Author: has written 38 posts for this blog.

Return to: Homepage | Blog Index

77 Responses

  1. Anna
    Anna July 13, 2009 at 1:05 pm |

    I <3 this post.

  2. human
    human July 13, 2009 at 1:18 pm |

    Hey, this is a really awesome post in that it’s given me a lot to think about, and I really appreciate that.

    Here’s one thing I’m thinking about, and it relates to stuff about whether you identify as “disabled” (or whatever term) or not.

    One thing that we learn pretty early on when frequenting feminist blogs and the like is that it is rude to compare whatever sort of oppression we may personally experienced to some other sort of oppression which we haven’t — and couldn’t — experience. Best example: it’s considered very bad manners for white women to say they totally get racism because of that time somebody did them wrong for being a woman.

    But as you’re pointing out, amandaw, putting people into categories of “disabled” and “not disabled” (or whatever terms) is kind of hard. I have a physical condition — asthma — which sometimes limits what I can do. For example, I can’t run, so it impacts my health, and yet I get chewed out by doctors for not getting enough exercise. For another example, I can’t go to bars or other locations where there’s a lot of tobacco smoke. Until indoor smoking was banned in the city near where I live, this meant basically that I couldn’t go out to bars or clubs. It severely limited my social life.

    Yet, I’m one of those people who “doesn’t think of myself as disabled” probably because of a combination of two things. First, I don’t fit the traditional/default picture of a disabled person (wheelchair, scooter, crutches). Second, while my asthma is limiting, I don’t have to think about it or make adjustments for it as often as you probably do with your chronic pain condition. So while we kind of have something in common in regard to physical limitations, it’s also different in that I can go whole days without thinking about my problem other than taking my daily medication, and from what you have said I am guessing you cannot. (Though if I am wrong about that I apologize for poor assumptions and extrapolations.)

    Here’s a question for you: does it strike you as being wrong or ill-mannered for me to compare our conditions? What about for me to put myself in the same “disabled” (or whatever term) category as yourself? Would that be offensive to you in any way? Are there lines there that I shouldn’t cross? I would be very interested to hear from you on this point.

    It strikes me that really the problem we have here is with our intense desire to put things in binary categories. And, this relates to why we keep having blowups on big feminist blogs about trans issues. It’s easy to talk about sex-based oppression when everyone fits so nice and neatly into male and female categories, but if you mess with that boundary, suddenly it gets a lot harder. With race, it’s even harder still. Because with sex, you at least have the convenient fact that you can categorize most people based on the fact they have either a penis or a vagina. Of course, that leaves aside the fact that their own identification may not match up, but since race is basically a complete fiction, you don’t even have that much to go on. Just a kind of guess based on skin color and other things.

    So I guess the real problem that touches ALL of this is that this intense need people have to put people and things into binary categories just… doesn’t work.

    Not that that’s a unique insight or anything. But yeah. Thanks for the post. :-)

  3. Anna
    Anna July 13, 2009 at 1:38 pm |

    It’s really hard for me to identify as having a disability, because in my head “real” disabilities are physical in nature, OR are clinical depression. No, I have no idea why those two things ping in my head as REAL disabilities, but the crazy in my head? Oh yeah, that’s just me being a Drama Queen. (I know, because whenever I google my mental illness, I find post after post about how people like me are just Drama Queens or unfeeling, un-empathetic monsters.)

    It’s easier, I find, to advocate for other people. To demand that people with mental health conditions that aren’t me get the support they need, and that they aren’t the subject of abuse. That there is access to as much as possible. That there is acknowledgment of invisible disabilities.

    But not for me, no no. I’m just a Drama Queen. Even thought I know better.

  4. emandink
    emandink July 13, 2009 at 1:53 pm |

    I still have not had a chance to read and digest this post as much as I want, but, Amanda, your first ETA really helped me clarify something that I’ve been struggling with – namely whether as someone with a reasonably managed chronic pain condition I should ID as disabled.

    Specifically, this really resonates with me:

    I mean that you are part of a community defined by society’s institutions and programs, a community formed because of our minority status and the fact that society expects certain strengths and weaknesses, and anyone who doesn’t have that same pattern of strengths and weaknesses is going to have trouble in this society.

    While I don’t know that many people would think that my level of pain would/should/does count as a disability, I know other people suffering from chronic migraines who have had to fight long and hard for even the slightest recognition that their condition should be recognized as a disability. As someone within that same continum of chronic pain, I do these people a disservice when I make things easier for people living with the privilege of not being in regular, even constant pain, by downplaying the role that it plays in my own life.

    The filp side, of course, is that as an example of the virtuous pained person, I may do them a disservice. So, perhaps it is not as clear as I thought.

  5. Anna
    Anna July 13, 2009 at 1:54 pm |

    *hug*

    Part of the Happy Fun Times In My Brain means that at the moment, I reject your reality and insert my own. But I appreciate muchly the effort. It’ll be better in a few weeks – I’m getting used to riding out the storms, now that I know what’s wrong with me!

    I don’t know about other people, but I found a diagnosis to be exceedingly helpful in managing my condition, and I know that finding out if this thyroid problem of Don’s is Cancer or Hashimoto’s Thyroiditis or something else entirely will help a great deal. A diagnosis means an explanation beyond “something is wrong.”

  6. chava
    chava July 13, 2009 at 1:56 pm |

    First–I fully realize this may come off as stupid or 101 so feel free to mod it if so.

    Amandaw, I have been thinking about this for awhile in relation to your disability posts, and would like your/others’ thoughts on the subject:

    Where does radical disability politics intersect with abortion and screening for fetal abnormalities? Regardless of any legal status of abortion, does radical disability politics say that it is morally wrong to abort a fetus who is disabled?

    This comment in your post also drew my attention to this issue:

    Under the current system, when a woman becomes pregnant and plans to keep the child, we expect the child to be free of disability. What’s that refrain from the supposedly-gender-enlightened? “I don’t care whether it’s a girl or a boy, as long as the baby comes out healthy!”

    Mocking the parents here is troubling to me. I agree that we should prepare more agressively for any challenge or disability a child may face when they come into the world, but I am not comfortable blaming parents for wanting an easier, healthier life for their child. Finally, I am assuming you used “supposedly-gender-enlightened” because the saying doesn’t account for intersex babies? If not, how does “supposedly gender enlightened” relate to PWD?

  7. emandink
    emandink July 13, 2009 at 2:00 pm |

    Also, I totally meant to put quotes around “virtuous” in my comment @8.

  8. human
    human July 13, 2009 at 2:17 pm |

    Because a lot of PWD do get their hackles up when an able-bodied person compares disability to a cold.

    That made me giggle, just because almost the only time when my asthma does cause more severe limitations (I can’t climb stairs, etc.) is when I have a cold! That said, it’s an excellent point.

    I do think that my experience of dealing with asthma (and people’s reactions to my limitations) has absolutely helped me to understand why accessibility is so important. For someone who has never needed much in the way of accommodations, it’s easy to think things like, “What does it matter if the person using a wheelchair has to go in the back way?” It’s easy for someone who hasn’t been there to expect people with disabilities to deal with lack of accessibility as though it were only a minor inconvenience.

    But my experience has been that it can be just awful not to be able to do what everyone else is doing. And my disability – if we are going to call it that – doesn’t present me with nearly the level of trouble that some other folks have. (Which is why I still feel weird calling it a disability, though it makes sense.)

    I have had people snap at me or even scream at me for having an asthma attack in response to cigarette smoke. Yes, they got pissed at me for not being able to breathe! I have had my own parents do this on multiple occasions when I was a child. I have had the entire group of friends I was out with ditch me to go to a bar in a neighboring city where I couldn’t go, even though ALL the bars in the city we were currently in were smoke-free and just fine for me. That, too, has happened more than once.

    Now, my asthma has not interfered with my education or employment, so if someone were to say it’s only an inconvenience, I could see where they were coming from. Not going to a bar is not that much of a BFD in comparison to those things. But I have a very strong belief in the importance of human dignity and so I feel comfortable stating flatly that something that makes a person feel like the dog shit you scraped off your shoe is not an “inconvenience.” And the contempt some people have shown me when I requested the most minor alteration in their desired evening outing (“Let’s go to a bar where there’s no smoking”) is just stunning. I would hope that people would not behave that way toward someone with a more obvious physical disability, but my own experience suggests that you can’t necessarily expect the average person to be minimally kind or understanding about such things. Why the hell that is, I just don’t know.

    For me, the fact that various parts of the metropolitan area where I live have gone no-indoor-smoking one by one has made a huge difference in my ability to have a social life. It’s that which allows me to not have to think about my asthma very often. Back when I lived in a place where all bars had smoking (and where there was almost nothing social to do besides go to bars) I sat at home with no friends.

    Sheesh this is long. But my point is, that this experience has helped me to realize how important accomodations are, and how none of them are really “frivolous” or anything like that. Because everyone deserves not just an education and employment, but a social life too.

    At least, that’s what I think.

  9. chava
    chava July 13, 2009 at 2:17 pm |

    I am not sure if I should or should not respond to your comment, so again if it’s a derail just delete, I won’t take it personally ;-)

    1) I actually am not sure girls have a “harder” life than boys, although that is somewhat besides the point. I do see your point re: challenging the system vs. giving in, although I can also have some sympathy for the parents who don’t want their child to *have* to challenge that system.

    2) I understand that there is no monolithic answer and PWD don’t all agree. That’s why I asked about the view of “radical disability politics,” not PWD ;-) It sounds, though, like “radical disability” has as many variations as “radical feminism.” So, again, I take your point.

    Thank you for taking the time to answer! I will def. look around re: self advocacy.

  10. Tori
    Tori July 13, 2009 at 2:33 pm |

    As someone who got told, “Your period is not a disability” by her own mother last week, thanks for this. (To clarify, my period does come with the big fancy medical term of adenomyosis, along with enough pain that non-prescription pain relief methods do nothing for it.) While I certainly understand that “period”=/= “disability” for a lot of people, it’s not fun having people: a) assume this is the case; b) rendered apparently incapable of comprehending that because a particular biological event doesn’t cause nauseating, vomitous pain for *them,* then it must not really be so bad for me either.

  11. victoria
    victoria July 13, 2009 at 2:33 pm |

    Thank you for moderating Monty’s comment. I read it before it was put in mod status, and was a little hesitant to return to reading the comments and see more of that line of argument.

    And thank you for your posts. I’ve been reluctant to write more openly about my own health/disability/chronic illnesses/whateverthef**k to call them issues. Seeing and reading your and other voices here is helping me find more courage to speak up.

  12. Zan
    Zan July 13, 2009 at 2:38 pm |

    I have a hard time accepting that I am disabled. I know that I am. I live with it every day, but I just have a hard time saying the word. Which is a direct result of how society shames us. (And a direct result of my parents’ decidedly Protestant work ethic. Oy.) There should be no shame in acknowledging my disability and yet. . .I’m constantly subject to self-doubts. Do I really hurt as much as I think I do? Couldn’t I really do that load of laundry? Couldn’t I really stand up long enough to cook dinner? Do I really need those pills? Aren’t I really just lazy? Isn’t that what’s really going on?

    And I feel ashamed of myself sometimes, because there are lots of people who have disabilities that affect them much more severely. I work full-time, I have health insurance, I have a partner who is supportive and understanding. So what’s my problem, anyway? What more do I want? But the truth is, there are a LOT of days when I barely make it through. There are days when I’m praying I can make the drive home, so I can collapse on the couch. There are days when I have to sit down, sometimes in the middle of a frakking store, because I literally cannot physically stand up another moment.

    But I’m not disabled enough for a parking sticker. I’m not disabled enough for my insurance to pay for a TENS machine. (Although, your last post prompted me to give Amazon a look and I’ve decided to tell the insurance company to frak off and buy my own.) I’m just not disabled enough, it seems, for the medical community to validate me. Because I get by with less pain medication than a lot of FMS patients, my doctors assume that means I’m doing ok. Even when I’m sobbing because I hurts so much and I’m so exhausted I can’t do anything but sleep and my life is just slipping away from me. Because I’m only taking the pain meds twice a day instead of four, well I must be fine! (Not, because, oh I don’t know, they knock me out and won’t let me work. And I need to work in order to have health insurance, in order to see doctors who won’t listen when I tell them how bad it is! Grrr.)

    So a lot of times I feel that, because my disability is invisible, I’m not really a part of any community. And I don’t mean just the disability community, but ANY community at all, because I’m so exhausted all the time I can’t actually get out and do anything or meet anyone to actually become part of a community.

    So, I say I’m disabled, but that voice in my head (which sounds like my Mother) keeps saying ‘No, you’re not. You can still walk, can’t you? You can still see, can’t you? You can still hear, can’t you? Stop being lazy and do the damned dishes.’ Sometimes I just want to scream, because I don’t know where I fit.

    And I keep thinking, how easier life would be if I didn’t have to work JUST so I could have health insurance. How much more productive would I be if I could work a shorter schedule? I want to work, I want to be productive and contributing and all that, but as it is now, I’m so frakking exhausted all the time, I have a really hard time focusing. (Hello, fibro fog. Where ya been?) How much more shopping could I get done if there were benches around the store? (And you know, the longer I’m there, the more money I’m gonna spend, so it’s good for business.) There are a lot of little things here and there that would make life so much easier and not just for me, but for everyone, but they never get done. Sometimes, it’s back to the screaming. *sigh*

  13. disability discussion « (hasta la) Victoria

    […] clipped from http://www.feministe.us […]

  14. Ursula L
    Ursula L July 13, 2009 at 2:52 pm |

    .Disabled people’s feelings on the matter are as varied as are their lives. There is obviously a huge problem in the assumption that because the child will have any disability, hir life would not be worth living.

    I find it interesting that abortion in the context of disablity is generally framed in terms of the difficulty of life for the child.

    In a general context, whether or not going through a pregnancy is appropriate is generally framed, in feminist circles, as a matter of how a woman percieves the difficulties of childbearing for herself.

    It is sufficent to say “it is not right for me to have this child, in this time, place and context.”

    But if the context includes signs that there may be a significant disablity, something which frequently adds a lot of work to the task of child-rearing, it is no longer considered appropriate to consider the difficulty to the pregnant woman directly – the framing becomes about the difficulty the child may face.

    Whether a child will consider their life to be worth living – throughout all the experiences of life, over 50 or 100 years – is unknowable. Whether an adult woman is prepared to take on the care of a particular child, with a particular and specific diagnosis, in the near-future of her own life, is a much more knowable proposition.

  15. Aftercancer
    Aftercancer July 13, 2009 at 2:54 pm |

    I have worked with PWD’s for most of my career and I have to say that the definition of disabled is problematic for so many reasons. There are many people who consider themselves able bodied that are a fall away from disability.

    I’ll share a story as an illustration. Three years ago I was diagnosed with breast cancer and went through surgeries and radiation and chemotherapy. Some of the long term side effects of this has been decreased lung capacity and the crappiest feet you ever have seen (picture inability to get out of bed without excruciating pain in your feet).

    So last year I decided I didn’t care if I was too old or too fat or too anything, I was going to Bonnaroo! Bought the tickets, bought the gear and we were set – until I saw a map! That’s when I saw that I could be hiking for 3 miles one way, in Tennessee, in June to see a show. Holy Crap, now what?!?

    Fortunately there is a great message board system around Bonnaroo and I learned that there is “access” camping. This is much closer and would make the event doable but to use it I needed to have a “handicap” placard. But, I’m not handicapped! After much struggling with the idea I posted a note on the bulletin board explaining my situation.

    The folks there were wonderful and explained that in the real world I may not consider myself “disabled” but in this situation I certainly was and should ask my doctor for a placard. I spoke to my podiatrist who had actually been to a music festival of his own and completely understood the amount of walking entailed.

    Even amongst those who stay in the access area there are varying degrees of ability. There’s a guy that has gone for two years running now who is in a power chair and brings a personal care aide. There are loads of wheelchairs, artificial limbs and assorted braces, splints and more. Needless to say I’ll give up my seat for someone who needs it more than I do and vice versa.

    I don’t know how they do it but the group at Bonnaroo has an amazingly well designed accommodation program including sign language interpreting, modifications for people with vision issues and they somehow make it possible for everyone to participate.

    Why am I telling you all of this? Because I know as a professional and an advocate that the rest of the world is not nearly as accommodating. I don’t know how they have gotten the program as good as it is but I do know that concert goers have been excellent advocates for themselves and each other.

    And I am the beneficiary of those who have come before me allowing me to enjoy four days of remarkable music and not be in agonizing pain or have to skip it altogether.

  16. chava
    chava July 13, 2009 at 3:01 pm |

    Ursula–

    I have noticed that tendancy (and as you can see, resorted to it in my own previous comment). It is certainly interesting and you make a good point in that the mother is not “supposed” to have any problem, it is only supposed to be about the child.

    I would find the idea that the child could ultimately decide if their life is worth living more compelling if we were allowed to end our own lives safely, comfortably and legally. Since that is not an option, I find myself thinking that the parent has a repsonsibility to act as proxy in utero and must make a judgment call.

    Just to be clear, I am the child of a PWD, and have various issues that would probably limit my ability to work a 9-5, but I would not call myself disabled, so I am automatically coming from a position of privilege here (in case that wasn’t blindingly obvious).

  17. Sweet Machine
    Sweet Machine July 13, 2009 at 3:07 pm |

    This is a terrific post and a thought-provoking discussion. I think that one thing that my factor in that gray area of identification (which you and human touched on a bit) is that there can be a temporal factor to disability. Obviously, that comes up in the term TAB and in talking about transitioning from currently able-bodied to disabled, but I haven’t heard it used much to talk about the other direction (like human’s days of not thinking about asthma all the time). I have IBS, which is chronic but not progressive, and while right now it mostly is under control and doesn’t “feel like” a disability (for whatever that’s worth), there have been periods of time when my social/academic life was severely curtailed, and my doctor says that I will probably experience periods of time like that in the future. I don’t really have a point to make, I guess, except that during the really bad times (especially when we’re talking “bad months” rather than just “bad days”), I thought a lot about the idea of chronic conditions and disabilities and just how that imaginary Venn diagram would look. I didn’t come up with any answers, so I appreciate this post a lot!

  18. chava
    chava July 13, 2009 at 3:09 pm |

    To return back to the topic at hand–

    I am having the random thought rattling around in my lobe that free- market capitalism as we normally think of it is somewhat incompatible with imagining an interdependent world where the boundaries of “disability” might be imagined very differently.

    Rather, it seems to fit much better with the “from each according to his ability, to each according to his need” philosophy of Marxism/socialism.

    Still, even with a more Marxist economic system, we are still Puritans at heart, and I can see the “to his ability” in America becoming twisted to what Zan speaks of, where it is always “but if you just tried a little harder.”

  19. Zan
    Zan July 13, 2009 at 3:28 pm |

    Chava — It’s always ‘just a little harder’ for me, even when I know that I cannot physically lift my arms, or get out of bed or whatever. We have a society that assesses our worth on how much we make, not on who we are. I come from a religious background where suffering was just a given — yes, you were hurting, yes, you were in pain, so what? It’s either a test from God to see if you’re faithful and worthy, or it’s a punishment from God for some unconfessed sin. If you know you have nothing to confess, then grit your teeth and get on with it, already. Which, ok, maybe that works if you’re dealing with a relatively minor pain that’s acute and not chronic. Maybe you go to work anyway with that sinus infection. Sure, ok. But it doesn’t work when what you’re dealing with is the loss of feeling/control of your hands or feet, ya know? It doesn’t work when you’re dealing with a migraine for the seventh day in a row, ya know? There are levels to that kind of thing and I get really sick and tired of feeling my life has gone to waste because I couldn’t finish my Ph.D and get that teaching job at some liberal arts college somewhere.

  20. William
    William July 13, 2009 at 3:37 pm |

    I see disability in very much the same way I see madness. If a client comes into my office, sits down, and tells me that they’re having a problem, then the subjective distress that brought them to my couch really ought to be all the proof I need that they’re in some kind of distress. Asking a person who is telling you that they have some kind of difficulty to prove it just feeds into the bullshit Szaszian fears about malingering and someone trying to get over on the system to avoid responsibility that make going to the doctor an anxiety-provoking experience for so many people.

    So I suppose my definition of disability would lie almost entirely in the person who is applying the label to themselves. If someone says they’re disabled then, as far as I’m concerned, they’re disabled. Going any further, for me, feels too much like projecting my own issues onto others. If someone fits some criteria that I’d normally associate with disability, but doesn’t identify as disabled, who am I to argue? The only real reason for doing so would be to work through my own issues or try to get the other person to conform to my needs.

    Granted, I’m sure my definition has a lot to do with my history as a PWD, but I still feel that it works pretty well. Trying to force people to conform to a definition might help the person who’s defending the definition, but in my experience it pretty much always hurts the people being forced into a box.

  21. Tori
    Tori July 13, 2009 at 3:38 pm |

    Clearly, I should have allowed myself more time to process my thoughts before I hit “submit” last time. :)

    What I think I mean to say is that a fair portion of my difficulty with my chronic pain condition (and, yeah, I’m still struggling with the idea of applying the term disability to myself) comes not from the condition itself but instead from societal attitudes surrounding it.

    One, the idea of not being “disabled enough” really hits home for me. There’s no highly visible outward sign that my body doesn’t wholly operate within the realm of what’s often considered “normal.” And most days (now, thank you, Mirena), I am able to be very physically active for a large portion of the day. Because of this, though — and maybe because society also tends to categorize (all) menstrual pain as “normal” and “not a big deal” — when I’m not able to be active, people tend to perceive me as exaggerating, being unreasonable, or whining.

    That attitude, I think, also combines with another to create substantial barriers to accessing appropriate care. I know it’s been discussed on the site recently, but there’s also a tendency for people, including health care providers, to be suspicious of people who seek prescription pain relief medications for — not addiction — but to manage real and persistent physical pain. I understand about trying other options first, but I’ve been fucking around with those “other options” for nearly 14 years.

    Then there’s the attitude some medical professionals possess, which is that patients should be utterly and grovellingly grateful for any diagnostic, management, or treatment option they’re willing to offer — no matter how how much the patient has had to fight for it or how insufficient said option truly is. While there certainly are wonderful health care providers, the Doctor Knows Best mindset sometimes creates a system where patients don’t feel like they have a right to ask for better care.

    Could I live a happier and freer life if my uterus were more cooperative? Well, yes. But are there factors outside my body that impede that whole “happy and free” thing? Hell, yes.

  22. chocolatepie
    chocolatepie July 13, 2009 at 3:41 pm |

    A fabulous book that ties into your point #5 is Talking Hands by Margalit Fox. It’s about a small community in the middle east that has such a high incidence of deafness in the population that being deaf and knowing sign language is the norm, and every hearing denizen is bilingual. It really highlights how our culture treats some bodily conditions as “diseases,” but they wouldn’t be considered such if the outside society were more accommodating. If there were more deaf/blind/one-armed people than hearing/seeing/two-armed people, that would be the norm.

    I also love the scene in A Wrinkle in Time where they go to the world with the beings that don’t have eyes, and the protagonist realizes she can’t explain sight to them because they have no need of such a sense.

  23. William
    William July 13, 2009 at 3:47 pm |

    Rather, it seems to fit much better with the “from each according to his ability, to each according to his need” philosophy of Marxism/socialism.

    Don’t kid yourself. Large, invasive social systems which view human beings as objects of production tend to treat individuals who can’t produce very poorly regardless of who happens to be running the show. Marxism, like capitalism, looks great on paper, but the conditions on the ground tend to drive everything down to the same depressing level. The problem is that when you actually get down to human beings having power over one another, individuals with less power tend to get fucked regardless of the uniforms or jargon being bandied about by individuals with more power. A worker who cannot work is as worthless to a Tycoon as they are to the Proletariat. The only real difference is the ritual used to make the inconvenient person disappear.

  24. William
    William July 13, 2009 at 3:58 pm |

    Also, Chava, I don’t particularly like the idea of PWDs being used as a political football. The problems that face the disabled, while social, are not purely rooted in our economic or political theory. They are rooted in the ways in which human being in virtually all societies interact with one another. They are rooted in the ways in which human beings determine value, not just in the particular window dressing of those valuations. They are rooted in the deep revulsion that human beings have for things that are different, especially things that are “abnormal” or seem to imply illness. The problems PWDs face aren’t some side effect of a greater social problem, we aren’t canaries in the mines. We are people, who face our own unique problems who are worthy of our own unique consideration. Some of the problems we encounter on a daily basis might be tied into larger social problems, but we’ve been shat on at pretty much every stage of human development in pretty much every major culture you care to study. We’ve been burdens, curses, mad shamans, objects of pity, resentment, and ressentiment, containers for just about any social projection you can imagine. Now, we’d really like to just be people.

    Can we have that little thing? Or can we at least talk about it? Without being appropriated for someone else’s cause? Can we just for one goddamn second be allowed to consider ourselves? Please?

  25. Essa
    Essa July 13, 2009 at 4:20 pm |

    As we try to expand the idea of what disability is (which I think is a very good thing) we are beginning to call both temporary and permanent “incapacity” a kind of disability. My question is, what is the difference between “sickness” and “disability”? Should there be a difference? And if so, who or what should determine that line?

    My initial sense is that “disability”, or being a person with disability, means that the individual (by choice, by social convention, or by necessity) sees their disability as a self-defining characteristic. The disability is part of who they are– like their name, or their occupation, or the neighborhood they live in. This doesn’t mean that the disability can’t be temporary– but the characteristic is defining enough or important enough to be intimately attached to the person’s conception of themselves. A disability can be a hassle or make things more difficult it can be unwanted, but it isn’t always. A disability can be a neutral, positive or negative thing. It is part of who this PWD is.

    In contract “sickness”, or being sick, means that the individual (again by choice or by social convention) sees their sickness/disability as an exterior characteristic. Sickness has a negative connotation and a temporary connotation. Sickness implies that you want to be “healed” and “returned to health.”

    In my ideal world, the distinction between sickness and disability would not be a big one. It could be fluid for each condition, over time, and between people. Both the medical community and social community would be open to both definitions. We should encourage our children and our neighbors to understand that it isn’t bad to have a disability and it isn’t bad to be sick, either. Both sickness and disability can be adapted to and both sickness and disability can be fought against. In the past, the idea of “sickness” as opposed to optimal health has been vastly overused. The term “sickness” has an ugly and terrible history. People who have been “different from the culture around them” have been accused of all kinds of sickness and been put through many “effective” and “ineffective” treatments in attempts to make them more normative. I don’t think there is a distinction between sickness and disability that is based on any bright line.

    But in my ideal world, there would still be a difference between sickness and disability. I think there is a place for an idea of sickness in the world. I think a distinction useful and important for individuals to be able to either say “I am sick” or “I am disabled” with definitions that are something like:

    Sickness is an external thing that I consider a burden and I have a different idea of myself as healthy and I want others to as well.

    Disability is part of who am, either temporarily or permanently. It can be a burden or a blessing and… (insert all the wise things everyone is saying about disability.)

    What do others think?

  26. katrinaruth
    katrinaruth July 13, 2009 at 4:43 pm |

    Amanda –

    This is the first post of yours that I have ever read (I am sort of new to reading this site in general) and I just want to first give you props on an awesome post.

    Second, this part jumped out at me the most:

    “My body isn’t the enemy, I realized.

    It’s not my physical self that creates all my problems.

    It’s all the external expectations of it.

    Disability isn’t the result of individual defects, deviations from the able-bodied norm. Disability is the result of a society that fails to accommodate these differences.

    What if we saw these differences as variation, not deviation? After all, we fully expect our children to be born with any number of different eye colors. Why is it any less when it comes to physical and mental abilities?

    Can you shape a world in your mind where there is no norm? What does it look like? How does it differ from the world you live in today? What do you expect of people as a whole in order to support those currently disadvantaged?”

    I wrote almost the same ideas in a term paper I did for a social justice class last year. My thesis, however, was in regards to mental illness and not disability in general. I think the ideas really are the same, though – it isn’t a person’s ‘mental capacity,’ or ‘mental functioning’ that is the ACTUAL problem. It is the external definition of normalcy that is imposed in regards to a very abstract piece of ourselves.

    I didn’t argue that there is no such thing as mental illness. It would be silly to postulate that there aren’t conditions that don’t need to be treated. There are, and I am the first to advocate for the proper treatment of mental illness. What I argued, though, was that the definition of “normal” as it pertains to mental/emotional functioning is dehumanizing. And the power of its expectations have the ability to crush the sense of self of already broken and struggling people.

    So this is a bit of an aside…but along the same lines of your post: I have struggled long and hard to come to terms with myself outside of the labels that a system supposedly dedicated to helping and healing my “conditions” and society have so mercilessly slapped on me. I have certain “diagnoses” and fit into certain categories… but I don’t think of myself as “mentally ill.”

    I don’t think I know how to do that without feeling like I’m giving myself over to the dehumanization of what it means to be “mentally ill” in this society. I know I am a variant – a full-hearted, emotive, sometimes-not-as-stable-as-the-rest – variant in terms of temperament and my emotional capacity, but I am not deviant. I refuse to believe that for myself, and for the rest of people (because this is what every single one of us is, after all) that have struggles – internal or external – that make functioning in our society a challenge.

  27. TexBetsy
    TexBetsy July 13, 2009 at 4:48 pm |

    I definitely consider myself disabled. Use that interchangeably with “have a disability” but don’t like “handicapped”, if that makes sense.

    I am mobility impaired and have a seizure disorder. I have several part-time jobs, raise a child, and run a blog. I am able-minded and able-armed but not fully able-bodied.

  28. TexBetsy
    TexBetsy July 13, 2009 at 4:59 pm |

    When I’m on the phone with a restaurant/hotel/whatever, I never identify myself as a person with a disability. I simply state that I use canes or a wheelchair and ask about the best entrance or parking lot. They don’t need to know anything about the disability other than to know that walking is difficult. At the pool, however, the only thing the lifeguard needs to know is that I get muscle cramps and that standing or getting safely to the side might be problematic. My doctor & massage therapist need specifics.

  29. DavidD
    DavidD July 13, 2009 at 5:02 pm |

    In recent years I’ve just said, “I’m disabled”, as opposed to being a person with a disability or any other way of saying it, without needing to think twice about it. There are several reasons for that. Social Security started sending me checks in 2002, both validating my disability against anyone who doesn’t think I deserve that label yet also forcing me to say, “Yes, I have fought enough. It’s crazy for me to keep making my life about how I can hold a job, any job, when I can have this money instead. Thank God for FDR and those like him.”

    Losing 7 jobs in 15 years not only made it so I could get a quick approval from Social Security (They had turned me down when it was only 3 jobs), it got me past any doubt about being disabled or guilt about having given up too easily. I still have shame about my failures, but that’s not about words.

    I don’t know that there’s a universal answer for those who aren’t ready to label themselves as disabled yet, either “PWD” or “the disabled”. It is not a sharp dividing line between shortcomings everyone has and ones where someone starts to feel different, be treated differently, a difference people both embrace and deny. There are so many deficiencies human beings have that aren’t considered limitations, at least to the individual, even if our society judges them that way, from the glasses I started wearing when I was 8 to the young man with cerebral palsy I met before the days of ADA, a man who intimidated people with his wheelchair and involuntary movements, but wasn’t intimidated by anything himself, buses included. People can be so adaptable. That makes it hard for us when we find we can’t adapt to everything.

    I understand the view that society makes me disabled, not my limitations. I’ve done volunteer work since 2002, always having it in the back of my mind whether I could go back to work. I came to appreciate this pattern. I could be pretty good with people for about an hour. Then I started to tire. Whether it was fatigue or emotional conflicts building up, after about 3 hours I was no longer an acceptable employee at times. I was irritable. I was making dumb mistakes, whether because of being distracted or something else.

    Even I had trouble coming to believe that yes, this is my bipolar disorder, not my having a bad attitude, and I’ve had 40 years of experience that this disease is not as simple as even mental health professionals think it is. It’s not just episodes. but chronic and progressive symptoms as well. Yes, there are conflicts when the medical profession runs into people that don’t fit their textbooks or personal models for treating their patients, but do you think non-professionals are any better?

    How would the disability community respond to me when I start having my 3-hour symptoms? Would they tell me it’s time to go home? Would they start giving me advice? The worst thing would be if someone starts telling me how I should be taking more meds or herbs or whatever else for what they think is just a chemical imbalance. I doubt I would unload on that person about all the meds I do take, have taken, all the side effects and limited benefit, but I’d want to do that. Is that my illness or my anger apart from my illness? Who knows? We humans still tend to focus on adapting, even when there’s no chance at all any more that we’re normal.

    In a perfect world, would I be disabled? After all, it’s been many years since I’ve contemplated suicide or otherwise rejected myself. Is it just ableism or some narrower prejudice against emotional people that keeps people from tolerating me as I tolerate myself, something I learned to do because I had no choice? What a difficult question.

    It’s easier for me to say that I’ve never been in any community where people could tolerate me as well as I tolerate myself, and I know my emotional lability and irritability well enough to know that no human being is going to tolerate that without a lot of experience with me, experience to know it’s not personal, not fake, not self-centered. It’s not just ableism that gets in the way of that, but both narrower and broader prejudices as well.

    All prejudice is about oneupsmanship. It’s about arrogance that any simple model is the truth, not just medical models. It’s about ignorance for how someone else’s behavior might be tolerable, not just behavior one’s own community finds tolerable. None of that is specific to my illness. My adult daughter with fibromyalgia can write just as I have. So can others about any sort of prejudice, due to race, gender, anything. If your community works for you, good for you. There are so many reasons why a single community isn’t for everyone. That doesn’t mean people who don’t fit are bad.

    So what should anyone do? Should anyone answer that for someone else?

  30. chava
    chava July 13, 2009 at 5:10 pm |

    William–

    I am not a big fan of Marxism per se, and I don’t think it is a solution. HOWEVER, I do think that if we are talking about changing entire paradigms of thought in a society, then examining the fact that capitalism as such doesn’t seem to mesh with certain ideas about disability seems valid–as does bringing up potential alternate systems of organizing society.

    Amanda is both discussing the situation “on the ground” AND discussing a more abstract theoretical definition of “disability.”

    If you mean “political football” to insinuate that I am using the cause of PWD to advance my belief in Marxism–well, I don’t think much of Marxism in reality, period, so no, I am not. If you are talking about my earlier comment re: abortion–this is an issue about which I do not know what others think–which I why I posed the question instead of stating an opinion.

    Zen–I am not sure what you are responding to in my earlier comment. I totally understand that what PWD deal with is not the same as going to work “with a sinus infection.” What I was trying to use your post to point out is, well, exactly what you elaborated on–that no matter what, it is always just a little bit harder, and PWD are expected to make that extra effort disappear–and I am not sure that changing the culture of capitalism would do squat to alter that fact, although it looks like potentially a tempting point of departure.

  31. chava
    chava July 13, 2009 at 5:26 pm |

    Someone upthread mentioned “chronic pain condition” as a potential label they felt comfortable with. This really works for me as well–I would not call myself a PWD, since I feel that this is not accurate as I can (most of the time) make the deadlines I need to make–although this relates more to the fact that I have to an extent organized my life around the migraines/ridiculous headaches otherwise unspecified. I also see what my mother goes through and hesitate to ever lump myself into “her” category. It feels…wrong.

    On the other hand, I go through the expensive pain/anticonvulsant meds (and on months when I can’t afford those, the Excedrin, 4-6 or so at a time+3-4 cups of coffee works okay some days) like candy. I can prevent some of this med use with excellent sleep hygeine, exercise, and diet.

    BUT. People persist in judging me for not doing those things and resorting to the meds instead. Well…guess what. If I want to do all those “normal” things, sometimes I can’t get my work done. Or I can’t spend time with my loved ones. Sometimes on the third or fourth day or a migraine, I just want the damn thing to GO AWAY.

  32. Lucy Gillam
    Lucy Gillam July 13, 2009 at 5:27 pm |

    Thank you for this post. I need to come back and digest it more fully, because it gets to something I’ve been pondering regarding my own identity. I have chronic pain of several varieties, most notably arthritis. Access to pain management has become a fairly large concern for me recently, and certainly most days, I make one or more decisions based on my pain. At the same time, I find myself queasy about identifying as “disabled,” because I am able to do pretty much everything I need to do and most things I want to do, and I feel like I would be appropriating an identity I am not “entitled” to.

    I…don’t have conclusions, here, just that you’ve given me something to think about.

  33. William
    William July 13, 2009 at 5:39 pm |

    HOWEVER, I do think that if we are talking about changing entire paradigms of thought in a society, then examining the fact that capitalism as such doesn’t seem to mesh with certain ideas about disability seems valid–as does bringing up potential alternate systems of organizing society.

    Heres my problem with that thought. As a PWD, I’ve had experience with systems that have been both generally capitalist and generally socialist in nature. As an academic, I have spent a not inconsiderable amount of time looking at how different systems, from the US to Europe to Soviet Russia to Mao’s China, treat people with a particular class of disability. Both of these experiences have lead me to the conclusion that the problems with the way society interacts with PWDs has less to do with the economic theory behind those societies and more to do with the fact that human beings, generally, are assholes.

    Interactions with PWDs mean a lot of things to a lot of people, and the economic structure of the larger society doesn’t do much to alleviate those problems, it just changes the form they take. I get that you’re trying to offer an insight into paradigm shifts and the possible intersection between economic systems and disability, but from where I’m sitting this is the second time you’ve (perhaps unwittingly) steered a discussion about how to define disability towards a discussion about some other social issue that has only a tentative link to disability in general (abortion and marxism). Thats the political football I’m talking about. Its as if you’re saying “Hey, I get that you’re all talking about what it means to you to be disabled, but as a person who doesn’t identify as disabled I’m more interested in X.” Then you got just a tad defensive when someone got annoyed at the derail.

    Yes, definitions of disability might have some minor relationship to marxism or to abortion, and those could well be very interesting discussions, but you should also understand that part of what disability means to a lot of PWDs is that others are going to ignore what you say and tell you what you ought to be thinking about. Those people tend to not be PWDs, sometimes you love them very much, sometimes they have power over you, oftentimes they sincerely believe that they have your best interests at heart, sometimes they will even treat you almost as an equal most of the time. But all of the time they carry that little sense of superiority that privilege offers. Many PWDs have come to expect that in all or most of their interactions they will be working with people who will see them as lesser, people who will treat them as if their thoughts have less worth, people who will treat them as if they need to be guided. Thats part of what it means to be a PWD in this society, that people are going to treat you as if you’re DISabled.

    So when you, as someone who does not identify as a PWD, say “hey, I think marxism is a tempting point of departure” you need to understand that at least some PWDs are going to experience that as a direction. You need to be aware of the effect your speech might have on others. When you encounter a strong reaction you need to step back and think about what you might be triggering, especially when the people reacting are telling you what you’re triggering.

  34. XtinaS
    XtinaS July 13, 2009 at 6:06 pm |

    I’m not sure if I fit here, since it’s my brain that hates me and all-comers.  (I have generalised anxiety and some flavour of ADD.)  This, though:

    My body isn’t the enemy, I realized.

    It’s not my physical self that creates all my problems.

    It’s all the external expectations of it.

    Replace “body” with “mind”, and I fit this 102.5%.  If I never ever again hear things like “Just don’t worry about it!” or “It isn’t hard, why can’t you just focus/pay attention/follow through?”, it will be too soon.

    (I keep having more substantial thoughts on this, and then I get nervous that I am not “genuinely disabled” and so shouldn’t comment.  Which is kind of amusing, in that this is, in fact, my anxiety at work.)

  35. Ursula L
    Ursula L July 13, 2009 at 8:01 pm |

    I think I wasn’t clear in my last post.

    My concern is mostly that, because women aren’t “allowed” to consider their own needs when discussing abortion/disablity, there is a tendancy to exagerate the difficulties of disablities on people with disabilities.

    If you can’t say “going through this pregnancy is too much for me to deal with,” when you believe or fear that it is too much for you to deal with, but its okay to say “life with disability is too much to ask my child to live with” you’ll say the latter, to justify decisions consistant with the reasoning of the former.

    When the reasoning is framed as “I did this because disablity is terrable for a disabled person” rather than “I did this because caring for a disabled child isn’t right for me” when the motivations are the latter, you’ve got the double problem of increasing a false understanding about the problems of disablity, and ignoring/hiding the real issues of caring for a child with a disablity, which means that people pay less attention to solving the latter problems, while increasing in the former stereotypes.

    Which goes back to your point, that the problems of being a person with disablities has as much or more to do with living in a society that doesn’t include planning for your needs. One of the needs of a child born with a potentially disabling condition is access to good care, and support for their family in providing the care. The distortion of the problem, because women are considered “bad” to articulate their own needs in the situation, leads to leaving the needs unadressed, and another situation where the disablity is a result of society not considering the needs of all the members of society.

    If we can’t fully discuss the choice issues, we distort half the dissablity issues. Including the issues of recognizing and addressing needs and defining disablity.

  36. chava
    chava July 13, 2009 at 8:12 pm |

    OK, William, I see what you are saying and appreciate your insight. I don’t think my second comment (re: ways to organize society) was a derail, but I do understand how my first comment was seen that way, and I appreciate amanda’s pointing me in the right direction there.

    I re-read the OP a few times, and it isn’t clear to me that the discussion was supposed to be solely about how PWD experience or define that disability, but also about a larger/more abstract picture. If that was not the case, then I apologize for coming in on your space. (and that is sincere, not defensive).

    Re: becoming defensive. Please don’t hear this as an ad hominem, because it isn’t one as much as a (backhanded?) compliment. You are, as mentioned, an academic in a field I am quite weak in, and tend to fisk people with considerable skill. So…yeah, I tend to get a bit nervous/defensive when you disagree with one of my comments.

    That doesn’t make your larger point about how my comments may have been triggering/perceived as pointing you in a direction any less valid, and like I said, insight is appreciated.

    ——

    Amandaw–On a completely different note, that is the first time in my life that I’ve acknowledged myself as someone with a chronic pain condition. I’ve just never written it out or said it out loud until now, and I think without this post it might not have happened. So….thanks.

  37. William
    William July 13, 2009 at 8:35 pm |

    Chava, I take your point. I have a habit of running headlong into things, and I sometimes confuse the defensiveness that comes from my presentation and the defensiveness that comes from other sources. As is generally the case in these kinds of things, it was an interaction and we both contributed to it.

    I can see your point about trying to jump into the more abstract picture. Truth be told, I was probably responding more to my own past experiences regarding socialism and disability than to your comment, you just happened to be the one who triggered something in me. I apologize for coming out as aggressively as I did. I still think my point holds about some of the theoretical problems with what you said, but looking back I definitely came out stronger than I needed to. It seems I should probably give myself a bit of time to get out of the mindset I’m in while I’m writing before I post here.

    Finally, this isn’t my space. Its a space that I frequent, but I’m at most a peripheral participant. I apologize if I made you feel defensive.

  38. dpa
    dpa July 13, 2009 at 9:39 pm |

    In reading this thread I keep coming back to a couple wonderings:

    1) I wonder if the more someone is able to “pass” as able-bodied, the harder/less likely they are to identify as disabled?

    This was certainly true for me.

    2) I wonder how much the variability or subjectivity of a disability/disabling condition makes it harder to self-identify as a disability?

    With variability there seems to be an explicit social and implicit internal self-punishing litany of “suck it up/don’t be lazy/it’s not a real disability/it’s ‘just’ your period, a headache, an allergy, being tired, a little pain, a mood.”

    3) I wonder how friends of the disability movement are defined?

    I’m not a movement person. I advocate individually, in one-on-one or one-on-a-few encounters. Over and over people tell me that because I can pass, I can’t be disabled. (They aren’t being cruel or unkind, just confused. The real irony is that, with my package of disabilities, the only times they see me are when I’m well enough to pass. Otherwise, I’m functionally housebound.) To most folks in my world, disabled=somehow visibly broken or scarred. They are horrified to think that I can look like them, sound like them, and all of that can change not only from day-to-day but hour-to-hour. If they accept my disabilities, they have to accept vulnerabilities they never had to consider before. As a rule, that scares the jeepers out of people.

    Those same vulnerabilities can lead to healthy curiosity. Yes, the ignorant questions get tedious and there certainly seems to be a disproportionate number of people who are unable or unwilling to get past their own ignorance. But those who do the work become de facto friends of the disability movement. They start thinking in new ways. They listen differently to people who hurt their back or can’t go to work because of their period or are so tired they can’t go out as planned. They think about who needs rides to events or alternatives at events so everyone can be included even if not everyone can participate in the same things.

    These people, as a rule, probably don’t know there is a disability movement. They are unlikely to see themselves as part of that movement. When I thank them for the extra effort often required to include me, almost universally they dismiss it with a, “Please…anyone would do the same thing.” To them, it’s not about being a “friend of,” it’s just about being a decent person.

    That decency is why I identify as disabled. I think there are a lot of truly legitimate problems with the word and the connotations and the stereotypes that have built up around it. In my world, though, that’s the label people have and a handle that helps simplify a new level of complexity for them. It’s a known quantity, complete with a stereotype. Putting me with that label keeps their mental model intact while putting a crack in the stereotype. If we’re lucky enough to know each other over time, the time spent with me is likely to start dismantling or reshaping that mental model.

    (In re-reading this, I realize this could come across as a campaign for everyone to adopt “disabled” and that’s not my intention at all. I just wanted to make clear that–in my world–to use a term other than “disabled” would put the focus on the term instead of my disabilities. If I’m opening myself up to talking about my disabilities with people, I want the focus on my reality of it, not the terminology used to describe it. But that’s a limitation of my world.)

  39. shah8
    shah8 July 13, 2009 at 9:46 pm |

    This is a great thread! It’s also one of the few really long blog posts that has held my interest.

    It’s also so complex, and I have such a complex response to this manisfeso, that I thoroughly itch for a time machine and library.

    I think the single most important response to your words is that the community of recognized defectives are Cassandras. Cassandras that prophesies the eventual incapacitation and death of everyone and everything. I walk around with my behind-the-ear hearing aids, and every time I go to the mall, I remind people of aquaintances who eventually needed hearing aids (and there will be plenty soon enough, given the prevalence of earbuds). These thoughts have to be put away somehow, and the concept of dismissal is sticky with a whole host of ugly ideas susceptible to the need to feel control. To say that human beings are assholes, as William has said, avoids the germaine issues. I think the battle is more about creating dialogues (and definition) throughout the various layers of Matroska Doll Society that allow the idea of us to pass as another puffy cloud through the conciousness of the people that encounter us.

    I think that the relevant diagram in unfolding Amanda‘s beautiful section seven is social capital–>exploitation–>division of spoils–>return. Human organization is necessary to acheive most human needs, and human coercion is necessary to convince most people to do needful things. I do not think there is any way around those two facts. Thus, there is always going to be someone on top and someone who isn’t, and there will always be temptation fo the people on top to skim more than the value of his or her labor. This is also true of *anyone* who is placed in mission-critical areas of societal tasks. This is rent. The thing is, most enterprises have more than one critical job or asset. This is liable to cause infighting such that all elites lose out. Therefore, elites must recruit allies from more disposable areas of an enterprise, and elites has to settle for some kind of suboptimal distribution with other elites so that fighting doesn’t reduce overall gains.

    However, to exploit something, you have to have a functioning organization that is motivated to extract those gains. That means at least some of the people lower down the ladder are motivated to demand a share of the profits. However much that is true, people usually try to pay others as little as possible. There is one tried and true method that has worked throughout history, which is to offer sanction to the workers to oppress other similarly placed people by denying them a share in the rewards or extracting extra payment/work. Divide and Conquer.

    Now here is where it gets important to disability schema…In that division of spoils, what matters most is preventing conflicts. Typically, the best way to prevent conflict so you don’t have to spend your gains fighting (or prevented from exploiting whatever) is to look like your are too tough to take on. To present a certain kind of image. Visibly disabled people undermine a group’s property rights–everything from infertility (which is visible) to paraplegics or leprosy (remember if your family or society is thought to be disease ridden, other groups of people can easily unite to take on you and yours for your stuff). Rumor and gossip are lethal weapons, and they are quite often deployed to undermine authority (which is why Roosevelt was never seen in his wheelchair in public and he used his social captital to ensure that no pictures were used to undermine him).

    Therefore, a critical aspect of the disabled community’s struggle is mediating social violence and pushing to redefine what “weakness” really is. We should not stop demanding public and private accomodations, but we should be very careful that we aren’t demanding that societal surplus be spent on better accessibility because that will be the path that antagonists would take in *denying* us these things. First and foremost we should always walk/wheel/crawl if you half to! into the places of authority as if we aren’t victims of circumstances but entirely self-possessed. That the accomodations belong to us and we *choose* to have them where we work! And shop! And fuck for that matter! I think a core tactic *has* to be securing property rights and family law rights as well. When family services can’t take away our children because they can’t imagine us to be good parents…When contracts must take our disabilities into context of its creation…then each and everyone of us (normatives included) can build the political capital to be where we want to be and be with who we want to be with without admission of anything, like FDR.

  40. Meowser
    Meowser July 14, 2009 at 1:02 am |

    Currently, things go like this: 1. World expects “normal.” 2. Non-normal people come along. 3. Oops!

    What disabled people want is more like this: 1. World is prepared for any number of different things. 2. We come along. 3. Hey, we were expecting you!

    I want to learn needlepoint so I can put that on a sampler.

    And thanks for the quote from Joel, his blog is great. Having been DXed with Asperger’s less than 2 years ago, I’m still trying to feel my way around the disability-politics aspect of it, but what I’ve run into a lot is the belief that, “Aspies aren’t disabled [sic] but autistic people are.”

    Well, there’s one little problem with that meme: Comparing the DSM-IV-TR diagnostic criteria for both, everyone with Asperger’s qualifies as autistic. It’s just that some autistic people (those with speech/language delay and/or cognitive/intellectual disability under current criteria for both) don’t qualify as aspie.

    So if all of us — 299’s and 299.08’s — are autistic, and the division between “Asperger’s” and “real autism” is a bunch of media-generated horsehockey, who has a “disability” and who doesn’t? I’m not going to claim that those of us with fluent speech and average-plus intellectual functioning (not sure how else to put it without sounding like an asp-hole elitist) don’t have advantages (i.e. are less “disabled”) than people who don’t have those privileges.

    But it would be a stretch worthy of James Brown on the T.A.M.I. Show to say I’m what society likes to think of as “fully functional.” There’s a lot I can’t handle, or that will take me longer than a “normal” person is expected to take to accomplish the same thing, because too much data is coming through my pipeline all at once. Just because I can do something sometimes doesn’t mean I can do it all the time, or at the same rate I did it all the other times I did it. On the other hand, there are probably some things I can do faster or better than most enties, because my mind is less cluttered with am-I-allowed-will-they-like-me-do-I-fit (as I already know I do not “fit.”)

  41. lilacsigil
    lilacsigil July 14, 2009 at 2:42 am |

    I think the single most important response to your words is that the community of recognized defectives are Cassandras.

    shah8, this is a wonderful observation, and something that, for me, links fat activism with disability activism. My ongoing fatigue and balance issues and my weight are linked via thyroid problems, but (except when I actually fall over, or need help walking), only my fat is visible. I am a reminder of illness and death. I am a walking conflict. You’re entirely right in that disability, age and difference must be part of everything from the start, must be amandaw’s approach: 1. World is prepared for any number of different things. 2. We come along. 3. Hey, we were expecting you! or it’s a race for scraps and charity, a battle to hide the “conflict”, as always.

  42. September Blue
    September Blue July 14, 2009 at 7:44 am |

    A couple of years ago, our (then future) Prime Minister, Gordon Brown, was chosen as the UK’s most influential disabled person by Disability Now magazine. He’s blind in one eye and has slightly impaired vision in the other, to the point where his speeches are typed in large text. He’d never considered himself disabled, and there was some controversy over a) whether he should have been nominated in the first place and b) whether he was ashamed to count himself as disabled (see here for one disability campaigner’s response, for example).

    I got quite invested in that story because I have the same kind of visual impairments as he has, but I don’t consider myself disabled either. Only having sight in one eye affects me about as much as I imagine only having smell in one nostril would do; I was born this way, my eyes and brain work fine together to interpret the 3D world around me. (I don’t have great visual acuity in the other eye either, and I’d probably need speeches in large print too since I wouldn’t be able to hold them as close to my face as I usually do with material I’m reading – but I’ve never needed accommodations at work.)

    People often assume that my condition must affect me far, far more than it does. I can see why so many people read Gordon Brown’s ‘I’ve never thought of myself as disabled’ line as trying to disown what is, to them, a very obvious disability, but at the same time it really annoys me when people don’t take my word for it that my eyes work just fine, from my perspective. I’d feel downright dishonest claiming to be disabled, and that’s why I don’t.

  43. Zailyn
    Zailyn July 14, 2009 at 8:02 am |

    @Meowser,

    You have complete agreement from this Aspie here. I do not get the strict delineation people draw between Asperger’s and autism, because as far as I can tell the single differentiating criterion is that there was no speech delay in childhood. And since a lot of the people who *do* catch up later on, there’s often no way to distinguish between a person with Asperger’s and a highly verbal person with autism.

    But I cannot say how often I’ve seen someone explain Asperger’s by saying it’s “mild” autism. Which is just… I sometimes feel as if people want to put all of us on the spectrum into two boxes, one saying “Too damaged to bother with: ignore” and one saying “Too functional, ergo don’t need help: ignore”. I don’t even need to say how incredibly awful the first attitude is for nonverbal autistics, and as for the second, “even” AS can be pretty debilitating. “Mild” autism also makes it seem as if there’s only one metric to judge autism by, as if improvement in one area is automatically linked to improvement in the rest or as if there is only one area to begin with – and one of my pet peeves is when people reduce Asperger’s to just the social issues.

    Getting back onto the topic proper, I’ve been in the place where I went “oh, I’m an Aspie but I’m not disabled-” for me the reasoning went more along the lines of “I think AS is an integral part of my personality and I can’t call who I am a disability!” Which is all well and good but irrelevant for the social model, as who I am is not accommodated by society. I only really started to identify as disabled when I realised just how much my life was impacted and, well. I wanted to vomit, I spent about a week crying intermittently, it took me around nine months to become happy with the label. Part of that was having to accept that my problems wouldn’t magically vanish, but part of it was that I had to square disability (= terrible awful miserable life-ending thing!!!) and me.

    That’s why I tend to quietly worry when people go “I have X, but I don’t consider myself /disabled/.” I don’t want to take away anyone’s right to identify as they see fit, and I know that many people have good reasons for saying it… but I used to think that way, and looking back it was largely founded on extremely ableist prejudices. Once I got rid of those, the only thing keeping me from being entirely happy identifying this way is ye olde invisible-disabilities-don’t-count worry. I don’t want to project my own experiences onto other people, but I do worry that some people are kept from identifying as disabled because of ableism.

  44. William
    William July 14, 2009 at 9:05 am |

    These thoughts have to be put away somehow, and the concept of dismissal is sticky with a whole host of ugly ideas susceptible to the need to feel control. To say that human beings are assholes, as William has said, avoids the germaine issues.

    I don’t really see those two stances as mutually exclusive. Dismissal, as you mentioned, has a lot to do with the ressentiment described by Nietzsche, with social power, with the nature of unbalanced relationships, with greed, with perceptions of worth and value in relation to social utility (which is really ressentiment anyway), with the basic urge to hurt others that Freud wrote about following WWII, with the desperate need Alice Miller identified to subjugate those weaker to convince yourself that you aren’t weak, with the kinds of contagion/frailty/existential fears Foucualt discussed existing around lepers and the mad.

    I was responding to a specific question regarding different kinds of political/economic systems and the disabled, and I was looking for a shorter way to explain why the same problems we have today would be present regardless of the dominant economic theory.

    Therefore, a critical aspect of the disabled community’s struggle is mediating social violence and pushing to redefine what “weakness” really is.

    I see that as a much longer-term goal, but not necessarily one that is going to be especially useful early in the game. Society is invested in it’s ideas of weakness and there are a lot of people who simply aren’t going to change their minds because the cost of a new idea is their own privilege. I think PWDs ought to focus less on what society identifies as weakness and more on challenging how society responds to those perceptions of weakness. It would be great to challenge the definition of weakness, and success there might mitigate social violence (provided society couldn’t find some kind of pivot to continue treating PWDs the way it traditionally has while using a slightly different language and technology of oppression), it seems to me that if you want to mitigate social violence the best way is to defend against it.

    Personally, I don’t care how someone feels about me. I’m not interested in making friends with those in power, I don’t want them to come over when I’m smoking a brisket, or drink a beer with me over a game of cards. When I encounter someone in a position of authority I want what I am entitled to, be that the right to be merely present, the right to speak my mind, or some accommodation that society is legally obliged to provide. I feel that this is important because my experience as a PWD has often involved others trying to make me feel as if I should be grateful for the charity and magnanimity of people with power. Challenging the idea of weakness might reap some gains, but there will always be that implicit understanding that you are lesser, that society is giving you something rather than engaging in the normal exchange that it views as other’s by right.

    We should not stop demanding public and private accomodations, but we should be very careful that we aren’t demanding that societal surplus be spent on better accessibility because that will be the path that antagonists would take in *denying* us these things.

    I think thats a dangerous game. PWDs in the US are in the unique position of having both several layers of legal entitlement (both constitutional and legislative) and a recent history of other civil rights groups engaging in pretty aggressive activism (marching on the anniversary of Stonewall has always been an explicit threat of violence). More than that, we have numbers. Fuck our antagonists, they don’t know will like we do and I’m sick of playing the grateful cripple.

    then each and everyone of us (normatives included) can build the political capital to be where we want to be and be with who we want to be with without admission of anything

    I tend to get consumed by the details, but THIS goddamnit! This!

  45. Jemima
    Jemima July 14, 2009 at 9:17 am |

    I love this post. Thank you so much.

    I have suffered depression for over 10 years and I’ve been different for as long as I can remember. Not until now (I’m 25) has it come up that I might actually have a personality disorder or developmental disorder. Considering that I fit pretty much all the symptoms of Asperger’s Syndrome, I have reconciled myself with the idea that I likely have an Autism Spectrum Disorder – be it Asperger’s specifically or somewhere else on the spectrum. It did take me a while to realise that this actually qualifies as a disability. All the time I’ve only focused on how much harder I’d have to fight to get my life back on track, but in reality a dx will trigger several possibilities for help with that. Options for which I’m grateful.

    However, as much as I know having an ASD really is a disability, and truly in social situations I do feel very much disabled because I function poorly in those, I’m still terribly hesitant to tell people. Here in Denmark many mental disabilities are tabu, people know very little about them, and especially many of them are only considered disabilities by medical staff and not by the general population. This means that if I were to get disability benefits, there are people out there who’d be pissed about it and consider me a cheapskate and a freeloader mooching off the state, because in their minds my invisible disability doesn’t count.

    That makes me very hesitant to tell people about my condition, not because I don’t feel disabled – ’cause I sure as fuck do – but because my disability doesn’t count in the eyes of far too many out there, and there’s no way to tell who’s who before you tell your story. I’ve burned my fingers before, for instance by telling someone, who then proceeded to accuse me of just having given up. As if looking for an explanation for my ‘weirdness’ and possibly get some help to live my life as I’d like is the same as giving up. Unfortunately, in the eyes of far too many people around here mental disorders are stuff you can “work through” if you “get yourself together” and “deal with it”. And there’s no explaining to them that it’s genetic and you can’t bloody well cure your genes.

    I don’t mind applying the disability label to myself – only in front of others. Because when applying the label to me I’m not the only one who has an opinion on disability, what it is, who deserves it, and what counts. And I just don’t have the spoons to fight those battles. In our highly accoladed socialised health care system I already have to fight for my rights to actually get health care, and to be diagnosed by someone who shows me just an ounce of respect. But no, it’s socialised, so I don’t get to choose my psychologist, so the public health care system can offer me diagnosis and treatment with someone who’s never even read about Asperger’s before and knows jack shit about cognitive therapy, which is what most autists need to help them, I hear.

    Instead I have to get help through another public system, because I’m unemployed, and the state wants me back in employment obviously, so they don’t have to pay my unemployment benefits. But there’s no way I’ll get a job before I’m better than I am now, and that’s only gonna happen with therapy and tools to help me cope with reality. It’s actually my luck that I’m unemployed, because this means that my employment counsellor can send me into treatment by a different route.

    Socialised medicine in short: it fucks over the weakest patients, because when everyone has rights to free health care and there aren’t money enough to hire sufficient staff to service everybody, only those who demand their rights at the top of their lungs will get health care, and those who do not have the spoons to yell get ignored and shipped off to a side track, thus disabling us further.

  46. anon
    anon July 14, 2009 at 11:26 am |

    I know this is so totally a digression, but Jemima, I’d trade you U.S. “health care” for yours in a new york moment :-P

    Lots of interesting bits here. Lots to think about. Three things in particular jump out at me:

    Queer is a less-than-perfect word when you consider its literal definition, too. Yet the queer community has decided that they’re gonna take this thing and make it into what they want it to be. And they’re making something pretty damn awesome.

    I agree this is very important. I don’t know what the best word is, either, but to bring out some older history, there were different groups for the blind and for the deaf. I’ve already mentioned that in general (and historically) deaf people do not consider themselves as disabled. The blind groups lobbied for and got more types of assistance (I’m talking about well before the ADA, of course.). There is a danger in segregating ourselves out, I think and even though many of the disabilities listed here are so different (educational for me as well), I agree that it’s imperative we have something comprehensive under which to work together.

    2) I wonder how much the variability or subjectivity of a disability/disabling condition makes it harder to self-identify as a disability?

    I certainly think this is a factor and in non-obvious ways. For example I can easily pass in much of ordinary day to day stuff that does not involve communication (I am profoundly deaf; I’m the anon deafie from the “Perfect” thread). No one notices me on the streets, no one notices me in stores and such where I can easily anticipate what’s being said (change, money, nice day, etc). And really, how much different is my issue than that from a visitor who simply doesn’t speak the local language? The flip side of course comes in with a sledgehammer; people think it’s the worst thing ever to be deaf and the pity, patronization, alienation kicks in with all the subtlety of a light saber.

    I can only imagine what this is like with disabilities not only invisible, but unacknowledged. People have described that here very eloquently.

    Finally for the third point, the medical model is something I have quite a bit of trouble with, because for me, the medical model has meant numerous attempts over the decades to eradicate who we are, to force us into a mold we can never fit into, to destroy even what we could have made for ourselves, in the overriding quest to somehow “grant” us hearing, at the expense of our natural language, at the expense of our education, at the expense of so much else, that I’m actively hostile to the notion of medical intervention (I think that’s why you can see deafie arguments from decades back already making this medical/social distinction). But I see here that the issue is more one of making the medical establishment work for you, rather than going off single-mindedly on what it thinks is best for you…

  47. shah8
    shah8 July 14, 2009 at 12:26 pm |

    but anon, the medical establisment isn’t going to work for you, it works for the projection of themselves as you. If they were deaf, they who have always known hearing would want that fixed and now!

    Another one of the issues that face us is that we, us unelite folks, are not the ultimate customers of the medical system. They exist to serve either to keep the public healthy so the machinery keeps going, or the provision of health is granted as a monopoly to certain elite parties. How a doctor interacts with her patients is guided by the needs of her system. Some systems require that judgements be clear for each health care dispensation, which restricts patient interaction to the rigid terms understood by administrators rather than doctors and patients. Other systems require the maximum financial gain possible per patient and forces doctors to percieve all of their time as money accountable to the bean counters. I do believe Americans do realise the practical consequences of that.

    The odd thing is, if we did leave it to patients, we would be worse off as a whole. Remember, blogs like this are de facto highly educated with many people capable of making sound judgements and most capable to understanding when they are getting good health care or not. The average person would pretty quickly seek out folk remedies that hurt themselves or destroy the environment or exploit people (say, like Elizabeth Bathory). They would do that because most health outcomes are driven by practices that people don’t generally want to do. People also want miracle cures which, excepting antibiotics, don’t exist. Many will always go for the hope of the cure rather than take the nasty pills that only help a little.

    It’s amazing how destructive hope can be.

    It’s also amazing to me how much of a necessity bullying can be.

    I guess one key element to making all this work better is a formal aknowledgement between doctor and patient that discusses what it is that needs to be treated. Though that happens all the time, and doesn’t work because people don’t really understand each other’s terms. It has to be a zillion time worse when the patient is disabled, given how radically different the world-vews can be.

  48. Alexandra
    Alexandra July 14, 2009 at 12:33 pm |

    Um. This has been fascinating and illuminating to me. I’m currently dealing with two illnesses that don’t have quick cures and which can be debilitating — depression and interstitial cystitis. If I could wish both conditions away, I would – I hate to be in pain, and I hate the person I become when depression’s got me by the throat.

    Where I identify with what’s been said about invisible disabilities is the shame and the fear — some days the pain from the IC makes it unbearable for me to stand or to walk; or else I can’t sleep. I work full time atm, or else am a full time student. I hate to ask for time off, because I’m always wondering, could I do better? Could I be stronger?

    What makes it worst for me is that my depression often makes me defeatist. There are times when I need a kick in the pants in order to get up and go to work or to class, because it’s disproportionate and unreasonable (ill) fear that’s holding me back. And there are times where the pain’s so bad I’m afraid I’ll scream. I never know how to balance these two illnesses.

  49. anon
    anon July 14, 2009 at 12:44 pm |

    but anon, the medical establisment isn’t going to work for you, it works for the projection of themselves as you. If they were deaf, they who have always known hearing would want that fixed and now!

    Heh. Snark aside, this is actually somewhat of a big issue within the deaf community, late deafened vs born deaf. Quite frequently the more recently deaf take on the medical model of viewing their deafness versus the social model that born (or very long time) deaf take, which causes some tension. I imagine there’s something similar in blind groups, and probably for other disabilities that are born vs acquired.

  50. Frances
    Frances July 14, 2009 at 1:00 pm |

    PWD, rather than “disabled person” shifts the assumption about the person’s ability in a very useful way.

    To me, it just reinforces the same old idea that disability is located within individual bodies. I don’t understand how this is really compatible with the social model.

  51. William
    William July 14, 2009 at 1:02 pm |

    I guess one key element to making all this work better is a formal aknowledgement between doctor and patient that discusses what it is that needs to be treated.

    The thing is that there exist very good models for doing just that which avoid the problem of people using different terms, but the medical model system itself makes them very difficult to use. Both Rogers and Jung presented really good models for hashing out in advance just what is going to happen between a doctor and a client, but the medical model itself discourages such behaviors. A formal acknowledgment doesn’t mean much when it can only exist in the context of a system whose purpose is to judge bodies in relation to an illusory (if statistical) mean and then apply technologies and techniques to bring those bodies back into compliance with that mean. Changing that is an admirable goal, but anything you’d end up with would cease to be the medical model.

    Take the situation of one of my clients. Say you’re a person who has been diagnosed at intake for Major Depressive Disorder (because without a diagnosis your medical card won’t cover services). You can’t work, you can’t sleep, you’ve lost 40 pounds in the last two months, you’ve lost the ability to experience pleasure, you’re just this side of suicidal. It hardly matters how I, as your therapist, see your case. What matters is that you have to come to a hospital once a week, get eyeballed by an armed guard, and present your medical card to get any kind of services. You need a diagnosis in your medical chart. You need weekly progress notes. You need to see a psychiatrist every 6 weeks to look at your chart and write you a new prescription (because if you don’t need meds then clearly you don’t need therapy…). It goes on an on. If at any point in the process you disagree with how you are told you will be treated, your only real option is to give up services. It isn’t an interaction or a negotiation, you have no agency. Even if I, as your therapist, back you 100% the system is still designed to force you to comply. Moreover, because the medical model wears a white lab coat, it gets to establish itself as the only model through which services will every be provided.

  52. Interrobang
    Interrobang July 14, 2009 at 2:24 pm |

    I dislike the social model very much. My body is the problem, which is part of the nature of my disability. Never mind what other people think, it doesn’t do what I want it to do half the time, and I can’t trust my own body. I sometimes go to make what should be a perfectly voluntary movement, and find I’ve “lost” some part or other of my own body. (My body is treacherous that way.) I’m in pain a lot of the time, and uncomfortable nearly all of the rest. I have very little problem with social expectations qua social expectations, but I’d really like to stop having joints that feel like they’re full of broken glass, near-constant fatigue, muscles that feel like tuned-up guitar strings, and all the sequelae that come with it. I don’t really want society to pat me on the head and tell me everything’s all right, because it’s not. I want it to stop, vain though that hope might be.

    I also think the social model leaves no room for people like me — the “angry cripples” who don’t want to hold hands and sing. I’m more of a “rage, rage against the dying of the light” kind of person, honestly.

    I frankly am less concerned with getting society to accept me as I am as in changing me so that I am as functional and pain-free as possible. Because pain sucks, and if disabilities like mine disappeared tomorrow, I’d throw a party. I find the social model of accommodation less than helpful in another respect — it’s hard to be socially functional (let alone nice to anyone) when everything hurts. Don’t believe me? Try it sometime.

  53. anon
    anon July 14, 2009 at 2:56 pm |

    Yeah, I don’t see the social model as kumbaya, I love me, la la la, I’m all happy, la la la. It ain’t kumbaya when I go after mofo’s who don’t f’in caption their damn DVD’s or news broadcasts, for example. It ain’t kumbaya when I demand alternatives to voice mail trees to communicate with my government (eg jury duty). It ain’t kumbaya when I advocate for actually educating deaf children instead of wasting all their class time on getting them to say “boat” etc. The social model means I’m at the hearing world’s throat instead of off blaming myself for my shortcomings.

    Given how I see pain management is handled, from underfunding (eg, insurance companies won’t pay for it) to denial (doctor says it’s all in your head), to lack of accomodation (eg flexible work schedules to let you put in all your hours), I see a lot in social modeling that would let you manage your pain, that would let it be taken seriously enough that you can live your life while some kind of actual cure is worked on.

    The medical model takes away your autonomy, the social model puts it back in your hands.

  54. anon
    anon July 14, 2009 at 2:59 pm |

    Guess I should refresh more often to reduce the echo chamber effect :)

  55. shah8
    shah8 July 14, 2009 at 3:08 pm |

    The social model is important to you, interrobang in that it helps you send signals to the medical establishment as to what your needs are. No more, and no less.

    That’s more than it seems though…A big problem with the medical schema is that it judges how it goes about its work (including researching for therapies) according to internal norms. This very much does mean that you have a problem getting pharm companies to be serious about creating drugs that help you, since your very individual needs are difficult to translate to a market worth serving. A restructured pharm company can take advantage of the social model in various ways to create a highly flexible and multilayered research and developement strategy that more fully incorporates individuals. This was one of the real promises of genetic therapies–which we can’t fully take advantage of until the market is differently structured. Again, people taking up a social model can help restructure the market.

    On the other plane, the social model definitly can help in terms of insuring that whatever good (or pitiful, be that as it may) therapies for your pain isn’t removed from your access by gatekeeping medical officials operating on their assumptions about your needs.

  56. myriad
    myriad July 14, 2009 at 3:33 pm |

    because one of my disabilities is social anxiety, i almost never comment anywhere and am scared to now, but this entry spoke so much to me. i think it’s crystallized a lot of what i love about the disability movement.

    i’ve had a really long process with accepting that i am disabled, and still get told by many that i’m not, despite being on ssi. my first journey was accepting that mental illness (for lack of a term that i like better in this context) can count as a real disability, and that i wasn’t just being lazy. it took so long to think that i was disabled (which i often thought of as “real”, so that says a lot), even though i’m extremely debilitated, and often can’t leave the house. i never eat well because it’s really difficult for me to get to the grocery store, let alone cook.

    i’m sort of having a second journey nowadays, realizing and validating that i do have chronic physical pain and fatigue and am allowed to accommodate myself on that. i am not completely debilitated by it, and am in much better shape than most of my friends. i take the stairs, walk a lot – so i can’t “really” be disabled. but i’m coming to realize that just because i am able to override my safeties sometimes, and am not used to allowing myself to rest, does not mean there’s nothing going on. i’m still not sure – and feel like if i can walk up to my 4th floor apartment on a good day, i must be okay – but really, saying that feels like a way of invalidating myself. plus some of my mental conditions (dissociation) help me to ignore physical factors. at the same time, i want to acknowledge that i may not understand what it’s like to not be able to push through the pain, or to have it more constantly than i do. definitely don’t want to encroach on anyone’s space by saying i am physically disabled.

    every therapist i’ve ever had has encouraged me to believe i will one day be “cured” and able to conform to societal expectations. it has been incredibly freeing for me to encounter the social model of disability and the idea that i don’t need to be cured, that i just need to be able to participate, and it’s not all me that’s preventing that. i think especially for my condition/s (dissociative identity and ptsd) the medical model makes it about cure – and cure can get confused with healing – but realizing that i won’t be “cured” feels like hope to me. whereas i think my therapists are trying to give me hope with the idea that i will one day be cured.

    i know this is getting too long, but the last thing i wanted to add is that in my life this defining disability discussion reminds me of trying to define what constitutes abuse. people use a very narrow definition of abuse to invalidate, to otherize, to say it doesn’t happen often. i am very much in favor of a wider definition. at the same time, it does frustrate me when people tell me they understand what my life is like because they had x experience, and they could put it in the past, so i should be able to as well. seems very parallel, hope that observation wasn’t too derailing.

    anyway, very helpful for me to read this – i need all i can get to feel like i might be “real”, after all. thanks.

  57. peanutbutter
    peanutbutter July 14, 2009 at 3:37 pm |

    Mph. How about this instead of Amanda’s anon?

  58. peanutbutter
    peanutbutter July 14, 2009 at 3:56 pm |

    You’re finished with your guest blogging here? I’ve added your own blog to my newsfeed…

  59. Alexandra
    Alexandra July 14, 2009 at 4:04 pm |

    I really liked your comment, myriad. One of the things I’m coming to realize is that even if my depression is controlled and I reach some healing for my ptsd, I will never be someone entirely freed from depression – I will always be someone with a controlled mental illness – certain thought patterns will always be a part of my personality, to greater or lesser extents.

    That isn’t necessarily a total negative, though – I think depression has helped make me more empathetic and increased my humility. At the same time, there are very few places where I feel comfortable acknowledging my illness, because so often it is used to discredit: you experience disproportionate emotional pain, so you must be stupid, or irrational, or unable to perceive the world and reflect on it accurately.

  60. William
    William July 14, 2009 at 5:08 pm |

    At the same time, there are very few places where I feel comfortable acknowledging my illness, because so often it is used to discredit: you experience disproportionate emotional pain, so you must be stupid, or irrational, or unable to perceive the world and reflect on it accurately.

    I’ve always found that fucked up. We act is if madness precludes your thought from having any claim on reality, but the lack of historical insight required to maintain that kind of lie is baffling. I mean, Freud died by suicide and developed his theory largely from his own damaged childhood, Jung had a psychotic episode after WWI, Melanie Klein first came to psychoanalysis as a patient after a lifetime of pain, its appears as if Foucualt’s work was strongly influenced by his sexual kinks. Thats what human beings are, we’re experience and baggage and idiosyncrasy. Our past and our internal lives influence the ways in which we see and interact with the world. To suggest that somehow having an experience which has made you emotionally unique invalidates what you might have to say is to silence the whole world.

  61. dpa
    dpa July 14, 2009 at 9:08 pm |

    William #73 says:

    Thats what human beings are, we’re experience and baggage and idiosyncrasy. Our past and our internal lives influence the ways in which we see and interact with the world. To suggest that somehow having an experience which has made you emotionally [or physically] unique invalidates what you might have to say is to silence the whole world.

    William, I love this! I inserted the “or physically”, printed it, and hung it by my computer.

    interrobang #62 says:

    I also think the social model leaves no room for people like me — the “angry cripples” who don’t want to hold hands and sing. I’m more of a “rage, rage against the dying of the light” kind of person, honestly.

    I can’t speak to the social model, but I am curious if you feel that way about society in general? Because my experience has been that, when I identify as disabled to a random person (like a store clerk) for assistance or to bring a problem to their attention, far more often than not they assume I’m angry.

    and:

    …it’s hard to be socially functional (let alone nice to anyone) when everything hurts. Don’t believe me? Try it sometime.

    On the chance this comment was directed at my post I want to apologize if I gave you, or anyone else, the impression that I believe everything would be better if we’d all just be nice enough. I don’t believe anyone can nice their way into structural change.

    FWIW, I know my version of chronic pain. For over a year, I lived in a chair because of pain. Other than to go to the doctor’s office, literally the only place I went was 15′ away to the bathroom. I’ve improved distinctly since then, but I still suffer both the pain and the demons that accompanied it (depression, isolation, insecurity, vulnerability, rage, frustration, despair). Chronic pain is one of my constellation of physical and cognitive disabilities.

    I’ve had a prominent neurologist proclaim that, because he couldn’t identify what was happening to my body, it must be psychological and had important supports withdrawn as a result. (Later, it was discovered to be a physical illness he (dis)missed.) I’ve been so isolated the only people I’ve seen for 2 months are people paid to come assist me. I’ve been neglected/abused by caregivers and taken advantage of financially. I’ve gotten lost in my own home (not disoriented; lost). I’ve not recognized my immediate family.

    Through this, I’ve brushed up against suicidality. By not choosing that path, I had no choice but to cut one of my own. Is this intended to be motivational/inspiring? Oh, hell no…there’s no nobility or Lifetime movie to be made of my story. I wouldn’t wish this on anyone and, given the opportunity, would trade it in without a second thought. Am I a better person because of it? Not even a little.

    What I am is a different person. One who continues to learn who I am and how to live with disabilities. I know I wield those disabilities imperfectly. Largely because of that, I’m willing to assume other people wield their ignorance about disabilities just as imperfectly. No kumbaya. Just the benefit of the doubt.

    Can that hurt? YOU BET! Jemima #55 aptly covered that. There is no shortage of judgment anywhere. (And kudos to amandaw for going the extra mile to minimize it in this space.) But there’s also opportunity. I know very little about the deaf community. But from anon/peanut butter’s #64 I now know that one thing I can do is check to make sure my DVDs are captioned and when they’re not, fire off an email. (How about: “Can you please tell me who to contact to be notified about the exchange program you’ll have when a captioned version of this DVD becomes available?”) And from myriad #68 I’ve learned that a post, something I take for granted even if it does take me awhile, can require a sort of personal bravery I associate with a completely different context.

    Am I ignorant? Guilty on all counts. But I can learn. It may not be pretty, and I’m unlikely to do it as thoroughly or as quickly as some would like. But I can learn.

    I keep coming back to something said by the first feminist activist I ever encountered. She came to speak at my college (back when typewriters still healthily outnumbered personal computers). I don’t remember her name or the topic. But when i sat down after her talk to type up a letter to the editor, she came over and said something to the effect:

    Honey, you can masturbate those keys all you want and it won’t give you the satisfaction you’re looking for. Good activism, like good sex, is one-on-one.

  62. three rivers fog » Disability Is…?

    […] (Cross-posted at Feministe.) by amandaw on Wednesday, July 15, 2009 at 9:56 am Tags : accessibility, body image, chronic illness, culture, defaulting, disability, diversity, feminism, identity, justice, language, mental illness […]

  63. Jeanette
    Jeanette July 15, 2009 at 10:15 am |

    “What disabled people want is more like this: 1. World is prepared for any number of different things. 2. We come along. 3. Hey, we were expecting you!”

    YES Thank you so so much for writing this. Thank you also for bring disability to Feministe. Thank you for pointing out the overlap between disabled and able-bodied, the complexities of those identities and why the ADA-appropriated definition of disability doesn’t work for all of us.
    Thank you.

  64. William
    William July 15, 2009 at 6:04 pm |

    William, I love this! I inserted the “or physically”, printed it, and hung it by my computer.

    I feel kinda jealous I didn’t think to add it myself.

Comments are closed.

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