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?
Tags: bros who want to get philosophical, disability, essays, high femmes, humor, not being as strong as you’d like to be, sara cantor
my left leg can tell that it’s either too hot or too cold; my right leg can tell which one it is.
This is kind of amazing. I am imagining your two legs (not in a creepy way, god I sound like a creeper) having a conversation about water temp and then reporting the results to your brain. “Brain, it’s TOO HOT!” “Roger that, Legs! Water too hot! Commence evasive maneuvers!”
Great essay. I have a disability, as well, and I can relate to a lot of this. I think I’ve developed an “angry” look in public that deters strangers from asking a lot of questions. It’s kind of sad. I don’t look mad on purpose, I’ve just developed it as a defense mechanism.
Again, great job, Sara! I look forward to reading more of your work in the future.
I am overcome with secondhand embarrassment for the Random Punks, and may never stop cringing.
Sara, thank you, this is fascinating, especially the elaboration of the difference between “disabled” as a physical concept and a social one.
A few years ago, my body went from able-bodied to not-quite-so-much in the split second it took the car to hit me. But there was a lag of a few weeks before anyone – me, my doctors – realized my (thankfully minor) injury was more-or-less permanent, and even longer before my friends and colleagues caught on, which allowed me to see how being socially categorized as disabled changed my [ahem] standing.
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
This afternoon, I have to tell some dear friends that I’m postponing a quick visit to deliver a gift to them (for the second time this week). They love me and they’ll be understanding, but I don’t think they really understand: if I go out in this icy weather, I’ll fall, and if I fall, I could be fine or I could be flat in bed for a day or for three days. That mental calculus is ever-present, and it adds a whole new dimension to my social life.
and I got to travel the country when I was a teenage wheelchair basketball player.
… does everyone else want to read an article about that experience, too? Yeah, I thought so.
Oh yeah, we’re not gonna let Sara stop writing for us, now that she’s started.
TEENAGE WHEELCHAIR BASKETBALL TOUR! That really wants to be a hit TV series, but first the article. THE ARTICLE.
ABC family, no question.
um, duh, I would LOVE to write about that. sneak peek: there was a lot of sexism on my all-male-but-me team! there was also a lot of making out (not by me!) and ~dRamA~ at basketball camps! oh, teenagers.
OH MY GOD this is an ABC family series, absolutely.
(Write us all the articles, please!)
Another request for wheelchair basketball articles!
I loved the part about the social and medical concepts too. My boyfriend uses glasses and a few days ago we were talking about how/why is it different from using a cane or a prosthetic leg but didn’t have an answer. This one makes a lot of sense.
Also, my mom works for a non-profit for children with disabilites and she always says that you can go from able-bodied to not-so-much in a second, I think we all forget that.
This was fantastic! I hope we’ll be seeing more from Sara.
Oh, this is great. You are great!
Sara, just as a matter of curiosity, have you tried horseback riding as a physical activity? Your comments seem to indicate you wish there were activities you could do and it sounds like riding would be within your capabilities.
By the way, I found this site through a reference by TNC. I follow you every day.
Failing that, Sara is welcome to come to my house and sip bourbon while watching my idiot horse spook at her wheelchair and run into walls for her own amusement.
In keeping with your kind response to this, I shall also be kind.
*sits on hands…kindly*
booooo release your hands!
Sara explicitly says that there are two things about her disability that bother her: not being able to wear heels, and not being about to ride a bike. I don’t think horseback riding is a viable substitute for either, but I do think that your comment is both misguided and presumptuous.
ETA: Aaaand now I feel like a dick (see Sara’s very lovely and appropriate comment below), but I’m going to leave this here as evidence of my dickishness. THE INTERNET IS FOREVER
thank you for being a non-dick on my behalf <3 <3 <3
I actually HAVE tried horseback riding! I did it for a while when I was a little little kid, and it was the COOLEST (I never got to the point where my horse could canter, but it was my #1 goal forever because of my last name). I would be interested in going back to it, but a) as stated above, I am really into sitting on my couch and reading the internet and going out might take away from that time (I kid) and b) horseback riding is expensive! If someone would like to bankroll some lessons for me I would be all over that.
OK, this is a silly thing only my copy editor brain would even notice, but: there’s an asterisk after “some mental problems” like it’s indicating a footnote, but there’s no footnote. (Also I’m curious what said footnote would say, if there’s supposed to be one there.)
As someone with what could be considered “some mental problems” I definitely agree! (I was hoping to scroll to the end of the section/article? and see it and in my wildest dreams see it talk about psychiatric disability as a thing! but no haha that never happens, invisible disabilities represent.)
Oh yeah! I meant to ask Sara what she meant by it/delete it, but then I forgot and went to bed. I’ll get around to it.
In the interest of site transparency, I am the one who didn’t catch the Marie Antoinette thing yesterday.
In keeping with your bold and transparent lead, I am the one who didn’t care enough to change it once I noticed it. “GOOD ENOUGH”: NEW TOAST SLOGAN.
I murdered my wife.
I just want you all to know that in 1984, I voted for Ronald Reagan.
HOW ARE YOU ALL SO GREAT
SORRY MALLORY
See below – there was totally supposed to be a footnote! I love talking about invisible disabilities! Funnily enough, one of the reasons I wrote this piece is because I was really yearning to read stories from folks with physical disabilities, and felt that I was running into a lot of great writing about invisible disabilities that was totally amazing but did not reflect my experiences back at me. We need more types of writing about every type of disability so that no one will feel like their experience is being ignored! I would love to read something written by you about psychiatric disabilities!
As a side note, I have been diagnosed with a few depression and anxiety related psychiatric conditions, but because my experience of them has been SO DIFFERENT from my experience of my physical disability, I haven’t been identifying them as disabilities (for myself). Thank you for the nudge to be more thoughtful about that!
More disability writing of any kind on the Toast/in the world is something I can get down with, and I apologize for sounding bitter/needy.
*mumble* I’m considering writing up something about performance and mental illness and passing. I’ve had this piece in mind for years but never have quite gotten it out.
dude, there is absolutely NOTHING wrong with feeling bitter and/or needy about a lack of representation – that shit is important, and things won’t change if we pretend otherwise! but also, you did not sound any such way <3
I can’t wait to read your piece!
Oof, there was TOTALLY supposed to be a footnote to go along with said asterisk! (it’s not the editor’s fault, I just put the asterisk there to remind myself and then forgot to write it). It would have said something like this:
“Mental and developmental disabilities are exactly as real and difficult as physical disabilities! A thing I’ve been thinking about a lot lately is how the oppressions faced by folks with visible or invisible conditions are often the inverse of each other – i.e. my disability itself doesn’t present me with many difficulties, but being immediately visible as disabled does, and I get the impression that the opposite is true for many people with invisible conditions.
And, as a DIFFERENT footnote, one thing I am continually appreciative of wrt the disability justice movement is the recognition that there is no singular experience of disability, but that doesn’t stop us from working together for similar goals. I read a really excellent article a few years back that goes into detail about what feminism could learn from disability-related activism about not privileging one experience – if I can find it again I’ll link to it here!
<333333 this is the best comment, and I love your inversion observation. I think it rings exactly true.
I’d love to see that article if you find it! Do you think it was from disabledfeminists.com? (Everyone go read that site!! Amazing archives of work.)
Aha! I found it! Here it is: http://www.jstor.org/discover/10.2307/20459006?ui…
(I’ll be re-reading it for the first time in years after posting this, so apologies if it is not as good as I remember)
Thank you! I am seconding that this is an excellent comment. I also scrolled down to find the footnote when I saw “some mental problems”. I am also diagnosed depression/anxiety type conditions. For a couple of years I have also had debilitating (as in, it really affects what I’m able to do) fatigue. This mostly gets lumped in with/attributed to the psychiatric stuff.
I’m leery of identifying as disabled because of either thing partly because they’re invisible. Even though I’m registered as disabled with my university because of them. This whole visible/invisible thing is weird, huh?
I, too, was hoping for the footnote re: “some mental problems”!
Oh man, this is so great. I have a nerve injury from birth so not the same but so much of this rang true. Sometimes (even with the internet) it’s easy to forget that I’m not the only one dealing with similar stuff so it’s weirdly reassuring that other people go through the shit as I do. People ask the same bonehead questions! I have very similar scripts based on which bonehead question gets asked! The mental math of how much to trust people and how their responses are usually the same!
so glad that we are living in the future so it is easy for us to know about each other and our matching experiences!
I met Sara at our meet-up in San Francisco, and she is the funniest.
no, YOU
no
me
Sara, I would love to see a piece on NON-boneheaded conversations about your disability that you have had with people you know only slightly. Because even in the boneheaded conversations you describe above, the people are trying to be sensitive, they’re just doing a poor job of it. I think most people just don’t know how to act in that conversation. Some guidance would be super helpful!
Oh, I’m certainly planning on writing more, and something like that is on the docket!
I just wrote a whole thing about this and then deleted it, bc it is REALLY hard to parse. Long story short: interacting with folks with disabilities as real-life, capable human beings who just happen to have a quality that is different than you is a terrific place to start, and the fact that you are interested in treating other people well tells me that you are probably doing a good job already!
hi sara cantor we went to college together and were the same major and we didn’t really know each other at all but i always thought you were sort of intimidatingly cool seeming. i really really enjoyed reading this and loved the tone and perfect moments of humor and thus said impression/intimidation is both confirmed and reinforced. i’m really happy you plan on continuing to write here and will be reading with enthusiasm! that’s all.
Hi Julia! I’m not positive which Julia you are because there were TWO in the linguistics department (what a feat for our baby department!) but I think I have an idea, and either way, I totally know who you are and think you are rad! I’m sorry that I seemed intimidating, and I wish we had gotten to know each other better at school. Thank you for your nice comments!
This was a great essay. I’m so glad I came across it today. I’m a librarian and also recently found the Disability in Kid Lit blog which also great perspective (and aside from The Toast is my favorite new online find this year): http://disabilityinkidlit.wordpress.com/
Oooh, thanks for sharing!! It’s not kid LIT, but I will always and forever maintain that Finding Nemo is the best (big) movie about disability ever made. http://www.youtube.com/watch?v=WTPwcTlLiow
This was awesome, and I look forward to seeing more from Sara. Lots more? Soon?
This was really great, and am looking forward to seeing more!!
“Sedentary intellectuals” is such a nice euphemism for “NERDS”.
we call ourselves the squishy people
SARA. you should write an entire SERIES of articles where you just replicate conversations in dialogue format. you are a genius of remembering people’s speech patterns and all the attendant squirm-inducing interpersonal failure
Sara, how beautifully written and articulated! It’s great to read your work, even if it makes me miss you and your quick wit and your winning smile like WHOA. Meh. MEH. Our lives will sync up again one of these darn days, I know it. Until then, I will whine. x
This is beautiful.
I’m disabled now, largely by pain, weakness, and fatigue from fibro, so I use a cane. I think often about a friend I had in middle school who had CP and how concerned I was the first few times she fell in front of me. She told me that you learn quickly how to fall safely, and I’ve really found that to be true. I think about her whenever I fall (after the terror and pain).
This piece is awesome. Thanks for writing it.
Sara, you are an awesome writer and I love you. I echo those calling for more writing from you!
I FORGOT TO COMMENT ON THIS WHEN IT WENT UP (thanks work) (what i totally don’t spend all day at work on the toast) BUT IT’S REALLY REALLY GREAT AND I LOOK FORWARD TO READING MORE FROM YOU IN THE FUTURE
Great piece of writing. My son is 8 and has spinal muscular atrophy, walks with difficulty and spends much of his time in a wheelchair because it is so tiring and he falls a lot. I thought I was kind of adjusted to seeing things as he might see them and giving him the support he needs, but not what he doesn’t need (tricky, because all kids need stuff!). Now I wonder if I don’t get it at all! I hope as he grows and we talk and he develops his own perspectives on being him that I will grow too, else I may forever remain some (old) RWP.
Thank you, Sara. More please!