About one year ago, Brenda Macalister of McLeese Lake was feeling isolated.
“I had no opportunities to go out,” she said, explaining how, as a deafblind woman, she can’t go for walks and visit the community on her own.
Things changed when Macalister joined the Williams Lake Fibre Artists Guild and was connected with an intervenor to help her communicate with the others.
“It just gave me a real sense of purpose because I had something to work on and sort of a puzzle to figure out,” she said about weaving. She also gets to socialize with other group members and loves getting to know their interests and learning to communicate with them.
An intervenor is trained to work as the eyes and ears of a person who is Deafblind. Macalister and her intervenor, Pamela Goertz, communicate to each other through touch and American Sign Language (ASL).
“When a person can't see, can't hear, you miss out on a lot of information that's just happening around you,” Macalister said, listing examples such as where people are situated in the room, what the room looks like and the colour of peoples’ clothing.
Her time with the intervenor is limited to 8 hours a week, split on Wednesdays and Fridays. Along with the time they spend at the guild, Macalister and Goertz do errands, visit thrift stores or cafes and go to the farmers market when it’s on.
“I just love being part of the Williams Lake community...it just feels like a rich time for me to feel like I'm on the same page as the rest of the world around me,” she said.
Intervenor services are provided by the Canadian National Institute for the Blind (CNIB), supported by funding from the B.C. government received in 2022.
The program has been life-changing for Macalister, even boosting her mental health. She said access to an intervenor is “absolutely vital” for deafblind folks, but she’s worried about the future. Come March 2025, the three-years of funding provided by the province will run out, and no word has yet confirmed what will come next.
“It's just beyond scary that I could go back to being isolated, totally dependent on my husband, like a little kid wanting information and wanting to express myself and having so little opportunity to do that,” Macalister said.
Macalister was born deaf, and she struggled with night blindness as a child. As time went on her vision worsened, but she didn’t learn braille as a child because she didn’t realize she would need it. Upon meeting others like herself at a deafblind conference, she discovered she had Usher Syndrome and that she wasn’t alone.
“I was completely gob smacked because there was a huge group of deaf blind folks – and there's a whole culture – and I thought, ‘oh, it's not just me’.”
Macalister learned all about the deafblind community, and she's volunteered for and led organizations building awareness and advocating for better access to services for people who are deafblind.
“I don't want people to perceive deafblind folks as people with a weakness. I want people to be aware that we are empowered individuals, and we can accomplish a lot together,” she said.
Intervenor services are an essential part of this empowerment. Without them, Macalister said life becomes depressing as she is unable to read, watch TV or easily send messages to friends. She said it feels like being “alone in the dark” with nothing to occupy her mind.
Macalister said the deafblind community has banded together to put pressure on the government for continued funding, which she said should be made permanent. She dreams of deafblind folks across the province having 24/7 access to intervenor services, similar to what she sees in Ontario.
“We feel that it's just wrong that we have to continuously make this fight...because it's our human right to be part of the community, to be participating in something outside of just our own mind,” Macalister said. “It's really tiresome though, having to continually try and request funding and fight for our rights and just to have some basic access to life.”
Sheila Malcolmson, minister of Social Development and Poverty Reduction in B.C., told Black Press she is aware of the importance of these services and is now working on a way forward.
“I’m looking forward to having more to share soon,” she said.
Shannon Simpson, communications lead for deafblind community services (DBCS) with CNIB, said the organization’s leadership team has had positive conversations with the government.
“While we do not have concrete details just yet, we are feeling optimistic about the future of DBCS in B.C.,” Simpson said.
Members of the guild where Macalister weaves said it’s been a delight to have Brenda join them, and that she’s taught them so much.
“If for whatever reason she can't come here anymore, it's going to be a huge loss,” said Megan Tilitzky.
“It would be a big hole in our group...she contributes so much,” Linda Purjue agreed.
In Canada, it is estimated that 466,000 people over the age of 15 have some degree of dual sensory loss. CNIB estimated there were about 1,033 deafblind people in B.C. in 2022.
To help break down barriers, visit CNIB’s advocacy page.
With files from Austin Kelly
