Brenda Macalister was born with Usher Syndrome, a rare genetic condition that causes hearing and vision loss. She was born deaf and throughout her life her vision has narrowed and tunnelled, rendering her almost completely blind.
After she lost her sight, Macalister relied on her husband to help her navigate the world and communicate with people, which meant she lost some of her independence and he couldn't always do the things he wanted to.
In 2022 the B.C. government announced funding for deafblind intervenors — people who operate as the eyes and ears for people who have no sight or hearing. It granted $1.1 million over three years for the Canadian National Institute for the Blind's (CNIB) intervenor services program. Intervenors are more than interpreters, they help people with deafblindness navigate, communicate and help them maintain independence.
When Macalister came to the Quesnel Observer office, she brought Pamela Goertz with her, an intervenor who, through touch and American Sign Language (ASL) helped communicate questions to Macalister and translated her answers. Goertz described the shape of the table to Macalister and where people were relative to her in the space.
"We got intervening services in B.C. awhile back and prior to that I would have to just be at home, alone, with just my husband but not a lot for me to be able to do," Macalister said, through Goertz. In 2022 when the government announced funding for intervening services, Macalister was extremely happy. "I wouldn't feel so isolated and cut off from everything just staying at home and I'd have more opportunities to go out and about and meet people, and not just depend on my husband."
The funding for deafblind intervenors is set to run out in March. Throughout the recent provincial election there was a letter-writing campaign to MLAs and candidates across B.C. to help advocate to make renewing funding and making it permanent a priority.
"We've been lobbying the government requesting for ongoing funding. They still haven't responded and all of us are wondering what happens in March 2025," she said. "Are we, all of us in the deafblind community, going to be stuck at home, unable to access the world like we can when we have intervenors?"
The CNIB says between 2023 and 2024 their Deafblind Community Services has delivered nearly 6,000 hours of intervenor service in B.C., with demand growing. They added there are around 466,000 people across Canada over 15 who are affected by deafblindness.
"I want to keep this as my normal. I don't want to go back to being so isolated and cut off," Macalister said. "I cannot be alone by myself, just in my own head, dealing with my own emotions. And then being able to just go out by myself, I'm not able to just go walk down the street like everyone else but having an intervenor sets me free from that sort of mind prison."
Goertz added that Macalister has told her how life changing it has been to have intervenor services. Macalister agreed that she feels more involved in the community and allows her husband to have a break from helping Macalister.
"It's hard for him because he's trying to do different things but I'm there depending on him," Macalister said. "I feel so much better when he gets to do his own thing and we both have a sense of our own independence and when we come together, we're happier. We've been married for 53 years so it's been a real challenge for us to navigate this complete loss of sight."
Macalister explained that everyone in the deafblind community is a little bit different in how they communicate with intervenors and some have an easier or more difficult time communicating. She said an intervenor will match the needs of the deafblind person.
Goertz was an interpreter who graduated in 2007 and began working in the Cariboo after the pandemic. She took a short training program to become an intervenor and has been working with Macalister for around nine months.
The ministry of social development and poverty reduction said they are reviewing the program.
"The province is dedicated to ensuring British Columbians have the supports they need to thrive – including the deafblind community," a representative of the ministry said in an emailed statement. "The province is reviewing this pilot initiative and how to best serve the deafblind community."
They added that the province recognizes and appreciates CNIB's work with deafblind people and understands how important their work is.
Macalister is hoping people reach out to their elected officials and advocate for the province to expand its intervenor program.
"I want to have intervening service until the day I die," Macalister said. "I don't want to be just left wasting away in my own mind. It's very vital that all of us who are deafblind can be able to participate. We have perfectly good minds, we have intelligence, we just can't access a lot of the information that everyone else can."
