Why I Don’t Write About Being Disabled in the Outdoors
According to the Centers for Disease Control and Prevention, 1 in 4 adults living in the United States are disabled. That’s 25% of the population or 61 million people.
I feel less comfortable writing about disability, even though, if you met me on the street, it’s one of the first things you would notice: I’m a visibly disabled African-American woman. It’s gotten to the point where, if I’m followed by store clerks, I no longer know if I’m being racially profiled or if they are simply being overly solicitous of a disabled woman using a mobility aid.
I don’t write about disability in the outdoors because I hate embodying the stereotype of a disabled person who is not comfortable in her own skin. I know this is how some able-bodied people view people with disabilities, and yet, for many of us it couldn’t be further from the truth.
Even though coming to terms with my disability is a process that I have every right to do publicly or privately, my private thoughts feel like a betrayal of people who have lived with a disability since birth, or at least, longer than I have. I know I should be stronger, more confident about taking up space but I’m not. I should be more knowledgeable about identifying and calling out ableism, I should have more of an edge, but I don’t.
The truth is I feel uncertain—and not just about whether strangers are being racist or ableist or just helpful. I feel uncertain about where I fit in within disability culture. Then there’s this hard truth: I don’t love my disabilities. I hate the idea that I have to love every part of myself all of the time. Which also seems scary because if someone told me they didn’t love their black skin I would literally be at a loss for words.
But I don’t love my dystonia, painful involuntary movements that periodically make it difficult to walk and talk. Constant nerve pain makes me feel weepy and brittle and walking is exhausting. I don’t love my vocal tics which transformed me from an adventurous person who lived out of a suitcase for years to a homebody who never wants to leave her apartment—because suppressing tics is exhausting and not suppressing them is confusing and scary for people around me who are unaware of my medical history.
I’m ambivalent towards the other things that make me disabled, and that’s progress. I have made my peace with the things I can no longer do. I miss trail running, but I accept that bodies change over time and high impact sports like running are not forever activities, they’re right now activities.
Even though I feel more optimistic about my future, my disability isn’t always a source of strength and empowerment. And it’s rarely a source of normalcy. Most of all, I hate being pitied. I can see it in the expressions on the faces of complete strangers when I open my mouth and my volume is way off and my words are completely slurred.
It’s the sudden, awkward silence during a phone interview when the person on the other end has no idea what I’ve said but is too polite to say otherwise. It’s the prayer warriors who ambush me in parking lots, or on the metro, or the men who follow me to my car (to be “helpful”) when all I want is to be left alone.
Growing up, I was most comfortable outdoors. During high school, I felt incredibly alive on the trail, on the track, and on the water. After I joined the Army, I loved running 12 miles with a 55 lb metal frame ALICE pack as much as I hated paperwork and long hours at the office. I loved jumping out of airplanes because it allowed me to feel present in the moment. Being outdoors and pushing my body past my physical limits made me feel at peace—it defined the person I was, until it didn’t. I miss the physical freedom, independence and peace that I enjoyed as a mostly able-bodied person.
Before I became disabled, I spent 30 years taking many of the things my body could do for granted. I also failed to appreciate how much the outdoors was tied to my social life. Skydiving was a way of connecting with new places all over the world and running was a way of meeting new people. I miss being an independent, active person even though I know these qualities are neither what define a human being nor what give meaning to a life. I know this, but nonetheless, in the outdoor community, being outdoors is sort of the point.
The days and weeks I spend at home or at the hospital without being able to spend time outside carry a sense of irony. It’s what prompted me to create Melanin Base Camp, as a way to stay connected, but it’s also painful to scroll through social media while feeling trapped indoors and socially isolated. In skydiving and running, as in many outdoor communities, if you stop showing up, people generally stop asking.
The communities I love and contribute to are unintentionally yet inherently ableist. After all, we don’t post photos of people at home doing IVIG treatment, participating in cognitive behavioral therapy or boarding the metro access bus with other wheelchair users. No, we post mountaintop photos, that only occasionally feature visibly disabled people using mobility aids—as long as they’re on a damn mountain, or surfing, or doing things that “inspire” able-bodied people.
We don’t post photos of people at work (unless they are park rangers) either, even though most of us aren’t on an endless summer #vanlife trip. Even though we spend a lot more time at work then we do in the outdoors. Regardless, on social media, we offer a perpetual escape: a fantasy of the outdoors packaged in granite and sandstone and inspiring captions—all without financial worry, without mental health challenges, or even the 9-5 grind required to pay for all of it.
I don’t write about any of this. I’m not even sure if I’m qualified to. I wasn’t born into severe disability, mine are mostly acquired through illness. And that means my experience as a disabled person is different, and will always be different. It’s a painful process of learning and unlearning—starting with unlearning the ableism I’ve been complicit in as a mostly able-bodied person for the majority of my life. That also means redefining how I assign value and meaning, to myself and to others. I still love the outdoors but it no longer overwhelmingly defines my life. Spending time in nature still gives me joy but I also haven’t found it to be particularly healing. Out of necessity, I am redefining who I am and hopefully gaining some empathy in the process for people whom I have overlooked, silenced and infantilized. I’m sorry.