Jessica Vliegenthart was 20 years old when she became paraplegic after suffering a severe spinal cord injury.
“I thought, ‘I don’t want to add to this nightmare.’”
Vliegenthart says it took five years after the accident before she felt like herself again. “Spinal cord injuries are a massive physical trauma,” she said.
“I was lucky, I escaped a lot of the psychological trauma that can go along with it — I never experienced depression or anxiety or fear or anything like that — but it took me five years to re-calibrate.”
“It was almost just like the next thing to do in life,” she said.
“I had to go off some medication I’m on that makes my life livable. That was really hard.”
She was also worried about re-learning things as a mom who is also paraplegic.
“I’m a super active person… I had been travelling the world playing sports, now I have a full-time demanding legal career. I had gotten my life dialed in so well with my disability,” Vilegenthart said. “I was worried I was setting a bomb off.”
“For moms with disabilities, especially when the mom has a (physical) disability and is carrying the child, trying to get the answers to questions about what’s going to happen and how things work… that data simply doesn’t exist,” she explained.
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“Not being able to look it up and have an answer sitting there was really frustrating.”
For her research as a postdoctoral research fellow at the University of Toronto, she has interviewed dozens of Ontario women with different types of disabilities about their pregnancy care experiences. One common thread exists: there’s very little information about it.
“Nearly 12 per cent of Canadian women of reproductive age has a disability… (but) we know very few doctors, nurses, social workers, et cetera have training around disability and pregnancy, specifically.”
This can contribute to feelings of confusion, fear and anxiety in expectant mothers who have a disability. It also makes it difficult to advocate for better health-care services — ultimately, it can perpetuate the barriers to adequate care that disabled parents sometimes experience.
Barriers to access
The ne of a parent with a disability will vary depending on the kind of disability they have, but one thing is clear to Tarasoff: most maternity care settings “aren’t really set up for women with disabilities in mind.”
“This is in terms of physical accessibility, but also around the different ways (people) communicate in learning and reading levels,” said Tarasoff.
“For some reason, they don’t exist. Trying to get gynecological (and) obstetrician care… when you can’t get up on those b is a challenge,” she said.
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“I want to make it clear that my medical team did the best they could. I don’t want to make it sound like it was their fault, because, to be honest, they were kind of pioneers.”
The physical barriers continued after Vilegenthart had her son. She quickly realized that she couldn’t wear her baby in a carrier and also push her wheelchair — a reality which confined her to her house.
Access is worse the farther away you live from major cities.
Living in Kamloops, B.C., Vilegenthart had to travel to Vancouver for appointments regarding her pregnancy and her spinal cord injury. “You have to live in those places (or) you’re kind of stuck making it up as you go,” she said.
Everyone’s ne are different
“They’re very thoughtful about their priorities… they’re used to having to prioritize their day and be vulnerable.”
In her work, Brosz tries to prioritize concerns like these, but it can be difficult to provide resources for people with lesser-known disabilities and illnesses. “In some ways, it does depend on what your diagnosis is (when it comes to) how much support you’re going to get.”
“How do we capitalize on the strengths of a loving family?” she said. “A lot of patients have been living (with these symptoms) for a while, so they already know what they need,” and any external supports should focus on maximizing the systems a family already has in place.