I was three when I took my first steps, an act reached with belated defiance. My mom likes to recall this event as if she observed the origin story of my steely stubbornness, in which my one-year-old brother’s wobbly will to stand sparked my own interest in doing the same. “As soon as you saw your younger brother take his first steps, there was a spark in your eye,” she told me. “It’s as if you were thinking, ‘Oh yeah? I can do that.’”
My parents were already figuring out why their second daughter had been missing the conventional milestones their firstborn had met as I began this surprising competition with our younger brother. I was diagnosed with cerebral palsy around this time — a brain injury that likely happened at birth, as it usually does, but became more apparent the more I fell behind. It wasn’t exactly clear what lay ahead. I might be able to walk, the doctors said, but I would probably need surgeries. They also recommended physical therapy and securing aids to help me move. The goal was to be “normal,” and I grew up feeling a responsibility to get as close to that as possible.
I’ll cut to the chase through my childhood: Not only was I able to walk, but there was a time when I could run. I found easy material for “What I did during summer vacation” essays given that a few of them were spent recovering from operations, and I learned to balance with occasional help from walkers, canes, crutches, and wheelchairs. Aside from my disability-fueled extracurriculars, I enjoyed a solid group of friends and recognition for good grades. I unfurled my sleeping bag at Clueless-centric slumber parties, cruised the mall on Saturday afternoons, and danced with a date at prom. I was determined and kind and a bit of a nerd, but all of my attributes were summed up by one important fact: I hit all the teenage milestones.
There’s an asterisk there, of course. I was allowed to keep my books in each classroom, as one accommodation, and never took gym. Friends often carried my lunch, and would form “cones of safety” everywhere from crowded hallways to rented ballrooms so I wouldn’t fall. I did fall, many, many times, and once in front of the boy I had a crush on (I saw him years later and he didn’t remember). I ignored the jolts of pain I felt up my legs if I walked too much and dismissed contrasting stiffness if I moved too little. I always felt like I fit in, but I also felt a need to keep up.
It seemed as if my legs and I teetered on the edge of two worlds, and I constantly watched for cues that hinted at how to drift between them. In one world, I was a single-note anomaly: someone who people noticed and reacted to with pity, anger, or comical politeness. This was the historically pervasive lens in which there were no real expectations of me, and I garnered attention by simply existing in a public space. In the other world, my disability fell somewhat into the background so that other aspects of my life floated to the top. I was a good student, since so much of it lent itself to sitting. I had friends, but benefitted from knowing many of them since kindergarten. And yet, the loopholes and workarounds that made it possible for me to hold steady with my peers in childhood became harder to find or stopped existing as I grew into an adult.
It’s no secret that the benchmarks of adulthood are shifting. For my millennial generation and younger, college is overpriced and corporate ladders are crumbling. Starter homes are disappearing and rent costs as much as a mortgage. Marriage is elusive and babies may be out of the question. And when you’re disabled and over the age of 18, it can be even more daunting. It’s still legal to be paid a subminimum wage, for one, and countless “inspiration porn” videos online can turn simple errand runs or hobbies into performances. Funding for government programs is widely insufficient, even though it can be the key to living independently.
If traditional markers of adulthood had any sort of wiggle room, or the road to success wasn’t paved so clearly, then maybe it would be easier to pivot when individual lives don’t exactly conform to the mold before 40 (or 30, depending on who you ask). Instead, most people feel a persistent pressure to check them off their lists. That’s true even when you have a disability.
Learning how to fold a disability into the many other parts of my life has made me uniquely aware of the ways in which I have either met, exceeded, or fallen short of expectations. Taking my first steps when I did placed me on the leaderboard, and doing well in school — heck, having friends and dates, even! — put me well into the running. I earned degrees, I built a career, I lived on my own. But like countless other disabled people, I know what it feels like to be judged for circumstances outside of my control, or details that won’t shift no matter how much effort is thrown at them. It’s taught me that a disability adds a complicated layer onto otherwise common experiences. Sometimes I can’t climb a single stair without a rail; sometimes I’m nowhere near walking down the aisle. Sometimes it feels like a fully accessible home is a myth; sometimes it seems like there’s no way I can afford to buy any house near my parents. We all live with ideas of what is “supposed to” happen at particular times in our lives, and most of us try our best with what we have. And in a disabled body, there’s usually nowhere else to exist but somewhere in the middle.
My dad insisted on driving me to my first job interview at a major corporation in my mid-twenties, and it was the position I thought would make many adulthood milestones well within reach. He quizzed me and soothed me, and made me show him my handshake in the lobby as a security guard looked on. “You’ll do great,” he said as I entered the elevator. I was seated as my potential manager walked into his office, concealing my disability, and we hit it off as he nodded emphatically to my answers. When my second handshake of the day had gone just as smoothly as the first, I watched as this man’s smile turned to a grimace once he noticed how I walked toward the door. Maybe there was more to that familiar gaze, but I didn’t get the job. I told my dad about it later. “You can figure it out,” he said. “You know how to figure it out.”
I sometimes imagine a world where everything is easier, but not in the way you may think. I don’t picture being non-disabled… Well, at least I haven’t for a very long time. My disability has taught me that life doesn’t often go as planned, and that’s fine. The plan can be adjusted; the plan can be entirely discarded. There can be freedom in figuring it out, and power in it, too.
Maybe milestones aren’t for everyone. Maybe, for some of us, we can decide when to walk our own paths.
Kelly Dawson is a writer, editor, and media consultant based in Los Angeles. This is her fifth year as the guest editor of Voices of Disability. Her work has been published in nearly every shelter publication in America, along with The New York Times, AFAR, and Vox, among others. Follow her on Instagram @kellydawsonwrites.
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