Friday October 10, 1997

DEAF-BLIND COME OUT OF SHADOWS

by Star columnist Ellie Tesher


IMAGINE BEING able to see only vague shadows, to hear nothing at all. It's beyond imagination because even simulated lack of vision and hearing is different when you know it will end.

For those who live it, deaf-blindness is a world apart - totally isolated, internal on a level that can never be reached by other humans, dependent on others for survival.


Unless there is communication.


The most famous case of how learning a language of touch brought the outside world into a dark, lonely mind was that of Helen Keller, who became blind, deaf and mute at 18 months after a fever. The lifeline that flourished from age 6, when Helen met her teacher/companion Anne Sullivan was made famous through books, one written by Keller, herself, and the movie, The Miracle Worker.

Keller was a brilliant exception - not only with a genius for adaptability but also with family who could afford a full-time teacher. That is not the case for most who suffer this dual disability that sets them outside ordinary human contact.

They fall into two categories: people who contract a genetic disease like retinitis pigmentosa and Usher's Syndrome, which together cause loss of sight and hearing; others, affected as early fetuses during the world-wide rubella (German measles) epidemic of 1966-1967, are born deaf-blind with added health problems. Many are now adults living in various group homes that formed when their parents fought for and received government assistance for their children's education and living circumstances.

New modes of help are in the works. They've come about thanks to the determined efforts of activists like Joyce Thompson, who first volunteered at the Canadian National Institute for the Blind (CNIB) in 1977 and went on to become executive-director of Rotary Cheshire Homes, the only residential apartment units in Canada designed for deaf-blind people so they can live independently and have assistance when they need it.

This week, a Web site that teaches what's called two-hand manual communication, which is used by deaf-blind people, is being launched along with information about the new Canadian Helen Keller Centre, planned to open in Toronto in the new year.

The site can be found at  © learn2handManual ©- with versions for people with low vision, access to voice-synthesized screen readers and Braille display.

The Centre will run a six-month training program in life skills to help deaf-blind people achieve more independence and go on to train others. Four units are available as residences. A generous benefactor has bought the Willowdale house and Thompson is working toward a grant from provincial lottery funds, plus private sector donations.

The training is crucial, since there are not enough professional ``intervenors'' to go around. They link deaf-blind clients to their community, accompany them on outings, provide visual and auditory information. George Brown College offers a two-year course but there are currently only 17 students enrolled.

The Web site lesson on the touch alphabet - illustrated through animated graphics - is fascinatingly easy to learn. Amazingly, the site was designed by a man who is legally blind and can hear nothing without two hearing aids.

Lorne Marin, 46, was diagnosed with retinitis pigmentosa at 16 and has lost his hearing over the years. Through sheer willpower and talent, he's been an experimental filmmaker, photographer, teacher of animation, weaver and, now, a computer whiz. Recently, he moved back to Toronto after years of living in rural Prince Edward Island weaving, and running a bed and breakfast with his partner, Donnalee. He has volunteered countless hours to the new training centre and Web site.

Some 3,000 deaf-blind people in Canada (considered a low estimate, as there are 70,000 in the U.S. ) need all the help they can get. In a climate of funding cutbacks for those on any government ``system,'' those with this so-called orphan affliction with no cure - and little public appeal due to its imposed isolation - get along on handouts.

Through CNIB, the province pays for an average of 2 1/2 hours of intervenor help once weekly - barely the time to get food shopping or banking done. Yet Ontario is the leader in providing this service, along with disability support payments, which cover subsidized rents, food and little else.

The new centre plans outreach services, going into homes at least three times weekly and establishing a registry to broaden contacts.

Anyone can help by connecting a deaf-blind person or his/her family to these new resources. It takes 20 minutes to learn to touch-talk - and can change a life.



Ellie Tesher's column appears in The Star on Tuesday and Thursday