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Future Reflections
Winter/Spring
2005
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Finally,
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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