To say I “fangirled” would be an understatement. I was all, whaaaaat?! CHYEAH! I LOVE THEM! They shared my stupid blog post?! They called it a “fabulous satire”?! BRB GONNA DIE OF HAPPINESS NOW!!!!
(I’ve noticed that two things make me downright giddy, by the way — eating sushi, and being syndicated by a respectable publication. In the past month, my blog posts have been picked up by the Huffington Post (twice!!!), The Mighty, and MamaHealth. Someday I’ll write a piece for the New York Times and I’ll be scarfing down a big-ass Firecracker Roll as it goes live. That’s the world I want to live in.)
I have a vice, though. I gotta admit. I read the comments when my articles are shared, in whatever context. Twitter, Facebook, Pinterest. I really want to not do this, but I’m half-curious and half-thinking that it might be a good idea to read some constructive criticism (ha). Anyway. I’ve read a fair share of snarky comments about my writing, and it doesn’t bother me. But one comment last night, on the blog post that Sociological Imaged shared — it bothered me.
“I smell an agenda here,” someone said.
I don’t know why it bothered me. But she was absolutely correct. I do have an agenda.
First on my agenda is to write, because I like writing. I try not to do it and it doesn’t work. I just keep coming back to the keyboard. Two years ago I gave in. Fuck it. I’ll write because I can’t not write. And whoever wants to join me is welcome to.
But my other agenda? I want to change the way we talk about disability in this culture.
I am not an expert on sociology, or language, or (least of all) people with special needs. All I know is that every day since we learned Henry would have spina bifida, we were conditioned to think the worst about his diagnosis. We were advised to terminate, by more than one person, seemingly because a life with spina bifida is so terrible that it’s better to not live it at all. Can you comprehend that? There is such a disconnect between the beautiful children I see who happen to have a disability, and the sorry, deformed, faceless nobodies that our culture makes them out to be. And the disconnect didn’t hit me — not really — until right after Henry was born.
I was holding him, actually, when I got the phone call. It was a nurse from some county office, wanting to let us know that, because of Henry’s condition, we qualified for food stamps and other assistance (which we declined).
“I’m calling,” she said, her voice dripping with sympathy, “because we hear you’ve had an adverse birth outcome.”
What? I thought. He died? And then I realized she was talking about Henry. What the shit? I mean, he’s got some issues, sure. But adverse? A “birth outcome”?
The thing about defining moments is that you don’t really realize they’re defining at the time. My response wasn’t one of righteous indignation. I didn’t deliver some Sorkin-esque speech. I said “Wow. Uh, no?” And then I laughed. Because it was ridiculous. I wasn’t mad, don’t get me wrong — I’m sure she was a very nice woman who was tasked with having a very uncomfortable conversation with a hormonal, post-partum stranger. I get that. But damn if what she said didn’t knock my socks off. So that’s how you see them, I realized. That’s how you see my baby.
Let’s stop with all the bullshiz. People with disabilities are people. They aren’t inspirations or heroes, necessarily, but they aren’t outcomes either. They’re endowed by our Creator with human dignity, by virtue of their status as human beings.
Yes, we should keep them. We should cherish them. We should change the way we think about them, and the way we talk about them. That’s my agenda. That’s where I’m going. And whoever wants to come along is welcome to.