January 10, 2011
Over the weekend, before the Wall of Wintery Death descended on North Texas (it is admittedly a short wall, but still), Schuyler asked me to take pictures of her. In eleven years on this planet, I do think this might actually be the first time she's ever done this. I've taken literally thousands of photographs of Schuyler, but her attitude toward me and my camera have always been ambivalent at best. One day she'll learn how to get a restraining order against me, and that will be that.
But this weekend, she wanted me to take photographs of her, and she had a very specific look that she wanted to capture, including the green wig resulting from her love of a character in the movie Scott Pilgrim vs. The World and the fingerless skater gloves that have become an indispensable part of her wardrobe. This was the look she wanted to capture, and I'll be damned if she didn't look awesome. Rather odd, and rather cool.
Schuyler had to make a college logo banner for school, for an assignment tying in with "College Week". (I'd make a remark about Plano parents already worrying about college for their fifth graders, except I suspect that is now the norm everywhere. Back in the day, I started worrying about college about halfway through my senior year, but that was probably a lack of planning and ambition all my own.) Schuyler hasn't had much interest in college, aside from the campuses where she has appeared for conferences like Vanderbilt and Auburn, so we had to explain some possibilities to her.
She eventually chose Yale ("because they helped me with my brain"), but she also decided, out of nowhere, that she wanted to go to school in China, because "it would be fun!" It was hard to argue with her logic, and she never wavered from this great idea, even after I told her that she might end up working in a factory making plastic Spongebobs for Happy Meals. She is immune to my cynicism.
Schuyler is building a very interesting and diverse self-image, one that emerges in her art and her stories and, I think most of all, in the dreams that she describes to us. It is, as it has been from the beginning, a view of herself constructed equally out of parts of this world and her own. We have a game we play now sometimes called "Real or Pretend", where I name something and she tells me whether it's real or imaginary, and her answers are surprisingly pragmatic. I was surprised to hear "pretend" when I mentioned mermaids and dragons and zombies and vampires (four of her favorites). She was delighted to learn that dinosaurs WEREN'T pretend, except when they are shown walking around in the modern world. But some of her answers were exactly what I expected, and secretly hoped for. Santa is real. Fairies are real. King Kong is definitely real.
The piece that fascinates me the most is how Schuyler incorporates her disability into her self-image. She's always identified with Ariel from The Little Mermaid, perhaps unsurprisingly; when asked why she loves this character so much, Schuyler touches her throat and then mimes the throwing away of her voice. But it's hard to know sometimes how much she wants to acknowledge her monster. She's reached a stage in her life when she doesn't want to use her speech device any more than she absolutely needs to, and when she does, she often insists on spelling out her words rather than using the icon sets.
But then she'll surprise us. The other day, while walking through a store, Schuyler saw a piece of pop art that she insisted she wanted for her room. When asked why, she mimed her wordlessness again. The art wasn't about being unable to speak. It wasn't an artistic treatise on mutism, not at all. But that was how Schuyler interpreted it, and now that it's hanging in her room, she goes back to look at it over and over. She seems very pleased with it, and with her own interpretation of its significance.
Schuyler is smart enough, and pragmatic enough, to understand that her disability is an integral part of who she is, and every now and then, she takes total ownership over it. But like everything else, she does it with style. Her own weird, wonderful style.