I Have Erb’s Palsy, and I Live on the Borderline Between Disabled and Able-Bodied

Earlier this year, a physical therapist called me "deformed." I added the word to a list I keep in a back corner of my mind. Deformed. Cripple. Baby-hand.
Publish date:
October 28, 2015
healthy, disability, Erb's Palsy

When I was 14, I took a social justice workshop that introduced the idea of privilege to a bunch of exhausted teenagers.

We were handed a piece of paper with two columns, each of which contained identity descriptors. One side listed marginalized identities and the other, privileged ones. It looked like this:

White/caucasion ………. Person of color

Cisgender …………….... Transgender

Straight …………………. Lesbian, gay, or bisexual

Able-bodied ……………. Physically disabled

We circled the words that applied to us. Rather than reading left to right, I read down one column, then down the other. I didn’t realize that the words in the same row were supposed to be mutually exclusive. I circled both able-bodied and physically disabled.

A handful of educators in 2005 are far from the only people to ever set up this dichotomy. If you Google the word able-bodied, you’ll find a definition that reads: "fit, strong, and physically healthy; not physically disabled." I live on the borderline between fit, strong, and physically healthy and physically disabled. You could say I’m that semicolon.

I have Erb’s palsy, also known as a brachial plexus injury. It’s a birth injury to my shoulder that partially paralyzed my left arm. It doesn’t get in my way much.

I type one-handed and can’t lift my arm above my head. Sometimes when I grip a book for too long in my left hand, my fingers go numb.

But having a mild, visible disability is less a physical challenge than it is an exercise in constant tension between two worlds.

One morning I’ll have a run-in with a stranger in Starbucks who just needs to tell me how inspirational it is to see me “out living life!” or a man on the street might angrily call me a “slut with a jacked-up arm” when I ignore his advances.

The very same night, a well-meaning friend might chastise me to stop thinking of myself “that way” if I self-describe as disabled. This is nothing new.

In a lot of ways, I had a very normal childhood: riding the tire swing in the backyard, going to the rock climbing gym or swim class at the YMCA. My weeks were peppered with visits to the physical therapist and a surgeon specializing in Erb’s palsy.

But the sense that something about me was broken and needed fixing didn’t primarily come from the doctors. It came from the occasional uncomfortable exchange with my peers: two girls at a camp sleepover who wouldn’t let me sleep near them because my arm was just too weird and I’d never be normal; a boy in my arts and crafts class who suggested, not unkindly, that I look into a career as part of a traveling freak show; and the constant questions, always phrased as a negative.

“What’s wrong with your arm?”

This was years before I learned the Forrest Gump response (“Nothing at all, thank you. My arm is just fine and dandy.”).

I went to college at a tiny and weird liberal arts school where I found that among barefoot, granola-crunching college students, my Erb’s arm couldn’t matter less.

But I’ve since moved to New York, a famously shallow and cutthroat city, where I spend at least one evening a month auditioning for theatre. Casting directors tend to notice and care about physical difference more than granola-crunching college students.

With the changes came a renewed sense of Other. I joked recently at a work function that moving to New York makes you more disabled than you ever remember being before.

The new emphasis on my disability has hit me like a wave of nausea: disorienting, distracting, uncomfortable. But it’s also caused me to revisit this identity of mine that I’ll circle on a page if I come across and eagerly remove from my scope of awareness as long as my community lets me get away with it. I question why I’m quick to put it out of my mind.

After all, disabled people are neat. They – we? – have accomplished scores of good stuff, from the ADA to A Brief History of Time.

Earlier this year, a physical therapist called me "deformed." I added the word to a list I keep in a back corner of my mind. Deformed. Cripple. Baby-hand. I can’t decide what to do with this list, but I can’t seem to discard it.

And yet.

This winter, I’ll be playing two featured roles in Grease. I’m so excited not just to perform, but for all the kids who will see this show. For the disabled kids who will see themselves in me on the stage. A dancer; an ingénue; not a freak show.

I feel like I should have a single lesson to offer up to nondisabled people reading this essay. Use this word, not that one; don’t call me an inspiration; hey, disabled people date too, you know!

But I’m still figuring it all out myself. I have fragments of ideas about my body, about navigating the world with my body, and I have to do my best to catch them, to note them, to piece them together slowly into what may never become a complete understanding of what my disability means to me.