- Margaret Kelly Pearson is a native Haligonian working without a net. A longer version of this piece originally appeared on her Facebook.
We live in a society that is very focused on independence.
It seems as though the goal for an adult life is independence, and if you can't ever reach that goal, then perhaps you haven't really grown up. You're doing it wrong.
It makes us uncomfortable to think about what it might mean if we became disabled. To be disabled, somehow, means to suddenly be less—less capable, less desirable, just less.
My cerebral palsy wasn't really something we talked about as a family. I had special shoes, and other contraptions and appointments with doctors that my sister didn't have. To me, these things weren't strange. I didn't know any differently. I was me, and these were things I had to do. I didn't have any perception of myself as "disabled."
Now, I wonder if the people that I thought of as my friends when I was small—were they treated as special and extra-caring because they were friends with me? Did some teacher or parent make them hang out with me?
I remember feeling pressured by other kids not to associate with the "short bus" kids, and being worried that if I did, then whatever weird social place they occupied would rub off on me somehow. I wish I could say that I was so very self-confident that it didn't worry me. But I was a kid and there's no instruction manual for how to grow up, let alone how to grow up different from everyone else.
I imagine that this must have perplexed my parents, too. Raising me wasn't the same as raising my sister, or how they themselves were raised. I couldn't be expected to just leave the house and stay out to play until the streetlights came on. Trying to explain to me where I fit in the world must have been tricky. How do you explain to your little girl why she can't ride a bicycle when everyone else can?
This is the first time I remember feeling like my body created a kind of trap. When all the other kids went flying around the neighbourhood on their bikes, I sat on the steps and read a book.
I think that this is when I first learned what it means to be what other disabled writers have termed a "good cripple"—to put on a cheerful face and not to create a problem, when the reality of your situation is getting you down. Making other people feel poorly about your disability doesn't change anything and often it makes them less likely to help you, when you will undoubtedly need them later. This is the heart of the problem with being a disabled activist—as a disabled person, you are incredibly aware of your dependence on other people and that necessarily breeds a reluctance to piss them off. A good cripple makes the best of a situation, always asks politely for help, and probably even makes a joke when they do something embarrassing, so that no one will be made to feel uncomfortable. They don't rail at injustices and push back because no one takes a chance on the argumentative cripple.
Able people will always be available to fill roles that disabled people need assistance to fill. There will always be a reason why it is too complicated, inconvenient or expensive to modify attitudes and environments. At the heart of it, disabled people need able people. The reverse is almost never true.
Writing this, I am not trying to claim some kind of disabled sainthood. But what if we tried just to make it ok, just for a minute, not to have to be independent? What if we removed the stigma around what it means to need help? What if it was ok to ask questions, and just be different?
I'm sure some of you have already built amazing, strong, loving and caring networks of helpers. I am glad that you have that situation and I hope that it continues for you. But should you ever need help, I want it to be there for you, too.