Four years ago, when Marie-Elise Marcoux was looking for a home in Rossland, British Columbia, she thought about the future.
“I was looking at accessibility,” Marie-Elis, a speech-language therapist, remembers thinking. “Like what if one of us gets in a bike or ski accident and we end up in a wheelchair? Or what if we have a disabled child? I wanted a house that we could live in on the main floor and that was accessible without having to do too many changes.”
She couldn’t have guessed that in 2019, when her and her partner Kenyon welcomed their son Loïc (Low-ik) into their lives, securing a more accessible home would end up being a perfect decision for their family.
Moving over mountains
Marie-Elise grew up in Winnipeg, Manitoba. She discovered BC while working as a treeplanter up north.
“I grew up in the city and the thought of rural life was [just] farming, which I appreciate now but wasn’t [me] at all,” Marie-Elise remembers. “Then when working in northern BC there was this amazing culture. Just seeing all these different small towns, mountain towns. Just this amazing culture and great vibe here.”
Ten years ago she landed a practicum in Trail, moved to Rossland and fell in love with the area and her partner Kenyon. He was doing an engineering co-op term at Teck at the time. The couple worked all over the province, and finally when a job opportunity in Trail popped up, Marie-Elise took it.
Today Marie-Elise works as a speech-language therapist in Trail and Nelson. She loves her job and raising a child of her own is something she has also always wanted.
“I wanted to be a mom my whole life,” Marie-Elise says. “It makes me feel great. I just love nurturing a human being, and he brings so much joy into our lives.”
In January 2019, Loïc was born down the hill at the Trail hospital. The next day he was air-lifted to Vancouver and the family spent the following five weeks in the BC Children’s Hospital (BCCH) neonatal intensive care unit.
On a good day, it takes seven hours to drive to Vancouver from Rossland; the trip is even longer during the winter. And in the past two and a half years, they’ve gone to the BCCH in Vancouver about a dozen times. But raising Loïc in Rossland is something that feels right for Marie-Elise.
“I do feel so grateful that I get to raise him in a small town surrounded by other little communities rather than the big city,” she says.
Shifting into diverse
Loïc is neurodivergent. This term — coined in the 1990s by an autistic sociology professor named Judy Singer — stresses that the development disorders some of us are born with are normal variations in the brain that come with certain strengths. For Loïc, variations include having an intellectual disability, Down syndrome, and mobility challenges.
Even though Loïc has trouble walking, he is incredibly active for a 2-year-old. Whether playing in the mountains with his parents, cruising along Ferraro’s grocery aisles, or taking inventory of a favourite playground, Loïc operates his tyke-sized wheelchair like one of Rossland’s best slalom ski racers.
“I remember one of the first times I took him out in the wheelchair,” Marie-Elise says. “He threw a fit on Columbia Avenue and [wanted] to go in one direction and I really needed us to go in a different direction. I was filled with joy because toddlerhood is all about developing your independence and exploring, parents chasing after you, and pushing them away. I want him to be able to be independent.”
Still, raising Loïc is not without its challenges.
“In his first year I isolated more than I wanted to because I wanted to avoid certain interactions, like going to playgroups and stuff,” Marie-Elise says. “The feeling of overwhelm, of everything we were going through medically, then contrasting that with being around moms and typically developing children.”
“People mean well, but the occasional ‘I’m sorry’ or uncomfortable pauses I would get when disclosing hurt as a parent. I wanted my baby to be celebrated like all the other babies. I definitely feel that I field these interactions with parents often and it takes a lot of emotional energy.”
After Loïc turned one, however, those uncomfortable interactions happened less and less. Marie-Elise found it easier to connect with parents, and she and Loïc began going to public programs and playgrounds more often.
“My choice now has been to be visible rather than isolated and hidden because how are people supposed to learn and know?” Marie-Elise says. “It also helps that Loïc is older now, and he can just show the world how awesome he is. He’s so social he’s being his own advocate.”
Fair play on the way
Thanks to families and advocates in the area, Kootenay communities are slowly becoming more accessible.
In 2019, Trail’s Glenmerry Elementary School installed one of the province’s only fully accessible playgrounds, and the new Gyro Park playground has a wheelchair accessible merry-go-round. ‘Cycling Without Age’ offers scenic rides to disabled individuals on electric trishaws in Rossland, Trail and Nelson. And adaptive off-road biking or hiking trails near towns like Winlaw and New Denver have been gaining popularity.
Marie-Elise welcomes the progress she is seeing. She regularly brings Loïc to play at more accessible playgrounds in the area, where he can do his own thing with more ease. She also believes that accessibility is more than simply changing a physical space.
“Our daycare has been really great, and one of the perks of being in the Kootenays is the shorter wait time to access funds the government allocates to the children who require them,” she says. “But it’s common for families across BC to not get into daycares because of their diagnoses or to be on a waitlist for funding support.”
In Castlegar, a 30 minute drive north for Rosslandians, the Kootenay Family Place has been helping families in the area access child and youth development funding and support services since the 1970s. Child development consultant and Castlegar native Holly Mohammed has been working there since 1999.
From sleep consulting to daycare placement to helping with a kindergarten transition, Holly helps families build the skills and strengths they need to be their own best advocates.
“One of the most important things is how you watch a family blossom,” Holly says. “To see the hard work and advocacy, the seeds planted, the discussions over the years grow within the parents. It is extremely rewarding, and once I say goodbye, I know that that parent is okay.”
Holly works under the Supported Child Development (SCD) Program. The program is grounded in the belief that inclusion is the most important principle in supporting children to participate in the community. Parents and families living as far as the east shore of Kootenay Lake or west as far as the Kettle River can apply.
Marie-Elise knows both the Kootenay Family Place and Holly Mohammed well, and she credits the SCD program with ensuring Loïc has access to equipment that supports his growth and inclusion in daycare and at home.
When she found out that Loïc’s contact lenses wouldn’t be covered by MSP (Medical Services Plan), Holly worked with a local optometrist to help subsidize the cost. And last winter, Holly found a snow sled in her program’s resource library that worked perfectly for Loïc to use at his daycare and share with his friends.
“Holly is like our guardian angel,” Marie-Elise says. “She’s the most amazing advocate and will be with us until Loïc hits school. Holly advocates on my behalf when I need to focus my energy on being a mom but still need my concerns heard.”
It takes a village. A province. A nation.
An estimated 926,100 people over the age of 15 are living with some form of disability in BC. That’s twice the population of the province’s capital city and nearly a fifth of BC’s population. This doesn’t include children under the age of 15 like Loïc.
New acts such as the Accessible Canada and Accessible British Columbia Act are pledging millions of dollars to help make Canada a more accessible nation.
However, both acts have been criticized by advocates for being too weak to make meaningful change. Concerns include little enforcement, unclear requirements, and loose timelines.
“We exclude people in this country,” said Gabrielle Peters, a wheelchair user in Vancouver, in a news article. “We exclude people by design, we exclude people by our policies, and this legislation is failing to prevent that.”
Marie-Elise and Holly would love to see more government and community support come to the Kootenays.
“There are always budget constraints,” Holly says. “Once we’ve reached our budget for the year and children are sitting on a waitlist, it’s a problem. We could benefit from more family support programs funded by the government for families with children ages zero to six.”
Supporting more professionals would bring more to the region as well.
“My dream would be to have a clinical counsellor and play therapist on our team,” Holly says. “We’ve always been missing that.”
From making new playgrounds more accessible for all, to improving sidewalk curbs, to stacking local library shelves with books written about or by disabled people, Marie-Elise has many ideas as to how small towns like Rossland can be more inclusive and accessible.
“We just need to be part of our community, too,” Marie-Elise says. “My wish for Loïc is to live in a community that accepts and loves him for who he is, sees his abilities and struggles, and steps up to support him just like our community would and does for anyone else. To have the community shoulder this together. Imagine what great things we could do!”