Vice Chair, CNIB Deafblind Community Services
Canadians with sight loss rely on their hearing. Canadians with hearing loss rely on their sight. And Deafblind Canadians rely on critical support services that are not uniformly available across Canada.
Isolation is an experience that all Canadians have become familiar with over the last two years. We’ve felt our worlds shrink and found connecting with others to be more difficult than ever. For most of us, this is new. And we have faith that science and time will return us back to normal. But, for many Canadians with disabilities, the isolation of the pandemic has been a continuation of existing challenges. For people who are Deafblind — that is, people who have both hearing and sight loss — taking independence and opportunity for granted has never been an option.
Penny Leclair of Kingston, Ont., is the Vice Chair of CNIB Deafblind Community Services, an affiliate organization of CNIB (Canadian National Institute for the Blind) that provides services to Canadians who are Deafblind to help them increase their independence and their ability to communicate with others.
Among those services are what’s known as “intervenor services,” which involve a trained intervenor acting as the eyes and ears of the person who is Deafblind. The intervenor supports the individual through daily tasks like grocery shopping and medical appointments and uses alternate languages like tactile sign language to facilitate communication between the individual and everyone else in the hearing and sighted world.
Leclair is not only the Vice Chair for CNIB Deafblind Community Services, she’s also a client who relies on the organization’s intervenor services to help her be as independent as possible.
“I’ve always been blind and, as a blind person, my hearing was everything,” Leclair says. “I knew when something was boiling on the stove because I could hear it. If I dropped something, I could hear where it went. When I started losing my hearing as well, I no longer had any of that. I had no access to the news, no access to the phone, and no access to the TV. All I had was my computer and a braille display. Your world shrinks. You become isolated. I became a lot quieter, more withdrawn. My personality changed.”
If you want to have all the opportunities open to you as a Deafblind person, you definitely need to be in a place where you have access to an intervenor. People shouldn’t have to move to access these services.”
Navigating the world by touch
Intervenor services for Canadians with dual sensory loss can provide a potent countermeasure to the challenges Leclair describes, but many live in jurisdictions where Deafblind services like these aren’t readily available. When crucial supports are absent, it can take a heavy and ongoing toll on a person’s health, both physical and mental.
When Leclair first lost her hearing, she was living in British Columbia, where the only services for people who are Deafblind were provided on a volunteer basis. “I’ve been totally Deaf and totally blind,” Leclair says. “I know what it’s like to live without intervenor services. I know how difficult that is, and I know the depression that comes with it.”
Living in Ontario now, Leclair has access to support from CNIB Deafblind Community Services, which she says she relies on to live life on her own terms. “It gives me back my independence,” she says. “The intervenor comes in and it’s their job to do what I need or what I decide. If I want to be spontaneous and say, ‘The heck with it, I’m not going grocery shopping today, I’m just going to go and have fun,’ then that’s what happens. It’s empowering.”
Today, some of Leclair’s hearing has been restored with a cochlear implant, but she still benefits profoundly from the support she receives from CNIB Deafblind Community Services, as do many others with varying degrees of sensory loss.
Vice President, CNIB Deafblind Community Services
“People who are totally blind and Deaf aren’t the only type of people we work with,” says Sherry Grabowski, Vice President of CNIB Deafblind Community Services. “We also work with people who have some remaining sight and people who still have some hearing. That’s why we offer so many different kinds of services and communication styles, because every client is unique.”
What province you live in shouldn’t determine your independence
The services provided by CNIB Deafblind Community Services, which include literacy services and emergency services in addition to intervenors, have long been available in parts of Ontario. The organization has recognized, however, that even as it seeks to expand the availability of services within Ontario, it’s no longer tenable for this lifeline to be available only in one province. An estimated 466,000 Canadians over the age of 15 are living with some degree of dual sensory loss, and in many parts of the country, they don’t have access to Deafblind services.
CNIB Deafblind Community Services’ recent expansion into Saskatchewan is already highlighting the dramatic need for nationwide access to supports such as trained intervenors.
Manager, CNIB Deafblind Community Services
“Access to intervenors is a game-changer in Saskatchewan,” says Tyler Burgess, Manager of CNIB Deafblind Community Services’ Saskatchewan operations. “I know individuals who have run in marathons with an intervenor, have maintained employment, and have been able to lead rich and full lives with access to all the benefits of the community. If you want to have all the opportunities open to you as a Deafblind person, you definitely need to be in a place where you have access to an intervenor. People shouldn’t have to move to access these services.”
With that in mind, and with the Saskatchewan operation steadily growing, CNIB Deafblind Community Services is hoping to expand to the rest of the country. Increasing its reach, however, will require additional funding, increased awareness, and further advocacy from dynamos like Leclair, who are often reliant on these services to be able to advocate in the first place.
“We have this expertise and we need to share it,” says Grabowski. “We’ve submitted business cases for funding proposals in Prince Edward Island, Nova Scotia, Newfoundland, and just recently B.C. We continue to have ongoing conversations with government officials in various provinces. We need to have models like we have in Ontario in every province of Canada. People who are Deafblind need and deserve it.”
CNIB Deafblind Community Services thanks the Ontario Ministry of Children, Community, and Social Services; the Ontario Ministry of Labour, Training, and Skills Development; and the Saskatchewan Ministry of Social Services.