Isolated world of deaf-blind being cracked open by new technologies

From: National Post - Canada - Mar 2, 2005

Eric Shackleton
Canadian Press

Wednesday, March 02, 2005

Jane Sayer, president of the Canadian National Society of the Deaf-Blind, shows the sign for "I love you," a universal greeting to good friends who are deaf, in Winnipeg. (CP PHOTO/Marianne Helm)

(CP) - The isolated world of deaf-blind impaired people is slowly being cracked open by new devices, from hockey pucks that rattle to beds that shake sleepers awake. And an age-old technique - the eyes and ears of others who intervene to help them communicate - is also being used to greater effect.

Jane Sayer, who grew up with a hearing loss and then went blind, says gadgets like vibration devices that let her know when someone is at the door or the phone is ringing make a huge difference in her life and for others like her. But interveners, or people trained to help them communicate, have also had an impact.

"Just so many opportunities have opened because of intervention," says Sayer, who lives in Winnipeg. Many people like her need interveners "to be able to go out, even leave their homes - to do our shopping," she said.

Sayer related the story of a friend who never ever went out. "She was also the type of person to always talk about suicide," said Sayer. But after she started receiving intervention, "she's now one of the leaders of the deaf-blind community. She's always going out," even travelling to the United States for conventions.

Sayer was "absolutely devastated" when she learned in her 20s that she was going blind. "I thought what is my future going to hold. I wanted to have a future." She helped form the Manitoba Deaf-Blind Association which advocates for services such as interveners.

Because her disability was acquired, Sayer leads a slightly different kind of life from that of her congenitally deaf-blind colleagues. "Although I'm legally blind, I still have a little bit of vision left," said Sayer who worked as a warehouse supervisor for many years before having to quit because of her blindness. "I'm profoundly deaf, but I grew up in the hearing world. So although I cannot hear, I can still speak."

Canadians with congenital deaf-blindness have minimal or complete lack of vision and hearing at birth, or lose their hearing or vision before age two. Those with acquired deaf-blindness are often born deaf or hard of hearing before age two and later lose their vision.

Acquired deaf-blindness is usually caused by Usher syndrome, a genetically inherited condition where hearing loss is normally the first symptom, followed by vision loss. Retinitis pigmentosa, or tunnel vision, causes the loss of vision. Both Sayer and Megan McHugh, who lives in Oshawa, Ont., have Usher syndrome and RP.

Sayer leads a busy life, holding down two jobs - president of the Canadian National Society of the Deaf-Blind and co-ordinator for the past eight years of the Resource Centre for Manitobans who are Deaf-Blind.

McHugh also hasn't let deaf-blindness get her down. She is the only woman on an all-men's deaf-blind hockey team, skis in winter and plays softball in summer.

The Canadian Helen Keller Centre in Toronto "provided me with the rehab training to deal with being deaf and blind," says McHugh, who found it "really depressing" when she started to go blind in her early 20s, forcing her to quit playing for a team in a women's hockey league.

But at the Hellen Keller Centre she found out about the men's hockey team and joined up. She also learned to do a lot of other things, such as read braille and use computers with adaptive technology. "It also gave me confidence that when my vision is worse I will be able to function," she said.

McHugh, who has some vision and a cochlear implant to improve her hearing, teaches the deaf-blind how to use specially adapted computers at a firm called Weatech and at the Helen Keller Centre.

As an example of opportunity-creating technology, the interviews with Sayer and McHugh could not have been done without an intervener and adaptive technology. A Bell Canada trained operator typed out my questions for them, which then appeared on their TTYs, devices that ring via flashing light or vibrating wrist band. TTYs have keyboards, display screens, modems and printers, and are about the size of a cellphone.

McHugh typed out her answers which were read back to me by the operator. Sayer chose to speak her answers. However, I could not interject or interrupt Sayer because of her deafness. Answers and questions concluded with the words "Go ahead."

Sayer and McHugh are among several thousand Canadians with some degree of deaf-blindness. A demographic study completed last year came up with 3,306 people with the condition, said Stan Munroe, who co-ordinated the study by the Canadian Deafblind and Rubella Association and the Canadian National Society of the Deaf-Blind.

"We still feel that we don't have a definitive number," said Munroe, whose son's deaf-blindness was caused by German measles (rubella). It could be "three times" the 3,306 figure, he said.

The researchers contacted those living in institutions or attending schools, "but the vast majority of those with this disability aren't necessarily connected with anybody" - and they are not always aware of "things that would make their lives much better," he said.

New technologies come in many forms, say Sayer and McHugh. In the men's hockey league, they originally used a beeping puck, says McHugh. But it didn't work very well - "too much echo. So someone came up with the idea of putting piano (tuning) pins inside a Tonka truck wheel - that makes it rattle."

Gadgets used during Sayer's association meetings include pocket talkers where a person talks into a lapel microphone and the sound is then carried directly to the headset of the hard-of-hearing person. They are useful for people who can't wear hearing aids.

FM systems are connected to people's hearing aids. "You speak into a microphone and it goes directly into their hearing aid," said Sayer. "We also use computerized note taking where you type on a computer in very large print and (people) can read it off a laptop computer - or it can be projected on to a big screen."

"So when you come to our deaf-blind meetings this is how we communicate," said Sayer. "Because every member has different ways of communicating, that's why we need ... one-on-one intervention.

"We're kind of an expensive crew to provide services to - braille devices alone often cost about $8,000. But if it means that we can communicate, then that's what we have to do," she adds.

"My one wish would be for every deaf-blind person in Canada to receive intervention - right now many don't - to get out of our homes and not be so isolated."

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On the Net:

Canadian National Society of the Deaf-Blind: www.cnsdb.ca

Canadian Deafblind and Rubella Association: www.cdbra.ca

© The Canadian Press 2005