Schuyler and I had an interesting conversation the other day. It was interesting to me, anyway, mostly because it was a topic I’ve read and listened to and participated in many times over the years, but I don’t think it was one she and I ever really had before. I find that the older Schuyler gets, the more we talk about the issues of advocacy that affect her directly but which she hasn’t really understood in the past. I almost feel relief, finally being able to discuss things with her that have been on the table and on my mind for so long.
This conversation, spurred by something we’d been listening to on the radio, touched on the idea of acceptance versus the impulse to “fix” the issues brought on by disability. It’s a discussion that has been going on in the disability community with varying degrees of emotion in recent years. The topic has been a matter of some controversy (surprise) and has formed the core behind the neurodiversity movement, to give just one example. I think it’s true that a lot of how you feel about the topic depends on the specific disability you’re coming at it from. For Schuyler, and for myself, it’s been a mixed bag.
As Schuyler herself pointed out (which made me incredibly proud), she walks a careful line between the two approaches. She knows now, for example, that it is extremely unlikely that her verbal speech is going to ever come to her, not with any really meaningful change. That’s a level of acceptance that has been a very long time coming, and I don’t imagine she’s quite finished wishing on the first star of the evening for the ability to talk “like everyone else”, as she puts it.
But Schuyler’s acceptance of her broken speech is tempered by a few things. First, she powers through the difficulties to make herself understood verbally, and in fact (and this might surprise you) when she’s at home with us, Schuyler almost never uses her speech software. In fact, when she’s with people who know her pretty well in general, she only really uses it when she’s unable to communicate successfully.
For years, as a fierce proponent of the “fix it” school, I tried to guide Schuyler to a place where she would consider her speech prosthesis to be her primary voice. Her speech was a problem, and it had a solution. I don’t regret that approach, not at all. It was appropriate for what we knew at the time and the level of understanding that we had, not just of Schuyler’s extreme speech problem, but also of the options for her to move through the world. Schuyler had some sign language, she had perfectly typical hearing, and she had advanced software and cutting edge tablet technology. She had a voice, if only she would use it.
Years later now, I can see how it was anything but simple for her. I recognize that the drive to be like everyone else, and even the need to pass as nuerotypical and unimpaired, was incredibly strong in Schuyler. I’m glad we pushed her as hard as we did, because when she finds herself in need, in a public place where she requires something and no one around her has developed that very special ear for Schuylerese, she has a backup. Schuyler is a skillful speech synthesis user, but at sixteen, she has firmly established that it is very much her secondary mode of communication.
That level of acceptance, with an asterisk noting that in case of emergency, break out the iPad, is a choice that Schuyler makes, and one that she makes consciously. I fought it for years, and I still do on occasion, but I’m beginning to make peace with her special hybrid of acceptance and innovation. She’s finding her comfort level with it, and while I suspect leaving school and venturing deeper into the real world will drive her to use electronic communication a little more, I’m coming to accept that she will always love the sound of her own voice more than anything her iPad can produce, even with its crisp British accent.
(We’re still waiting for AAC developers to release a synthetic voice with a Texas accent. Seriously, y’all. Needs to happen.)
When I was younger and more earnest, I wanted the fixes. I’m older and spiritually winded now, and I’m faced with the strong will of a daughter who’s stretching her wings and exploring her own choices. When we talked about the idea of acceptance, and of looking for peace rather than solutions, Schuyler understood that. She’s still not done trying to reshuffle the deck, though. And as hard to read as the future is right now, I don’t expect that to change even a little.
Schuyler’s a bit of a stubborn pain in the ass. I have absolutely no idea where she gets that.
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