Jessica Vliegenthart was 20 years old when she became paraplegic after suffering a severe spinal cord injury.
Doctors said she was still able to have children, but she struggled to see how parenting could fit into her new life.
“I thought, ‘I don’t want to add to this nightmare.'”
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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.”
Around that time, Vliegenthart married her husband. Slowly, having kids was back on her mind.
“It was almost just like the next thing to do in life,” she said.
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But starting the process to have children was more complicated for Vliegenthart because of her disability.
“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.
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“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.”
It didn’t help that, throughout her pregnancy, she had a lot of questions her doctors couldn’t answer.
“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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She had the pre-baby jitters like most other expectant mothers, but they were compounded by fear about how her disability could affect her pregnancy.
“Not being able to look it up and have an answer sitting there was really frustrating.”
Lesley Tarasoff can attest to a major lack of data about pregnancy and disability in Canada.
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.
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“Just in general, a lot of health-care providers don’t receive a lot of training (or) education around disability broadly,” said Tarasoff.
“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 needs 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.
Each time Vilegenthart saw a doctor, she was frustrated to find that the bed height wasn’t adjustable.
“Trying to get gynecological (and) obstetrician care… when you can’t get up on those beds 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 it was difficult for her to wear her baby in a carrier and also push her wheelchair on rough terrain — a reality which often confined her to her house.
“The first six months was really challenging for me. It was like a force… I had to slow down,” she said.
Access is worse the farther away you live from major cities.
“I’ve interviewed women as far as two and half hours away from Toronto who (…) come to Toronto for care because their community doesn’t have a specialist,” said Tarasoff.
Everyone’s needs are different
“People with disabilities often make really great parents,” said Kristy Brosz, a medical social worker in Calgary.
She works with patients and their families after there is a diagnosis of disability or chronic illness.
“They’re very thoughtful about their priorities… they’re used to having to prioritize their day and be vulnerable.”
But these parents have unique needs, and Brosz says the medical system rarely provides specialized support for the pregnancy and parenting phases in a patient’s life.
“Often, patients are looking long-term (and want help) making choices about having kids or not… but a lot of times, the medical system is just saying ‘let’s focus on your diagnosis and treatment.'”
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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.”
In reality, the needs of two patients with the same disability will be drastically different, which is why Brosz says there needs to be a more individualized approach to treatment.
“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.
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In Vilegenthart’s experience, having a community of other parents with disabilities has been life-changing.
“The single greatest resource out there is other people who have done it in your situation. Once I found a network of women with spinal cord injuries who had young kids… it was amazing,” she said.
“We ask each other questions about everything from labour and delivery to how to handle a kid’s birthday party when the place isn’t accessible to you.”
“Find other parents with disabilities who have figured it out, because somebody has figured it out.”