Every wheelie has an experience similar to the one I had today: I pushed open the door to the bathroom and began to wheel through it. A coworker was standing at the sinks, washing her hands. She looked up, a totally panicked expression on her face, and abandoned her hygiene to leap in front of me, completely blocking my entrance, and to grab the door -- the door I had just opened and was passing through easily and dare I say gracefully.
Because I have mad door opening and multitasking skills, I grabbed my wheel and prevented myself from crashing into her while at the same time keeping the door open.
She stood there for a minute, hands dripping, and then realized the weird predicament she'd put me in. She, embarrassed, let go of the door and stepped out of my path. I proceeded to the stall.
Thankfully, she let me take it from there.
On the face of it, this is a kind of funny story. Awkward moment, panicked coworker, wheelchair. Hilarity ensues.
And when I tell able-bodied friends stories like this, even when I try to make it light and funny to cover up my frustration, their response is nearly always the same: you have to understand they meant well. I've panicked and done the same thing! You just don't know what to do when you see a person in a wheelchair. Do you look away? Do you look at them? Do you offer to help? Will you be insulting them?
You have to understand, they tell me. You have to understand.
I leave these interactions and the follow-up conversations feeling bad. Why am I so angry? I think. The person meant well. They just freaked out when they saw me. Anyone would.
But then it occurred to me: people are telling me to understand that my very presence is so monstrous as to be panic-inducing. I am supposed to understand that just by existing, I send people into paroxysms of fear. Surely I, with my freakish freakish use of a scary scary chair on wheels, should understand that.
I mean, you don't run into disabled people every day, after all. Folks just aren't used to us.
But there's the rub: you SHOULD run into disabled people very day. We are, after all, one quarter of the population. However; our medical, employment, economic, and transportation systems all conspire to keep disabled people off the streets and skyways -- and to confine us to our homes, institutions, treatment centers.
Panicking when you see me forcibly reminds me of how hard society has worked to keep people like me away from 'normie' eyes. I am transgressing, just by daring to go to work for a living. Or enjoy the zoo with my family. Or buy groceries. And that's hard to take.
So please don't tell me that I 'have to understand' in situations like this. Here is what I would like you to understand: going through life in a chair or on crutches, I have the same experience again and again: people pull unconsciously away from me, a disgusted look on their faces, or get that bright, false panicked look of covering up their fear. Then they just lose all rationality with their panic and trip on me, get in my way, run half a block to open a door I am already opening, grab my chair's handles to push me, or merely giggle nervously at the very sight of me, trying not to stare.
It isn't all people. On good days, it's maybe a small handful.
But how would you feel if this happened to you every day, even if it were only a few times each day? Would you begin to feel monstrous? As if perhaps you are a dangerous, infected thing? Would you begin to feel you didn't belong -- not only in that bathroom, but to the whole of the human race?
And wouldn't you start to become . . . well, angry? Very, very angry, and alienated, and sad?
Well, I know I do.
So when something like this happens, and you tell me I "have to understand," you are telling me that I need to reach out to people who are cringing away. You are telling me it is totally natural for most people to view me as a terror-inducing life lesson, or simply a contagion to be avoided.
Well, I don't think it should be natural. And I will never agree to understand.