Portrait of a Real Girl

It started with a school portrait.

Like many school districts, Schuyler’s school hired a photographer who requires parents to pay for a photo package before the photo is even taken, much less before we get a chance to see a proof. This feels like a scam to me, especially after working for a few years as a freelance photographer and seeing firsthand exactly how ridiculous the profit margin can be for a studio. But they ensure that profit by making you prepay, and it must be a pretty smart move since I’m as distrustful and curmudgeonly as they come, and I ponied up for a photo package like a chump.

The photo came home this week, and yeah. Schuyler has had some questionable school portraits, but this one was unusually scary. Her eyes were doing something strange and asymmetrical. Her mouth was pinched up like she was eating a lemon. And she had pushed her hair back over her ears in a way that resulted in these weird little wings.

It could have been worse; it wasn’t actually a terrible photo. But it didn’t look like Schuyler much at all, so much so that Julie wondered if perhaps she’d had a seizure. I didn’t think so; Schuyler didn’t appear vacant or distressed like she does when she’s post-ictal. But she looked odd, which made it a bad photo.

Schuyler and I talked about the photo, which she actually liked (although mostly because she was making a funny face and was amused by that), and I wrote about it on Twitter. I didn’t pull any punches, either about how I reacted to the photo or how Schuyler felt about it.

The tweet came almost immediately.

“ur a f***ing a******. If she likes the foto then fine. My kid is nonverbal PDD. wish she could tell me she even f***ing liked her pic.”

That little bit of “disability olympics” was just the opening salvo, too. This person sent tweet after tweet, each one fouler than the last, all telling me how I was mocking my child, that I was trashing her pride in her photo, and that I was as a result representative of several on a list of graphic insults, ranging from one particular body part (complete with a repeated hashtag identifying such) to someone who commits a very specific act to another very specific body part. She didn’t just eschew the high road; she dug a tunnel under the low road and built a subway system. It was remarkable, especially after she inexplicably changed her tune to post her phone number so we could talk about it. Well. I didn’t see that one coming.

(I declined to make that phone call. I’m such a pill.)

It wasn’t upsetting, but it did highlight something that I see frequently, both directed my way and at other special needs parents who write about their lives with their children. It’s the idea that Schuyler’s interactions with me must be devoid of complexity, that her needs and desires and opinions are those of a simple caricature, and that I, as her father, am either too clueless to see this or too cruel to care.

Schuyler’s intent isn’t discernible, so a random internet person feels free to fill that space with her worst assumptions. My daughter ceases to be a person and becomes a blank canvas, waiting to be filled with whatever the person wants to express. Schuyler’s not a person. She’s an opportunity. And in that respect, she is like every kid with a disability whose parents write about them and their situation. Our kids don’t receive the benefit of the doubt; they’re not assumed to be complex human beings with their own thoughts and feelings and desires. They’re objects of pity.

Except they’re not.

I’ve never been one to sugarcoat things, either when I’m writing about Schuyler or (more importantly) when I’m talking to her. At one point, the poster challenged me to read our tweets to Schuyler. I called her over to the computer and did so, giving her the cleaned up for television version. Then I asked her if she wanted to respond for herself. She laughed and sat down at the computer.

“My picture is funny and cool! my daddy is so awesome! don”t be mean to my daddy or you are a BUTTHEAD!”

Schuyler isn’t a delicate flower, and she’s not a victim of her condition. She’s a complex, opinionated and funny kid who can (and frequently does) laugh at herself. She’s not who she is because of her condition, but neither is she this complicated and cool person despite it. To treat her and kids like her as if they are causes rather than people is to diminish them, deeply.

And she’s as fiercely protective of her father as I am of her. She knows a butthead when she sees one.

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Please visit Build-A-Bear Workshop’s blog, where site co-founder shares her daughter’s story a well as facilitates a traveling bear who visits special needs families around the world!