Changing our perceptions - Book Corners

Townsend Letter for Doctors and Patients,  Jan, 2003  by Pat Johnson

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A Matter of Dignity Changing The World Of The Disabled

by Andrew Potok

Bantam Books, 1540 Broadway, New York, New York 10036 USA; ISBN 0-553-80215-1; 305 pages

A solitary figure expertly navigates his kayak over the waters of a quiet Vermont lake. On the shore a group of friends are gathered: Esturo, who was blinded in a car accident in Japan and emigrated to avoid the ostracism of bad karma; Danny, telling jokes and proudly sporting a new prosthesis, Steve and Claire sitting off aways smoking; Geoff and Peggy playing with their nine-year-old. Tobias, the kayaker's guide dog for the blind watches intently as Andrew Potok glides across the water.

Blindness has long held the distinction of being the most visible of human disabilities. As such, it has received the most attention, the most funding.

The balance between independence and dependence shifts and may take away from the truly germane issues for any disability.

We are all somewhere on the continuum of human abilities and disabilities. The place we hold on this spectrum shifts throughout life. Our unwillingness to own this fact of existence makes it easy to deny the reality that disability rights are civil rights. Any disenfranchised group, be it people of color, women, gays, or those with physical or mental disabilities, happens only as a result of major shifts of consciousness brought about by intense, persistent labor.

Shoemakers were the first prosthetic craftsmen. That has changed. When John Fago graduated, the director predicted that half of the class would have their own big-time leg shops and within five years their net worth would be a million dollars.

"I wear shorts as much as I can," says John. "I want people to see that I have this disability and it's not stopping me from being out there or from doing things." John excels on the ski slopes and welcomes the challenges of life.

"As a Canadian I've always laughed at Americans thinking that they can do anything they put their minds to," says Dave Loney, prosthetist. "Well, that isn't true...I've learned from my patients that you have to be mostly aware of the abilities that are within your scope...and be willing to work with what you have." Acceptance makes it possible to see what's on the other side of that particular door.

Dave Henter, avid water skier and founder and CEO of Henter-Joyce, a multimillion-dollar company whose only purpose from its beginning in the late 80's has been computer accessibility for the blind, says: "The more universal something is, the more it promotes the idea of diversity and inclusion. The idea of a screen reader or an accessible bathroom has more to do with how we think about what humans as a large group with extraordinary physical differences need, in a highly developed world." Henter speaks from experience. He is blind and employs large numbers of other blind people.

People with mental disabilities are those whose brains and central nervous systems have been adversely impacted by birth, illness, accidents and aging. Over ten million human beings in the US have strokes, Parkinson's, Alzeimers and a plethora of other conditions that lock them inside their bodies, often with no way to effectively communicate with the outside society.

Connie Tomaino, director of the Institute of Music and Neurologic Function, is one of perhaps four specialists who are working with music to bring about "remarkable synchronizations and entrainments of brain function... (that) can stimulate and organize lower functions in the basal ganglia...and heighten mental functions."

As a result of a severe asthma attack Annie, in her late 50's, suffered a serious oxygen deficiency in the brain and was in a coma for three months.

Traditional rehab helped. Tomaino's unique music therapy was a further stimulus for the return of Annie's ability to speak.

Crimes against the disabled, particularly the mentally disabled, are higher than crimes against the general populace. In the US, more than five million disabled are reported victims each year.

This is an inspiring, distressing book. Potok challenges us to think outside the box, to question our dogma and to consciously move beyond the fictions of Madison Avenue and Hollywood to a more inclusive model of the human body. The diversity of experienced opinion presented is a powerful metaphor of a genuinely pluralistic society.

COPYRIGHT 2003 The Townsend Letter Group
COPYRIGHT 2003 Gale Group