Part I

The day after Mother’s Day this year my mom and I watched the film Crip Camp together. It was my second time, her first. She teared up a little (so did I, the Capitol Crawl gets me every time)  and she expressed concern that she hadn’t done enough in my life to connect me to that world. I assured her that there had been no 1990s equivalent of Camp Jened to send me to. I don’t know if that’s true, exactly, but I do know that I wish there had been. 
 
I grew up in (and still live not very far from) very rural Southern Appalachia. A very small, very insular place. Everyone knew my parents, high school sweethearts, who had a tiny 2 lb. baby very early and very unexpectedly while they were on summer vacation in Charleston. I was prayed for and prayed over by an entire community. Very often when out in public with my parents I would hear something along the lines of “I remember when you were born!” or “We prayed so much for you when you was a baby!” 

The short version of the story is this: my parents were in Charleston to celebrate the 4th of July with their friends. I was due the last week in September. They thought this would be just a quick weekend vacation with their friends. Little did they know!  Three months and two NICU stays later they brought home a very tiny alien-looking creature masquerading as an infant. 

I was always aware, even as a kid, of how much the community was invested in my life and in my story. As an adult, I have often joked to my friends from other places that I was the poster child for disability in my community, a lone disabled island. 
 
I love my home, and I love my community. Never in a million years would I wish to have grown up in the arms of anyone other than proud, hardworking mountain people. But even so, I knew that I was different. I didn’t have the words to explain or articulate it but I knew that no one saw my disability. They told me as much. “I only see you as Ashley,” I heard time and time again. 
 
It was never, ever intentional but I do regret being so divorced as a child from this part of my identity. It feels necessary to make it explicitly clear that my parents are amazing. At 28, I am between the ages they were when I was born. It isn’t lost on me that my birth was nothing short of traumatic for them as they were faced with what I am sure felt like an insurmountable task. Even still, they adapted and charged ahead, making damn sure I knew that I was as capable and deserving of any abled person in this world. 
 
But in spite of all of that, little Ashley still knew so well as a first grader in purple casts and a tiny wheelchair that I was alone in this very specific way. The journey to my disabled identity was quite the long trip. I’m happy to have you along.  

Part II

“Oh, I just walk funny. That’s all.” 

For many years, let’s say at least all of elementary school, that was my constant retort. I obviously knew that I had cerebral palsy, but beyond that, I didn’t know any better. How could I? Who would I have learned from?
This was before the daily, often debilitating pain. When I could run, and jump, and for one fleeting summer, ride a pink bike with modified pedals and training wheels in tight circles around my backyard patio. This was when my life revolved around interventions to increase and expand my functionality, not around preserving function and mitigating damage.

I think, at this point in my life, that I had no idea that I was disabled. Was I aware that there were things that I simply just could not do? Sure. I’m looking at you, skipping. Did I realize that I was different from everyone else? Oh, absolutely. When I say that I grew up in a community that did not see my disability? I mean that almost literally. “Oh, that’s just Ashley, she’s Leca and Dean’s girl. She was born mighty early when they were down in Charleston. She just walks a little funny, that’s all.” 

Sitting in the back of my first grade classroom, behind a clunky old wheelchair desk drug up from basement storage after 15 years, I had no idea that there were other people out there, millions of them actually, that were just like me. Let alone that there was one other student with a hemiplegic CP diagnosis in that same small rural elementary school. I didn’t know, as I was shuttled away to various storage rooms, closets, and gym equipment rooms for my twice weekly physical therapy sessions while I heard my classmates shrieking and playing during PE and recess on the other side of the doors — I had literally no idea that there were many others living a very similar experience. 

I knew nothing of what it meant to be disabled. Nothing of the greats that came before me and paved the way for the ADA to be signed some eight years prior. I knew nothing of the nuanced identity and rich connections that disability would offer me later in my life. At that point, all I could have hoped for was to see myself in someone else. 

And I would, on a crowded platform in Penn station on a bitterly cold December evening some 18 years later.