just trying to be nice, or helpful, but operate out of a set of assumptions based in myth, misinformation or lack of information. And I also know that unfortunately, some people really do treat almost everyone (with the possible exception of those they perceive as more powerful...) with condescension and a lack of respect. I sometimes wonder if the people who listen to my stories don't think I know these things. Maybe that's why they feel that it's their personal responsiblity to edit my experience and provide me with a more "balanced" interpretation of events...
Have I lost my perspective or become unkind? I hope not. I do my share of embarassingly ignorant things. Most of the stories I tell are not without humour and perspective. I try not to blame people, or fall prey to "evil oppressor/victim" stereotypes. So why the knee-jerk reaction? How come the ten minute sermons on offering up the other cheek?
It occurs to me that there's more going on here than meets the eye. There's a message underneath the message. When people ask me to "understand" the ignorance and prejudice of others and swallow my pain, they're asking me to be quiet. They're saying, "It's not really like that. You're imagining things. You're overreacting. You're paranoid."
I guess I can't accept that it's OK for people to continue not to know any better. Silence and compulsive "understanding" never did much to challenge or change the status quo.
Norm: I'm sometimes asked, "You've accomplished so much in your life with a disability; have you ever wondered where you would have been if you hadn't had cerebral palsy?" For me, the answer is obvious. I'd be a drummer in a blues band. I work on social justice because I can't do triplets on a ride cymbal.
An overstatement, obviously, yet it 's truthful enough to engender a moment of existential reflection. Would I have followed of life of speaking and writing about human rights issues if the world of musical composition and performance were open to me?. I honestly don't know. I do know that, knowing what I know now, if I were given a choice, I would choose to live with cerebral palsy. This statement invariably evokes bewilderment and skepticism among non-disabled people. They are firmly convinced that I would be "better off" -- and hence, prefer -- to live a non-disabled life. What they fail to understand is that cerebral palsy is an integral part of who I am. My identity is the product of my history. My history is that of a person with cerebral palsy. If I didn't have cerebral palsy, I wouldn't be who I am; I'd be someone else. Frankly, I like who I am, I like my history, I like my life. I'm not sure I'd sacrifice who I am for the sake of normal movement and speech.
Many people assume that living with cerebral palsy means that I am endlessly confronted by my body's limitations. Actually, this is not my experience. Having cerebral palsy means living a life in which innovation, improvisation, creativity and lateral thinking are essential. In practical terms, it means knowing which cup fits snugly into the sink drain and doesn't tip over when I pour coffee. It means finding the same challenge and enjoyment in finding my balance on an icy sidewalk that my friends find as they master tai-chi. It means being ever-conscious of the number of drinking straws in my possession in the same way that a smoker is always aware of the remaining number of cigarettes. It means paying attention to breathing and articulation, like a jazz singer crafting a phrase. It means bracing my wrist on the table before I grasp a glass of wine in the same way that Emma braces her left hand when she threads a needle. As far as I know, Emma does not long to be a brain surgeon every time the eye of a needle eludes her thread.
Emma: I don't have a disability. Norm does. We have to negotiate both a personal and a professional relationship. This presents some interesting dilemmas. Who does what? What's a fair division of labour? Conventional solutions to the "fairness" dilemma just don't seem to work for us. We've had to reinvent the rules. It's like street theatre -- we're continually improvising. We change the rules, or make up new ones as we go.
Cooking is difficult for Norm. It isn't that he can't, but it requires an inordinate amount of effort, planning, balance and innovation. At the right time, cooking can be a challenge, an interesting problem to solve. Mostly it's arduous and time consuming. On the other hand, I love to cook. It's cathartic, creative and different enough from what I do for a living to provide me with a much-needed reprieve. So I cook. I also clean. Norm lifts heavy things. He takes the garbage out. He also takes care of office and travel trivia and returns more calls than I do. Sometimes our roles appear deceptively traditional and gender-specific; sometimes they don't. For example, I read a lot. Norm reads less. I'm primarily a divergent thinker; he's more convergent. I become overwhelmed by the sheer volume of what I've read; Norm has an incredible ability to create coherence out of chaos. Rather than undertaking lifelong remediation with each other, we use our differences in complementary ways. I still can't believe that a valuable part of our work together involves the luxury of reading for me! I read and highlight, Norm synthesizes, we both write. Our work is stronger. We're happier. Our strengths are utilized and our weaknesses seem more irrelevant. Interestingly, our continued collaboration has helped me to become more organized, and Norm is reading more.
In the quest to figure out what equality means, many of us confuse it with symmetry. The commonly accepted definition of "fair" seems to be "a tidy thwack down the middle of everything." It's as if we believe that equality can be mandated, maintained and meted out by an exacting and humourless accountant. We've decided to take a longer view of equity. We know it isn't about treating people the same, ending up with a carefully balanced sheet at the end of each day. It's about quality of life, negotiation, interdependence and long-term relationships.. We're learning that giving means contributing what you can where you can, without obsessing about what you don't have or can't do. We know that what we get back is often unexpected, generous and complementary. It creates a different kind of climate -- life is less structured and more fun. Imagination, flexibility and humour are a bigger part of our lives -- things few of us feel we have enough of.
Would I have learned these things if Norm weren't disabled? I'd like to think so, but I'm not sure. Working on the pragmatic level, solving problems that relate to physical differences has helped us learn skills we can translate and use on a more conceptual level. It's not just about how to manage daily life with a disability. It's bigger than that. It's a whole new way of thinking -- about how we orchestrate our relationships and live our lives.
"One answer" thinking seldom works for us, so we've learned to look for multiple alternatives to the "usual" ways of getting things done. As a result, when solutions can't be found inside conventional and jaded modalities, we're remembering to look for different ones. Even if the old answers fit, we're more inclined to wonder if those are the solutions we really need, or just the ones we're used to. We are looking for wider spaces and new models large enough to hold us; synergistic and complementary enough to sustain us. We are always reshaping and reinterpreting our lives. I wouldn't have it any other way.