Like any person with a disability, my daughter experiences a number of manifestations of her condition. One of them doesn’t appear on any diagnosis document or IEP, but it’s one that she shares with many persons with disabilities.
It would be easy to argue that Schuyler is an unusually visible kid. I mean, she’s seen her face in People and Good Housekeeping, after all. Her story has been a matter of public record since before she was even born. But as with anyone with a disability, there’s a real difference between being seen and being truly visible.
There are a variety of ways that Schuyler can be invisible. She’s not autistic, for example, so she’s largely unseen by a lot of advocates and most of the media, who lazily equate “disability” with “autism”. More to the point, she behaviorally presents as typical, and does so very intentionally and with great care. She works hard, heartbreakingly so, to mask the outward indicators of her disability. She wears cool wristbands, the kind favored by skaters and roller derby girls, in order to quickly wipe away the occasional drool without drawing a great deal of attention to herself. Schuyler uses her speech device when she needs to, but much of the time she puts it away, shunning the message it sends. Schuyler keeps her disability invisible as much as she can, presenting to the world not so much as a broken kid, but rather as something of a weird one. And one whose words are mostly inscrutable.
Despite a tremendous amount of progress with her natural speech, Schuyler remains non-verbal. Regardless of how easy she is or isn’t to understand, Schuyler has plenty to communicate, as much as any eleven-year-old girl in the world. We have encouraged her from the beginning, and especially since she was five and was introduced to assistive technology, to use as many modes of communication as she can, from verbal speech (mostly vowels, a few soft consonants and inflection, but still surprisingly clear) to sign language, from writing to the world’s longest ongoing Charades game. She moves through the world carrying a communication toolbox, and if it lacks the one tool she values the most, it is still fairly well-stocked.
In the Lord of the Flies world of middle school, Schuyler’s inability to communicate in a traditional manner leaves her invisible. The girls in her school swirl in conversation, a never-ending stream of observation and conjecture and laughter that moves too fast for the adults around them. It certainly moves too fast for Schuyler. So she walks among them, participates when she can but mostly stands apart.
Schuyler told me something very interesting this morning. She said that in her dreams of mermaids and fairies (the usual suspects in her dreams), she speaks. “Like you and Momma,” she clarified.
She wasn’t sad when she said it, not exactly. Just… aware. Aware of her differences, aware of how things could have been in another world. One that is more fair, one where she is always visible.
Robert Rummel-Hudson’s first book, Schuyler’s Monster: A Father’s Journey with His Wordless Daughter, tells the story of raising a little girl with a disability and learning to become the father she needs. It was published in February 2008 by St. Martin’s Press and was released in trade paperback in January 2009. We profiled him in June 2010 in honor of Father’s Day.
He’s written for us a few times and we’re proud to say in the coming months he’ll be a regular contributor 2x a month. You can follow his blog here, at Fighting Monsters with Rubber Swords.
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