Finding My Place

By Wendy Harris

Bonnie Klein has had some powerful stories to tell. A decade ago, in her film Not A Love Story, she compelled us to look at pornography in a new way - not as harmless male entertainment but as an acid that poisons women’s lives. Now she has a new story to tell - a deeply personal one about her life as a woman with a disability.

In 1987, Bonnie had a life threatening stroke. At first she couldn’t move or speak. But she fought back and relearned what was once automatic - how to swallow, how to sit up and how to get about. Bonnie can now take a few steps with canes but she usually uses an electric scooter. Although a speech therapist once pronounced she would never regain normal speech, Bonnie now not only talks, but she has once again found a powerful voice.

It is that voice, along with a new point of view, that occupy and hour long documentary for CBC Radio’s Sunday Morning programme, which aired in October. Finding My Place: A Journey Into The World Of Disability is a moving diary of Bonnie’s trip to Independence ’92, a conference held in Vancouver last spring which brought together 2 800 delegates with disabilities around the world.

When Bonnie collapses in her hotel room after an exhausting flight across the country to the conference, it is clear that this will not be an easy trip, either physically or emotionally. "I am literally falling apart", she confided to her tape recorder. "To be continued after I pick myself up and see what the damages are."

When she does pick herself up, Bonnie starts to record the events, encounters and personnel reflections that flood her during the conference. In so doing, she embarks on an inner journey which seeks a clearer intellectual, emotional and spiritual understanding of what it means to her to live with a disability.

She grapples with the labels and language of disability. One writer with multiple sclerosis says she wants people to wince when she uses the word cripple. "I want them to see me as a tough customer," she says. "As a cripple, I swagger." But Bonnie isn’t ready to swagger. "I’m still finding myself in this new world of disability. I’m trying to find my place," she says simply.

Bonnie’s fatigue and tentativeness when she arrives in Vancouver are almost immediately replaced with the euphoria of being in an environment with thousands of people just like her. "It was a feast for my eyes," she says. "I didn’t realize how thirsty I was for images of people like me. It was a real high... I had never seen so many variations on the theme of disability." With some amusement, she realizes that she may have gotten carried away with "the euphoria of fellowship" when she meets an overbearing man named John who misinterprets her friendliness and follows her for awhile. "I couldn’t shake John. Some things don’t change with disability."

It is Ed Roberts who sets the real tone for Bonnie’s journey. A veteran campaigner for the rights of people with disability in California, Roberts has fought his battles with bureaucrats, lawyers and legislators from his reclining wheelchair attached to his respirator. "One of the most important assets I have is my anger," he tells Bonnie.

Roberts’ anger is directed at the mass media’s need to cast people with disabilities as either tragic or heroic, and its failure to understand that people with disabilities are "whole people" with the normal range of strengths and weaknesses.

"Not all of us can be strong," he says. "A lot of us were defeated. A lot of us were institutionalized. A lot of us have committed suicide."

Despite the shortcomings of the media’s attempts to deal with people with disabilities, Bonnie wonders aloud why more reporters haven’t shown up to cover the conference. She mourns the fact that people with disabilities will remain invisible and at the margins of society until able-bodied people are forced to look at them in a real way.

"The media is a reflection of society. Both ignore us," she says. "Or they stereotype us either as heros or victims. We call these (media images) supercrips or TOTs - triumph over tragedy. For non-disabled people these charity images are heartwarming. They make you feel good when you contribute or do your share. But these same images are disabling for us, people with disabilities."

Bonnie and several other delegates draw parallels between the struggle of people with disabilities and that of women and visible minorities who are straining to move beyond the stereotypical roles assigned to them by society. "My film, Not A Love Story shows how pornographic images teach women to hate their own bodies," she says. "Now I’m finding that society’s ignorance and distorted images of disability teach us to hate our bodies."

Finding My Place documents the deep desire for acceptance that underlies the anger and frustration that many people with disabilities express - acceptance as being both the same as able-bodied people, sharing the same rights and needs, and yet being unique and different at the same time.

Those differences are made most clear when delegates talk of their nationhood and new culture, and speak of the gulf that often separates them from able-bodied people. Bonnie is moved to tears when a women from the United States describes how her recent disability has profoundly and permanently altered her world and relationships in it. "When you have a stroke, it’s just getting old prematurely," says the woman. "You go from one life into another one... you lose the culture of your peers so you have to invent one for yourself."

If Bonnie is charting the emergence of a distinct society of people with disabilities in this programme, it is clearly not one born of pain alone. It is a society that laughs at the same jokes, enjoys the same song lyrics and poetry.

"There isn’t a common language; it’s a common experience," Bonnie said in an interview from her home in Montreal after the conference. "...It’s a humour, a shorthand, a vocabulary. I can communicate with someone (with a disability) on the street by a raised eyebrow." One woman at the conference goes even further: "I don’t think as a non-disabled person does, I don’t fantasize as a non-disabled person does, I don’t wish I was a non-disabled person... and I think non-disabled people get very upset when we talk about them the way we do privately, but the reality is that we do. I think that we think that most non-disabled people don’t understand the experience on individuals with disabilities and are obviously a significant part of the problem...non-disabled people are a major obstacle in my life."

The programme also makes it clear that some people with disabilities are developing an enlarged sense of aesthetics and beauty - one that rejects narrow perfectionistic categories and includes people with disabilities. They can see grace where others may see awkwardness. Many people at the conference are profoundly touched when they watch a ballet performed by a Brazilian trio with an able bodied woman who dances with a girl and a woman using wheelchairs. "When you want to dance, you don’t need bodies to dance," says the able bodied dancer. "You need soul."

For information on receiving a cassette copy of Finding My Place, please write to: CBC Sunday Morning, Box 500, Station A, Toronto, ON M5W 1E6

(Wendy Harris is a freelance writer living in Toronto.)