Defying Definition: Seeing Beyond Disability

If you saw Christopher’s profile on a social media site he’d seem just like an average 15-year-old boy: his favourite game is Pokemon Go!, he loves to hang out at the mall and, as of August, he was really into the latest in the Ghostbusters franchise.

Once described as a “sensitive kid,” Christopher is getting better at jumping into typical high school banter. “This is going to sound bad,” says his mom Joanne Barker, “but he eggs the other kids on. He gives it right back to them,” she notes with a hint of pride. One suspects that Christopher’s feistiness and mischievous grin are largely due to his mother’s passionate personality. “I can rub people the wrong way,” she confesses. It’s clear though, that her resiliency and insistence on bucking the system is why Christopher continues to surpass doctors’ expectations as someone who lives with severe dystonic Cerebral Palsy (CP).

Doctors insisted he’d need a g-tube (but he’s able to eat) and that he’d never be able to speak (he now has a vocabulary of a robust 5000 words). The condition, however, still makes it hard for Christopher to control the movement of his limbs and impossible for him to perform simple tasks like dressing or feeding himself. “I hate that!” exclaims Christopher.

Sharing to Shed Light

“His brain is perfectly fine,” adds Joanne. And while it’s clear from the sparkle in his eye and his laughter at my jokes that Joanne is telling the truth, it can still be a struggle to get people to look beyond Christopher’s disability and see the artist, the comedian and, yes, even the hormone-driven teen that lies within.

It was one of the motivations behind Christopher launching his very own blog, Living with a Disability. His description of himself in the blog captures it best:

Hi I’m Christopher! I’m not your average teenager, I have the regular teenager problems: nagging parents, too old to do some things and too young to do others, I have to keep my room clean, I worry about girls liking me and being invited to parties – all the regular crap. BUT I also have cerebral palsy which makes a little harder because I have to work harder to do everything and even to make other teenagers see me.

A Different Ballgame: Parenting a Teen with CP

Joanne, who won VHA’s Heart of Home Care Award in 2015 for her incredible dedication to Christopher as a single working mom, is reluctant to give sweeping advice on raising a kid with CP. “Every child is unique,” she says. “Making sure that, above anything, they can talk to you about anything is essential— because for them it’s a different ballgame. The other kids aren’t going to understand because they’re not going through the same thing.” His bedroom is considered his safe space. “ He can go into his room and say, ‘I want to talk,’” she adds. Joanne also notes that depression for teens with CP is a common problem. And while it can take a terrible mental toll, it can also wreak havoc on Christopher’s already-fragile physical state. Joanne insists on a proactive, ear-to-the-ground approach that encourages open communication at all times.

She also makes sure Christopher has lots of opportunities for social interaction. Aside from hanging out with his neighbourhood buddies daily, Christopher regularly connects with two teens he met through March of Dimes and Grandview Children’s Centre respectively, many years back.

“They need that,” says Joanne thoughtfully. “They have to have a peer that walks the walk you walk.”

“I’m hoping he starts working harder at high school,” says every parent of teenage boys, including Joanne.

She cautions parents to be thorough in their investigation of educational options for their teen living with a disability. Joanne, who is confident that Christopher is able to complete the standard academic curriculum that will allow him to enter college or university, discovered that, without advocacy, he might have been put on a different path.

“We’re looking at Trent University because they have a program for people with disabilities and provide facilitation when you need it.” They are also looking a little closer to home at Durham College. “There’s no reason he can’t work in IT (information technology),” notes Joanne.

For now though, Christopher, like most teenagers, is focused on getting through the ups and downs of high school—the first loves, the bullying, the laughter and the homework.

In a world where “fitting in” is paramount, Christopher confronts being different on a daily basis. His aim as a blogger and advocate for those living with a disability is for the able-bodied world to dig a little deeper to see the film and video game-loving prankster on the inside and “not to see the wheelchair,” Christopher says emphatically.