Most of all, accommodating the social integration challenges of assistive technology gives Schuyler and kids like her the possibility of a measure of independence and self-determination. Those are goals that are both persistent and tenuous. For Schuyler and her friends, self-advocacy is vital, but it flutters through their lives on gossamer wings. It's delicate, and it falls apart so easily.
Parents need to understand that their intimate relationship with their kid empowers them with a level of investment that can't be ignored and shouldn't be minimized. It's imperative that parents go in knowing what they need to know, and with a clear and sober understanding of their child's disability and what that might mean realistically. But in my opinion, parents also need to temper that with a philosophical open door. They need to overbelieve. They need to hold onto possibilities, because those possibilities have a funny way of turning into realities.
I think that any growth on my part must be because of Schuyler, because of her own giant trusting heart and her fierce, unconditional love for me, a love that I am desperate not to win, because I have it already and always have, but rather to deserve. Schuyler gets up every day and she moves into the universe like a storm front, and her success or her failure on any given day is almost beside the point. She perseveres because it's what she has to do to be in the world. And so I try to put myself together as a kinder and more humane person. A better person. The father she deserves.
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| Schuyler and me, at the time of her diagnosis |
It's easy to make fun of the A for effort, the trophy for participation, but the fact is, for Schuyler and countless kids just like her, those trophies are the ones that sit on their shelves. And they're not cheap tokens of faint praise, either. It's impossible to overestimate the hard work and perseverance those trophies represent to kids for whom participation alone is a triumph. That very real accomplishment is made possible by programs like the Special Olympics, or the Miracle League in which Schuyler plays soccer and baseball with other disabled kids, or the inclusive cheerleading squad at her middle school. Schuyler and her friends try so hard to fit into the world. In programs like these, they succeed.
It's one of the dirty secrets of assistive voice technology. There are a million good reasons to use it, and the innovations advance remarkably every day. But as one noted assistive tech innovator pointed out to me as we sat in an exhibition hall full of the latest technology, "Every piece of assistive tech equipment in this room says the same thing to the casual observer. It says 'I have a disability.'"
In recent years, I've found myself getting caught up in exactly how unprepared the world really is for our kids, and how ugly the result can be. It's easy to forget. It's easy to become so insulated in our everyday lives as parents and so infatuated with our own beautiful children that we forget that to much of the outside world, these kids are simply perceived as being... less.
"Then there's the real kind of invisibility, the kind familiar to the poor or the disadvantaged. And most of all, the invisibility of disability, which manifests itself in a million different ways: the school board meeting where money is allocated to high profile programs like athletics while special education fights for inadequate resources; public discourse on special needs issues in which persons with disabilities are excluded from the discussion; conversations about persons with disabilities, in which they are spoken about as if they're an abstraction, there but somehow not there."
"Like most special needs parents, when I spend time with the parents of neurotypical children, I become hyperaware of the differences."
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| Hello, Frida. |
