Because she’s been blind for much of her life, Shawn Marsolais is adept at getting around with her walking cane. It’s when well-meaning individuals attempt to help her without asking that she can be thrown off.
“I’ll be standing on the SkyTrain platform, waiting for people to exit the train, when some invisible hand will grab me and pull me or push me onto the train,” Marsolais tells the Georgia Straight in a phone interview. “If you can’t see it coming…it’s really startling. Or people will grab me as I’m walking down the stairs. They’re grabbing me to help, but that’s probably what’s going to make me more likely to trip.
“That’s my big pet peeve,” adds the New Westminster native. “I just wish people would use their words and ask, ‘Can I help you?’ or ‘How can I help you?’ ”
Five years ago, Marsolais founded Blind Beginnings, a charity that helps children and youth who are blind or visually impaired, as well as their families. She’ll be speaking at an upcoming free community event called Seeing Things Differently, Living With Low Vision Forum. Her talk will be about etiquette around interacting with people with blindness or limited vision.
“Sometimes I’ll be walking down the sidewalk and people will yell out behind me, ‘Look out for the pole!’ or ‘There’s a garbage can there!’ That’s what the white cane’s for: to find those obstacles so I don’t collide with them. The more people are hollering at me, the harder it is for me to concentrate and avoid those obstacles.
“Automatically, people have this idea [that] if you’re blind you’re different than them, but I would say we need to remember we’re all people; we’re all the same.…Just because we can’t see doesn’t mean we can’t hear or think. If you don’t know what to do, just ask. And don’t be afraid. We’re people; we just can’t see.”
Marsolais was born with a degenerative condition called retinitis pigmentosa. She could get around without a cane and read until she was 18, when she lost her central vision. She now has about two percent of her vision. “I can see a bit peripherally: shapes, movement, but no detail. It helps me with my mobility a little bit. I can catch that telephone pole as I’m walking by.”
Now 38, Marsolais says her parents learned of her condition when she was five but didn’t tell her until she was 12. They never said that she’d one day be blind. “My parents were devastated,” she says. “In high school, I just wanted to be normal. It was something I was ashamed of. My acceptance of my own visual impairment was pretty slow. ”
Marsolais says that after working at a U.K. school for blind children when she was 25, she had a complete turnaround. “I really fell in love with the kids,” she says. “I thought, ‘How can I be so accepting and love these kids and yet have these issues about myself? Just because I’m blind doesn’t mean I can’t be all these great things. I just have to smash some misconceptions.’ ”
After moving back to the West Coast, she competed in the 2004 Paralympic Games in Athens before starting Blind Beginnings. Despite there being services for blind people in general, she says resources geared specifically to young people were lacking.
“If you’re born without vision, your understanding of the world—how things fit together, what things look like—needs to be experienced,” Marsolais says. “Initially, most parents think, ‘Oh my God, my child is never going to be independent.’ They probably have never met a blind person, and they’re terrified thinking about their child doing things like travelling or cutting their own food or cooking—just basic daily skills.
“Blindness is going to affect each member of the family a little bit differently,” she adds. “There was nothing for kids and youth and their families. We need to invest in these kids so they can be productive, self-sufficient members of society.”
Blind Beginnings offers youth leadership programs, family activities, and workshops, as well as counselling, networking opportunities, and support. (Its annual fundraiser, the “Casino Royale” Gala Dinner and Auction, takes place April 13 in Coquitlam.)
Marsolais will join other speakers at the low-vision forum, including Sunil Sachdeva, an ophthalmologist and low-vision specialist, and Ray Smith, a community outreach specialist with the Ontario Workplace Safety and Insurance Board.
Smith, who lost the vision in his left eye when he was five due to a birth defect, was injured on the job in 1986. He was working as a janitor in an automotive factory when a wooden pallet struck him in the right eye, resulting in his becoming completely blind. His kids were two and three years old at the time.
“Injuries have a ripple effect; it affects the whole family,” Smith says on the line from his Ontario home. “The house was not very happy. I remember thinking: ‘What am I going to do? How am I going to get around? How am I going to pay my bills?’ I was bitter and angry.”
He admits it took him a long time to adjust. Smith is now in a much better place. “I know the limitations of my disability,” he says. “I have new confidence and self-esteem, and I’ve got my independence back. That’s the biggest thing: being independent.”