30 August 2012

Privilege: Intent is not unicorn farts

Apparently this needs to be said. Heads up, because this is a long one.

Let me start off by saying that I am glad that there are still people with disabilities who have the privilege to have not experienced the ableist shaming that is "disabled inspirational stories."

Let me further say that there is nothing wrong with finding a person's story inspirational. Many people have done amazing things and I think the effort and results should be cause for celebration.

Here's the problem, though. The way some people (okay, most people) on the planet phrase these stories makes a world of difference.

Let's take a hypothetical awesome person. We'll call this person Joe, to save me some keystrokes.

Joe has done some awesome things, like climbing mountains and getting a masters degree. Joe is working on his doctorate, and he discovers some field changing information while doing his research. For the sake of hyperbole, let's say Joe discovers the cure for colon cancer.

Joe is a pretty awesome dude, right? I mean, he's smart, he's athletic...

Now let's pretend that Joe lost his left leg in a car crash when he was 10 years old.

Did your perception of Joe change? How? Do you see him as someone to be pitied? Do you feel that Joe needs to be protected more? Do you feel that Joe might not deserve all the credit for his accomplishments? Do you feel that Joe might have gotten special treatment? Do you think that Joe lives a miserable life? What do you now feel about Joe?

And how do you think the world is going to phrase this story?

I am willing to bet that every major news organization--CNN, Fox, NBC, ABC, CBS, AP, etc.--will report it as a "disabled person" who did something miraculous.

Forget all of Joe's accomplishments. Forget that he's smart. Forget that he's athletic. The news item will be that Joe is disabled and he did something.

And the news organizations won't interview him as much as they would his friends and family. "What was it like when Joe lost his leg?" "How did you deal with such a loss as a parent?" "What's it like having a disabled friend who is so inspiring?"

Does anyone see the problem?

Joe found a cure for a terrible disease. Joe made this discovery--not his parents, not his friends. Joe did something amazing because he is an amazing person, not because he is disabled. It doesn't mean jack that he lost a leg in this context.

So when people write about Joe and title it with things like "Cripple discovers cure" or post things on their facebook with comments like "F legs!", these people are missing the point. Entirely.

And you know what, you're probably making every other single person with a disability feel like crap.

"But it's not my intent to miss the point or make other people feel terrible! I am inspired that someone like Joe could overcome obstacles and do something amazing!"

What is the point, exactly? That a human being, yes a human, just like you, did something amazing. That amazing thing is inspirational. That human being didn't do it in spite of a disability. They didn't miraculously gain super powers by being a person with disability (by the way, screw you comics and super hero tropes). The point is that if you feel so inclined to be inspired, it should be because people are amazing and do amazing things, not because of something you see as an inferior quality that they happened to "overcome".

And you know what? Intent is not magic. It's not unicorn farts. It's not rainbows or candy. And it's not the point.

It doesn't matter if you didn't intend to objectify Joe. It doesn't matter if you didn't intend to upset people with disabilities. The fact of the matter is that you did.

The fact of the matter is people like me, and myself, get bombarded with this crap. All. The. Time. Sometimes we're the object being propped up, and that is incredibly awkward. Sometimes we're the ones being sent the news articles.

I don't want to be propped up for something because I am a person with disabilities. I want to be acknowledged for my accomplishments because the accomplishments are amazing, not how I accomplished them or what I had to overcome.

So what's the appropriate response if you're called out because your privilege is showing? Stop. Take a deep breath. Listen to what we are saying. Just because it hasn't happened to you, just because you don't see it, doesn't mean it doesn't happen and doesn't mean that we are wrong. It just means that we have experienced this crap, and we're trying to ask you to knock it off.

15 August 2012

Pancreas Job Interview

This post is my August entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/august-dsma-blog-carnival-2/

So, here's the situation. There's this dream job, filled with unicorns and cupcakes and glitter-perfect for any member of the DOC.

You sit down for the interview, and it's totally going awesome. You're witty and charming, and you pretty much have this job in the bag. Until...

That's right. They ask you a question that would make a unicorn poop rotten cupcakes.

"So, how are those beta cells? Are they good workers?"*

Noooooo!!! Pancreas! Don't answer! Let the brain answer! It'll pull this off! It can do it!

Truth be told, my pancreas is a delinquent, and it's taking all my other organs with it (or at least it's trying). It hasn't shown up for "real work" in 10 years. I think it's gone on vacation to Hawaii or the Bahamas. It could have at least called, maybe sent a postcard or a few trinkets.

The beta cells died in what I hope was a glorious battle. I hope there was an epic death scene ("Don't die on me Johnson! Don't you dare!"), a glorious romance ("Roger, my love!"), and some wicked weapons. I mean, that's half the awesome of any battle movie, right? "Oh! Look at that gun!" "Oh! That cannon is so awesome!"

But in the end, the immune system massacred those poor beta cells. That ruthless immune system brought the firepower equivalent of a nuke to a sad little group of cells that had the equivalent of a pitch fork.

Well, I hope the immune system is happy. I mean...wait...

What was the question?

Aw, crap.

*I know this question could never be asked in a real job interview, and I'm not entirely sure how anyone would ask without sounding like the most awkward person in the world, minus your doctor.