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MYTH-BUSTER |
a labor of more than eight years |
Her goal: replace self-pity
with lots of self-pride
By DAVID ZINMAN
of TheColumnists.com
I first heard of Cass Irvin when I saw a front-page
story about her in the Wall Street Journal. The story said she
was a quadriplegic who rose above her disability. She published
a feisty and irreverent magazine called Disability Rag.
The Rag stands in the "forefront of a movement that has
much in common with the black civil rights struggle," the
Journal said. "Like blacks prior to the 1960s, the disabled
are often segregated--relegated to dependency, and barred from
many public buildings."
I never thought I would meet Irvin, who was crippled by polio
at age nine. She lived in Louisville, Ky. I lived in New York.
But one day in the early 1980s, my paper, Long Island Newsday,
sent me to her hometown to cover the artificial heart transplants.
I took time off to meet her and discovered her to be a brilliant
and charming person.
What was on her mind that day--she was then in her 30s-- was
writing a book. She wanted people to know what it was like to
be severely disabled in a culture that worshiped physical prowess.
Her book, she said, would tell how she emerged from a shy teen-ager
to become an activist for disability rights. Her goal was to
end stereotypes portraying the handicapped as stoic superheroes--"supercrips"
who have overcome their disability.
Instead, she wanted to make the public aware of the real issue--the
everyday problems facing the vast majority of the disabled. She
had in mind making buildings and buses accessible to the handicapped
and improving their quality of life by making independent living
and personal assistants possible for them.
To achieve this, she said, the disabled needed to shuck off their
public image as a passive underclass and, instead, strive to
become visible, contributing members of their communities. They
must replace self-pity with self-pride.
Despite her enthusiasm, her book idea faced long odds. To encourage
her, I offered to be her agent. I had never done this. But as
a reporter and author, I had literary contacts. She accepted
and became my only client. It took awhile, but eventually I found
an interested publisher--Temple University Press.
Marketing--my job--was the easy part. Writing--her job--took
a major effort of will. She had to organize her thoughts, then
talk into a recorder. She hired someone to type her words, and
then she edited them. When she could no longer afford a typist,
she finished the manuscript herself with slow but steady one-finger
typing. It took eight years from start to finish.
Finally, the book was done. Temple required an independent review
from an expert in her field. Everything depended on a favorable
reaction. The review turned out to be more than that.
"A powerful and well-written manuscript," said Fred
Hafferty, professor of Behavioral Sciences at the University
of Minnesota. "There is laughter, and there are tears. There
is growth, and there are setbacks--And there is a remarkable
ring of truth and authenticity about what we are told.
"The author is mobility impaired. Yet every word she wrote
about feeling the need to be inconspicuous, about not drawing
attention to herself, and about feeling shame when someone else
is embarrassed or inconvenienced by her disability, rings true.
"It is a coming of age--a coming of life book. It was, literally,
quite hard to put this manuscript down--¦I would buy this
book--but not for my personal library. I would buy this book
and give it to my two boys and to my wife and say, 'Please read
this, and when you're done, I want to talk to you about your
reactions.' (I want) to tell other people how more rich their
lives would be if they read this book and shared it with someone
they loved."
The book, called "Home Bound: Growing UpWith a Disability
in America," was published in February. It has not climbed
to the best-seller list. Nor has Irvin been invited to appear
on "Oprah."
But a growing number of people are buying her book. One of them,
Janet Reno, the U.S. Attorney General in the Clinton administration,
called Irvin from Florida. Reno and Irvin spoke at the same event
some years ago. "She had just finished my book and wanted
me to know she thought it was eloquent..." Irvin said, "I
thanked her profusely. I was almost teary."
Schools are buying the
book, too. And it is getting media exposure. A review in the
Louisville Courier-Journal called her work an "honest, expertly
organized, and beautifully written book."
In Kentucky, the state National Public Radio branch did an interview
with her. And a TV station did a piece on her failed efforts
to get her motorized wheelchair into one of two stores selling
her book in her hometown.
"The ramp was too steep," she said. "My chair
would tip over backwards." Even if she could have climbed
the ramp, a stair barred the way.
Irvin perseveres. The most progress the disability movement made
has been in getting federal laws passed mandating accessibility
in public transportation and in buildings.
"It's the obstacles society puts up that really limits our
lives."
©2004 by David Zinman. The Zinman caricature is ©2001
by Jim Hummel. The book cover reproduction and photo are courtesy
of Temple University Press.
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