Every four years, we can be sure that people with disabilities are going to get a few headlines, and that the stories will be largely positive. That time was upon us just a few months ago, as the Paralympics took place in Rio.
It was a good thing. I watched, and hope others did too.
But as the parent of a child with a disability, I think often about narratives surrounding disability in our society—and how, on a daily basis, the world treats my son and me.
My son is five years old. He has cerebral palsy. But that is just one sum of the many parts that make him who he is. He loves technology and he loves his family. He likes music and dancing and books. He may just be the city’s biggest little Blue Jays fan. He has a smile that lights up a room. He has really awesome hair.
Like the rest of us, he is many things. But too often, people just see the disability—he wears orthotics and travels largely in his wheelchair. And when people see his disability, they start to feel sorry for us.
See, when you feel sorry for me and for my son, you send the message to his highly perceptive little soul that his existence is a problem. That we should all feel bad for his mother and sorry for him being here, as he is.
I’m not sorry and I do not expect my son to make apologies for who he is.
And don’t call me a Supermom or say, “I don’t know how you do it.” I that get you are trying to be kind and show compassion, but the effect is the opposite.
And when you put your arm on mine and say, “God bless you,” I get why my son looks at me with that look that says, “What’s their deal?” Thanks for the good intentions, but it’s patronizing. We’re doing just fine, thanks.
See, the disability isn’t the problem. The real problem, as I quickly learned when my son was diagnosed and as he is now beginning to realize, is that he was born into a world that is still largely not sure what to do with people like him.
Too many people don’t know how to act around disability. Our presence makes people feel uncomfortable and even fearful, as hanging out with other moms at my neighbourhood park has shown me.
Many people are especially kind and patient. I do appreciate that. Only once has someone called my child retarded. And only once did someone ask what I did while pregnant to cause my child’s disability. Yeah, it happens and yeah, “only once” is sarcasm.
Curious? That’s great. Ask questions and I will be happy to talk with you about it. And soon, my son will provide his own answers.
But don’t assume that because my son is in a wheelchair that he can’t walk. (He can.) Or that because his speech is unclear that he doesn’t know what you are saying. (He does. He can read and he uses device to speak in sentences.)
He is intelligent and thoughtful, often beyond his five years.
If you spent a day with us, you’d realize just how awesome my kid is and how lucky I am that I get to be his mom. Yeah, most moms would say that about their kid, but that’s kind of the point. Sure, he sometimes melts down when he doesn’t get his way, and displays expert negotiation skills to get another bedtime story or more iPad time. That’s “typical” kid stuff. And I am a typical imperfect mom.
But we laugh every single day.
Our life has its challenges and the external stuff related to his disability can be frustrating. Toronto’s mayor, John Tory, recently took a stance against the lack of air conditioning on our city’s subways; maybe he would like to travel around the city with my son to see how inaccessible many parts of this city still are?
But our life is also full of meaningful opportunities and connected us with some incredible human beings—many who also have disabilities.