Why parents with disabilities often become advocates for themselves — and their kids
Parents living with disabilities often face negative stigma about who 'should' be a parent, says researcher
When Kai Black and his six-year-old son Mateos sit down with a book, the two work together to create a story all their own.
"I would say to Mateos, 'What's the picture on the page, Mateos?' And he'd describe: 'There's a boy holding a pumpkin, Dad.' I said, 'That's great. Here we go. Once upon a time, there was a boy named Jack, who was told by his mother to buy a pumpkin…'"
The two then go through page after page like this.
Black, a Toronto-based producer for CBC Music, is legally blind. When he was a teenager, he developed Stargardt disease, which rapidly deteriorated all but his peripheral vision.
"I know there's a lot I can't do in a conventional way," he told The Doc Project's Sheyfali Saujani.
"I've never been able to teach my son to read words. I've never been able to lie on the bed and read a storybook to him."
But Black's condition made him more resourceful and he adapted to a society and infrastructure that often failed to accommodate him. He's brought that resourcefulness to his role as a parent.
"I realized in time that maybe he wasn't learning to read, but he was learning to listen. And he was learning how to activate his imagination."
Black says he's been able to develop a close and deeply rewarding relationship with his son, because of his disability, rather than in spite of it. But he's still run into challenges.
"There's not one child at his school who has a disability. And in fact, I can't even think of one time when a person with a disability came into the school to talk about their disability, or develop awareness for the kids there," he said.
"I find it a real shame. I'm his only touchpoint for disability."
He says that disconnect has also kept him at arm's length from the school's resources for parents.
He's unable to read the school newsletter, for example, because it's served in an online-only format with a font that's too small.
"It would be great to have information communicated in a way that can make you a full part of the community," he said.
The myth of who 'should' be a parent
Lesley Tarasoff, a public health sciences researcher at the University of Toronto, says parents with disabilities are often compelled to become their own advocates when institutions like the education or health-care systems aren't prepared for them.
"This can be really tiring and frustrating — having many challenges related to a disability — and then on top of that, having to constantly advocate and educate other people to get services and feel included in things," she said.
While there are official resources for children with special needs, the same can't be said for parents who are themselves living with a disability, she says.
Tarasoff says that many people's views of "who is or should be a parent" doesn't include people with a disability.
"These are also attitudes and ideas embedded into institutions," she added.
It seems that the maternity care system isn't really set up with parents or mothers with disabilities in mind.- Lesley Tarasoff
Wendy Porch felt the pressure of these views since she was a little girl. She was born without most of her right arm and part of her left hand.
"I didn't think I was going to be a parent as a person with a disability. I wasn't sure if I was ever going to be married," she said.
Eventually, she did get married, and had a son, Jasper. She calls the day he was born the best day of her life.
Maternity ward care
Tarasoff's research primarily focuses on how new and expecting mothers with disabilities navigate the health-care system.
"It seems that the maternity care system isn't really set up with parents or mothers with disabilities in mind," she said, explaining that the facilities like examination tables, ultrasounds or washrooms may not be accessible for people with mobility limitations.
Porch says she encountered roadblocks similar to those Black faced with Mateos when she had Jasper.
She recalled that a breastfeeding consultant didn't offer help even though she had trouble holding her newborn. They later contacted a lactation consultant on an emergency basis, who was more accommodating.
"I'd say, 'Oh come on, really? Like, you've never had a mom with a disability before?' And they swore to me up and down: 'We've never had one like you before. We have no idea what to do,'" she said.
Despite these kinds of incidents, Tarasoff says things are slowly improving. She noted Sunnybrook Hospital opened an accessible pregnancy clinic in 2017.
Her research also hopes to pin down, for the first time, pregnancy rates of Ontario women with physical, sensory, intellectual and developmental disabilities.
'He's blind, but he's still a good dad'
As Jasper, now seven, grew up, Porch ran into similar roadblocks that Black did with Mateos. So in lieu of on-site resources, she decided to become one herself.
"Being a person with a disability growing up — being a little bit different — means that I consciously try to seek out ways of making people feel included," she said.
Some resources exist outside the formal health-care system. The Parenting with a Disability Network (PDN), hosted by the Centre for Independent Living in Toronto (CILT), offers workshops.
Porch, CILT's executive director, reached out to Jasper's school to ask if she could speak about being born with a limb difference.
She told the students about her disability, and took questions to help them understand why their classmate's mom was different.
In the end, she says, the kids were "just bored" — a reaction that delighted Porch.
Porch said she was worried that Jasper might be embarrassed about her disability, but that hasn't borne out at all.
"He'll say, 'Well Mom, you have a disability, and you're a little bit different, but that's great, isn't it?" she said. "You know, he's more embarrassed by my singing."
Despite the challenges they've faced, both Black and Porch remain optimistic, because Mateos and Jasper love their parents just the way they are.
They also credit their spouses, who have supported them in their parenting duties and never once doubted their ability to raise children.
Black remembers a recent swimming class when a new lifeguard asked him to sign in on a form with a very small space to write his name. Mateos stepped in to help.
"He looked up at the lifeguard and said, 'He's blind, but he's still a good dad.'"
Written by Jonathan Ore. Radio documentary "Kai and Wendy" produced by Sheyfali Saujani and Veronica Simmonds.
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