For the first 50 years of my life, I was singularly uninspiring. As a child, I ate Lucky Charms for breakfast (the green, yellow, and pink marshmallows, of course, not the cereal or the milk), and while in school, I was the poster child for compliance, paying attention to my teachers and moving from grade to grade. I went on to college and, when I became an adult, I made a paycheck at jobs that had nothing extraordinary about them. My titles included cashier, short-order cook, dishwasher, babysitter, housecleaner, graduate student instructor, and senior technical writer. I got married, had a kid, got religion, bought a house, got divorced, got married again, raised chickens, took walks in the woods, laughed, cried, lost religion, and tried to get a decent amount of sleep.
And then I was diagnosed with Asperger’s and, oh my God in heaven, I became an inspiration — not just in the present tense, but retroactively. Everything that had once been ordinary became extraordinary. It was entirely against the laws of physics, and yet, it was palpably so.
I had not realized how inspirational I was until, shortly after my diagnosis, I had occasion to go to a routine doctor’s appointment. My husband came with me. After some conversation, the nurse began preparing me for an ECG. For some reason that I still do not understand, the nurse (who had only just met me) began talking about her son Joey, who has autism, and how they never, EVER use the word autism in their family with reference to Joey. As she’s talking, she’s describing incidents in which Joey’s autism would be patently obvious to even the most casual observer, but she’s insisting that the word itself must never be spoken. Joey is just quirky, different, odd. Joey cannot be called autistic.
As I was lying there on the table, I took it into my head to say something. Maybe I just felt bugged by the fact that she thought autism was some sort of dirty word that had to be hidden in plain sight in her own house. Or maybe my super-sensitive auditory system was begging me to please, please, just say something, anything, to interrupt the torrent of words coming at me. Whatever the reason, I decided to share.
I said, “I’m autistic, you know.”
And the next words out of her mouth were, “You ARE? And you’re MARRIED? Do you have KIDS?”
I assured her that I did — a teenage daughter, three grown stepchildren, and a godson.
“Oh my God,” she said. “You’re so INSPIRATIONAL.”
Mind you, at this point, I’m lying on a table in a doctor’s office in a hospital gown. Where was the inspiration? I made a mental checklist of what had happened in the room. My husband and I had come in together. I had spoken of my kid, stepkids, and godson. The nurse had spoken about the test. I had asked why I needed to have an ECG, given that my blood pressure is low, that I have no heart disease, and that I have no family history of heart disease. I had learned that the doctor does baseline ECGs for all of his patients over the age of 35. I had assented to the test.
My being inspirational seemed to be about very basic things — about speaking, about asking questions, about being married, about having kids, and about being in the doctor’s office for an ECG. That’s all the nurse knew about me, and that was enough.
I soon learned that I was even more inspirational than I’d thought. Not only was my present life inspirational, but my whole life had been inspirational as well.
I was at a therapeutic horseback-riding lesson and my instructor, who had read my memoir, used the I-word to describe my story. Now before you begin thinking that I’ve had a very exciting life, parachuting with life-saving medicines into war-torn countries, and that it is all described in gripping detail in my autobiography, I must make full disclosure: My life has been pretty pedestrian. Really. My memoir is about struggling through 50 years of everyday life undiagnosed, and then learning to adapt to disability, and then finding some peace with who I am. Interesting to some, if my book sales are any indication, but not the stuff of drama.
I know that my instructor was trying to be kind. I know that she was telling me that she thinks highly of me. But as soon as I heard the word inspirational, my heart sank. Inspirational is such a distancing word. It’s a way of telling me that I am other, and that if I communicate, or get married, or have kids, or go to a doctor’s appointment, or search to be at peace with myself, just as most people on the planet do, the response will be different from what most people on the planet encounter. The response to my struggle to be fine with who I am will not be: You know, I’ve really struggled with finding peace with myself, too. The response will be: It’s so amazing that you’re disabled and you’ve found peace with yourself! The implication, always, is that the other person simply could not imagine finding peace inside disability. And of course, the hidden danger of inspiring people by not hating yourself is that your detractors will say that if you feel peaceful, you’re either deluded or not really disabled in the first place.
So here in mid-life, and entirely without my consent, I have become an inspiring crip. I am often very curious about the picture of disability that underlies the figure of this inspirational creature. I realize that most people, even parents raising disabled children, get their ideas about adult disability second-hand, largely from medical and media representation. Most people have very little everyday experience of adults with disabilities, and so they have these pictures in their minds of who we are and what our lives are like. And it’s these representations, and not our lives themselves, that create the very idea of inspiration. The nurse preparing me for the ECG thought I was inspiring not because speaking, and asking questions, and being in a doctor’s office, and having a husband and kids are inspiring in and of themselves, but because they are so out-of-kilter with what she believed life-long disability to be. In her mind, I should not have been doing any of those things, so the fact that I could do them was nothing short of amazing.
One of the oddities of being diagnosed in mid-life with a disability I’ve always had is that I get to watch people assign different meanings to exactly the same events pre-diagnosis and post-diagnosis. My neurological condition has not changed. What has changed is that my hidden disability now has a label that I do not hide. That is all — and that is everything. In the past, I was just a kid getting out of bed and brushing my teeth in the morning. I was just a college student, studying for exams. I was just a grown-up, shlepping myself to work every morning, sharing my life with someone, and having a family. It was all quite ordinary. It was full of bills to be paid, oil to be changed, and groceries to be gotten. It still is. It’s no big deal. It’s all in what people like to call the ordinary course of things.
Unless you speak your disability. And then it’s all an inspiration.
That inspirational quality has nothing to do with me. It has to do with the distorted pictures that people carry about disability. So when people tell me that I’m inspiring, as much as my ego would like to latch on to the approbation and my heart is ready to accept anything so long as it’s given kindly, I simply cannot claim the title, because it’s not about me at all.
I’m just trudging through life like everyone else. So come and trudge along beside me. Just don’t call me inspirational.
© 2012 by Rachel Cohen-Rottenberg