November 18, 2009
From the margins
Schuyler's particular affliction, Bilateral Perisylvian Polymicrogyria (PMG), isn't a disease. It's a condition, a congenital malformation of her brain. From this condition spring the symptoms and the disorders and the disabilities that kids with PMG experience, such as epilepsy and apraxia. It's a subtle distinction, and one that is honestly sort of meaningless in the big scheme of things, but it does mean that families dealing with polymicrogyria are also dealing with these other disorders individually. To a parent whose child is being tormented by seizures, epilepsy is a more immediate concern than polymicrogyria. Sometimes the monster's claws loom larger than the monster itself.
So we signed up, raised some money (and thank you to everyone who contributed!), and on a perfect Sunday afternoon, we all met in a park and did this thing. We showed up, freaky non-barking pug in tow (and how perfect was it, bringing our non-verbal dog to an apraxia of speech event?), and I think everyone had a fantastic time. I got to meet some people who'd read the book and have some very meaningful conversations about it, and most of all, we got to spend time with families who are, in one way or another, in the same boat with us.
There were two groups who stood out in my mind at this event, both of whom represent a crucial part of the disability community and have their own unique set of concerns, and yet are both deeply marginalized in typical discussions of disability parenting.
Unless childhood apraxia of speech accompanies other conditions with more obvious manifestations, many of these kids, like Schuyler, can pass, at least at first glance, as neurotypical kids. Indeed, in watching them play together on Sunday, it was hard to tell which kids were apraxic and which were siblings or otherwise unaffected family or friends. Obviously, this is a double-edged sword. It's a good thing, mostly. These are kids who have one major social obstacle removed from their path, that gut-level negative reaction to someone who appears different or broken. It's that thing that lives in our lizard brain, the caveman instinct that says to flee the afflicted lest you yourself suffer the same fate. Any parent of a child with an outwardly obvious disability can tell you how horrible that reaction can be, even from the most well-intentioned. It's a bullet that Schuyler has largely dodged, and for that I am entirely grateful.
But at the same time, there is another look, another reaction, one that has its own sting. It's the one that parents of kids with autism are often the most familiar with, the one that is stripped of sympathy because your child looks, and here's that word, normal. Your child doesn't have outward signs of their disability, no physical malformations, no tics, no spasms or limps, no prosthetics, no flags that say "Tread carefully here". They appear instead to be children who act out, who choose not to communicate or to interact socially in a way deemed appropriate. Their parents are asked why they can't control their kids. I still remember the surly woman who berated Schuyler for "mocking" her questions with her nonsensical babbling.
It's not a worse problem, and in about a hundred different ways it's the one I'd pick if given a choice between the two possibilities. (What wouldn't I give for that third choice?) But it's real nonetheless, and watching Schuyler play with these kids on Sunday and knowing that anyone walking past would see nothing out of the ordinary, I was struck once again by the largely unrecognized thing that those of us with nonverbal or autistic or otherwise neurologically atypical kids want from the rest of you, the recognition that this IS hard. Sometimes we're not looking for answers or prayers or Holland poems or "turn that frown upside down" inspiration. Sometimes, all we want is for someone to recognize the situation for what it is. Sometimes, all we'd like to hear is "Fuck, that's hard."
It's hard for families, and most of all, it's hard for these kids. They want to be "normal", and appearing so doesn't change that. Looking like a real boy wasn't much consolation to Pinocchio.
The other group I saw in greater numbers than usual at the event was fathers. A lot has been made of the fact that mothers comprise the majority of disability caregivers, and for every blog and book out there dealing with fathers of disabled kids, there are many more from the perspective of mothers. The numbers are what they are. I won't try to pretend otherwise.
But I think it's time to start examining some of the underlying reasons that this inequality continues, something beyond "Guys are jerks." Lately, I've had the opportunity to meet some amazing fathers. I spoke on a panel at the Texas Book Festival with two other authors, fathers whose involvement with their children's care was extraordinary and moving. I had lunch recently with a father looking for advice on his own manuscript, a deeply personal look at his experience with a child with autism. And at the Apraxia Walk, I met fathers whose commitment to their kids is unshakable and which should be unquestionable.
When fathers like these come up against a society that expects them to fail their children and which doesn't even bother to make a place at the table for them, they feel marginalized. WE feel marginalized, I should say, because years of loud-mouthed advocacy and publication of a book hasn't changed the fact that I still have to insist on that spot in the discussion, too. For fathers less aggressive and narcissistic than me, the path of least resistance beckons.
I understand that every one of the "special needs moms" websites and books out there has a right to exist and speak to the particular issues faced by mothers of broken children. But I also wonder how many of those particularly "mother" pressures would be eased if we started to make that place for fathers to feel like they are part of the discussion. Because everyone time a writer couches the struggles of families of disability in the guise of "mothers' issues", they are instantly excluding some of the voices that matter the most.
Not all of the discrimination in the disability world comes from outside. Not all the erroneous assumptions are made by people who don't, or shouldn't, know better.