Blog

A little while ago, I ran into (not literally) a woman I know, making her way slowly and painfully and on crutches into the building in which she lives. As she has been using a wheelchair permanently for over a year now, no longer able to walk further than tiny distances requiring only a few steps, I was stunned to see her ambulatory and asked how come she was up and about. She told me that she’d been at the hospital for surgery and “they didn’t want the wheelchair there”. And as she slowly, ever so slowly, moved past me, the image of her face, drawn in pain and humiliation, the hospital bracelet on her right wrist and her feet sliding across the floor with each small step in an attempt to make the pain less seared its way into my brain while I had no words of comfort. I was speechless, her words ripping through me.

They didn’t want the wheelchair there.

I knew that I wanted to write about this, but it’s taken me days to get past my emotional reaction to a place where I could think in words. This is clearly discrimination and had it been me, I would’ve called the Patient Relations person and if that didn’t help, the CEO of the hospital and then the Ontario Human Rights Commission, but that’s only because I used to work in human rights and I know that taking away somebody’s wheelchair is inappropriate, unacceptable and just plain wrong. Well, I would like to believe that I would have made these calls, but if you’re going in for surgery, already feeling anxious, have carefully rearranged your life, lined up help and pet sitting, how difficult would it be to take the risk of having your surgery cancelled by insisting on your rights? Especially if you maybe weren’t sure about your rights, if all you felt was the wrongness of it, but didn’t know the ins and outs of human rights legislation. This is a perfect example why I often say that in order to have a disability, you need a graduate degree in project management – not only do you need to know an intimidating number of different laws, building codes and community resources, but you also need to be able to run not just your own life, but juggle several doctors, agencies, attendants and other miscellaneous people who are supposed to help you (but so often make life more difficult). And then you have to have the heart of a lion to put your foot down and say no. Just… No.

And that’s the intellectual side of it. The one that took me five days to get to, because for those five days, I was too busy dealing with this idea that because my wheelchair takes up the amount of room of an armchair, somebody could decide that it was not allowed to be there. And it’s terrifying. My wheelchair is my freedom, my mobility and the thought of someone taking that away because… why? it would be in the way? has frozen my insides, has made me shake in fear, has made me furious beyond the capacity to think and well into incoherent hysteria.

You spend so much time building up a life where you are independent, live independently in the community, participating on an equal level with others that you forget about the other thing. You forget that someone else can, in a moment of carelessness, of thoughtlessness, of cruelty take it all away from you. That it is not just a flat tire that can bring home the reality of your inability and dependence, but more than equipment failure, another person can show you that your independence is an illusion, contingent on the cooperation of the rest of your community. And if one person in your community decides that today, they are not in the mood to cater to this philosophy, that today, it will be more convenient for them if you and your accoutrements are not in the way, you will no longer be independent.

This is why people with disabilities have not been granted rights, but instead given privileges. Because rights cannot be taken away. Because if they were rights, we wouldn’t be put in a situation over and over again, each one of us on a weekly basis and sometimes more than that where someone else decides that today, our rights are negotiable.

After a few days of bouncing from one horrible emotion to another, I remembered Ashley, whose rights were so negotiable that they physically modified her to make it easier to take care of her and that’s when it came back to me to me. The hierarchy of worth (I’d repressed that). That our rights are negotiable and therefore privileges to be magnanimously granted by someone who feels like being nice to the cripples because we are not worth the same as you. Because you don’t see people who are not disabled having their legs chopped off because they take up too much room. Because the idea of taking away someone’s legs – either by amputation or chemically rendering them inoperable – is ludicrous and unthinkable. Except not when you’re one of us. When you’re one of us, you are hobbled in the same way they hobbled slaves, except there is no need to chop off the end of a foot or cut the Achilles tendon. No need, because it is as easy as saying “we don’t want your wheelchair here”.