The interview I didn't do

By Louise Kinross

Yesterday I had a call from someone at CBC’s The Current radio show asking if I’d participate on a panel this morning.

They were interviewing author Craig Davidson about his year driving a school bus of students with disabilities—the iconic “short bus.” His memoir on the topic—Precious Cargo—came out last month and we interviewed him.

CBC wanted to know if I’d sit on a panel to discuss disability and stigma from a parent’s perspective.

After saying yes, they called to tell me they were, instead, going with Ian Brown, the Globe and Mail writer who had reviewed Precious Cargo in Saturday’s paper.

Oh. Okay.

Ian and I have presented together about writing about our children with disabilities. I adored his related memoir The Boy In The Moon.

But before I got the call from CBC, saying I was ditched, I started thinking about stigma.

The CBC guy had asked me how people reacted to my son, who has a rare genetic condition and looks different, when he was a baby, and how it affected me.

I said that as a young parent I had my radar on for how people looked at or interacted with my son.

I didn’t want people judging my baby, making assumptions about him because they recognized something different in his appearance.

That’s because while I might not have been able to articulate it well, I was familiar with the stigma attached to people with disabilities: that somehow a child was less human because they didn’t have an ability or appearance or behaviour valued by the culture at large.

We strip people with disabilities of their worth—set them apart from ourselves. Any parent will tell you that their child is their world. The last thing they want is for someone to trample on that world.

The CBC guy asked me why I thought other parents might be uncomfortable when they meet a child with a disability.

A lot of people have grown up not knowing someone with a disability, I said, so their discomfort is related to lack of exposure.

But even more than that, I think we want to pretend that our kids aren’t vulnerable, that we, as people, aren’t vulnerable. Seeing a child with a visible difference reminds people that they too are vulnerable, that we’re all fragile, mortal and less than perfect. Someone like humanitarian Jean Vanier would say that’s the beauty of humanity, it's what unites us and stirs us to feel compassion for ourselves and others.

But in the Western world, the social push to individualism and competition is stronger. We tend to believe that human worth is earned, through what we do, and we can never do enough. There isn't much talk these days about humans being inherently valuable, simply by virtue of being alive. Witness our insatiable appetite for books on productivity like the recent Smarter, Faster, Better. And that extends to the way we view our kids.

The CBC guy asked how we could change negative perceptions of disability.

I said I thought children needed to be taught the value of difference and that to be human is to be different, whether in how we move, think, look, act or communicate. We need to celebrate difference, start from the foundation of our diversity.

Unfortunately, instead of celebration, we often see overt signs of marginalization when it comes to kids who fall outside the norm.

For example, the kids on Craig Davidson’s school bus ride a short bus rather than the regular-sized school bus.

Just last year, administrators at a Tennessee elementary school took this 'singling out' on transportation one step further. They decided that disabled students who were mainstreamed at their school wouldn’t appear beside their classmates in the yearbook.

Instead, they photo-shopped them looking out the windows of a short bus at the back of the book. As that yearbook got closer and closer to going to print, just how many school staff reviewed that page at the back and found no fault with it? What message did all students—disabled or otherwise—receive when they opened the yearbook?

We've seen high-profile social media campaigns by parents whose children are denied a heart or kidney transplant because they have a disability, particularly an intellectual disability. So many, in fact, that the Autistic Self Advocacy Network felt it necessary to research and publish a toolkit on transplant discrimination based on disability. Yup, many people don’t know that we routinely exclude people with disabilities from organ transplants. They're not seen as worthy of scarce resources.

It’s also common in North American health protocols to bar children and adults with intellectual and physical disabilities from admission to critical care during a pandemic.

Last year I corresponded with Dr. Dominic Wilkinson, a director of medical ethics at Oxford University and neonatologist who argues in peer-reviewed journals that it's just to ration life-saving treatment for disabled newborns. "Cognitive disability, particularly severe cognitive disability, prevents people from being able to do things, to appreciate things, to enjoy things that most people think are valuable in human life," he wrote me in an e-mail.

When I noted that people with intellectual disabilities rate their quality of life high, he wrote "happiness is important, but it is not the only important thing in life...I don't think that it makes sense to think of wellbeing (or quality of life) only in terms of happiness."

That seemed rather telling, and sad, to me: joy and satisfaction in life is less important in our culture than ability and achievement.

And what about Rick Mercer's rant last month on Canada's 'war on kids with Down syndrome?' Just how would you describe to a child that a family that's lived in, and contributed to, Toronto for three years is being sent back to Costa Rica because their son has Down syndrome? How does that not devalue children with disabilities?

Yesterday on CBC's The 180 there was an interesting interview with University of Calgary professor Gregor Wolbring, an ableism and disabilities studies scholar who uses a wheelchair. "Do I suffer because I have no legs, or do I suffer because you have legs and build everything accordingly?" he asked. He was questioning why abortions based on disability don’t provoke the same outrage as abortions based on sex. Read the comments for a window into how we view disability, and how kids are socialized to see it as less than human.

There are some positive developments on the horizon.

A couple of months ago Tommy Hilfiger launched a line of children’s clothing identical to its regular line, and at the same price point, but with adaptations for kids with disabilities built in.

Instead of tricky buttons and zip flies that are hard for kids with amputations or limited dexterity to manipulate, magnets are used. Hems and waistbands are adjustable. Certain styles fit over bulky braces or open with magnets at the back. The latter makes them easier to access for parents dressing a child with limited movement.

It’s not rocket science. Magnets aren’t new, and they’re not expensive.

But it took a mother whose 10-year-old son couldn’t wear jeans to school to start a movement that said disabled kids deserved choice in their clothes, like any other kid. Why should kids with disabilities be stuck wearing track pants?

Until Tommy Hilfiger introduced this line, no major brand had bought into the idea that kids with disabilities mattered. That they had value. For all intents and purposes, disabled kids were invisible when it came to fashion.

And that's what privilege and stigma is all about: which people are valued, and which aren't. Who is seen and heard, and who isn't.

Here's the audio from the CBC The Current interview on disability and stigma this morning.