The Invisibility of Exceptional Children
February 26, 2013
© Robert Rummel-Hudson
There are different flavors of invisibility.
There's the kind that every kid imagines at some point, where you drink the secret formula and then you can sneak around and peek in the girls' locker room or pants the quarterback in the lunchroom. (I clearly had Issues in high school.) There's a more existential concept of invisibility, too, the kind you dread when you're at a party and no one talks to you, or the type you crave when your boss is asking for big ideas at the meeting and you're terrified that he or she will call out your name.
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.
Schuyler has always had a mixed relationship with invisibility. If you look at a photo of my daughter, you don't see her disability. She presents from afar as a perfectly typical thirteen year-old girl. Her behavior, while perhaps a little squirrelly and, dare I say it, uncool, is nevertheless not all that unusual for a kid her age. She is wildly sociable and suffers from no particular behavioral anomalies. She's never melted down or thrown a public tantrum.
In the past (knock on wood that they stay there), she's suffered from occasional seizures, but they are partial complex seizures, very similar in outward appearance to absence seizures. Most people could be looking right at her the whole time she has one and never realize that anything amiss was taking place. Schuyler is completely ambulatory, and aside from the punky wrist bands she wears to help her mask her occasional drooling (an issue that she has become very skilled at hiding), Schuyler's disability remains almost entirely invisible.
It's perhaps not the best form to admit this outright, but I'm glad for Schuyler that her monster isn't one that sits on her shoulder, easily seen by the rest of the world. She manages to avoid a great deal of both unkind mockery and unwanted pity as a result, and that's the way she wants it. We have always tried to teach Schuyler that her difference isn't something for her to be ashamed of or embarrassed by, and that she is exactly who she is supposed to be.
Schuyler understands that she's broken in a profoundly real sense, but she also gets that we're all broken. She sees and accepts how everyone around her has their own monsters to contend with. There's no denying that hers are, in their own way, more daunting than most, but she's met enough persons with disabilities much more challenging than her own to put hers in perspective. Her life is a curious mix of envy and compassion, and in that sense she's not really all that different at all.
Even as she works to put her own disability in a workable context, Schuyler tries very hard to be like everyone else. She "passes", in the vernacular of the disability community. She endeavors to appear neurotypical, to fit in with her classmates, to hide her disability and to talk like everyone else rather than using her speech device. It's frustrating to me as her father, because I can see how close she comes, but how impossible her goal really is, especially within the unforgiving, Lord of the Flies world of middle school.
She's got a lot of work to do to arrive at a place of balance between the life she dreams about and the one she can ultimately construct on her own terms, and I can't get there for her.
There's another kind of invisibility for Schuyler. She's in a strange place in the disability community, one where her situation isn't life-threatening at this point, one where she doesn't requires physical accommodation for accessibility, one where her behavior doesn't mark her in public or disrupt her classes. Most of all, Schuyler occupies a place in that community with few peers.
Her condition (polymicrogyria, or PMG) is rare, to the point that I have yet to meet another person (outside of PMG-related gatherings) who has heard of it before meeting Schuyler. Even her neurologists have been mostly unfamiliar with it. She isn't autistic and doesn't present in a similar fashion as such, and she doesn't have cerebral palsy or any of the other usual nonverbal suspects, so she doesn't fit easily in the nonverbal community.
There's never going to be a ribbon for her condition, or a bumper sticker. And even within the relatively small polymicrogyria world, she presents differently. As she was told a few years back by a leading neurologist familiar with PMG, Schuyler is unique in all the world, in a way that goes far beyond the whole "special snowflake" idea.
Schuyler is one of a kind, and quietly so. The resulting invisibility can feel lonely, for her and for those of us who care for her. But it might just present her with the opportunity to completely defy expectations, to choose her own adventure. One day, it might just set her free.