Welcome to the Club

One of the constants I’ve experienced since I began blogging about life with Schuyler and her monster, particularly since the publication of my book, has been the receipt of emails from parents who are recent inductees into the world of disability.  Specifically, I hear from many parents whose children have been diagnosed with some form of polymicrogyria (PMG).  They go to the internet with their fear and their shock, and after they read through the “scary boo” and the “what does this stuff even mean?” and the “here’s your worst case scenario, now go crap your pants with fear” pages, at some point they find my book, or my blog.  Or they simply find Schuyler, who is a better representative and a finer beacon of hope than I could ever be, even if I were trying to be either, which I certainly am not.

All these years later, I can clearly remember the day of Schuyler’s diagnosis.  It was the summer of 2003; she was three years old.  I remember sitting in the dark in Schuyler’s pediatrician’s office at Yale, listening to her neurologist describe this thing, this malformation in my sweet little girl’s brain, so monstrous and dangerous and real and visible.  There it was on the light board.  We were looking at it.

“I know when you get home, the first thing you’re going to do is go online and look this up,” the neurologist said.  “I just want you to be ready.  It’s going to be pretty rough.”

It was, too.  It was rough because the very little information that we found was very clinical and of course listed the total spread of ominous possibilities.  Polymicrogyria wasn’t just a developmental issue.  Schuyler’s brain wasn’t just mysterious or neurologically diverse or wired differently.  PMG described a brain that was broken, a brain that in which specific areas were malformed, where specific and vital functions were impaired or nonfunctional.  We went from theories and even a PDD-NOS misdiagnosis to an MRI photograph.  Schuyler’s monster had a name, and it had an unsmiling face looking back at us.

That’s what the internet gave us when we went looking for polymicrogyria.  A few months later, someone searching for information on PMG might find, among all the implacable medicalese, my online journal.  It had almost no useful information.  It simply expressed the anxiety and the frustration of having this label and this fixture pinned onto the little girl whom I loved with my whole heart.  A year or two later, that new PMG parent’s Google search would turn up online support groups and mailing lists for families of kids with neurological disorders closely related, like polymicrogyia and lissencephaly and microcephaly.  A few years later, they might find an article about Schuyler in connection to my book.  They might also find dates and locations for conferences, opportunities to speak to doctors and specialists and fancy pants authors.  And, most dear of all, chances to meet other families like theirs.

Communities develop like this.  They grow organically, like tiny fish who find each other and begin to school together, sensing that there is safety in numbers and that fear grows most energetically in darkness and solitude.  Individuals find similar others, and we cluster into groups, and those groups grow into tribes.  Mostly leaderless, and usually without an agenda, at least not one that is much more complicated than just “Oh my god, I thought we were the only ones…”, but strong in their common cause, the deepest cause that a parent can hold dear.

I hear from these parents, the ones who have been pulled into our little club without so much as a membership ceremony or a secret handshake.  I try to give them my own perspective, with the caveat that it is mine and mine alone.

It has been eight years since Schuyler was diagnosed with congenital bilateral perisylvian syndrome, long enough that the disorder has actually undergone a name change, to bilateral perisylvian polymicrogyria.  In those years, I tell new parents, I’ve seen how strong community can be, how much strength it can provide to families with questions and anxieties, and occasionally how much comfort it can give those who have endured the unthinkable loss of their kids.  I’ve gotten to watch and participate as two pretty distinct communities of Schuyler’s, the neurological disorders community and the assistive technology community, have grown and developed and served their citizens.

I tell these new parents that I’ve seen failures, too.  I’ve watched as some of these disability community tribes have tried to exclusively possess their causes, and have turned on others and even on themselves.  I’ve watched adults with disabilities be ignored because their agendas don’t fit easily with the concepts of professionals and parents and educators.  I’ve watched as parents are perhaps predictably minimized and ignored by teachers and by medical professionals, but I’ve also seen us demonized, belittled and silenced by members of communities with who we might have been natural allies.  We’ve been accused of stifling the perspectives of others even as we have been systematically silenced and disregarded through the use of language politics, a kind of “ableist bingo” where anything we say is identified as poisonous privilege and then casually disregarded.  “When you say X, what you mean is Y.”  I’ve seen disability advocacy groups strive so hard to position themselves as authoritative and to seize control of some metaphorical megaphone that they no longer primarily serve a larger disability community so much as their own brand.  I’ve watched as advocates for more well-heeled tribes suck the oxygen from the room and then chide the rest of us for gasping too loudly.  I’ve watched disability-related communities eat themselves, saving the outside world much of the trouble.

The disability community is fraught with dissent, I tell my new fellow club members.  And while that should be fine, it often isn’t.  I warn them that it’s an ugly world they’ve landed on, and only most of the monsters they’ll be fighting will come from outside the castle walls.

There is some advice I would give to anyone who is new to the world of disability, whether it is a parent whose child just received that diagnosis, or a young person whose lifelong questions have suddenly been accompanied by a new label, or a teacher suddenly faced with a student for whom none of their training or experience is adequate.

I would tell them that yes, they should strive for a larger global community, one that can affect real societal and political change.  They should put their energy into those causes.  They should put their sweat and their muscle into shaping the world to create a space for their children and their students and their very own selves.

But I would also tell them that most of all, they should very carefully save their hearts for their tribes, for the friends they’ve made along the way, for the families they’ve met and the good teachers they’ve found and the medical professionals who have truly understood how to reach their children and themselves.  And for parents most of all, they should pour their hearts into the work they do for their children, and should let that heart work build a path to a future that is more than just independent, but one that is full of real relationships and happiness, free of bitterness.

It is from these heart tribes that authentic community can grow.  It is from these places of commonality, not from opportunism or vindictiveness or “I got mine, now you go get yours”.  It’s easy to confuse building walls for building worlds.  But you’ll know the difference.