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Abilities Magazine
| February 22nd, 2004 | |
The ForumThe Philia ProjectFall 2003. Issue 56: pp. 36-37 Forumby Sandra Shields It was six months after my brother was born that the diagnosis of profound mental and physical disability was pronounced. My parents were urged to put their new baby in an institution. The sooner the better, said a doctor who was close to our family. He warned that this little boy with his limited capacities and special needs would have a negative effect on the other children � me and my sisters. It was 1973. Instead of sending David away, my parents joined a growing number of families who were embracing their children with disabilities. Instead of trying to forget their son, they chose to engage with him. The willingness to engage lies at the heart of current thinking about citizenship. While it is common today to believe our role as citizens is confined to the voting booth, citizenship is actually as broad as the common ground upon which we meet. While it is politics in the sense of leaders and elections, it is also politics in the wider sense, as the women�s movement understood, with the insight that the personal is political. When my parents engaged with David, they gave the rest of us kids the chance to do so too. David never learned to talk, he doesn�t walk, he can�t feed himself; but his presence in our lives has been significant. We grew up with a brother who made us comfortable with difference. Childhood friends have told me how important it was for them, as kids in a society still trying to learn the word �inclusion,� to have the chance to meet David when they visited our house. For much of history, citizenship has been about keeping people who are different out of the club. The Philia Dialogues have been exploring a notion of citizenship that brings people in rather than shutting them out. In considering the space where this notion of citizenship intersects with disability, I�ve relied on the reflections of noted Canadian thinkers Mark Kingwell (�The World We Want�) and Margaret Visser (�Beyond Fate�). Intrigued by what motivates us to engage with the world, I put the question to Bonnie Sherr Klein, filmmaker, author and founder of Canada�s first International Festival of Disability Arts and Culture. What all of these sources told me is that citizenship isn�t separate from our personal lives, but that it begins with how we interact with our family and friends. Inclusive citizenship is built on the willingness to engage. It starts in the place where my parents stood when they said �yes� to David. David is so much a part of our family that I had never � until one afternoon last week, a few years short of my 40th birthday � paid attention to the fact that my parents could have made a different choice, that David might have grown up in an institution rather than in our living room, that he might be alive but not in my life. The moment this thought occurred, my chest went tight, I could barely breathe and I broke into tears. Individualism got it wrong. We are not independent atoms. Each of us is profoundly affected and shaped by others. I would not be this particular Sandra if I had a different family. We each exist in relationship with others. In philosophical terms, our identities are co-determined. As Mark Kingwell put it, �My experience, as me, makes no sense without you.� Bonnie Sherr Klein has put it another way: �Maybe �independence� is a misleading concept. Each of us is dependent on others. Perhaps independence is not the ultimate goal, but interdependence: the possibility of doing with and for each other.� This recognition, that we are all twined together, is the bedrock of inclusive citizenship. While David�s life is lived in private, it has not been without public consequence. He is still at home, often on his blankets in the family room, still the calm centre of a busy household, though now it�s grandchildren who keep the air in motion. David has become �Uncle D� and is teaching his nieces and nephews about difference just as he taught his siblings before them. One of my sisters tells me there is a boy with autism in her daughter�s kindergarten, and the teacher has commented that, of all the children, her daughter is best at interacting with him. When my sister asked her daughter about the boy, five-year-old wisdom replied, �Oh yes, he�s just different.� In Slow Dance, Bonnie writes that �people with disabilities have a unique perspective on the meaning of human life.� In my experience, something of this unique vision rubs off on those of us who have the opportunity to be part of the lives of those with disabilities. Last week, when I realized that my brother might not have been part of our family, I felt as though something vital had been wrenched away. I would be a diminished Sandra without David. I felt pain for myself and for my family, for the people we wouldn�t be if David wasn�t among us. We have each been changed as a result of knowing him � he has stretched us somehow. I believe David has made our humanity broader, and, in this, has helped make the world a more tolerant place. The notion that we can make the world a better place is out of fashion these days. A chorus of voices says: �It�s impossible!� �You�re crazy to try!� In the recent Massey Lectures, Margaret Visser warns against this fatalistic approach. �Fate stands in opposition to freedom and has nothing to do with justice,� she writes, and tells us that escape from fatalism lies in paying attention, concentrating on what needs to be understood, asking questions and then more questions, until the point is reached where �something is felt and something must be done.� After 20 years as a filmmaker, and seven years after the release of her controversial film, �Not A Love Story,� Bonnie Sherr Klein had a stroke that left her in intensive care, on a respirator, semi-comatose, unable to speak or move. Over the following years, as she worked through the rehabilitation process, Bonnie began a parallel search to understand her new place in the world. These explorations turned into a series of award-winning radio documentaries and the bestselling book �Slow Dance.� I wanted to know what motivated Bonnie, what made her willing to engage, and she spoke first about her work as a filmmaker. �I made movies that gave people a voice � especially people who didn�t otherwise have a voice or a presence,� she said, and talked about how critical it is, in searching for solutions, that a diversity of voices is heard. For Bonnie, it was a small shift to move her gaze to disability. �The disability work was intensely personal because I was desperate to understand it,� she said. To make sense of her experiences, she used the tools at hand: journals, radio documentaries and, finally, a book. �I was just trying to write my way into understanding.� On the CBC and then in print, her personal search moved into the public domain, taking her insights and experiences to readers and listeners across the country. I probed further, asking if she thought it was possible to make the world a better place, and Bonnie talked about the idea espoused by progressive Judaism of tikkun olam, which means the repair of the world. �It�s not only that we can repair the world, but that we must,� she explained, and we talked about how there are many of us who feel a moral imperative to help remedy the world, whether it emerges from a theological or humanist framework. Mark Kingwell characterizes citizenship as the search for justice between persons. This search is a process that never reaches a perfect end state, there are always new repairs to be done, and every contribution is necessary � especially, I�ve come to suspect, those that our society isn�t good at recognizing. �In the disability movement, we say what has to change is not just laws but also attitudes,� Bonnie told me, saying that people don�t change their attitudes on the basis of information. Attitudes change through experience, they change when our emotions are touched, when our imaginations are captured. �That�s where art comes in,� she said, �and that�s what really excites me. That�s where imagination is.� What art does, Bonnie said, is get past people�s defences. Art has such power to share experience that it moves beyond the specifics that divide people, and brings us a shared world, one where the commonality that binds us is more visible. In �Slow Dance,� Bonnie wrote about discovering the disability movement and sharing the feeling that a revolution was in the making, one where disability is not a problem but part of the solution. �I think that people with disabilities have had to tackle some of the problems that are the biggest ones for our times,� Bonnie said, �the problems of diversity, the problems of limitations, adaptation, sharing, learning how to be inventive, how to be resourceful.� Just as the parts of a gear interlock, become engaged and are then able to transmit power, so citizenship is the place where we can come together, all of us with our myriad differences and unique perspectives, to interlock and discover whether we can generate enough steam to get the world we want. (Sandra Shields and David Campion received the 2003 Hubert Evans Non-Fiction Prize for their book �Where Fire Speaks.� Their work can be seen at www.notebooknine.com. For more information about Philia, visit www.philia.ca.)
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