Since May, the New York Times has featured a Disability column, with essays, art, and opinion pieces by people living with disabilities. I have hungrily read these personal essays, nodding my head, hmm-ing, appreciating others sharing their world.
Earlier this month, I read
At some points when reading, it feels like I wrote this piece. It feels like they’re talking directly to me. I connect, so effortlessly.
In her section, Brown describes the dreaded standing parties.
I make do relying on walls and various pieces of furniture for support. Periodically, I perch for a few minutes on the couch, but no one stays sitting long, and from down there, it’s impossible to hear anyone who’s standing over the din. The expectation is that you’ll circulate. —Brown
I relate to this so much. Typically, there are standing tables at networking events, conferences, happy hours, office holiday parties, etc. These are designed so people can eat their food and drink their drinks, mingle, chat, and then move around the party. But these tables are the height of my chin sometimes (not very comfortable to eat or drink from) — they’re not made for someone my height, or for people shorter than me. Not to mention, you have to be able to stand (for periods of time) to be able to use them. This completely overlooks wheelchair users, people with canes, or walkers, or crutches.
Standing tables are not accessible. I abhor them. But they keep cropping up everywhere. And Brown seems to be speaking directly to me in her essay, describing pain: “There comes a point a little way into the evening when the pain in my knees and back and ankles reaches a roaring point and my head is filled with the sound of a false ocean, as if my ear is pressed to the mouth of a conch shell.” Just replace the pain in my back and hips, and that’s me after standing or walking too long.
Brown and Nevison write about how people judge their bodies before even acknowledging them.
As soon as I had stripped down to my bathing suit in the dressing room, a woman asked, “What happened to you? Were you in some kind of accident?” This woman asked me to explain my body … I’ve spent a good part of my life making people more comfortable with my body … my body needs its own introduction. —Nevison
Having to make others comfortable with your own body, that your body needs “its own introduction.” These are facts that disabled people deal with daily, hourly, each minute.
And why should someone have to explain their own body to strangers? These are our own, private medical histories. Sometimes, we have to share to gain access. Sometimes, we just want the stares to stop. Sometimes, it’s easier.
As a poet who writes about pain and my skeletal dysplasia, I walk the line of wanting to share and best describe my experiences AND not wanting to have to explain myself to mere strangers. It’s different when I choose to share in my poetry and when someone on the bus says, “You’re too young to walk like that.”
Brown explains this well.
I’m visibly disabled, and so I have to talk about my body everywhere I go. Sometimes, it’s to assuage people’s curiosity: the woman in the shoe store wants to know what happened to me, or the man I’m on a first date with hasn’t asked about my family but is weirdly hungry for details about just what exactly my body can do, just how exactly I’m scarred. Sometimes, explaining is a matter of necessity: I need to know if there’s an elevator in the building where I teach this semester.
I have a nasty habit of treating my body like it’s a bad suit of clothes or a thing that somehow just keeps happening to me. —Brown
Nevison hits a major point when she writes, “My body requires explanation in public spaces because public spaces aren’t made for people who look like me.” She’s explaining that accessibility shouldn’t be so difficult, should be a given. But, even 27 years after the Americans with Disabilities Act passed, it is not a given. Disabled people still have to request access and accessibility for so many facets of society, just to be able to participate in society like every other person. (And these public and private institutions should already be accessible without a request, as according to the law).
Explaining our bodies, what we require, how we’re different is like speaking two languages, Nevison writes. “It is the disabled person who is required to translate for the able-bodied world,” she says.
In this essay, Brown and Nevison also explore an interesting dichotomy of disabled bodies. We can’t exist without them. Brown describes the difficulty of finding the right words to describe living, to explain her body and how it is to live in her body.
I never forget about my disability — its root system is shot through every part of me. This is true on a basic biological level: It’s a feature of my brain and the electrical signals it sends. It’s not just that I’m often in pain, or that I have to think about my body almost all the time, although both of these things are true. It’s that I don’t exist without my body. —Brown
I’ve been taught to speak about disability as something that exists in addition to myself … this semantic dislocation is related to the fact that I can render disability invisible. If I wear pants, no one sees the scars … Growing up, I thought I could be in possession of physical disabilities without being physically disabled. —Nevison
This NYT column is so incredibly powerful and important. It allows other disabled people and people with disabilities to see themselves. It allows us to share what our lives are like with the rest of the world. More newspapers, magazines, and media should take note and open up their pages/spaces to disabled and otherwise marginalized writers. These voices will bring change.