In a couple of weeks, I’ll be flying to Memphis to give the keynote address at the 43rd Annual Mid-South Conference on Communicative Disorders.
I always enjoy speaking at events like this one, but this is going to be one of the better ones, for the simple fact that Schuyler will be accompanying me.
Schuyler is an excellent travel friend. A couple of years ago, we actually drove from Dallas to Auburn, and while I certainly became a little googly-eyed by the end of the trip, Schuyler was fresh and happy and full of adventure the entire time. She’s never lost her taste for flying, and she’s patient and accommodating in the security line, even when TSA agents treat her like a carry-on pet or an minion of al Qaeda when they realize she can’t speak in a way that they can easily understand. I never fail to have a good time on the road when Schuyler is with me, and I always feel her absence keenly when I’m speaking about her life and experiences without her at my side.
The primary reason I love bringing Schuyler to conferences like this, however, is to watch her interact with other people who use assistive technology to move through the world. This is especially true when she meets adult AAC users. Schuyler doesn’t have many real-world examples to show her how she might navigate the future, and so it’s probably just as hard for her to visualize as it is for us. The examples she observes every day are neurotypical students, and they provide a model for her that is both tantalizing and unreasonable. She doesn’t see the unreasonable part of the equation, so she tries to pass as neurotypical, which breaks my heart. So much of her disability is invisible, enough to get her in the door. But even if she passes ninety percent of the time (and that would be a generous estimate), it’s that last ten percent that gets her walked back to the door.
Schuyler needs better models, but her school district has doubled down on total inclusion, which means that she’s one of a handful of kids with disabilities even a little like her own at her school. It’s hard to know whether this is a good thing or not. It’s complicated. I sometimes feel like the special education environment might be setting her up for a future shock, when suddenly she’s out in the grand rough world without that safety zone around her. I’d love to think she could live with some degree of independence in a world that values her difference and takes some measure of responsibility for helping her find success, rather than just discarding her as an imperfect and noncontributing member of society. I’d love that. Perhaps I should wish for a pony while I’m at it.
So Schuyler learns to pass, and I try to show her that she doesn’t need to while at the same time helping her to construct this Potemkin village of outward normalcy as best as I can. It’s complicated; I feel guilt when I assist her in building the mask, but I also sometimes wonder if by encouraging her to embrace her difference I’m not setting her on a path that, better or not, may very well contain more pain, more disappointment. Schuyler’s own wishes are much clearer; she wants to be like everyone else. She all too frequently expresses the heartbreaking sentiment that she wants to talk like everyone else. When we do her homework or study for her tests, especially for the mainstream classes she attends, I can feel her frustration at not quite getting the things that she must be aware come so easily to her neurotypical classmates.
When we go to Memphis and Schuyler finds herself immersed in a world where no one looks at her with questions in their eyes, when she finds herself among her people in the most intimate way one can BE a tribe, she won’t have to pass, and I won’t have to wonder if I’m doing the right thing. Bringing her to events like these are always the right thing to do, and as she gets older, I hope she begins to see what that future might just look like. One where she doesn’t have to pass. One where she doesn’t have to try to be invisible. A future where she can simply be who she is.
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