No More Passing

This is the essay my therapist doesn’t want me to write.

 

I wish that I could say that I don’t understand her concerns, but I do. She fears that it would place in the foreground something that most people who come to know me see only as a small part of me. It’s never been what defines me, so why run the risk of letting that happen now? I imagine she wants to protect me from being typecast as disabled and likely the recipient of all the associated projections that I’ve worked for years to dodge.

 

I’ve countered that writing about my disability would be empowering, that it’d give me a way to openly claim a part of myself that I’ve tended to keep at arm’s length. I imagine it as a coming-out of sorts, a response to those who have confessed, “I always knew there was something different about you, but was afraid to ask.”

 

Because my impairment is not stereotypically visible—there’s no wheelchair or other mobility aids—the markers of my disability are more subtle and perhaps even perplexing. I have what is considered a mild case of cerebral palsy, the result of brain damage at birth. Cerebral palsy is not a disorder per se but an umbrella term for a group of neuromuscular conditions. There is a spectrum of possible presentations, ranging from severe impairment to minor challenges with balance and coordination. Mine is on the latter end. I am one of the lucky ones, I have been repeatedly told—and I have readily agreed.

 

As camouflaged as my CP is, I have always been aware that others sense some sort of difference in me. Try as I might to filter it out, I’ve been painfully attuned to their unspoken curiosity and, at times, their pity. I suppose that I’ve always known that people don’t quite know what box to put me in. So my coming out is probably less of a revelation and more a naming of the proverbial elephant in the room.

 

My friends and loved ones often insist that I overestimate the visibility of my CP. I’ve been told that it’s “barely noticeable” and stops being “an issue” once people get to know me. As far back as I can remember, I’ve clung to these reassurances like a life preserver. They eased my worries that the strained quality of my speech was a distraction; I could keep any shame about my irregular gait and tremor largely at bay.

 

Keeping my disability as unnoticed as possible has always been an implicit goal. I wasn’t considered a child with “special needs” and, it being the pre-ADA 1970s, I rarely received accommodations. Grateful as I was for not being singled out, I did have special needs: completing a handwriting assignment, carrying my lunch tray across the cafeteria, writing on the chalkboard, surviving any part of gym class—all were struggles that I chose not to name. Asking for help felt like inviting shame and ridicule or, in the heyday of the Jerry Lewis Telethon, being cast in the role of poster child. So I became creative in developing my own workarounds and ways to compensate. This exhausting self-sufficiency seemed like a small price to pay for acceptance and belonging.

 

While I have been impacted by my physical limitations, the bigger burden has always been my self-consciousness. No matter how much success I achieved, I could never shake the feeling that I was defective and that my defect eclipsed all else. At the same time, though, the steady stream of reassurances I’ve received to the contrary made these fears feel a bit like paranoia. There was something relieving in thinking that it was all in my head: if it was simply a matter of low self-esteem, there was a fix for that. As a teenager, I became an avid consumer of self-help books and later of therapy. I learned the concept of “projection,” which bolstered the argument that my otherness wasn’t being tracked as much as I believed.

 

But inevitably the self-protective bubble would burst, usually after a comment from someone whose curiosity or discomfort could not be contained. The client who complained to my supervisor that they did not want to work with me because I “talked funny.” The acquaintance who, after I’d mentioned my husband, exclaimed in disbelief, “You’re married??” And the colleague who, before sending me a referral, asked, “Should I warn them about you?” This was before the term microaggression had entered the lexicon. Even if I had had this language at the time, I’m not sure if I would have seen it as applicable. They weren’t being aggressive; they were being honest. I was always devastated. It was proof that my disability was, in fact, “an issue” and my otherness was indisputable.

 

I never felt l had a choice other than to pick myself up, dust myself off, and go back to hoping that I could “pass” more often than not. And there were, in fact, long stretches of time in which my CP remained outside of my daily awareness and seemed to garner little attention from people around me. These times felt like triumphs; noticeable or not, I had managed to transcend my physical differences, at least for the time being.

 

But my body had other plans. As I entered my forties, muscle and joint pain that started as an expectable nuisance quickly became chronic. I also developed esophageal spasms, which made eating solid food almost impossible for the better part of a year. Because CP had never posed health problems for me, I rarely even mentioned my disability to my doctors. I was wholly unprepared for the lack of knowledge, and in some cases sensitivity, I encountered when trying to find medical care. Even living in a major urban center, I was unable to find a specialist who saw patients with CP over the age of eighteen.

 

I turned to the internet to fill in the gaps. My research quickly revealed that adults with cerebral palsy frequently experience what is referred to as “premature aging,” the result of living with excess stress and strain on the body. I also learned that I was not alone with my frustration with the medical profession’s treatment of CP as solely a pediatric condition. Entire online groups were dedicated to information exchange and advocacy, many under the umbrella of the disability justice movement. Until then, the disability community had been an abstraction for me, made up of really disabled people, whom I pictured to be low-functioning and pitiable. What I discovered, however, couldn’t have been more disconfirming: a diverse array of activists and academics, as well as many like me, everyday people trying to unsnarl themselves from lifetimes of internalized ableism.

 

I was stunned when my new connections alerted me to the Center for Adults with Cerebral Palsy at NYU. After years of failed attempts at finding a specialist with the expertise I needed, I had assumed that further searching was futile. That this center even existed lifted burdens that gave me hope that maybe my “special needs” could be met after all.

 

I was unsure what to expect when I went to the clinic. As the appointment approached, I encountered a part of myself that had previously been muted. It was the part that wanted my difference seen, to be able to relax my vigilance and frantic efforts to pass, to fully inhabit my body in all its nonconformity. Suddenly, my fears turned upside down. I worried that my CP would be seen as too mild, that my needs would seem illegitimate compared to more-challenged patients. Would there be a space for my pain, physical and emotional, or would I again be labeled a “lucky one” and left to my own devices?

 

The answer turned out to be yes. I found a recognition that required no explanation or justification. I was not an object of pity or inspiration. I wasn’t an object at all. And yet, walking past fellow patients, often in wheelchairs, and sometimes with caregivers, I did not see myself reflected. There still wasn’t a box that I fit into neatly and I didn’t come away with a miracle cure for my pain. But somehow, there was a little added space in me: space for the part of me that wants my difference recognized to coexist alongside the part that longs for an anonymous normalcy. Perhaps there’s room for more.