Pain and Public Spaces

The singer Martha Wainwright has a song entitled “Bleeding All Over You” that begins with the following set of lyrics:

There are days
when the cage doesn’t
seem to open very wide at all

I know it sounds negative, but some days, I can definitely relate. Maybe it’s the fact that I pass fairly regularly as able-bodied–at least in public spaces–or maybe it’s my failure at passing on my worst days that makes me relate. As much as I hate to rely upon the old trope of the person-with-disability as trapped by her own unruly body, it, like many tropes, has a sliver of truth to it.

When I am in public, I often fear that other people–more able-bodied people–can “spot” my disability. On a purely surface level, this makes no sense. Part of what makes passing such an interesting topic is the fact that, on some level, the individual who passes can hide something and look as if she or he is a part of another group, despite some (invisible) evidence that would suggest otherwise. I realize also that not everyone has the ability to pass–that passing, in itself, is a privilege. The ability to appear to be something that one is not (often as a member of a more privileged group) is not something that absolutely everyone has.

Today, I sat in a restaurant and ate a light lunch very, very slowly because my right hand was unable to hold the fork without considerable muscle pain in my tendons and wrist. This sort of thing happens rarely, but when it does, I get nervous. I become nervous because I think that my fellow diners, or students, or whomever, can pick up on my not-immediately-obvious physical difference(s) from something that is only slightly “off.” Even using a term like “off” is problematic; it implies that there is something wrong, that the person who needs to take time to do some of the things that others may take for granted needs to be fixed, somehow; that, or she needs to “fix” herself (by minimizing/masking her pain or ability or dis-ability) so that she may fit in and continue to pass.

So, are my restrained grimaces due to pain–when I am in public spaces, that is– restrained because I, deep down, want to continue passing? Is it because I would be embarrassed to show my pain around strangers? Is it out of rather ridiculous consideration(s) of the “comfort” level of strangers (ie: the social assumption that one should never make people uncomfortable, even if one is in pain)? Does a “stiff upper lip,” so to speak, actually do anyone a favor? I’d argue that the whole “keep your pain to yourself” thing might arise from a very deep fear of individuals with disabilities, but that’s probably best saved for another post.

Originally posted at Ham.Blog

16 Comments

  1. Does a “stiff upper lip, so to speak, actually do anyone a favor?

    It does, though not us of course. It helps the people who have to see us in pain. The charitable explanation of their motivation is that they’ve internalized the message that it’s not nice to stare at someone using assistive devices or in visible distress to the point where they simply do not know what to do when such a person enters their field of perception and are flailing about in cognitive dissonance.

    The less charitable explanation would be that we remind them that humans, while rather tough, large animals and highly successful apex predators, are not indestructible. They fear becoming disabled themselves. Fear is an uncomfortable emotion to carry. It’s much more comfortable to transmute it to contempt and anger at the reminder of their fragility and mortality.

  2. Sometimes a desire to pass crops up for me because of a desire for privacy. As my disability shifts from non-existent, to invisible, to visible, and back again, I don’t like that people, strangers, know something, anything, about my business, even if it’s not as much as they might think they know. Not always, sometimes I don’t give a fuck, but other times… It’s not about their feelings, or offending their delicate sensibilities, or being identifiable as disabled per se, and fuck a stiff upper lip, but whether I want what’s going on with my body to be public or not, it suddenly is. My body is already up for public scrutiny as a woman, and a fat one at that, so why does this feel different, I have to ask myself. I know passing is problematic on it’s face, and there’s a lot for me to unpack about the gain and loss of privilege.

    Gah! You should give a “more caffeine might be necessary” warning on these posts if you’re going to make me thing so hard!

  3. *think dammit!

  4. I feel somewhat reluctant to comment on this because I don’t have chronic pain, but this does remind me of something:

    I’m hypersensitive to sound, and this means that a lot of everyday noises other people don’t appear to mind are physically painful for me. I used to try not to let this show, but I’ve recently been letting myself give in to the impulse to flinch and cover my ears even when the sound hasn’t yet reached the point where I don’t have a choice in the matter. It’s absurd how people will act as if you’ve just committed some crime against decency if you do that, and how me showing that I am in pain becomes a statement of defiance.

    (This doesn’t really have to do with passing for me – I do spend a lot of energy trying to pass and terrified of acting noticably non-NT, but that’s to do with body language and the like, not whether or not I show pain.)
    .-= Kaz´s last blog ..On talking vs. silence and currently-abledness =-.

  5. Kaz, having a chronic pain condition is not at all a requirement for commenting here or in any other thread. Finding something painful that neurotypical people do not* and reacting as any human would when encountering a painful stimulus marks you as different, as a person with a disability. Cue mutterings of “What’s [xer] problem?

    (So hmm. Everyone who’s commented on this thread has a handle starting with ‘k.’ Maybe we should start a conspiracy to go with it.)

    *And I am so with you on this — loud high-pitched noises hurt and often set off a bout of tinnitus; low-pitched noises resonate in my body cavities and long bones and make me feel like laughing.

  6. Kaninchenzero’s comment really hit close to home.

    A lot of it is a privacy issue, and some of it is rolled into (internalized and projected) fatphobia, I think, because if I’m limping, or leaning, or need one of the reserved seats on the bus, or otherwise demonstrate that I’m having trouble getting around, then it must be because I’m “too fat” in the eyes of other people. If I need to get to a bathroom RIGHT NOW, then the fatty must have eaten too much bacon in her lard sandwich. If I start having trouble breathing in public, especially when I’m near someone smoking outside, it’s probably because I can’t carry around my own weight, rather than actually being asthmatic.

    On the other hand, at the risk of wallowing in my privilege, I sometimes wish my disabilities were more visible so that I don’t have to explain myself when using the disabled line at the DMV because I can’t possibly stand for 20 minutes in the general line.

    I guess I need to learn and accept that NO disability is an easy disability, and it’s okay to be a gimpy fat chick, no matter how any of those labels applies to me.
    .-= Jennifermf´s last blog ..How are YOU? =-.

  7. Thanks for sharing this post. ive gone from having disabilities that sighted people couldnt perceive, to some things sighted folks could perceive, and the daily fallout from that change is serious. i’ve had so. many. people say to me they “wish the had a visible[sic] disability” so that sighted people would see them, and they could get some kind of “recognition”. This is just infuriating for so many reasons(which is a completely other post). Its kind of cool to read something talking about passing as ENabled, what that can mean, how that changing for a moment or something longer, impacts you.

  8. There are some really thought-provoking comments on this thread; thanks, all.

  9. I’m in a slightly different position – I’m fat, and that’s always visible. People who know about my cancer and resulting problems tend to treat me more positively than people who don’t, because I suppose it makes my fatness “not my fault”. I hate this good fattie/bad fattie dynamic, but I have to say sometimes I benefit from it.

  10. Probably 99% of my life outside the apartment is one of three things: Work, medical care, and grocery shopping.

    I have to very carefully negotiate my passing in the first two of those — depending on what sort of prejudices I would face in a given situation (being treated negatively or like I’m helpless because I am honest about my condition? or being denied necessary care/accommodation because I have to “prove” that I really need it before people will cooperate with me?).

    The third, well. It only comes up when I need to park in the disabled parking (which is going to come up more often for me soon, as it gets colder and wetter) and have to very strongly fight the habits I have that are meant to make me pass — so that people don’t give me the glares and harassment about it.

  11. i dont know where the end of my comment went! it should read:

    “Its kind of cool to read something talking about passing as ENabled, what that can mean, how that changing for a moment or something longer, impacts you…without falling back on that tired trope.”

  12. Ah, sorry – since Anna was talking about passing wrt chronic pain I wasn’t sure whether you wanted input about passing regarding disabilities that were entirely different. (My usual beef is with sounds that are just plain too loud – sirens – but augh, those awful high-pitched sounds. I was at a two-hour video lecture the other day and we had terrible, terrible feedback. At the end of the two hours I’d given up on making the people I was with comfortable and simply started going ball-shaped as soon as anyone other than the speaker unmuted their microphone.)

    Passing… I have one disability that tends to wander in between semi-visible and invisible, namely a speech disorder. (I’ve seen someone else classify it as invisible, but I think that really depends on severity – I have times when I can’t say three words without it being very very obvious that my speech is not fluent and although that’s not *visible* in the sense of “anyone who looks at me can tell”, it’s not exactly what I’d call invisible either.) There are advantages and disadvantages to both; if my speech is pretty fluent I don’t have to worry about weird reactions from complete strangers when I’m just trying to go about my business and things are generally less stressful for both parties. OTOH, there is something very comforting about knowing that anyone I’ve spoken to for longer periods of time knows about the stutter. If my speech is more fluent, I start getting into quandaries – has this person I’ve known for several weeks now noticed? Oh god, what if they haven’t, what will they think if I suddenly start to stutter now? More fluent speech often goes along with more anxiety about speech in my head, because suddenly *not* stuttering is a feasible option. And, of course, if I’m mostly fluent trying to talk about it with friends is usually a singularly unhelpful experience. “But you hardly stutter at all! Why do you worry about it?” At least when I get stuck for ten seconds every time I try to say my name people don’t tend to make that comment.

    When it comes to neurotypicality, things are much simpler – I’m honestly flat-out terrified of not passing. I know that people tend to react badly to noticeably “off” body language, social behaviours, etc. – pretty much all of my “passing” behaviours have been built up over time, so I remember how people reacted to me when I *didn’t* do these things and oh, I do not want to go back there. Although the mental effort that is involved is nothing short of massive, and I’m pretty sure I’ve developed some sort of social anxiety thanks to the constant terror of screwing up.
    .-= Kaz´s last blog ..randomness =-.

  13. Hi, romham!

    You said:

    i’ve had so. many. people say to me they “wish the had a visible[sic] disability” so that sighted people would see them, and they could get some kind of “recognition”. This is just infuriating for so many reasons

    Yes.

    The problem I have with the terms “visible” and “invisible” disability is that whether a disability is “visible” or not depends on who is looking, and on what society tells us various cues mean…or that they are cues in the first place.

    As an example: one side of my body is weaker than the other, and I have a gait. I also have a spatial impairment, which makes it harder for me to find my way places and understand spatial language. I have difficulty understanding things that are “just” shown to me without being verbally explained. In college, I told my fencing teacher about my spatial impairment, to help him teach me better.

    So. After I told him that, he still kept saying things to me like: “Stand at a 45 degree angle.” (Huh?) Or “Stand here” or “like this.” When I went to tell him that this stuff does not work for me, he said: “All I notice is that you have trouble with some of the stances.” (which is probably both left-side-weakness and spatial impairment related) Later, he threatened to fail me.

    He’s just one guy in a long line of people who recognize my gait on some level, but have trouble conceiving of other impairments of mine. This sort of thing happens because society tells us that “limp” goes in the disability box. Whereas society has *not* told us that “doesn’t look me in the eye” or “young person gets lost three blocks from her house” can go there, too.

    I’ve written more about the (false) visible/invisible dichotomy here.
    .-= Tera´s last blog ..New blog of awesomeness =-.

  14. Tera, thanks for the read 🙂
    One of the big things i hate about the “visible”/”invisible” language around disability is just the basic ableism in it. Which gets to some of what you were saying: It depends on who is looking. People are assuming the “looker” is a sighted person, always, every time. And that just burns my biscuits.

  15. That’s a great point, romham; the visible/invisible binary is REALLY problematic. I’ve noticed that some people seem to think that unless you have a conventional marker of disability (ie: cane, guide dog), you’re not “really” disabled. Baloney sandwiches to that.

    I should probably mention that I also have mild CP and a limp because of it, but have learned how to walk so it’s not immediately noticeable (and I *still* get questions from strangers like “Why are you limping?” “Is something wrong with your foot?” and on and on). That’s for another post, though.
    .-= annaham´s last blog ..IIB v 1.0 =-.

  16. Hi, romham,

    You’re very welcome 🙂 The thoughts in that piece were inspired by some writings from Amanda Baggs (“What people think they know“) and Cal Montgomery (“ A Hard Look at Invisible Disability.“)

    One of the big things i hate about the “visible”/”invisible” language around disability is just the basic ableism in it….People are assuming the “looker” is a sighted person, always, every time. And that just burns my biscuits.

    I’ve never thought of that! Oh my goodness yes!
    .-= Tera´s last blog ..Rosemary =-.