The afternoon that Schuyler was finally diagnosed with polymicrogyria, her neurologist warned us. “I know when you get home, the first thing you’re going to do is go online and look this up,” she said. “I just want you to be ready. It’s going to be pretty rough.” She wasn’t kidding. At that time, the only information online was very clinical. Most of it was written in that horrible medical moon-man language, but the parts that were comprehensible were very scary boo. Worst case scenarios, mostly.
If Schuyler had been diagnosed a few years later, I might have found the world to be a little more comforting, and informative. I would have found at least one support group LISTSERV, and a few years after that, I would have found groups for polymicrogyria families and groups for apraxia and other related neurological disorders on Facebook. Most of all, I would have discovered other parents sharing their experiences.
I would have found what would feel very much like community.
I can also remember, all too vividly, when I discovered how fragile that sense of community can be, and how quickly it could devolve into factionalism and tribalism. I learned how extreme the disability community can be, and how eager it can be to devour its own. How it’s often much less a community and much more a collection of interests, self-protective and nearsighted.
It’s a lesson that many of us discover, whether we are parents or family or persons with disabilities. We find that the idea of community means very different things to different people, and that it is much easier to insist on our positions and to shout down those with other perspectives, ones that we don’t share and therefore don’t value.
I remember when I learned that the disability community can be so insular, so walled off, so protective of its spot on a perceived high ground that it’s honestly not much of a community at all.
I’ve been watching that community eat itself again recently, although honestly, it’s never hard to find a fight. In the past year, I’ve retreated from that larger community, and have stayed away from the parts that don’t concern me or my daughter. If it were just me, that would be fine, I’d write it off as a product of my own bad personality or whatever. But when I talk to the friends I’ve made in that community, I find the same observation, the same retreat. And among both parents and persons with disabilities, I’ve found something very much like a commonality, small but real.
When enough people feel that they are alone again, alone in the midst of a large and diverse community that is hell bent on self-immolation, then I’m not sure that “community” is still the correct term to use.
But here’s the thing that has happened, for myself and others, and if I were advising parents who are new to this whole world, it’s the thing I would advise them to concentrate on. Even as I’ve discovered how isolating the larger disability community can be, I’ve found that the individual friends I’ve made have become stones on which I can build something. We’ve also found real lasting value in those communities that have very real connections to my own family, in our case those built around assistive communication technology and neurological conditions like polymicrogyria and microcephaly.
Mostly I’ve come to realize that the individual advocacy in which I engage on on my daughter’s behalf is the most important work I can set myself to. More than that, it is through that small advocacy that I can build something larger, something better and more lasting.
I once believed that a larger sense of community would benefit us all, that the rising tide raises all the boats, etc. I don’t think I believe that anymore, not entirely. The Internet makes it feel like there are a lot of us in the same boat, but perhaps it’s more like there are a great many little boats bobbing around in the same dark sea. And perhaps that’s the best we can hope for. Tend your little boat, and find the friends with whom you can tie onto for a time and help each other.
And remember that we really aren’t alone. Not entirely, and not in the ways that matter.
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