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Just Don’t Call Me Inspirational
October 18th, 2012 by Rachel Cohen-Rottenberg

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


7 Responses  
  • wjpeace writes:
    July 17th, 202411:11 amat

    I have been “inspiring” people for 34 years. Not once have I ever felt I did a thing to be deemed inspiring. Inspiring is inherently dehumanizing. What is really being stated is you are normal and the expectations set for you are so low the most ordinary action is an achievement. Wow, you are married translates to the unspoken belief you are asexual, not worthy of marriage. I often get wow, you can get wheelchair in and out the car all by yourself. This translates to you have a dysfunctional body I want to avoid. In short, inspirational to me is a form of social oppression whereby those with typical (normal) bodies can assert their power and justify exclusionary practices.

  • Jennifer Brunton writes:
    July 17th, 202411:11 amat

    Can we use a different word? As a Mom on the spectrum with a child on the spectrum, I do think about his disability as something that will present major challenges in just such situations as marriage, parenting &c and I look to myself (learned to drive in late 30s! yay! finally married right, decent, trying-hard parent…) and You as people who show that people with neurological differences can find ways around the obstacles presented to us as a matter of course by a largely neurotypical world…This is specific to this particular type of crip-itude and seems fair enough to me, but take me down if you must. Love

  • adkyriolexy writes:
    July 17th, 202411:11 amat

    “Beating the odds” is another one.

  • Jon Baker writes:
    July 17th, 202411:11 amat

    Since I can’t find an email address for you, I’m sending this as a comment.

    Are you (or maybe your husband) descended from the Rottenbergs (e.g. Samuel Rottenberg) who were involved in the founding of the Brooklyn Jewish Center on Eastern Parkway and Brooklyn Avenue just after WWI?

    I find the name “Cohen-Rottenberg” amusing, because the two big factions in that founding were my great-grandfather, Louis Cohen, who wanted the place to be Orthodox, and Samuel Rottenberg, who wanted it to be Conservative. Rottenberg won, having put up more money. The two families are buried across the path from each other in the BJC plot at the Old Montefiore Cemetery, glaring at each other, as it were.

    Since there wasn’t much real difference liturgically between the Conservative and the Orthodox before WW2, the Cohens stayed active in the shul, until they lost their money in the Depression and moved to Manhattan. Another Rottenberg wrote a book on genealogy called “Finding our Fathers”; he grew up in the building next to my parents’ in Manhattan.

    Contact me at thanbo at gee-mail dot com.

    • Rachel Cohen-Rottenberg writes:
      July 17th, 202411:11 amat

      Oh my goodness, Jon — the person who wrote “Finding Our Fathers” is my brother-in-law, Dan Rottenberg (brother to my husband Bob)! Their grandfather, Marcus Rottenberg, was instrumental in the development of the Society for the Advancement of Judaism with Mordechai Kaplan. I will email you to talk more!

  • JoyMama writes:
    July 17th, 202411:12 amat

    I’ve been doing lots of thinking on this one, Rachel — thank you for that.

    I’m finding myself wondering where the word “inspiration” fits in the real, and I think useful quest for a vision of my child’s future, for role models on a path that’s out of step with how much of the world works.

    I blogged recently about an encounter with an autistic piano tuner who didn’t speak until he was eleven, and was able to move forward as a student when his mother realized that he responded to music as a way to teach and learn. I didn’t use the word “inspire” or “inspiration” in that post, but learning of his successes made me feel really good, as a mother of a child who does not yet speak (much) at eight, struggles to communicate in general, and responds to music as she learns to read and draw. The word “inspiration” does speak to, for me, at least some of what I felt as he tuned our piano.

    How to navigate such a set of maternal feelings and wishes without engaging in disability inspiration porn?

  • Pam writes:
    July 17th, 202411:12 amat

    Rachael,
    I loved your post. Everyday I find more and more posts like yours…talking about life…talking about what is real! With each story I become a better parent because I increase my understanding of what is really important for raising and supporting my son. I have learned more from support groups and pages such as yours than in all the doctors offices over the past year. So I thank you for sharing your story and I look forward to trudging along side you.
    Pam


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