Article written by :: (RSS)

Lauredhel is an Australian woman and mother with a disability. She blogs about disability and accessibility, social and reproductive justice, gender, freedom from violence, the uses and misuses of language, medical science, otters, gardening, and cooking.

This author has written 1617 posts for Hoyden About Town. Read more about Lauredhel »

57 responses to “101: A note to able-bodied readers”

  1. annaham

    Thank you for posting this, seriously.

    I know this is going to sound cold to some, but whenever some able-bodied person brings up, as you put it, “whether [he/she] had a cold last week, not about how Panadol or visualisations or a snifter of homeopathy fixes you right up ” or how their kid was sick last week, all I can think is, I don’t care. Most people who have never experienced chronic illness have *no idea* what it is like, and it is not my job to sympathize with them and/or manage their feelings because they broke their ankle once, and so they totally know what chronic pain and/or disability is like! I know that some TABS are trying really, really hard to relate, but sometimes it just does not work.

    I make this comparison with some trepidation (as I’m white and very privileged in ways other than the fact that I’m disabled), but the reactions of many TABS to various posts about disability around the feminist blogosphere sort of reminds me (quite a bit, actually) of some privileged, white feminist bloggers’ reactions to posts by WoC that explicitly call out this privilege, or, hell, even the recent Feministing/Feministe trans v. cis blowup.

    annaham’s last blog post..There’s a Storm Gathering…A CAMEL STORM.

  2. Lis

    Thank you for this post (and for the old post, since I USE that chart). I encounter this most with mental illnesses being “just like” some normal human behaviour, and I don’t know whether to be endlessly frustrated that people don’t get how my life is different than theirs and has specific things that just plain suck which their lives do not, or be pathetically grateful that they’re trying to understand me and not relegating me to bizarro-world.

  3. Deborah

    I’m sorry.

  4. Sophie

    It was interesting deconstructing my reactions to this, since on the one hand we have somewhat similar health problems, but on the other hand mine are such that I don’t need to use pain medication more than your average person. So on my first reading the responses didn’t seem so bad.. but then re-imagining them as talking about stuff where *my* experience is far out from normal (in the same way yours is with pain medication) they became much more frustrating.

    Thinking about similar posts I’ve made on my blog I *personally* think it can be ok for TABS to talk about their experiences but only if its done in a way which acknowledges that it’s Not The Same Thing. I think a lot of those comments would have been better if they had finished with “..and since it’s ok for ME to use pain medication for my minor temporary pain how much more appropriate is it for YOU to use it?”, though once that point has been made it doesn’t need to be repeated, and as you say it’s hard for people to grasp that having a symptom chronically is not just like having it temporarily but more so.

    But in this context I am effectively able bodied so may be totally wrong, and this is your blog so you get to say what is and is not appropriate.

  5. Armagny

    ” the bleeding mole you found on your dick last night. ” I must say, perhaps not quite the right example for the males. As sensitive as I try to be to the nuance of being a male and weighing into primarily female topics, if I woke up and found the aforementioned I would not stop screaming hysterically until the negative test results were in my hot little hands.

    That aside, and said with a smile, I acknowledge and completely agree with your post and will keep the sentiment in mind going forward.

  6. Sophie

    Armagny: It would be a major thing worthy of discussion in the right context, yes, but still off topic in a post about menstruation.

  7. Mary

    I would not stop screaming hysterically until the negative test results were in my hot little hands.

    But to me an ongoing feminist discussion about bodies might still not be the place to express your dismay about it: by imperfect analogy, I would assume (as a TAB person, albeit not a perfectly healthy one, but who is?) that even if one has influenza and is in a great deal of pain and has reason to worry about secondary infections or a long recovery period, that a discussion around disabilities is not the place to bring it up.

    Thanks for the post Lauredhel, it is good to have reminders that silence and discretion and listening are important when privileged.

  8. Chas Dean

    Oh dear.

    I personally treat disability discussions the same way I treat feminist discussions, with my Golden Rules -

    Rule #1 – keep my trap shut 99% of the time and try to learn something.

    Rule #2 – “1% of the time” is a lot smaller than I think it is.

    FWIW I’m glad to see disability issues here and the (mostly) constructive discussions they generate. Back to lurking I go…

  9. Armagny

    Sophie, Mary, I know. Don’t worry, I don’t think I’d be blogging at all at such juncture.

    I think as a wider concept the key to this is that by bringing your own, contextually irrelevant concerns into a thread (or conversation or other dialogue) you diminish the value of the concerns previously being parsed.

    Anyway, now I’m doing exactly what we were talking about so I’ll zip it here!

  10. WildlyParenthetical

    I wouldn’t have posted this on the post itself, I don’t think, but since this kinda has a post all of its own…

    I think it’s interesting, actually, that when someone raises something about some technique for dealing with a particular ‘health’ issue (for want of a better phrase: I’m meaning, like, ‘pain in general’, or other things that, to some extent, testify to the *continuum* between ability and ‘disability’), TAB really do have things they seem to want to say about it, about their experiences with it. This would seem to indicate to me that there are actually very few spaces and ways of talking about the minor losses of ability that TAB people go through and negotiate fairly regularly. And I suspect that this is partly because the distinction between ‘able-bodied’ and ‘disabled’ is so rigorously policed. In other words, part of the problem with ableism is that it requires TAB to kind of push aside all the ways in which they negotiate their own falling away from the ideal of ability that our culture sustains: to participate in the illusion that normalcy is naturally achieved, rather than requiring labour in order to achieve it. What’s interesting to me is that this means that articulations of disability become almost a kind of relief for the TAB: (problematically) ‘finally a space in which to talk about the non-achievement of perfect normalcy!’. This is in no way to diminish what you’re saying, Lauredhel; it’s entirely problematic that the few spaces the already-disenfranchised group called PWD can wind up being mostly about TAB. I just think it’s intriguing to pay attention to the politics at work around ability, because whilst there’s no doubt they screw PWD over much much worse, TAB lose out too…

    And the politics of pain, which is kind of what wound up being discussed in that other thread: who can and should feel pain? Why do we not have very sophisticated ways of having those discussions? Why are we tempted to situate pain as something that ought to be borne with? Even something that earns you a ‘good character’? And in what ways are pain and disability thought to ‘naturally’ intersect, so that there are times when pain is treated through normalisation?

    And now I’m rambling. ‘pologies.

  11. Meg

    I have to respectfully agree with Cath the Canberra Cook’s comment in response to Lauredhel’s on that thread. It’s tagged ‘disability’ as well as ‘life’, and ‘medicine’, but the comic wasn’t specific to disability but painkillers. Of course I do agree there is a world of difference between talking about medicines for common colds and chronic pain/disability and it seems pretty insulting to think otherwise. But I think if the post is distinguished better as disability specific, the likelihood of others bringing in contextually irrelevant experiences diminishes.

  12. WildlyParenthetical

    I apologise, Lauredhel. I had thought that this thread was about the politics of how these threads worked, and that was what I was commenting on.

  13. Meredith

    I’m going to say this, and I might regret it, but right now I don’t really care.

    Hey, you. You there, with the TAB privilege. All of you. From me, another TAB, to you? SHUT UP. Seriously.

    Lauredhel makes one post asking for your respect and understanding, and you come in here and whine about how there’s no clear distinction between TAB and PWD, or there’s too much distinction, or something, and how this is so meeeean, and how no one listens to your complaints about your headaches and whatever. Step away from the keyboard and click the X at the top right of this window.

    There is NO CALL for you to come into a safe space like this with that kind of breathtaking willful ignorance. Especially not when that was, oh, I don’t know, the entire point of this post. Use common sense and common courtesy next time.

  14. Chas Dean

    Aw.

    Just goes to show, it is worth occasionally delurking.

    Carry on, all. I’ll be here with my microcookie. *very small noms*

  15. Pen

    Thanks Lauredhel. Bloody good point.

  16. Sophie

    Ack, sorry for going off on a tangent there.

    I think the lesson that needs to be learned here (by me as much as anyone): there is nothing wrong with being inspired by a post into meandering thoughts on a tangential topic. But in this sort of context you should *express* such thoughts in your own blog or to your cat or something.

  17. annaham

    But I think if the post is distinguished better as disability specific, the likelihood of others bringing in contextually irrelevant experiences diminishes.

    Are you fucking SERIOUS? We have to “distinguish” disability posts now? Saying that Lauredhel did not “distinguish” the post correctly is BS, frankly–particularly if you’ve read this site for a while. It’s not that hard to figure out.

  18. Theriomorph

    Thanks for this, Lauredhel.

  19. SKM

    This post is pure solid gold-dipped wisdom. I love it. Thanks for this; I’m going to be linking to it!

    And, what Annaham said about adequately “distinguishing” disability posts. Plus, that’s what the Diability tag is for. Read and heed, folks. Please!

  20. SKM

    Errr, “Disability tag”. Also, I am now having trouble seeing how something can be both solid gold and gold-dipped, even though I typed that. This post is just that good–it’s solid gold, then dipped in gold! For extra goldness!

  21. amandaw

    Just here for support.

    For the benefit of those with able privilege:

    This moment is one in which a seemingly small offense sparked a very large and harsh response.

    You see this a lot. Yeah, it seems small and unimportant in the larger scheme of things, when you look at it on its own. But here’s the thing. You have the benefit of looking at this on its own. You get to separate it out. Lauredhel doesn’t. She lives those “small things” every moment of every day. She can’t just cast aside her entire life experience previous to this moment so that she can look at this one small thing all by itself.

    This is the proverbial straw on the camel’s back. It’s awfully nice you can see, and dismiss, that one small thing. We can’t.

  22. Dina

    I have in-laws who have Cystic Fibrosis. I once complained in front of one about not feeling well. I think I was a little embarrassed–remembering what he goes through on a daily basis. To my surprise, he was VERY kind and sympathetic. He was so incredibly sweet. I think he understood that although I don’t suffer frequently like he does, I still can feel like crap.

    In comparison, when I worked at the Cystic Fibrosis camp, there was a guy who liked to talk on and on about his problems. Whenever I talked about one of my own, he laughed it off and dismissed. If you don’t have a fatal chronic disease than you must not have any problems.

    When my son broke his arm, my parents were sympathetic. They didn’t roll their eyes and say “Don’t look for us for sympathy. Our daughter got hit by a car. She spent months in the hospital. A broken arm is nothing.” They knew that for us, THIS was scary.

    It’s all relative.

    Someone with mild asthma can tell someone with a cold. “Oh stop whining. You have no idea.”

    Someone with Cystic Fibrosis can tell someone with mild asthma. “Oh get over it. At least your illness isn’t fatal.”

    And someone with pancreatic cancer can turn to someone with Cystic Fibrosis and say “Oh get over it. You have YEARS to live. I’m going to die in a few months.”

    Pain is pain.

    Sickness is sickness.

    It’s unfortunate that some people feel like crap on a regular basis. But that doesn’t erase the pain of people who have it infrequently.

    Now in terms of the comments about getting rid of a headache without pain medicine…..I do find that’s annoying. It’s unsolicited advice. And I really have low tolerance for people who believe they have a miracle cure that will help everyone.

    BUT I have a feeling that person would give the same advice to both acute and chronic sufferers.

    In terms of comparing able-bodied people commenting about disability to men commenting on a feminist blog….I’m not sure I feel it fits.

    A man can’t truly know what it’s like to be a woman (unless we’re talking about reincarnation or something). But I think an able-bodied person CAN have some ideas of what it’s like to be disabled. Maybe I’m horrible for saying this. I don’t know. I think though that someone with a bad case of the flu can sit there and imagine how they might feel if they were sick like this on a regular basis. I’m guessing that SOME Chronic illness symptoms resemble the temporary symptoms of acute illness. I can’t say I have ANY idea of what a migraine headache is like. I have had nothing that remotely compares to it. But I can see someone with Cystic Fibrosis and relate to SOME of their experiences. I know what it’s like to feel congested. I know what it’s like to not be able to sleep because I’m coughing so much. I know what it’s like to run to the toilet because my food hasn’t digested properly. I don’t know what it’s like to know the symptoms are just going to keep getting worse. And I don’t know what it’s like to know I’m going to die from it all. But I can imagine. And imagining is what gives us empathy.

    I just think the empathy needs to go both ways. Even if one’s pain and experiences are worse than another person’s, I think we still need to be kind, caring, and supportive.

  23. Dina

    Thought of something else….

    I think a better analogy (vs. the men writing on a feminist board) would be childless people giving parenting advice on a parenting blog. VERY annoying. I think it’s bad enough getting advice from other parents. But getting advice from people WITHOUT kids….Oh, that REALLY gets to me. They should not be giving advice.

    However, I would be okay with a childless person complaining about their niece having a tantrum while babysitting. I don’t think I’d think/say “Oh give me a break. You just have to deal with the child a few hours and then you get to go away.” I’d think/say “Yeah. It’s tough. I know because I’m a mom. I have to deal with it on a regular basis.”

    The analogy also fits because as childless women often cross to the other side, so do able-bodied people. One can change in nine months. The other can change in a second.

    Dina’s last blog post..Day 31….in which we search for our camera

  24. Gossamer

    Hi. De-lurking to say I really appreciate you, Lauredhel, talking about this. I’m a disabled person, and when friends/family talk about their illnesses and fatigue, I try to be supportive and understanding because, hey, I love them. But it’s another thing when someone comes into a thread that is about disability (there are so few of them in the mainstream blogosphere), and makes it all about their relatively minor ailments. I fully understand that disabled folk don’t have a monopoloy on pain, but it would be nice if people would be more understanding about the different ways in which pain affects our lives. It’s one thing for a TAB person to take motrin for a headache, it’s another for me to have to fight the stigma and contempt I (not all the time, but still far too often) face in the medical establishment to get the basic pain control I need. I would not, of course, want anyone to suffer unnecessarily with pain due to any misguided notion that “pain must be X degree of unbearable before medication is acceptable,” but please to aware of the distinctions between OTC and the struggles many disabled and chronically ill people face to obtain adequate pain control. I’m sorry if I keep going on, but I’ve been in a place where I was maxed out on my dosage of pain meds and had no option but toughing it out. Which, in my case, looks like sobbing in bed ’til the exhaustion tips the scales and sleep takes over. /shrug

    Anyway, thanks for providing a space for this discussion. I really appreciate it.

  25. Sweet Machine

    Dina, I really don’t think that designating a given post as space for a disability-centered discussion (and therefore not for TABs) is in any way negating the pain or empathy that TABs might have for PWD. It just means that that particular space is not FOR those people. Saying “I can imagine how you feel, sorta” is still making it about *you* and not about the person you’re supposedly listening to.

  26. amandaw

    I’m entirely sympathetic when my best friend talks about his back pain. And he, a trauma survivor, is sympathetic when I talk about my own anxiety and neuroses. That’s because 1) we know each other well, so we know where the other is coming from and 2) we don’t use those to say “therefore I know exactly what you’re going through!”

    Both of us pretty regularly append our statements with something along the lines of: “I know I can’t ever fully understand” and “I understand to what extent I can”… etc.

    I think there’s a pretty big distinction between that kind of empathizing, and presuming that any pwd should be open and friendly when you bitch about your sore knee because their disability should make them magical crips that help you process your emotions and heal your inner pain.

    Sorry to be harsh but, well. You don’t get to walk in here and try to pull an appeal to authority, TO A PWD, by saying “this one pwd I met one time was friendly and sympathetic toward me when I compared my pain to hirs.” You have no idea what that person was thinking. They may have been straining to be nice because they’ve been taught — by people like you — to always be friendly and smiling and ready to take on anything that TABs want to dump on them. They may have been totally sympathetic! I don’t know. YOU don’t know. So you don’t get to pull that card. Period.

  27. annaham

    Dina: But I think an able-bodied person CAN have some ideas of what it’s like to be disabled.

    In terms of comparison, it can be helpful to make TABs sort-of aware of what it might feel like, at least in terms of Disability 101. But they will never physically know what it is like to be in my body. I cannot put into words what it is like, for example, to be stuck in bed for most of the day–and unable to do anything, or even walk–because of pain and fatigue. There is no clear way, at least for me, to convey that to an able-bodied person who has never had that experience. Awareness and knowing are different.

    And I agree that pain is pain, but having a headache is NOT THE SAME THING as having, say, chronic migraines. I’m not going to say that someone with a bad headache should just “get over it.” What I am going to say, however, is that they should recognize that it’s different; PWDs do enough “explaining” and educating of TABs without having to sympathize with their cold or headache. It is not the same thing. This is why safe spaces for PWDs are so critical; by the same token, this is why it is critical for TABs to take a long, hard look at their privilege–and to consider listening instead of rushing to “sympathize” with PWDs by commenting about this one time that they had a really bad headache, or something, so they know what being on medication is like.

    Someone with Cystic Fibrosis can tell someone with mild asthma. “Oh get over it. At least your illness isn’t fatal.”

    This seems like a bit of a straw-person argument to me. They can, theoretically, but since many PWDs have this sort of shit hurled at them almost daily, they might be, oh, I don’t know…sensitive enough not to say something like that. I’ve had (able-bodied) people tell me that Fibromyalgia is “nothing” compared to what “some people” go through, which is a really confounding statement for someone who is NOT in pain and is NOT fatigued to make. I cannot “change back” to being able-bodied.

    There is a huge difference between a muscle ache and fatigue from (for example) overexercising and a condition such as Fibro or CFS/ME. The person with a temporary muscle ache has the luxury of being able to rest up for a while and then going back to working out. Many of us with disabilities, chronic conditions and/or chronic illnesses do not have that luxury.

    annaham’s last blog post..Oh, Old Posts…

  28. amandaw

    But I think an able-bodied person CAN have some ideas of what it’s like to be disabled.

    Your privilege is showing.

  29. Sophie

    Dina: I’ve only been disabled for about 6 months, before that I was chronically ill but not to the point of disability for about 8 years and before that I was sick a LOT but not chronically ill (there’s a subtle difference!)

    So while I cannot say from personal experience what it is like to be a man, I do know what it is like not to be chronically ill or disabled..and it is NOT THE SAME. You can’t imagine it. I couldn’t imagine it.

    When you have temporary pain you can say “Oh well, I’ll just take the day off until it goes away”. When you feel like that EVERY DAY, and know it will *never go away* it really changes how you relate to it.

    And I agree with amandaw, your “PWD shouldn’t be smug and unsympathetic to friends having a bad day” argument is a straw man, because we’re *not* (well, no more than TAB people).

  30. SKM

    I think though that someone with a bad case of the flu can sit there and imagine how they might feel if they were sick like this on a regular basis. –Dina

    No. You are mistaken. I have been a generally healthy person with the flu, and I have been (and am currently) a chronically ill person. It is totally different. There is a moment when it clicks; when you realize that this is never going away. And I could not have imagined that before experiencing it.

    Besides, when a thread is tagged Disability, putting one’s able-bodied self at the center (I feel your pain! No really–let me talk all about it!) is rude and dismissive.

  31. Lis

    The other thing TAB people don’t experience and can’t really empathize with are the social aspects of disability. Before I became visibly disabled, I never imagined that people really would watch me in public and tell their friends I was a faker if I took two steps without my cane. When I bring up that experience, disabled friends say, “Yes! That thing! I know that thing!” while TAB friends, even those who’ve had temporary leg injuries, have no clue what I’m talking about and can’t believe that anyone would be so rude.

    Sometimes you really have to experience it to know what it’s like.

  32. amandaw

    And the more I think on it the more it bothers me.

    YOU, the PRIVILEGED person, do NOT get to tell the oppressed person whether or not you can understand their experience.

    PERIOD.

    That is THEIR call to make. Just as it is THEIR call to make whether or not you are an “ally.” Or whether you deserve thanks for something you’ve done for them. Or whether you’re a good advocate for them.

    Again: YOU don’t get to decide that. THEY DO. PERIOD.

  33. Accessibility, seating, and the energy budget — Hoyden About Town

    [...] [Commenters: Read this first.] [...]

  34. Lindsay

    First rule of holes: when you’re in one, stop digging.

    You can get better from the flu. There is no cure for fibromyalgia. You can take off work when you have the flu. If i took off work every time something hurt, or if i was flaring up, i wouldn’t have a job, wouldn’t be able to get a job. The flu is simply NOT an accurate means of understanding what sort of life i’m living.

    You may think that comparing our (unequal) pains may be an exercise in empathy, but just as often as not, it comes across as invalidation. Whether that invalidation is unintentional is largely irrelevant. Sometimes comparing our unequal pains just highlights the differences between us; your flu may keep you out of work for a few days, but i can’t let my fibro keep me home every day that i don’t feel well – i’d never be able to keep a job. Your headache might keep you from going out dancing with friends tonight, but fibro took that off my calendar YEARS ago, and has no intention of ever letting me put it back on there.

    I know there are some able-bodied people who want to sympathize, want to understand – but as someone with a disability, i need you to understand that sometimes you can NOT understand. I can come up with a list of 50 things that i think you take for granted as a person without a disability; you may personally be exempt from half of that list, but that doesn’t mean that list impacts me any less.

    Also: removing the straw that broke the camel’s back does not enable the camel to unbreak its back.

  35. lauredhel

    Lots of people said this, in various ways:

    So while I cannot say from personal experience what it is like to be a man, I do know what it is like not to be chronically ill or disabled..and it is NOT THE SAME. You can’t imagine it. I couldn’t imagine it.

    I’m going to pull out just one example of this from the previous comments thread. MsLaurie related her experience with a mild touch of the blehs:

    Went to the doctor the other day with cold-y, flu-ey, meh feelings. She asked “have you taken anything for it?” I said, no, I didn’t want to disguise any symptoms before being seen… she just sighed and said “never make yourself more miserable than you have to be!”

    Apart from the very obvious that a meh feelings for a day or two is not even slightly the same as dealing with disability, something else that I’m guessing has never crossed this poster’s mind is the fact that if she’d had these symptoms for a few months or years, her doctor’s reaction would likely be very, very different. Able-bodied people with a few days of symptoms are treated as though their symptoms have an organic basis, as though their complaints are valid, as though it is important for a healthcare practitioner to address the presenting complaint and do something about it. People with chronic illness that many in the medical profession considers “poorly defined” (CFS, for example, is very well defined, but people choose not to educate themselves on that) find themselves in a completely different situation. Mostly middle-aged women, their complaints are dismissed, are attributed to causes that aren’t causing them (“stress”, whining, fat, yadda yadda), and above all, generally do NOT met with the attitude that their pain needs treatment, and that they don’t have to be in pain.

    Take painkillers and time off for a couple of days or a week, you’re a poor hardworking little bee who’s hit a brief setback, you’re offered appropriate symptomatic relief, your paycheck keeps coming in (usually), and people send you get well cards and bring you soup. Take painkillers and time off for a couple of years, you’re a bludging slacker welfare cheat, you’re denied analgesia and have all manner of other dangerous scripts and/or dismissals and/or accusations thrown at you (“Pull up your socks! Stop whining! Exercise through the pain! Here, take this antidepressant cocktail that makes you horribly ill! Patient is noncompliant with treatment!”), and you are disappeared from the lives of most of your friends.

    I’m in about the biggest position of privilege someone could be when dealing with the medical profession – I’m one myself (ok, if I were a man that might have also made a difference) – and I’ve been downright disgusted by the way I’ve been treated by some of my colleagues: as a useless, untrustworthy, unreliable piece of scrap. Present doctor excepted.

  36. amandaw

    Honestly, there are so many dimensions to ableism that TABs have *no* concept of. Even the ones who are fairly well educated and caring about it.

    I have to carefully consider every word I speak when I’m in a job interview, how I present my personal history, so as not to let on that I have a disability and spent my “best years” (ages 16-21) stuck at home unable to work or attend school. So that they won’t think “Well then, how come she can do this?” or any number of other things that get my resume tossed right in the shredbin.

    I have to sit there and rehearse how I explain my condition to people when it comes up. Depending on context, I might have to deny my own experience to people to keep from causing trouble. Because I get sick and fuckingtired of causing trouble everywhere. It’s exhausting.

    I have my insurance company on speed dial. I have my speech prepared every time I have to call and ask why I’m being held up here, why they refused to pay this or cover that. I’ve gotta make one of those calls today, in fact.

    Any time I go out on a walk, I have to consider not just how far I can walk — but whether I can make it *back.*

    I spent three hours this morning in the fetal position, in waves of the second-most awful pain I have ever felt (with tinges of the first-worst) that came every two minutes without fail, the kind where I couldn’t budge my toe it hurt so bad. This kept me from showering (it had been five days since my last), much less doing anything important.

    OK, maybe you went through something like that once. But how does your life change when you face the prospect of that every morning you wake?

  37. Annie @ PhD in Parenting

    Wow. Thanks for this.

  38. Melissa McEwan

    I’ve got nothing of any value whatsoever to add, but I do want to just say thanks for this thread, Lauredhel.

  39. QoT

    Lauredhel, there is nothing unreasonably pissy about that comment. I cannot fucking comprehend the people saying “Oh, but that diagram totes applies to my migraine, too!”

    I just spent a long weekend on a sofa recovering from having wisdom teeth extracted and carefully timetabling my next doses of panadol. And that graphic still did not fucking apply to my situation.

  40. Caitlin

    While I try to consider myself TAB (no major diagnoses except the mental), temporary seems to be measured in 1/2 day to 2 day spans. When I’m lucky.

    I get really sick of the friends who compare the nasty headache they had last month to the head, body and all-over ache I’ve had for the last umpteen years. I finally have a doctor who’s been able to start figuring out some of the issues (though, that doesn’t mean *cure*, and only sometimes means manage– usually, well, at least you know *why* now), and I’m treating stuff as well as I can to be told that X condition doesn’t look good on my record (WTF???), that I shouldn’t take pills (they’re *poison*, and you’ll be addicted and, and, and…), that I should use visualisation instead (I do: I visualise my foot meeting their ass) or it’s “all in my head” (because since I have a psych Dx everything must be caused by that Dx, not that someone could have more than one issue).

    And that I’m “weak” if I don’t just ignore it. I’ve done that. It gets to the point where my legs buckle under me (or I pass out) and that’s pretty hard to ignore.

    But I have to hide most of that if I want to keep a job, and not be considered “hysterical” or “hypochondriac” or just plain whiny and a downer that friends want to avoid, so when I do break down and complain, I get hit with “You don’t *look* bad” and “You never said anything before” with the strong implication that I just made everything up. Because if it were real I’d have a (one) diagnosis, I’d be getting treated and I’d be better by this time next week.

    Thank you.

  41. anarchafemme

    This is an amazing post, thank you for writing it.

    amandaw: it’s exactly that that TAB have no concept of; even if they had a similar, very temporary experience, having to face it every single day is incredibly different, both on how it directly affects very concrete things about one’s life, and also in the emotional part. Part of me is always mystified when a TAB friend of mine has the flu, or something, and they see the positive in that they get to slow down and take time off and rest; the entire concept of being able to voluntarily scale back my life because I’m sick is completely foreign to me, because I have to do whatever I’m able to do on each particular day, because it’s not going to be better next week.

  42. P.P.

    As a person with able-bodied privilege, and a social worker and an activist, I would just like to say thankyou to all of you who have shared your experiences here. I strongly believe in the concept of stepping back, shutting up, and allowing space for less privileged voices to shape their own discourses surrounding social issues, and this thread, which I’ve read through several times now, has been very enlightening.

    Even with my heightened awareness of social issues and privilege and having PWD around me, it’s very hard not to say ignorant dumbass things that show my privileged perspective.
    Thankyou to those who shared. I appreciate it very much.

  43. oldfeminist

    Watching my mother go through old age and severe illness and disability, talking with her about her feelings and helping her get around the stupid pointless barriers erected in her way, gave me a little bit of a window into what she had to deal with.

    But I know I’ll never know what it’s actually like unless I go through it myself, because even if I understood each challenge she faced, which I know I don’t, that isn’t the same as actually having to face it.

  44. Sami

    Dude.

    Pissiness so not inappropriate.

    That graph was a brilliant revelation for me – as in, I plan to print it out and put it somewhere conspicuous. Because yes, you’d think I’d have learned that by now, and yet no, I still haven’t, and people who think that their sniffles or mild headaches are even vaguely comparable are kidding themselves.

    You don’t know what it’s like to live with chronic pain. You don’t. You can’t. You can’t imagine it, you can’t scale up from a temporary illness to a permanent one – because it’s not just about what it, physically, feels like at any moment – it’s about how it grinds at you, how the very permanence of it drags at you.

    As for marking posts about disability better – are you kidding me? You sit in your joyful privilege of a life spent without the ongoing dragging agony of chronic illness or pain, and you want to be spared even the concept of being respectful of those who don’t get that privilege, and think it’s unfair of PWD not to want your sniffles rubbed in their faces?

    Cry me a fucking river. It has, quite literally, been years since I spent a single moment not in pain. Even a second. I can’t imagine any more what it’s like not to be in constant, unceasing pain – and once upon a time, I lived like that. I spent days without pain… I think, anyway. I can’t connect to that concept even in my imagination or memory any more.

    And you can’t know what it’s like to live like I do. Me or any PWD. If you could you wouldn’t dream of assuming that any kind of temporary affliction could possibly be comparable.

  45. Rio Iriri

    I will say this regarding giving oneself permission to take medication: My mother had been experiencing arthritis pain for years, but she’s one of those types who not only won’t take a freaking aspirin, she never approved when other people did either (growing up with dysmenorrhea in that household, OY…).

    And then she got prescribed Vioxx or Celebrex for something, and she could not believe how much and how long she’d lived with chronic pain until suddenly it was gone. Until the prescription ran out, that is. And now she understands why I need my pain medication.

  46. Jesse the K

    I’ve been interested in disability rights since I was in primary school. I’ve been impaired (mental + physical) since ca 13. I’ve been on the disability dole (US: SSDI) since 1993.

    Thank you for an outstanding thread which taught me a lot!

  47. nein09

    Thank you for this. This is my first visit, and I saw this post linked from a blog that I read all the time.

    My partner has a chronic illness. Lots of people think they understand it. Lots of people try to identify with it, and end up saying and doing lots of stupid things because of it. And still it wasn’t until I read this post that the penny dropped and I realized that every person with a disability or chronic condition has to also put up with that level of stupid.

    I think I’ll be sticking around and reading more. And my partner gets a big hug when he gets home.

  48. Mindy

    *lurking, learning and sorry for not reading tags*

  49. Mary

    For me the important distinction is between my symptoms (headache, muscle pain, nausea, whatever) and my disability.

    My headache is no worse than anyone else’s, my muscle pain isn’t somehow more valid than a TABs, my nausea is no more spectacular. What turns it into a disability is that I can’t, like a TAB, take a day or two off work to hide in bed and recuperate, dose up on max-strength painkillers, let the laundry slide until I’m well enough to deal with it, tell my friends I’ll see them next week instead. Because it already IS next week. And it’s been next week for years. And yet I am feeling no better, and the laundry still needs doing, and I have to go to work, and if I take any more of those painkillers I’ll be risking serious damage to my internal organs, and you know what, I’d quite like to see my friends as well.

    No TAB has had that moment of realisation… when the novelty of coming over with a bunch of flowers and some fresh orange juice has worn off for your friends, and the sympathy of the sickroom has dissipated, and now you are expected to either die or get the hell on with your life because being “ill” forever is not an option in our society, even if it is the reality you face.

  50. Andrea S.

    Dina: The trouble with the idea of trying to extrapolate from one TEMPORARY experience with the superficial symptoms of some short-lived illness to a life-long disability is as follows:

    1. Most people’s imagination is usually far more limited than they think.

    2. It’s not just about the physical sensations of the symptoms that you experience. Those are actually, for most types of disabilities, secondary.

    Several people in this thread have talked about how chronic pain and fatigue simply grind you down in a way that JUST. DOESN’T. HAPPEN. When it’s temporary. I don’t have chronic pain (only recurring) or fatigue so I won’t try to address that. But what I DO have experience with is the SOCIAL aspect of disability, which someone else had mentioned. Though admittedly the social aspect of being deaf, or having any of my other disabilities, is different from the social aspects of pain/fatigue conditions, so you can’t really quite extrapolate from my description here to those types of experiences, or vice versa. But this is what I know, so I’ll give it a shot:

    For me, simply being unable to hear certain things is actually a fairly trivial aspect of my experience as a Deaf person. What is far more infuriating for me is how OTHER people respond to me being Deaf, and how completely unnecessary barriers prevent my full participation in things that could be so easily made accessible. The way that service providers who are supposed to be legally responsible for ensuring my access by providing me sign language interpreters refuse to do so, leaving me with no services. The way that some hearing people refuse to look at me so I can lipread them even after I have explained 17 times that I NEED TO SEE THEIR FACE TO UNDERSTAND THEM. And the list goes on. How do you propose to extrapolate from your nasal congestion-related attenuated hearing to the social experience of sitting in a room of hearing people who don’t sign and having everyone ignore you because they don’t know how to communicate with you and can’t be bothered to learn how?

    I have several different disabilities, including two since birth (though one wasn’t diagnosed until age 26), and another very minor disability that I acquired 9 years ago. This third one involves a foot condition that means I cannot run or jump (and haven’t done either for 9 years), sometimes have a little difficulty coming down stairs, and perhaps most significantly I have to be careful how much weight I carry and how far I carry it. Prior to this foot injury, I did have a few temporary injuries along the way that did temporarily affect my ability to walk or carry heavy things. But, no, NOTHING in those very temporary experiences was really that similar to what my experience has been like for the past 9 years learning ways to adapt to the new limitations of my foot (as someone who doesn’t drive, for example, this has important implications for how I bring my groceries home.) If I had tried extrapolating from my earlier, walking-related injuries then I probably would have completely missed some pretty significant aspects of what life has actually been like for me the past 9 years. Because my imagination, as big as it is, just wouldn’t have stretched far enough.

    You won’t “get” disability until you understand the limits of your imagination, sit back, and JUST LISTEN. Thanks.

  51. Sami

    @Andrea S.: Exactly. For me, too, my disability issues are much less stressful and difficult than trying to navigate the social elements. Even down to little things, like, no, I can’t sit on the side of the table in tutorials that faces the window, because I have to manage my distraction levels carefully (ADHD) and the window is too much. I can handle the constant pain, so long as I’m not perpetually having to justify myself in the things I do to manage it.

    I remember a scene in an old TV show that actually conveyed a bit of the pervasiveness of disability discrimination for a change. It was also a deafness thing – on Reasonable Doubts, which starred Marlee Matlin as a lawyer. Professionally her character used an interpreter in court and so on, but she could lipread and speak so didn’t always need him there.

    In one episode, her car had been impounded. In trying to get it sorted out, she was dismissively directed to deal with an employee who had a thick, bushy moustache that concealed his lips. Her character’s frustration with this and the injustice it represented was an awesome touch to include – I was about twelve when I saw it, and the only deaf people I knew were family friends who themselves had never learned sign language at all (so I hadn’t really learned yet about the serious Issues surrounding anti-sign language prejudice, because the family friends were kind of down on it themselves), and yet that scene left an impression on me more vivid than just about any other scene in the series.

    Man, that show needs to come out on DVD.

The commenting period has expired for this post. If you wish to re-open the discussion, please do so in the latest Open Thread.