Growing up with Charcot-Marie-Tooth Disorder - URevolution

Growing up with Charcot-Marie-Tooth Disorder

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Growing up with Charcot-Marie-Tooth Disorder. Portrait of a calm confident fashionable young Black woman with dreadlocks wearing a yellow hoodie.
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Growing up with Charcot-Marie-Tooth Disorder

I cannot recall the first time I tried to pass as being nondisabled. I cannot stretch back to some indiscernible moment when I realized my own difference. When I realized that I did not like the attention that my difference drew. Who or what burst the bubble of my comfortable existence, that iridescent film behind which I had floated unselfconsciously? A too-easy rupture that changed everything. Or perhaps a constellation of smaller moments laid the groundwork, promptings to pass that I only vaguely remember as a feeling, a response, to some forgotten hurt.

I can, however, recall the day I was diagnosed with Charcot-Marie-Tooth Disorder (CMT) at thirteen. I can recall looking up the word degenerative in my Webster’s Dictionary when we returned home from the doctor’s office. Understanding that my difference would stretch forward across my lifetime, degenerating. By that day, I was already adept at performing a version of “normal”: my efforts to pass long preceded the diagnosis that put a name to my difference.

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As a child, that difference was most obvious because of my atypical gait and propensity for falls. Falling up the stairs was my particular specialty, but I was not opposed to falling down the stairs, tripping while walking, or even falling while simply standing up. At home, these falls became my trademark, episodes that we would all laugh off after it was clear that I would live to fall another day.

Walking and falling outside the home, I understood, was a different matter: there, I was always subject to the inevitable “are you okay?” or “what’s the matter?” from teachers and other concerned onlookers. Because I lacked the stereotypical social markers of physical disability, people assumed that my limp, my sway from side to side, my trips, must be the result of a fleeting injury or chronic clumsiness. I occupied a nebulous territory between ability and disability: not able enough, but also not disabled enough. Nevertheless, these well-intentioned questions and lingering stares transformed my body into something in need of fixing. The remedy was a gait that would draw less attention, a walk that pushed my body ever so slightly over that able enough line.


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This performance has taken more and more effort over the years (hat tip to Webster’s Dictionary). I have added thick plastic orthotics, orthopedic footwear, and, most recently, AFOs to my wardrobe. As I navigate campus, I walk stiff-legged with my head down, always hoping that my eyes will catch that little bump in the pathway before my foot does. Every window I pass, every glass door I approach, is another opportunity to assess my passing walk. I avoid making eye-contact with anyone who might want to join me on these short journeys between classroom and office: it is far too strenuous to keep up my performance and keep pace with my companion, all while trying to carry on a coherent conversation.

The thing is, my passing walk, at this point, only just passes—or maybe it doesn’t pass at all. Over the last several years, I began teaching disability studies and identifying as disabled on campus.  And yet, even with disability on my tongue, on my parking placard, I fear it on my body. Passing is about more than pretending to be someone or something that you are not. Passing is about power. It’s about not hearing “I’m so sorry” from colleagues, friends, and students for your existence as a disabled person. It’s about not feeling like an inconvenience when you need even the most basic of accommodations. It’s about not being judged as a mother of young children who you might not be able to carry in your arms, chase if they run from you momentarily, or to whom you may have passed on your condition (as I have, times two). It’s about internalized ableism and self-stigma. And it’s also about privilege, because there are so many disabled people who cannot pass as seamlessly as others.

COVID-19 suspended my performances of ability. Working remotely, distancing from all things social, has given me ample time to reflect upon how I moved through the pre-pandemic world.

Ample time to cultivate my home walk. Here, I move to the rhythm of my body: my pain, my weakness, and my strength. A wide swing in the hips, more rocking than walking, more dancing than limping. A bump here and a misstep there: a different kind of surrender. My home walk, like my body, is not a fixed thing: I have a morning, afternoon, and night walk; a rainy day walk, an “I slept the wrong way” walk, and a walk for the worst and best days. These walks are not without care or thought: to walk is also to be on the lookout for trip hazards, like rogue toys, running kids, the dog, or even my own two feet.

So, how will I move through the After Times? I want to say that I will not only talk the talk but also walk the walk. But passing is complicated. And try as I might, I cannot un-pop the bubble. I no longer have an interest in appearing nondisabled. Yet, whether I choose to pass or not to pass, it is still a decision that I will have to make every day.

‘Growing up with Charcot-Marie-Tooth Disorder’ was originally published as ‘Passing’ on Wordgathering. It is re-published here under Creative Commons license CC BY-NC-ND 4.0.
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Article by
Giuseppina Iacono Lobo

Giuseppina Iacono Lobo is an Associate Professor of English at Loyola University Maryland where she teaches courses on early modern literature and disability studies.

Caption:

"Growing up I occupied a nebulous territory between ability and disability: not able enough, but also not disabled enough."

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