I just fell, hard. I was halfway home from a friend’s house when I realized I had left my phone there; ten minutes later, I was jumping out of my car in front of their house. I started to jog inside when my foot slipped on something, and I was down for the count – palms and knees slammed into the ground, protecting the rest of my body.
I fall a lot. I was born with a disability – a partial atrophy at T12 of my spinal cord, for those of you who are medically inclined – that has affected the motor skills of my lower body, so I walk with a cane and a limp. I’ve actually become really good at falling! I can even fall while holding a glass of water and ensure that none of the liquid spills (she brags).
So falling has become sort of a non-event: I pick myself up, brush myself off, and go about my day. Sometimes strangers will stop to help, cooing at me in warm tones to ask if I’m okay. I’m fine! I brightly say, flashing a winning smile so that they won’t think of me as Tragic Disabled Girl.
It happens so often, my reaction has become my go-to response to hurting myself, or anything major happening to me: figure it out, deal with it, manage the feelings and perceptions of everyone in the general vicinity by not appearing troubled.
But back to the fall I just fell. I was thinking about my phone, so the fall surprised me. I didn’t have any time to prepare for landing. I lay there, stunned, on the ground for a good two minutes, pondering my options – my phone was inside the house, so I couldn’t use that to call anyone, and I was too proud to yell from the street for help (plus, they probably wouldn’t have been able to hear me). Eventually I decided that I was just being melodramatic and picked myself up, tried to brush myself off, and went to my friend’s door and rang the doorbell.
I can’t feel my legs – well, I can sort of feel them, but not in the ways you’d expect. If I draw a bath and step into it, my left leg can tell that it’s either too hot or too cold; my right leg can tell which one it is. When I was a baby, I broke my leg and didn’t care (leading my mom to figure out that there was something wrong and begin to fight the doctors to take her seriously so I could get correctly diagnosed – go Mama!). I frequently cut myself shaving and don’t notice until I see the rivers of blood running down the shower drain.
This time, though, I could tell that something was wrong – I didn’t just fall on my legs, I fell on my hands. Which I now couldn’t feel. My pals were sweethearts and let me inside to sit on their couch for a while, sorting myself out. One of them brought me a wet washcloth.
When I’m in intense situations, I turn into a walking, talking Leslie Knope – extremely with-it, super bright and sunny, exceptionally capable. Recently, outside of this same house, someone broke into my car, and I snapped into action mode, calling AAA from the very same couch, filing an online police report, chatty and happy the whole time. It wasn’t until days later that I started to feel actually upset about it.
It’s weird.
But things have happened in the past few days that have been making me feel a feeling that is best described as “weird as fuck.” No one is being outright rude or malicious, but they’re not being particularly sensitive. Or they’re being too sensitive. I don’t know, man – like I said, weird as fuck.
Situation 1:
[I’ve been sitting on a couch at a party where I don’t know many people. I stand up, using my cane to support myself like I always do]
Random White Punk: Whoa, what happened?
Me: I have a spinal cord injury from birth.
RWP: What happened?
Me: [thinking he hasn’t heard me] I have a spinal cord injury from birth.
RWP: Yeah – what happened??
Me: Oh, well, I have a partial atrophy in my spinal cord at T12, which is just below where your ribs stop – so my spinal cord is perfect [swooping hand motion], then a little bit withered away [tighten space in between fingers], then perfect again [finish swooping motion]. They think it might have been caused by a blood clot before I was born.
RWP: Oh man, that SUCKS, dude!
Me: Okay.
Situation #2:
[in the middle of a conversation about traveling abroad with a friend-of-a-friend]
Friend of a Friend: You could do that organic farming thing – what’s it called? WWOOFing.
Me: Yeah, WWOOFing seems pretty cool, but I’m not sure I’d be able to do it. It seems like a lot of the jobs require physical labor, which I sometimes can’t do because of my disability.
FoaF: (thinks silently for ten seconds) What…is your disability?
Me: Oh! [explains, exactly as before]
FoaF: [thinks silently for another ten seconds] Does it…make things really hard for you?
Me: [dream world] Nope, just this!
Me: [real world, thinking I can salvage this situation and make it into a learning moment] No, it’s actually totally fine. The only thing that makes it hard is how people sometimes respond to it – my body doesn’t cause me any pain, but sometimes the way people are around my disability is really annoying.
FoaF: [thinks silently]
Me: There are two academic models of disability: the medical model, and the social model. The medical model assumes that disability is rooted in the body, that it is a result of a body being “broken.” The social model thinks that disability is rooted in society and its inability to accommodate certain bodies.
FoaF: [thinks silently]
Me: A great example of the social model is poor eyesight: lots of people have bad eyesight, and glasses are really common, so we don’t consider not being able to see without glasses or contacts a disability. But if we hadn’t invented glasses, being nearsighted would make your life really hard! A lot of tasks wouldn’t be accessible to you. The only distinction between disabled and non-disabled is how prepared we are to handle a difference.
FoaF: [thinks silently some more] So…you don’t consider yourself disabled?
Me: [dead]
Situation #3:
[Sitting a different random punk’s backyard]
Different Random Punk: What’s your disability?
Me: [explains]
DRP: Oh, cool! When I was in the third grade, there was this kid with cerebral palsy in my class, because they didn’t have anywhere else to put him, you know? Everyone else was all mean to him, and would just ignore him and shit, but I always said hi to him! I was like, “yo, Garrison, whassup?” and I’d ask him about the music he was listening to, and he even came over a few times. Everyone else treated him like shit, though, and I was just, like, what’s with that? Everyone’s got their thing, you know? And, like, if you want to get serious about it, I have some scars on my stomach, and some mental problems, but it shouldn’t affect how you treat me, right? It shouldn’t affect how, like, we communicate, just because someone might have something wrong with them.
Me: [incredibly bored by this entire conversation because I have it three times a week with bros who want to get philosophical] Yep, that’s right.
DRP: [never, ever stops talking]
I wrote my college essay about how my disability has affected my life for the better. A lot of that essay I still stand by: I get excellent parking (SO crucial when I go into San Francisco), I get to the front of the line at Disneyland, and I got to travel the country when I was a teenage wheelchair basketball player. All of that stuff is awesome! I’d say that the only things that really bother me about my disability are that a) I can’t wear high heels – it makes being a high femme much harder to pull off – and b) I can’t ride a bike, shutting me out of “bike culture” forever. Other than that, though? I don’t really like “moving,” per se, so not being able to run ain’t no thang. I don’t like hiking, or rock climbing, or jogging, and most other activities can be adapted. I drive a car using hand controls and it rules.
Like I said in Situation #2, the only real bad thing about my disability is negotiating having one in today’s world. Since I don’t use a wheelchair anymore, stairs are no longer a problem, but parking far away can sometimes be hard on me. Not because the walk is too difficult – I just have to walk slowly, and I might have to take a break or two. Walking long distances with a group feels precarious – I have to go through a complicated mental calculation to determine how much I like and trust these people, and how willing I am to make myself vulnerable enough to ask for us all to stop and take a break. Even after the inevitable chorus of “omg, of course!” and “hell, I’d like to take a break, too,” I still feel embarrassed, like I’ve done something wrong. It’s hard not being as strong as you’d like to be. It’s hard to ask near-strangers to take care of you, to acknowledge your needs. It usually takes a lot of intimacy to feel comfortable asking for stuff like that.
This is a really common thing for my lower body. Since the doctors realized that I can’t feel my feet, my parents have been vigilant about making sure I don’t hurt myself again. Part of that was being really aware of the sensations of my legs, and checking in with myself. Now, my brain can process touch without necessarily responding to it. If I say that something on my legs “hurts,” it doesn’t really hurt, but I can tell that it would have if I had been able to feel my legs. In a sense, I’ve tricked myself into feeling pain.
The weird thing about this fall was that I hurt my hands, too. If I had just hurt my legs, I would have known to get up, walk on them for a second, maybe check them for cuts, and keep on moving. But my hands hurt! A lot! And it made me wonder if this was what it was like for able-bodied people to fall, and that’s why they always seem so concerned when I trip. It made me think a little bit more about what it would be like to have been able to feel my legs, to feel able-bodied. And that idea freaks me out.
I often am approached by strangers who want to congratulate me for existing and perhaps share a bit of their perspective on life. “Sometimes I think I have a hard life,” they’ll confide in me, “but then I see someone like you, and it helps give me perspective. I have it really easy.”
Aside from the obvious what-the-fuck-factor, this comment is rooted in the fact that this person does not have a disability, seeing me makes them imagine what it would be like if they did, and this thought makes them nervous. They’ve never had a disability before! How would they handle it? That sounds really hard – easier to just off yourself, or sit in front of the couch eating bon-bons (mmm, bon bons) all day. That’s where the “It’s just so good to see you out!” comments come from-
But the thing is, I think the same thing – just the other way around. I have no idea how to be able-bodied. I don’t know what I would have done if I hadn’t had a disability. Would I have played sports? Probably not – I come from a long line of sedentary intellectuals. Maybe my disability led me to that position, or maybe it was my natural instinct, and my disability is a random wrench thrown in the equation. There are billions of facts about me that are like this: I’ll never know how much of an effect my disability has had on my life.
Which is why the idea of suddenly becoming able-bodied terrifies me. How would I do it? I feel like I would be in pain all the time. I wouldn’t have to deal with people being assholes about this one particular piece of my identity, but I also wouldn’t be able to use it to exploit the natural tendency to feel sorry for the disabled. I think I’d feel a lot more boring. How would I tell OKCupid dates how to find me in a restaurant without a cane?
