The Inevitable Sorrow of Passing
“Passing” is a controversial topic in the disability community, and for good reason. It refers to the efforts by people with disabilities, most often with the encouragement of their school communities and society in general, to alter their behavior in order to “pass” as non-disabled. To walk among us, to use an unfortunate phrase. Passing is a distasteful idea when it comes from the outside world. It’s more complicated when a young person with a disability that they can mask to some degree falls in love with the idea of convincing the world that they are “like everyone else”, as Schuyler often puts it. It’s heartbreaking, not just because they shouldn’t have to, but also because the chance of ultimately failing is pretty close to a certainty. And that’s a hard fall when it comes.
Schuyler gets little peeks at what her world might be like if she weren’t able to pass, at least on a cursory level. This weekend, she had another 72-hour ambulatory EEG, to measure possible seizure activity and to record any changes in brain activity that might help explain some of the troubling changes in her behavior and memory. This involves two primary components: a bewildering array of wires and sensors glued to her head and leading to a small computer in a backpack that she hasn’t taken off since Friday, and a small video monitor which she has to carry around with her and place so that it’s watching her as close to constantly as she can arrange. (We call the little monitor “The Schuyler Show”.)
On a good day, especially when she doesn’t have to speak too much, Schuyler passes pretty successfully. There are a few outward signs of her polymicrogyria, but she masks them pretty skillfully. She carries an iPad with her at all times, of course, but these days, that doesn’t exactly distinguish her from any other teenager. (Insert curmudgeonly, “get the hell off my lawn” statement here.) Like a lot of kids with intellectual disabilities, she worries about people noticing her difference and judging her for them. For Schuyler, passing is a very deliberate choice. I try to encourage her to embrace her uniqueness, but while I hope passing won’t always be her position, for now, as long as it’s what she wants, I’ll help her any way I can, even as I know where all this leads. This is going to be a tough lesson for her to learn, but it’s going to be one she learns herself. It has to be.
Going out in public with her “wire hat” and the weird cable tail that leads into the backpack, and carrying The Schuyler Show with her, Schuyler’s anxiety about “people looking at me” has gone through the roof. She makes a distinction that’s interesting. She had no problem wearing it to her Miracle League soccer game on Saturday in order to support her team (particularly on Autism Awareness Day; she very deliberately picked out a blue shirt). And when I asked her if she minded if I wrote about this for today, including using a photo of her in her cyborg gear, she sad “Sure, go ahead.” Among a supporting, knowing community like Miracle League and the people who regularly read about her, she’s not embarrassed at all. She even thinks it’s kind of badass.
But when it comes to moving through an unknowing and often unsympathetic world, she feels anxiety. She knows that with her head wired and the evidence of her wonderful but flawed brain right out there in the open for everyone to see, she can’t pass. She’s not one to hide away from the world, but after a few forays into the grand rough world on Saturday, she chose to spend Sunday at home. Not even the chance to see Star Wars at the dollar movie could entice her back out.
I believe on some level, Schuyler probably understands that even without her wire hat and The Schuyler Show, she won’t be able to entirely pass forever, and perhaps not even for much longer. As she gets older, the differences in her communication and, perhaps more critically, in the way she behaves become more obvious to a watching world. We still live in a society where being different is suspect, a fact that those of us with kids like Schuyler know all too well. If you’re not like everyone else, if you’re perceived as broken or unwhole, doors close. Doors of opportunity, doors of personal relationships and doors of independent living. Passing lets Schuyler stick her foot in those doors, but that only works imperfectly, and most impermanently.
Later today, Schuyler will have her wire hat removed. She’ll spend the rest of the evening washing and rewashing her hair and probably picking glue bits out of it, and then she’ll be free to go back underground, like a spy deep inside enemy territory. In her eyes, it’s friendly territory, even if she’s only welcome there up to a certain point. I wonder if, on some level, she understands that the clock on her disguise is running out.
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I appreciate your perspective and insight. I find your words to give great clarity to what I feel as I travel a similar road with my son, 9, also living with PMG.
When my autistic daughter’s social anxiety spikes, we talk about getting a support dog; we’ve talked about it on many occasions during the past several years. Her response is a mixture of longing and the reply, “But then people would ask me about the dog and everybody would know what my problems are.”
My daughter is now twenty, and according to the stories of adults diagnosed with autism, she has a number of years left to stick out as increasingly different and isolated until with middle age she may feel more comfortable and her anxiety may start to subside. It’s agonizing to watch her struggle through the desire to appear just like the other college kids, yet recognizing the extent of her differences more and more with each day.
I have a very visible disability, and the number of people who casually ask about it fell off a cliff once I was an adult. She might be over-estimating how many would pursue a conversation about what the dog is for, especially if she had a script to redirect inquires to general dog chatter (“He provides [emotional] support, do you have any dogs?/watch this trick he can do!”). I’m 29 now and the only people who ever ask anything are kids about 4-6 years old, and them I don’t mind as long as they’re kind about it.
Thank you, that is very encouraging.
When I had my first ambulatory EEG, at 25 or so, I left the hospital feeling a little awkward. I was tired, it had been a really early appointment, and now I was wearing an uncomfortable wire hat. I walked from hospital to bus and could tell people were looking at me. I got on the bus and could tell people were looking at me. I got home and discovered that my EEG tech had drawn marks for placement reference and hadn’t removed them.
I wasn’t just wearing a wire hat. I had a big red cross drawn in the center of my forehead.
Made me wish I had growled at the obnoxious rich old folks who were sitting next to me and talking loudly in a way designed to make it clear that they had money and ha ha, wasn’t slumming it on the bus fun.