Future Reflections Winter/Spring 2005
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A Book to Help Parents of Disabled
by Helen Henderson
Reprinted courtesy of Torstar Syndication Services from the Toronto Star, April 17, 2004.
Editor's Note: The book reviewed in the article below contains an essay by Debbie Stein (or Kent-Stein), a well-known author of children's book who happens to be blind. The essay is based upon a speech Ms. Stein gave to parents of blind children at a National Federation of the Blind sponsored workshop. As a representative of the NFB of Illinois, Ms. Stein does extensive volunteer and advocacy work with parents of blind children in her community. Here is the review:
What will happen when my child grows up? Will she be happy? Will he have friends? Will he be able to achieve his dreams? What can I as a parent do to give her the best chance in life? Most moms and dads, even first-timers, need only look at the experience of friends and neighbors for ideas on the future. But the parents of children with disabilities usually have no such yardsticks.
They've probably been overwhelmed with a bunch of medical prognoses, which may or may not shed any real light on what to expect. Their kids have been labeled "different." A lot of their time and energy will be consumed in trying to get society to see beyond the disabilities to the abilities they know are there. They could use the advice of someone who's traveled ahead of them, but don't know where to begin to look.
Well, this week I met a whole army of bright, wonderful grown-ups more than willing to help. They jumped off the pages of a new book: Reflections From A Different Journey: What Adults With Disabilities Want All Parents to Know, edited by Stanley D. Klein, Ph.D., and John D. Kemp (McGraw-Hill Ryerson, $27.95).
They cope with all manner of disabilities, physical and mental. And their stories make up a joyous, life-affirming guide to possibilities. As actor Marlee Matlin puts it in the introduction: "They are not people who have 'overcome' their disabilities. Rather, they have overcome the prejudices of society that all too often stereotype people with disabilities in destructive ways....
"With the love and support of their parents, they were not imprisoned by dire prognoses. Instead, they were encouraged to dream, to try, to make mistakes, to be active participants in the life of their families and communities, and to reject the limitations suggested by scientific and clinical stereotypes."
Matlin herself continues to work as a successful actor, despite being told at age 21 that she had been given an Academy Award for her role in the film Children of a Lesser God only out of pity because she is deaf. "Our essay writers are relatively ordinary, accomplished individuals; they are not superstars," she notes. "All too often, the media focus on the relatively few individuals who happen to have disabilities who do extraordinary things. The result is a different kind of prejudice: people with disabilities are to be superstars."
The contributors to the book come from all over the world, including Canada. Many speak of their appreciation for parents who provided unconditional love and accepted them as whole people including that part of them considered a disability.
Among these is Gregor Wolbring, whose physical self was shaped in the womb by the drug thalidomide. "The public perception was that parents of thalidomiders had it very hard because their kids were indeed seen as monsters," writes Wolbring, a biochemist at the University of Calgary, an adjunct professor of bioethics and a vocal advocate for disability rights.
Thanks to his parents' love and acceptance, "I developed high self-esteem and was able to become comfortable with my non-mainstream body and with who I am," he says. "I never felt ashamed about crawling. For me, it was and still is my Natural way of moving.... I never saw myself as defective. My parents always helped me to look at the bigger picture. They made me aware that I was not the only one bullies would target. They enabled me to cope with the bad treatment I sometimes received."
In the chapter on sexuality, Anne Abbott, a Toronto writer and graphic artist, writes: "I felt terribly confused and inadequate during my teenage years. Unwittingly, my mother added to those feelings by (telling)...me to try not to become romantically interested in able-bodied boys because they would never want the responsibility of taking care of someone with cerebral palsy.... My mother wasn't trying to hurt me; she just wanted to save me from rejection."
Abbott, who does not speak, says she was indeed "rejected by both able-bodied boys and boys with disabilities." Finally, at age 29, when "I was resigned that I would die an old maid, a virgin forever, without a mate," she met Rob, an able-bodied man who saw beyond her disability. They have been married for seven years.
"Rob has taught me that if you want something badly enough, one day you just might get it," she writes. "Just never give up hope or be afraid to take chances."
Then there's Ross Flood, who has cerebral palsy and whose essay begins the book. Flood's parents were told he would be a vegetable. He was placed in a sheltered workshop, labeled "unemployable" and turfed out. Then, his dad encouraged him to start writing about rugby. Today, at 51, he has a B.A. in sociology from Auckland University, works as a copywriter and is on New Zealand's Para Olympic bocce ball team. As he puts it: "I ain't done too badly for a cauliflower."
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