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Weird? How are we measuring “weird”? What does “weird” look like for someone like Schuyler? Or for anyone else? I mean, we spend weekends driving around looking for invisible monsters to catch with our phones. Our threshold for weird might not necessarily line up with the purveyors of this particular behavioral inventory.
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I’m not sure where I’m going with this post, because I’m not sure what the takeaway is. Schuyler had a good time, except when she very much didn’t. Her social anxiety only hit after her seizure, but boy did it land hard after that. She laughed hard most of the time, including once so enthusiastically that we literally heard her from the other side of the resort. But she also cried harder than I can really remember her crying for many years. She was probably happy 80% of the trip, but that other 20% had real teeth and claws. Schuyler adored the beach and looked hard for sea creatures on the sand. But in the end, it was a very familiar monster that found her.
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For Schuyler specifically, and for no doubt a great many of her peers, having the ability to pass for neurotypical in surface-level social interactions has probably given her an ambitious view of what her future could look like. If she can pass 75% of the time, that’s probably enough to convince her that she could take on a life of total independence. And that’s great, but it’s also a problem, because that other 25% is where heartbreak lives.
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Those of us raising our kids in public school environments have a pretty good idea of what de minimis really looked like in its worst case scenarios. We’ve subsisted on the scraps that fall from the educational table. For the Supreme Court to now compel public schools to give our kids the opportunity to make meaningful, substantial and “appropriately ambitious” progress? That has to potential to change our lives and the futures of our kids. We’ll deal with the private school tuition issue later. (Private schools mostly don’t want our kids anyway. That’s a very ugly truth.)
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So what do our kids need from an inclusive society, before we even consider their classroom environment? We could start with patience. And along with that, opportunity, in employment and independent living and carving out those places where my daughter Schuyler and people like her can develop their talents and use them. As a society, we’ve built this structure that values contribution, but in a very limited scope. “What do you do?” We hear that question and we know what it means. “How do you produce capital? How do you feed the machine?” And that’s not a very useful metric for people like Schuyler.
(From my SXSW panel remarks)
