My first week of living in NYC (also being my first week of college) I had made no friends, went to no parties, drank no alcohol, and kissed no boys.
My first week of living in NYC I went to the gym six times, spent $400 dollar in cabs, and slept for 14 hours each day. I went through 3 pairs of tennis shoes, two boxes of band-aids, and a jumbo tube of Neosporin.
I owned 0 mobility devices.
The medical community operates in units, quantities, and metrics of deviations from normalcy. My only interactions with being disabled happened within the medical community until I was 18, so I too, existed to be measured in units of abnormalcy. My body was deemed a math equation in need of solving.The (ephemeral and totally arbitrary, I now realize) word ‘normal’ drove any and all interactions I had with my body. At 18, I could quantify all the ways in which my body was, well, not….but could not tell you what my body actually was, aside from lacking, deviant, problematic, and abnormal. By the age of seven, I could spout to any of my millions of doctors that “my pyriformis were too tight but my internal lateral rotation was too loose.” To which they would respond with a mirage of horrifying cerebral palsy buzzwords like “blah blah orthotics. Blah casting blah blah. Blah blah blah femural derotations blah blah heel cord lengthening” all to finally conclude with “...and get you walking independently”.
“Walking.” Walking was the key to the illusive promised land of normal. If I walked independently, I could be a full human being, rather than a stream of quantifiable anti-metrics all their therapies seemed to suggest. Even in their concerned warnings of “be careful to stretch or you will end up in a wheelchair” seemed to point me towards the utopia of the normal body. I needed it. I craved it. I knew normal people walk. Assistive devices were a result of failure and weakness.
But failure and weakness against what? I wasn’t sure there was anything else on the other side of the equal sign of my bodily equation.
My first walk to my first college class was 5 blocks, 6 rest breaks, 4 falls, and two bloody wounds away (this is not including the countless stumbles, balance checks, and concerned stares from strangers, because I’m not entirely sure I can count that high).
While most of my friends measured their first week of college in new friends, hook ups, bottles of shitty vodka, and free swag accumulated, I measured my first week in bandages, ice packs, amount of money I could spend on cabs and still eat, minutes working myself up to facing thousands of hazards, number of seconds I could stand before feeling like my legs were going to give out, and finally stares of worry and concern for my safety. I was beginning to lose count. I couldn’t keep track of who was winning--my body or me. I was beginning to realize that I spent my life learning how to solve for X when = walking = normalcy, but that my life was a no sum game with continuously added factors.
No matter how hard I tried, walking independently into the kingdom of normalcy wasn’t going to happen. Not because I couldn’t walk, but because normalcy didn’t exist. I was tired, in killer pain, and no longer working for a solution. I realized my body was and is not normative and to deny that would be submitting to my worth to numbers placed on me by doctors who told me what I could not be, rather than what I could. No matter how much I stretch, lift weights, and endurance build, I would be measuring against a negative/imaginary (admittedly, i’m bad at math so this metaphor must come to an end) set of values.
So I caved. I bought a fucking mobility scooter. It was wheel-legs or go back to Ohio and count more steps and failures.
But just because my walking isn't normative, doesn't mean my life can't be. Counting steps, obstacles, and falls is not a way no live a normal and productive life. When I have my wheel-legs, I no longer needed to count those things. I was able to count instead nights out, boys kissed, artistic successes, new friendships, and adventures. I no longer go outside and brace myself for impact, rather than experiencing a moment. Life is a lot more interesting than sitting in class counting the minutes until the you have to count the steps until the minutes where you don't have to navigate hazards.
When we are teaching young kids to think about their disabled bodies, the question shouldn't be 'how good are you at walking?' but rather, 'how good are you at living?' Sometimes those answers can be one in the same, but for me they were not, and that's okay. I would not be able to make theatre, see all parts of the city, experience night life with friends, and be a face of the disabled community that is out there living a productive, fast paced life if I was stuck thinking about how to be normal. Being passably normal takes up an abnormal amount of brain space.