By Célie Dugand
Living an ordinary life, Martine Bédard suddenly lost her sight in 2018 at the age of 51 after a bout with pneumonia and the breakdown of her immunity system.
For his part, the artist Bruno Robitaille is afflicted with eight eye ailments that can’t be cured; he’s been slowly losing his vision since 2000. Both have had to completely readapt their lives.
“For the first year,” recounts Martine, “I just sat in a corner of my living room wishing to die every day. Losing your sight gradually is full of little sorrows. But when you lose it overnight, it’s a tsunami. It’s a complete change of lifestyle. You have to decide whether to give up or continue on. I’ve always been an optimist, that’s what’s saved me.”
After her “black year,” as Martine calls it, she started to gather information. She discovered two associations: The Canadian National Institute for the Blind Foundation (CNIB, or INCA in French); and the Regroupement des aveugles et amblyopes du Montréal métropolitain (RAAMM). She decided to get involved with both groups. “It’s good to be with people living through the same thing. You feel understood. It’s important to be supported by your peers,” she confides.
As for Bruno, he was born blind but his left eye was saved. However, his declining vision was predicted by doctors. So he has had to deal with vision that is weakening year by year. “I accept that it’s regressing,” he says, “I take measures. I have no choice.” Nonetheless, he is losing his autonomy.
Measures Taken
According to the Regroupement des aveugles et amblyopes du Québec (RAAQ), over 200,000 people in this province are either partially or totally blind. Fully 80% of the information our brains takes in is visual. When people partially or totally lose their vision, readapting is necessary.
Martine says: “You have to relearn to do everything: walk, cook, surf the web, phone. There is a bunch of little adaptations. Happily, I’m someone who is logical, analytical and Cartesian.” She always puts things is the same place in her fridge.
After her black year, she met a social worker at a rehab centre as well as a sort of a life coach who taught her how to use her oven. Despite it all, according to her, it takes years to adjust to daily life. She’s still learning things.
According to RAAMM’s Director General, Pascale Dussault, the length of the adaptation process for someone depends on the degree of their vision loss, their combativeness, whether or not they learn the braille alphabet, and their age.
Getting around is a real trial for people suffering from a visual deficiency. “It’s tougher to take public transit, so I take adapted transport,” says Bruno. “I have a driver. It’s tough to depend on someone, but I have to adapt.”
Getting around on foot is no mean feat either, he explains. “I can’t go at everyone’s speed. Everyone is in a hurry. I end up getting jostled around. And on the streets there are blocks of cement I don’t see. The world is dangerous.”
Working also takes some adjustments. Bruno uses a 42 inch screen. Even if the computer is very big at least he can get along. And that’s what’s important to him.
Martine has had to stop working. “My employer wasn’t ready to accommodate me. For my part, I have a huge need to perform. I was a manager, I couldn’t handle it in the beginning,” she adds.
Missing Things
On top of the adjustment process, people who lose their sight have to grieve the loss of certain things in their life.
For Martine, the toughest was missing work. “Your profession is a part of your identity. When you present yourself to someone you tell them what your job is. For me there’s a social impact because I really miss the folks at work. You spend a lot of time with them, so you lose a part of yourself,” she explains.
She also missed her driver’s license, and still misses it to this day. “It’s a true loss of autonomy, because I can’t go anywhere alone. It’s very frustrating,” she says.
Her husband became her peer helper. Martine considers herself lucky to have an entourage so close to her. A devoted reader, the loss of the ability to read was tough. She found an alternative with a portable audio reader, which she takes everywhere. “That was my life preserver. At the beginning, that was the only thing that counted for me,” she recalls.
For his part, Bruno thinks that he won’t be able to accept it if he goes totally blind. For example, he can’t deal with the thought of not seeing colors after having known them.
“I’m scared of going blind. It’s different for people born blind. They’ve never known anything else, so it’s infuriating, but that’s how it is. I’ve seen blue, and I won’t be able to accept not seeing it. Those who are born blind don’t know what blue is.”
New Activities
Martine was looking forward to her retirement so she could travel. Since going blind, her future is very different. She knows that she will never drink a coffee on a café terrasse while admiring the Eiffel Tower, but she can still smell the odor of croissants.
She has become involved in new activities. Wanting to be part of the solution to support the inclusion of the visually handicapped, she has become a volunteer. She is a vice president and on the board of both the RAAMM and the RAAQ. She also passes on her love of reading by leading seminars on the topic.
On the other hand, Bruno finds solace in music and writing. He started writing at age 13, in 1998, while going through a difficult period. He decided to put his torment on paper. “I was in pain, I needed to express myself, to transmit my rage through my writings,” he recalls.
He kept his writings in his bedside table until 2010, when he discovered the Café Graffiti. He learned he could have his texts published. At that moment, his writing hobby became professional.
Four years later he opened his own YouTube channel to share his songs, which he describes as old school rap. His lyrics denounce the problems of his neighborhood and the government. He’s been listening to rap since he was 12, and considers it a good way to get people together, as well as a means of self-expression. “Music reaches people. We’re all able to listen to it. You have an emotion and you transmit it through your music. It’s fun and original.”
Losing his sight hasn’t prevented him from pursuing his projects. The author of eight books, Bruno is working on his ninth. This time it won’t be a poetry collection like the rest, but a novel. “I feel like writing a real novel. I think that at first I wasn’t ready, but I’ve been writing the story in my head ever since I was five.”
A Ways to Go
Even with associations working hard to accompany the visually handicapped, not all cultural activities are open to the blind. Many movies and Quebec TV series are not described for the visually handicapped. Most museums are not adapted.
According to the director general of the Quebec Foundation for the Blind (Fondation des Aveugles du Québec), Ronald Beauregard, we don’t talk enough about the cause. The state should engage in more awareness raising and prevention, because doctors can foresee certain ailments.
Even if there’s room for improvement in terms of the inclusion of the visually handicapped, Martine remains optimistic. She dreams of the day when society will adapt: “I want to be a part of the society in which I live. I don’t want the Earth to turn around me, I want to turn with it.”
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