Act Your…What?

“You don’t act like a disabled person.” Um, not sure what you mean. “You need to start acting like a person with a disability.” Yeah, that didn’t clear anything up. Can you be more specific? “The way you are, the way you act, the way you live. That’s not how someone with your condition should act.”

How should someone with “my condition” act? Curl up in the fetal position and sob. Tear off my clothes and throw ash over my head. Sit quietly in a corner until death graces me with its presence. Rue the day I was born with a clenched fist. Damn you! Grr.

“No, just not this!”

Yes, this was a real conversation with a (cough) well-meaning individual. It wasn’t the first time someone said this to me and (dramatic sigh) it won’t be the last. The first time? I was around 7-8 years old, and a teacher wouldn’t let me play with the other kids because someone “With my condition” wasn’t supposed to have fun. Maybe I was supposed to sit quietly and contemplate the meaninglessness of life? I don’t know.

As often as it happens I’m no closer to clarity. If my body doesn’t work then I don’t deserve, or need, to live a full, happy, life? Is that what they’re saying? Why would I’d want to, I don’t know, fall in love, go out to dinner with friends, laugh until I almost pee myself? How about dreams, hopes, aspirations? All the silly little things that “normal” people enjoy. Don’t I deserve that too?

Act like a person with a disability. Huh. There’s a thinker for ya. 

I blame the media! Okay, I don’t, that’s just silly. Sure, we’re portrayed as one-dimensional caricatures. Frozen in a moment. A singular identity without the possibility or need to be something more. We’re a plot point used for sympathy or inspiration. A real person with needs, desires, and hopes that have nothing to do with what our bodies will or will not do? Perish the thought.

If all you’ve ever seen is a fictional representation then the ignorance is understandable. Ignorance can be remedied so let me help you out: We’re real people. Our illnesses, our disabilities, are simply one small part of a much larger identity.

We love as you love.

We hope as you hope.

We dream as you dream.

I’m just like you except I walk a little bit funny and have to take medications twice a day. Maybe I have more scars on my body. There are days when I get tired faster than you. I take my vacation in hospitals instead of tropical islands. But all these things? They’re nothing but a drop of paint on a vast mural.

Who you are isn’t defined by your ability to run a minute mile. Your identity isn’t wrapped up in your pretty faces. How often you call in sick or how many cups of coffee you drink won’t be the only line in your biography. I’m willing to bet it won’t be a footnote because you’re more than all of that and so are we.

But sometimes the problem runs deeper than ignorance. There are times when my illness makes people uncomfortable. Why? Maybe I remind them how fragile the human body is? Do they see their mortality reflected in my disease? Is it something else?

I’m honestly asking! I don’t know. Why does my illness make you so uncomfortable? You can’t catch it. Kidney disease isn’t like the flu. It isn’t a virus traveling on a sneeze. You’re safe. It doesn’t rub off. I’m not a scratch and sniff sticker. You’re all good, I promise.

Is the problem the disease, the disability, or is it me? Ah, but there it is! I’m a puzzle. A riddle. I straddle the line between what is and what you think things are or should be. I’m not a portrait. I’m an abstract painting.

Sometimes I look sick. Sometimes I don’t. 

Sometimes I limp. Sometimes I don’t.

Sometimes you can tell I have an illness and sometimes you can’t.

If I fit in a box with a shiny label then you’d know. Something universal that defines who I am. A pretty little package all neat and tidy. Would that make it easier for you? Would that make you more comfortable? 

Well, you’re going to have to get comfortable with being uncomfortable. 

I’m not here for you. I’m not here to make you comfortable. I’m not here to fit in your picture frames or sit in that pretty little box. Is that callous? Maybe. I would apologize, the Canadian in me is screaming sorry, but I won’t because this is something we all need to hear.

Their limited imagination doesn’t get to limit your life. That power isn’t theirs. No matter how uncomfortable they are, you don’t have to give them that power. We define who we are. We decide how we live our lives. That power is ours alone.

Since I am a good Canuck, I will give you an apology: I’m sorry you’re uncomfortable, but you need to understand that we’re more than our illnesses and disabilities. Our value isn’t physical. Our worth isn’t measurable. Our identities aren’t wrapped in a pretty little package. Our power isn’t for sale, and it’s not a door prize at the fair. No one defines us except us.