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one for the bibliography

From: Al Gilman <asgilman@access.digex.net>
Date: Wed, 24 Dec 1997 10:37:59 -0500 (EST)
Message-Id: <199712241538.KAA18275@access2.digex.net>
To: w3c-wai-ig@w3.org
----- Forwarded message from Will Smith -----

From: Will Smith <wilsmith@IGLOU.COM>
Subject:      Book review:  Passing as sighted (long) (fwd)

Hi everyone,

This book review posted by a friend Joel Deutsch on the retinitis
pigmentosa list was so interesting that I wanted to share this
information with others here.  Furthermore, the reviewer captures
the special kinds of torment there can be for those who try to
live as a sighted person with almost non-existent and failing
sight, including the ugly stereotyping a la Magoo.  The book
sounds as though it'll be one to read for many of us and I do
hope it'll be available through NLS.

Seasons best to all,


'Planet of the Blind': Passing as a Person Who Can See


     For almost four decades, the writer Stephen Kuusisto tried to hide
the fact that he was legally blind.

     Though he could read only by holding a book an inch from his face,
though he could see little more on the street than blurry colors and
shapes, he tried for years to pass as a member of the sighted world. He
careened around his neighborhood on a bike, insisted on piloting his
family's power boat, traveled alone to Europe and learned to ski. He
graduated from college with honors in English, attended the Iowa Writers'
Workshop, won a Fulbright grant to study in Finland, and began graduate
work at the University of North Carolina -- all with 20/200 vision in his
better eye.

     In his luminous new memoir "Planet of the Blind," Kuusisto -- who
lost his sight as an infant, when he was placed in an overly oxygenated
incubator that permanently damaged his retinas -- tells the remarkable
tale of how he feigned sight for so many years. He also tells us the
affecting story of how he eventually came to terms with his condition and
began a new life, at the age of 39, with a seeing-eye dog named Corky.

     As Kuusisto describes it, his blindness is like staring at the world
"through smeared and broken windowpanes" or watching life through a
kaleidoscope: his impressions of the world "are at once beautiful and
largely useless." It's like "living inside an immense abstract painting,"
Jackson Pollock's "Blue Poles" or "Autumn Rhythm," say, where the very
air turns to "handblown glass with its imperfect bubbles of amethyst or
hazel blue."

     So how did Kuusisto manage to negotiate the world for so many years
without help, without even a white cane to help reconnoiter its terrain?
How was he able to persuade friends and acquaintances that his sight was
better than it really was? Part of it was sheer recklessness, a
determination to plunge ahead, regardless of cars and walls and stairs.
And part of it was reliance on wit and acting skills.

     Of a bird-watching expedition with a friend, Kuusisto writes: "I
don't want to tell him I can't see the damned things, fearing it will
make him self-conscious, for then our outing will become an exercise in
description. He'll have to tell me what they look like. And I will have
to appreciate them all the more. By pretending to see, I'm sparing us an
ordeal. Sure I'm faking it with the binoculars, gloating over imaginary
bluejays, but I'm alone with my own imagination, listening casually to an
enthusiastic friend, my blindness locked away for the time."

     Over the years, Kuusisto also developed a prodigious memory: for
words, for books, for the physical world around him. He spent a lot of
time listening to records and recorded books. He memorized the number of
steps on stairwells and memorized the locations of trees and doorways and
curbs. He pressed his nose to the television set, and used magnifying
glasses and huge, thick, telescopic spectacles to examine books, slowly
deciphering their elusive words one by one by one.

     "The ordinary effort of reading is, for me, a whole-body
experience," he writes. "My neck, shoulders, and finally, my lower back
contract with pain. The legally blind know what it is to be old: even
before the third grade I am hunched and shaking with effort, always on
the verge of tears, seeing by approximation, craving a solid sentence.
Then the words dissolve or run like ants.
     Nevertheless I find a lighted room inside my head, a place for
self-affiliation. I am not blind, am not the target of pranks."

     Having been brought up by parents who were reluctant to acknowledge
his disability, Kuusisto internalized their denial. He did not want to
get a white cane. He did not want to ask for help. He did not want to be
regarded as someone who was blind. And yet for all his efforts to appear
independent, he says he was continually mocked as odd and clumsy and
slow. Schoolmates called him "Mr. Magoo," and one professor cruelly told
him he did not belong in graduate school.

     Had it not been for a freak accident that injured his better eye,
Kuusisto says he might well have persisted in his belief that he could
govern his disability alone. The accident (a bookmark sliced his only
workable eye), combined with worsening cataracts, however, finally
convinced him to call the New York State Commission for the Blind. And in
1994, after years of willful, even contrary self-reliance, Kuusisto
enrolled in a seeing-eye dog program at Guiding Eyes for the Blind and
began the first chapter in his "vita nuova."

     With his dog, Corky, he writes, he learned to walk for the first
time "without the 'fight or flee' gunslinger crouch that has been the
lifelong measure of blindness." For the first time in his life, he was
"not frightened by the general onslaught of sensation."

     Although Kuusisto's love of poetry can result in patches of overly
self-conscious prose -- "my ego crawls around blindness like a snail
exploring a piece of broken glass" -- he is a powerful writer with a
musical ear for language and a gift for emotional candor. He has written
a book that makes the reader understand the terrifying experience of
blindness and that stands on its own as the lyrical memoir of a poet.

By Stephen Kuusisto.
194 pages. The Dial Press. $22.95

----- End of forwarded message from Will Smith -----
Received on Wednesday, 24 December 1997 10:38:02 UTC

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