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  1. Jadey
    Jadey July 2, 2009 at 5:51 pm |

    Thank you so much for putting this out there. Self-determination > a privileged person’s sense of self-satisfaction. Saved for posterity and will be signal-boosting in my RL circle.

  2. Rebecca
    Rebecca July 2, 2009 at 6:01 pm |

    Thanks for the post; I’m a woman with Asperger’s Syndrome who wan’t diagnosed until two years ago, and I hadn’t yet heard of the various models of disability. The “professionals” don’t tell you about the models when they say “Hey, you’ve asked me to diagnose you, and you’re right. You have a chronic condition”.

    I don’t doubt some of the “experts” who “want to ‘cure’ (insert popular chronic condition here)” hope the general public will never learn about the different models. If people realize that general perceptions strongly affect how disabled people are actually treated it’s much harder for the quacks to sell their products and ideas as “cures”, since so many “cures” dehumanize the person living with a chronic condition and treat him or her as an object. For example, Jenny McCarthy et alia would love to ignore pro-vaccination people and Autism Self Advocacy Network representatives. If they don’t engage with the disabled people they’re trying to “help” and non-disabled people with overlapping interests, it’s easier for them to keep pushing treatments that studies have shown don’t work for most people.

    So, yeah. I think that “models” literature should be required reading for the literate newly diagnosed, the family of any newly diagnosed person, anyone who works in a government or public sector… heck, for anyone at all who can understand it.

  3. annaham
    annaham July 2, 2009 at 6:24 pm |

    I cannot tell you how many times I’ve heard stuff like “You’re not disabled, you can still walk!” or “At least you’re not in a wheelchair” (as if having to use a wheelchair is THE WORST THING EVAR OMG), or “You’re not really disabled–I can’t see your ‘disability,’ so how I do know it’s real?” or, my favorite, “You’re too young to have a disability!” I have heard all of these things from able-bodied people, repeatedly.

  4. EKSwitaj
    EKSwitaj July 2, 2009 at 6:31 pm |

    Personally, I like referring to my Aspergers as a dis-order because I think of it as something that disorders social expectations around me.

  5. Lis
    Lis July 2, 2009 at 6:46 pm |

    Amandaw–I’m a little puzzled as to why people with “severe” mental disorders are excluded from your call to solidarity. Could you elaborate on that?

  6. thezackwastaken
    thezackwastaken July 2, 2009 at 6:46 pm |

    At the risk of being redundant, I’d also like to thank you for this post. I have a mental condition (my preferred term), and there are times, more frequent than I would like, when I really do feel like I should be able to just “suck it up” (actual quote). Most of the time I do take pride in my condition, focusing on the good. But when people speak out like you have here, it really does help combat society’s pervasive negative influence on people with “disabilities”.

    As to your last point, about doing more than changing a word in your vocabulary, a great way to truly help out people with mental conditions is to volunteer at a crisis hotline. A lot of the people who call suicide hotlines in particular feel like they’re bad people just for needing help, usually because of the stigma surrounding whatever “mental disability” they have. It’s a bit of a time committment, but you can literally save lives.

  7. Anna
    Anna July 2, 2009 at 7:01 pm |

    Amandaw, as you know, I really respect you and I really love this post, and am totally going to link many people to it when I get a chance.

    I would like to request, however, that you consider that there are people who read Feministe who have Borderline Personality Disorder, and find it a bit distressing to be talked about as though we aren’t here. And by “we” I mean me, although I suspect there are others *waves hello*.

  8. GallingGalla
    GallingGalla July 2, 2009 at 7:10 pm |

    amandaw, thank you for writing this. i have asperger’s, anxiety and depression, and chronic pain (complex regional pain syndrome). with all of these, i am treated like a malingerer or told platitudes like “just work on your motivation” or “can’t you just work through the pain?” and i’m getting very tired of it. i’m also getting tired of employment model (i am a web developer) that, even for intensly technical jobs, values flash and glitz and glad-handing over technical expertise. with my asperger’s, i don’t engage in the flash, glitz, or glad-handing, and therefore i don’t get hired. i get told “oh the other candidate showed more self-confidence” or “put on a presentation that really wowed us”.

    add to that the fact that i am a trans woman and therefore get dropped like a hot potato as soon as i out myself – which i have to do because of the damned Patriot Act and its gender no-match letters, and i am now looking to work in Starbucks or such like and have given up on continuing my career.

    info technology was built by geeks like myself, and there’s a high proportion with autism-spectrum conditions doing this kind of work. but we are getting pushed out as the suits increasingly value flash-bang over skills as time goes on.

    i do take a bit of issue with this part of your article:

    These are the people who police that boundary. These are the people who try to shame you. Not disabled people. Abled people.

    this story scares me – a wheelchair user policing two invisibly-disabled people (one is deaf, the other has an immune disorder that makes it difficult for her to walk); he called them both “walkie-talkies” and demanded that they use the stairs, and this happened at an ADAPT action.

    i have been subject to this kind of internal exclusion (linked author’s term) and border policing within the trans community to the point i have largely left it; i cannot see joining a disability community if i am going to be policed by other disabled people.

  9. William
    William July 2, 2009 at 7:11 pm |

    Amandaw, great post.

    I’m particularly glad to see you talking about how changing language isn’t really enough. I think that in a lot of discussion about both disability and madness we tend to, as you mentioned, get caught up in language. We change our vocabulary by changing words, but we don’t bother to think about why we change words much beyond some kind of feel good garbage. We’ll trade out one term for another because we have some vague notion that it “makes people feel bad” and then we’ll exert social pressure on others to do them same, but we don’t often consider why the word needed to be changed in the first place. Being called a retard in school didn’t hurt because it was an ugly word, the offense I took wasn’t one of aesthetics. It hurt because I knew that it separated me, because I knew that it made me different in a decidedly negative way. It hurt because of what the word meant, and all too often it meant the same thing as the “better” words used by teachers and administrators. Changing the label from “retard” to “profound nonverbal disability” and the tone from hate to pity didn’t do much for me except expose me to a more diverse range of horse shit and shame.

    Also, I’m really glad you used the word exclusion. I’ve been reading a lot of Foucault lately for my dissertation and I’m really starting to think that his theories about how social space is divided in regards to the mad is an excellent model for understanding the social response to both madness and disability.

  10. Anna
    Anna July 2, 2009 at 7:22 pm |

    he called them both “walkie-talkies” and demanded that they use the stairs, and this happened at an ADAPT action.

    O.O Holy shit. That’s nasty. :(

  11. hannaka
    hannaka July 2, 2009 at 7:26 pm |

    Having been a lurker on this site for a long time, I feel the need to say something in relation to this post.

    It is great that disabled people are being recognised at an inherent part of the feminist movement, but there are a lot of issues that remain problematic.

    Firstly with respect to language: when engaging the social model, in the UK the phrase “people with disabilities” tends not to be used. If someone “has” a disability, it is internalised, yet if they are a “disabled person” it puts the emphasis on the society/environment in whcih they live. This has been less of an issue in the US but I still feel that the distinction between “impairment” and “disability” is incredibly important, and our language can enforce either positive or negative uses of the words.

    Secondly, let’s think about the things which are so integral to the feminist movement – reproductive rigjts, prenatal screening, representation of women etc etc. These issues are incredibly problematic to disabled women. For example with prenatal screening – what is one woman’s reproductive rights becomes another woman’s abortion as a result of a perceived ‘fault’ with a fetus. (Bear in mind that I – and many disabled women – are pro choice but…) this creates a friction between feminist values and disability rights. Okay, so what about the objectification of women? The feminist movement has fought for women to be represented as something other than mothers, wives, sex objects. Yet disabled women never even get the opportunity to be portrayed as such. They are never perceived as taking on these traditional female roles, are assumed as asexual, and so the struggle of the feminist movement to distance themselves from this representation denies the experience of the disabled women who have never been assigned these roles. Some of whom will want to ascribe to them, and some of whom won’t.

    I guess what I am trying to say is that this topic is more complex than this post, or my comment, can extrapolate on. Disabled women have, for a long time, encountered tensions within the feminist community, and as feminists it is important that we adress these issues and continue to ,ake the feminist movement as inclusive as possible.

  12. Anna
    Anna July 2, 2009 at 7:44 pm |

    hannaka, you’re absolutely right. However, this post isn’t really expected to do that, nor would just one comment from anyone here be able to properly address those and far-reaching related issues.

    Amandaw is guest posting here. She did this last year as well – if you click on her name, it will show her posts from last year. As you are aware, there is a lot of pushback when people with disabilities (I’m Canadian, we follow the US usage) and their allies attempt to talk about disability and feminism (I’ve been reliably assured that if Feminism takes on the issues of disability/accessibility and dis/ablism within the community, it will somehow dilute Brand:Feminism, and that would be horrible /bitterness). Often these posts, like other issues such as racism and trans misogyny, will end up at some point in “Please sum up the past 20 years of disability-related activism in the U.S. to me, because I cannot possibly be expected to do my own reading on the subject, and I find Google is only good for finding pictures of pandas.”

    Amandaw isn’t really trying to sum up Disability & Feminism, and the conflicting and related needs of each, as far as I can tell. I think it’s too much to expect one person to do, especially during a two week long guest posting gig.

    My impression of guest posting in the past has been to give regular readers of Feministe – which is a pretty big soap box – a chance to experience the writing and work of people (mostly women) with different perspectives, and encourage people to seek out these blogs and related blogs on the subject.

    I think there’s so much to say on these topics, so very much, but there’s only so many spoons, you know?

  13. Emily
    Emily July 2, 2009 at 7:46 pm |

    I don’t consider myself disabled, but I have been diagnosed with a couple of mental illnesses, namely depression and bulimia. I don’t really have anything to say about your thoughts on physical disability, but I see a difference between that and many mental illnesses. This may not be what you meant, but if mental illnesses are analogous to physical disabilities, it seems like you want to reframe mental illness as something not really wrong with the mentally ill person, but a failure on the part of society to accommodate that person.

    This rubs me the wrong way because many mental illnesses are, in and of themselves and regardless of how society treats someone, hellish states of existence. My depression has, mercifully, never been too severe, but I imagine that for severely depressed or bipolar people life in a depressive state is horrendous. I know from my own experience with eating disorders that having a mental illness can be nightmarish, and it wasn’t because society just didn’t accommodate my insanity. For people with schizophrenia, I also imagine that certain delusions cause them tremendous pain, stress, fear, anxiety, all kinds of negative emotions that are the result of an illness, not simply a mismatch between their condition and the way society is set up.

    It’s important for me to recognize my own mental illness as something unequivocally undesirable. An eating disorder is a little different from schizophrenia or bipolar, I think, in that it has a large psychological component, as opposed to physiological, and in that it is essentially self-harm, almost a condition imposed upon oneself. As far as more organic illnesses are concerned, like I said I don’t have any of those, but it pains me to think that people with severe mental illnesses would not be given treatment because their disease is seen as a mere deviance, and not a problem of any sort. The result of this would be that these people would be trapped in a miserable existence.

    I guess the main point I’m making is that I think a distinction needs to be made between disabilities which don’t really harm an individual, like blindness for example, or any other condition in which a person can live a happy, full life provided that they are properly accommodated, and disabilities and illnesses which do visit profound harm upon the sufferer, as do many mental illnesses. I hope I don’t have to say that I don’t think that mentally ill people or any other people with disabilities should be marginalized or ostracized or anything like that; I simply mean to say that the fact that many of these people suffer deeply due to their illnesses should be recognized and that treatment, insofar as it is available and useful, should be embraced.

  14. Emily
    Emily July 2, 2009 at 7:50 pm |

    “Deviance” in the next to last paragraph should be “variance.”

  15. GallingGalla
    GallingGalla July 2, 2009 at 7:56 pm |

    emily @14: yes. my asperger’s is a part of me and something that i never want to erase or “cure”; however, i have had chronic pain for 14 years and i would like it to just. go. away.

  16. thezackwastaken
    thezackwastaken July 2, 2009 at 8:11 pm |

    To Anna @8: *waves back* I’ve got it too, albeit a mild form.

  17. Lis
    Lis July 2, 2009 at 8:17 pm |

    Amandaw: apparently I was just horrendously oversensitive from an unrelated conversation, and read your statement in the worst possible manner. I’m very glad to see what you meant, and I wholeheartedly agree with you. :)

  18. gudbuytjane
    gudbuytjane July 2, 2009 at 8:21 pm |

    Everyone’s thanking you, and I will too. Thank you for this post! I have mostly-invisible mental health conditions (although I sometimes exhibit behaviours like auto-motor agitation, so if you know what to look for you’ll see it), and I struggle with a great deal of shame about that. I suppose I feel that as a trans woman I am dismissed by so many people already, if I am too open about my mental health I will be dismissed entirely. Reading pieces like this makes me feel a lot less shame.

    Thank you, too, for pointing out the bias people have about the ‘serious’ and ‘less serious’ mental health conditions. I think sometimes broad terms diminish the understanding of the severity of some types of the condition. My depression has nearly killed me a few times now, and that feels pretty serious. Still, I’ve had people use their apparently milder experience of the condition to chide me to “get my shit together” because they could when they were depressed.

    Language is hard (oh, trust me do I know, I’ve spent a week debating and raising consciousness about people trying to erase ‘cis’), and it’s so easy to fuck it up. My current least favourite term is TL;DR. I realize its intention isn’t to silence people with certain mental health conditions, but I think it nonetheless does at times. While verbosity can be the sign of many things, it is sometimes a symptom of a communication focused-mental condition. Mania, obsessive-compulsive symptoms, ADD hyperfocus, and others can fuel a high word count. Still, I am used to hearing otherwise-decent folk dismissing things as a “crazy rant” (which feels like the “progressive” ally mental health equivalent to calling Ann Coulter a trans woman. Oh, progressives, and you wonder why I have trust issues). If you don’t want to read something, fine, but maybe hold back the snark. Or better, maybe read and give the person a chance to be heard. When your symptoms cloud your ability to feel heard, having someone show they did hear you is appreciated so much.

    Thanks again, and I am looking forward to reading more of your writing!

    p.s. Go Pens! :)

  19. RMJ
    RMJ July 2, 2009 at 8:47 pm |

    Hey, this is a great post. I will be returning, and linking.

    I’d like to hear your thoughts about temporal conditions. I have OCD which is sometimes disabling and sometimes not. Today, I would describe myself as having able privileges, but I wouldn’t say the same of myself in January-April of this year.

  20. Croobie
    Croobie July 2, 2009 at 8:49 pm |

    Thank you for the post. I admit that I hadn’t really thought a whole lot about the language society uses for disability, except possibly for what term (or terms) I should use to describe myself, if any. I have several speech impediments, my stuttering being the most embarrassing and least frequent. I’ve had people ask me about my ‘accent’. It’s to the point where my coping mechanisms for my stuttering make it difficult for me to speak up in classes. I don’t know if I want the disabled label. I work in at a theme park interacting with guests. My differences are not obvious until I speak. “Disability” describes one minor thing about me, if it does.

    Perhaps whether or not I claim the label is irrelevant; people will make flawed judgments of where I fall on that abled-disabled ‘spectrum’, make flawed judgments of my intelligence, make flawed judgments of me as soon as I choose to speak.

  21. Betsy
    Betsy July 2, 2009 at 9:05 pm |

    Emily, I was going to say the same thing. I have “mild” depression, and my partner has struggled for years with incredibly severe depression, the worst I’ve ever seen that’s not actually suicidal (thank god). There is no society in which this could be a good thing. It is just fucking awful. It IS a mental illness, I will certainly stand in solidarity with other people with mental illnesses, but I retain the emphasis on ILLNESS. I can’t speak for any other person or about any other condition, but I can say that depression is a vampire – it can suck you dry of happiness, energy, self-love, engagement with the world, friendships, family – there is NOTHING good or even neutral about it, IMO.

  22. gudbuytjane
    gudbuytjane July 2, 2009 at 9:17 pm |

    For me (and I do have cyclical severe depression which, yeah, is hell, and has put me in the hospital before) I see the difference is between saying “YAY! I have a mental illness!”, which I wouldn’t do, because it is hell, but instead being able to say “YAY! I don’t have to be ashamed about having a mental illness!”, which is a really nice idea.

  23. bellareve
    bellareve July 2, 2009 at 10:31 pm |

    Count me as another person who loves this post!

    I have multiple disabilities, all invisible, including sight impairment, a mood disorder, & a learning disorder related to visual-spatial processing. On top of that, the meds I take to manage my moods (and basically to keep myself alive) have really shitty debilitating side effects. I like that I can discuss this on Feministe without worrying that someone will say I’m “whining” or “wallowing” or indulging in self pity, etc. Overall I feel this blog is a safe space for pwd, with the exception of a few insensitive comments on mental illness that seem to sneak up every now and then.

    For me, the terminology isn’t a big concern (although I completely recognize how much it matters to others) nor is the organic experience of my symptoms. Social prejudice and lack of accommodations are what can really make my life a living hell. This includes difficulty accessing and affording healthcare (In my case vision & psychological care). And the expectations that because I “look normal” I am capable of certain things. And potential job discrimination that is actually perfectly legal. Etc.

    Looking forward to more on this topic!

  24. victoria
    victoria July 2, 2009 at 10:32 pm |

    Chiming in as another person with “invisible” conditions/disabilities… I remember a terrible experience during an intake interview when I was trying to get access to services b/c I was ill and unable to work. Question: “Do you have a disability?” I answered yes, I’ve had epileptic seizures since I was a teenager, and chronic bouts of anxiety and depression. Pause. “But do you have documentation from a proper government agency certifying that you have an actual disability?”

    um, no, I didn’t. I’d spent most of my life “sucking it up,” trying to blend in and be considered just as normal and capable and not in need of handouts that no, I’d never gone through the process of getting myself a piece of paper proving that I was “deserving” of aid because I was “truly” disabled. No, instead I just worked myself to the point of exhaustion, to the point of having crippling anxiety attacks and to the point of being severely and dangerously depressed, only to be told I wasn’t really wasn’t disabled enough to warrant claiming that label for the sake getting the assistance I needed.

    At the time, I didn’t argue, I didn’t press the issue. I just further internalized that judgment and felt even more shame at my inability to cope.

    I’m a strong believer in the social model: disability becomes much easier to cope with when there is a community of support, instead of societal boot on your neck yelling at you to stop being so lazy and just get up already.

  25. sophonisba
    sophonisba July 2, 2009 at 11:04 pm |

    Disability can have negative effects. It can also have positive ones! We code disability as this awful tragedic thing which is unquestionably negative. Rather than just being a different state of being. It varies by condition, but there are disadvantages to certain conditions — and there can also be advantages, but we’re trained not to look at those.

    I know Hamlet said there’s nothing either good or bad but thinking makes it so, but he was, you know, depressed.

    Amanda, I feel like you’re a few steps away from a false consciousness argument and I think it is putting a lot of people on edge. I believe in the right of all people to self-define and to be the ultimate authorities on their own lives, but I do not believe that we experience pain as pain, misery as misery, and powerlessness as powerlessness merely because we have been “trained” to do so. Many of us have also been trained to put a happy face on everything and smile through the pain, but I wouldn’t use this fact to argue that those who find meaning and positive things in their disabilities are just fooling themselves.

    It is a damaging and persistent myth that particular types of mental illness come with built-in compensations in the form of increased creativity, intelligence, and connections with god knows what all. Is it a useful coping mechanism to believe that your disability gives you special abilities? For some people it is. Is it true? Not so much. I say this as a depressive person with artistic pretensions; I know what it’s like to be attached to the whole of your personality and your self such that you see inevitable connections between your gifts and your suffering, and it is true that a lot of unhappy or ill people are smart or creative or both. But this doesn’t mean that the goodness or badness of depression or schizophrenia becomes all a matter of perspective.

    It’s like the way some people in wheelchairs (real people, not only Saintly Cripples of patronizing myth) find great capacity for endurance and patience as a result of necessity: it happens, but this is a good thing about human beings, not a good thing about disabilities. And I think you are illustrating why it is that many depressed people shy away from identifying as disabled: the stigma is part of it, you’re right about that, but the insistence that whether a thing is good or bad depends on how you look at it will give a lot of us nasty reminders of being told that we can be happy if we work at it. That being happy is a matter of seeing the bright side of things, not focusing on the negative. And then, depressed people often have a very long and hard struggle to accept that what they feel isn’t real, that is, isn’t reflective of an objective reality. That just because we feel worthless and pointless doesn’t mean we are; that what seems endless isn’t, really–that there is a fixed reality outside our oppressive emotions, and with work we are able to see it more clearly. So coming from that struggle into this idea that we can control reality by deciding how we want to look at it can be very upsetting and off-putting; it feels like going backwards into instability, not forwards into enlightenment. I think if you get a lot of pushback from depressed people, this is a good part of why, this talk about coding and training, even though I can see it is not what you intend or mean by it.

  26. Ami
    Ami July 2, 2009 at 11:42 pm |

    There is merit in the medical model of disability, even if it has its flaws of focusing on the individual and describing them in relation to what is “normal”.

    I was diagnosed a couple of years ago with bipolar disorder and it has been a battle, particularly as a university student, to obtain the accommodations that I need to succeed the way that students who do not share my condition are able to succeed in the school environment. So yes, I think that the social model is critically important to improving the lives of people living with any disability. It is difficult and frustrating to constantly question whether or not I should disclose my invisible disability, and I come upon people who are uncomfortable with it, or even people who don’t believe it because they can’t see it. A more open and accepting society would be somewhat of a utopia for those of us suffering with mental “illness” and other conditions.

    But to dismiss the medical model seems to suggest that if there are ways that medicine can make our conditions easier to handle, make our lives more comfortable, and lessen the physical or emotional pain that accompanies these conditions, that accepting these treatments implies we are not proud to be members of the disabled community.

    I have found strength and benefits to my condition, but truthfully if someone were to offer me a “cure”, I am quite sure that I would take it. Not because I am ashamed or wish to be “normal”, but because I would rather not live with the symptoms.

  27. Lyndsay
    Lyndsay July 2, 2009 at 11:48 pm |

    Sophonisba, I feel like what amandaw said in that quote could be directed especially to abled people and the greater society which “codes disability as this awful tragedic thing”. When I think of what I’ve read, it seems society either expects a person to get over their disability (particularly if it’s invisible) or be constantly affected by their “tragic” disability.

    This quote, “We code disability as this awful tragedic thing which is unquestionably negative. Rather than just being a different state of being,” makes me think of some study I heard about that found that people who won the lottery a year ago and people who became paraplegic a year ago had about the same level of happiness. But people wouldn’t approach those people in the same way.
    This post and the comments is another reminder to me to not make assumptions. People with the same condition will experience it differently. Some people will adjust remarkably if they become disabled (I’m thinking of a girl who lost her arm from a shark attack while surfing). People like to hear those stories best I think but there are all different experiences.

  28. stlthy
    stlthy July 2, 2009 at 11:49 pm |

    I’m inclined to agree with Emily and Sophonisba in many respects. I have severe depression and anxiety, and have had major problems with self injury and an eating disorder. There’s been nothing positive in it. It’s actually pretty much destroyed me for the past decade and a half – it’s wrecked my education, career, social life and so on and so forth. It hasn’t been a matter of being ‘differently abled'; I’ve basically been non-functional.

    However, amandaw, your writing has been a huge relief to me. One of the things that has worsened my MI issues has been huge amounts of shame over being ‘crazy’, and being a lot less accomplished and productive than I should/want to be. Our last government (in Australia) engaged in a lot of shaming of PWD with regard to social services and so forth: they were obsessed with the idea that people with disabilities – especially invisible disabilities – were just faking in order to get benefits and/or could choose not to have disabilities if they just tried hard enough, etc…and that just made it so much worse. So yeah, the idea of not viewing limitations as shameful, and the ideas in the social model are a huge relief to me. So, thank you.

    Anyway, sorry for the somewhat OT ramble.

  29. Sarah
    Sarah July 2, 2009 at 11:55 pm |

    Amanda, thanks for a great post which opens these issues up for discussion. I was disappointed with the turn which your previous thread seemed to take, as I’m rather wary of the popular discourse which privileges the narratives and experiences of non-disabled family members. In the autistic self-advocacy community, we are working very hard to counteract the popular narrative that autistic people (including those with diagnosed “Asperger’s”) are burdens who make our families’ lives miserable by virtue of existing. And I do think that a family member who does not have a particular disability is in a relatively privileged position when discussing said family member. It’s complicated.

    The points raised in this thread about comparing physical “illness” to mental/neurological illnesses/conditions are interesting. In my experiences, those who make the equation are often trying–in an uninformed way–to be accommodating and understanding. And certainly I know that everyone with any sort of disability shares common ground politically. But there are limits to analogy. The Dean of Students at my alma mater once compared my Asperger’s/autism to diabetes in an attempt to be compassionate, and I just don’t think that kind of analogy works, and I know that most autistic self-advocates (myself included) oppose that sort of analogy. (If I ever see a pancreas diversity movement, I might have to rethink a lot of this. ;) )

  30. lauredhel
    lauredhel July 3, 2009 at 12:35 am |

    I think there’s maybe an aspect of cross-purposes here that hasn’t been quite pinned down in this thread, and that’s about who gets to construct and define disability.

    With “We code disability as this awful tragedic thing which is unquestionably negative.”, I read the “We” as meaning “Society as a whole, which is dominated by able-bodied folk”. I think (perhaps?) that some people read the “we” as meaning “we, people with disabilities” – would that be correct? To talk about false consciousness I think you must be using that interpretation?

    We as people with disabilities get to describe and define our own experience – absolutely! But those outside of it, able-bodied folk, do not get to come along and unilaterally define our lives, our very existences, as tragic, and I think that’s what was intended.

    I didn’t read amandaw’s words as an exhortation to PWD to buck up and think positive and “overcome”. I read her as talking to able-bodied people to, as a _starting_ point, listen to us and our variety of stories, as wide a variety as any other human experience, instead of trying to tell us how we should feel and think and live.

  31. William
    William July 3, 2009 at 12:41 am |

    I believe in the right of all people to self-define and to be the ultimate authorities on their own lives, but I do not believe that we experience pain as pain, misery as misery, and powerlessness as powerlessness merely because we have been “trained” to do so.

    You seem to be arguing for an absolute and transcendent reality. You cannot at the same time believe that people have the right to self-define/be their own authorities and at the same time believe that there are certain things which are simply true. If all pain is pain regardless of the experience of the person who is receiving that stimuli, then people cannot determine how to frame and understand their experiences.

    I’ve spent a good portion of my life dealing with chronic, severe depression. I’m also afflicted with a cluster of fairly serious, if invisible, disabilities. Now, I don’t really see either as being a blessing, but I have made what I have of them. If I didn’t experience the incredible lows that I do I wouldn’t appreciate the highs as much as do. If I hadn’t have been constantly challenged by my disabilities I wouldn’t have developed the will and ability that I have today. Even in a direct material fashion my disability has granted some offsetting ability simply because I have had to hyper develop certain skill sets to compensate for things that I will never be able to do. Perhaps someone else in a similar situation might not see things in the same way, but I have made a conscious decision to view my life from this lens. I believe that this is what Amandaw means when she talks about training.

    It applies more to disability than it does to madness because we have some romantic notions of madness in our society, but one thing anyone who is disabled comes to learn very quickly is that they ought to feel shame. You are told in a myriad of different ways that you are a burden. You learn that you will be seen as lazy if you do not fight just to get what you need, but that you will be seen as an ingrate the moment you forget to thank others for their “charity.” Your disability becomes a burden not just because of the limits it puts on you, but because of the limits that society attaches. You learn that you are inferior, diseased, defective, disabled. You’re a broken toy.

    After however many years of this you go through, it becomes very difficult to see your disability, and thus yourself, as anything less than a deficit. The way some of us manage to overcome that is to make a conscious choice and live our lives actively refusing to buy into that bullshit. I dodge the pain of writing by choosing not to give a shit of someone takes offense at my penmanship and then I take consolation in the fact that I can type over 100 words a minute because for so many years I had to. I value and actively cultivate my ability to process visual stimuli in novel ways because I cannot properly process spacial information. I glide through a tough graduate class because I read Nietzsche in the park instead of going to a geometry class I knew I’d fail because my brain simply couldn’t complete the task.

    Maybe those are compensations for some terrible thing that was put on me. Maybe they’re biproducts. Maybe they’re some combination of luck and accident. I don’t care how someone else choose to see them. I’m the one who gets to decide how I’ll label them. I’m the one who gets to draw meaning from my experiences. I’m the one who decides if the pain I have felt is worth it and if I choose to see it as suffering or growth.

    So yes, “Theres nothing good or bad except thinking makes it so.” In a world that defines me and attempts to tell me by what standards I ought to judge my happiness, I feel I have a choice. I can be miserable and thank nice able people for the help they give me. Or I can say “fuck it” and find a way to make myself happy. I spent 20 years trying to do the former and all I ended up with was a C- average, a coke habit, and enough self-loathing to work out how to kill myself with minimal inconvenience to others. I’m done with that.

  32. Bagelsan
    Bagelsan July 3, 2009 at 1:59 am |

    “Society as a whole, which is dominated by able-bodied folk”.

    *Is* society dominated by able-bodied people (numerically)? It seems like everyone I know is disabled one way or another. (Not talking about whether or not the public discourse is controlled by ability — it is — just wondering whether there are actually more people without any kind of disability than with one.)

    What with the prevalence of invisible disability it seems almost impossible to determine that *anyone* is able, so how is *anyone* excluded from defining disability? Even the people who swear up and down that they’re “normal, dammit!” seem to have issues. I had a friend who was the most able-privileged person I’d met in my life (“I don’t get sick or sad ’cause I exercise a lot!”) until she had a nervous meltdown and tried to kill herself, making our group of friends 5 out of 5 for people with mental conditions. :p (Well, if you count dyslexia/disgraphia. Otherwise 4 out of 5.)

    Having mental problems doesn’t mean any of us know shit about getting around in a wheelchair, though; we’re no more enlightened than the general public when it comes to issue outside our narrow personal scopes of anxiety/depression/Aspergers/etc. So I feel a little silly falling in with the people with “real” disabilities, to put it bluntly. (Not to mention I basically got better. Off my meds for a few years now, doing fine. Completely functional. I’m I still “in” now? Who knows.)

  33. Bagelsan
    Bagelsan July 3, 2009 at 2:10 am |

    I really do think the power to self-identify has limitations, especially when it comes to depression, etc. When I was depressed I identified as a pathetic loser who deserved to die but was too lazy to finish myself off, but that’s not an identity that anyone else should (or did) accept or “respect” or anything. The most helpful thing for me was having mentally able people around me tell me that my thoughts were bullshit (the ones who weren’t mentally able — my depressed friends — saw no problem with a continual downward spiral.) So I like the post but I think that it’s a little too accepting for some bits; the medical model saved me, and having society accommodate me would’ve screwed me over.

    So, hopefully this isn’t offensive, but what if you get people who identify as genuinely disabled (as in, “I can’t walk so I suck at life”) or something. Is it still alright for abled people to say “hell no, that’s ridiculous” or do they have to bite their tongues so as not to decide what that person’s life is like? (I guess you could argue that that kind of talk would be depression not anything physical, but when you’re depressed you think you’re just realistic: who’s to say that “my life sucks” isn’t in fact the truly *realistic* view of things?)

  34. anarchafemme
    anarchafemme July 3, 2009 at 4:29 am |

    @ #19 godbuytjane : I definitely intensely dislike seeing the TL;DR, because I tend to get very verbose when manic, or really paranoid (and thus feel the need to clarify everything).

    @ #14 Emily: I appreciate that you’re not talking for anyone’s experiences other than your own, but as someone with a bipolar diagnosis (and with other diagnoses, plus related madness on top of that), I don’t identify the condition as having anything to do with “brain chemistry” (and that model has next to no evidence). I certainly wouldn’t classify it as a hellish state of existence; I experience it as leading to intense spiritual experiences, perception of realities other than the consensus one, and getting to experience a far wider range of emotions than everyone else. Yes, society makes it really hard to function, a lot — there’s the social model. And yes, I feel like psychiatry has a totally different set of problems than western allopathic medicine. I don’t identify as mentally ill — but as mad/crazy, and mentally diverse. But those are my experiences of it, I just cringe (especially given the history of discussion of mental diversity here) whenever people start generalizing their mental diversity experiences to people with really strongly stigmatized diagnoses.

    And, yeah, my physical disabilities have a lot of pain involved in them that are going on regardless of the accomodations I specifically get (though, the wonderful thing is they are all aggravated/caused by the larger scale things our civilization has done, but that’s tangental); it doesn’t mean for me that the social model doesn’t apply, because I don’t view the state of having chronic pain to be a defect, but a difference. And as much as that chronic pain can be horrible, it does give me some benefits — early warning that I’m pushing myself too hard, warning that I’m in a really toxic environment, etc. Once again, only my experience, though.

    @ #28 sophonisba : I would say that it is definitely not universally true that people who have certain mental diversities aren’t more creative, don’t have special gifts because of it. This is not to say we all do, but some of us are more creative, things that get labelled as hallucinations provide some of us with valuable information or additional ways of perceiving the world. That’s not just a coping mechanism on my part, or the part of others that feel that way, and I feel like putting it in the terms you did is patronizing and trivializes our experiences. Clearly, there’s a wide spectrum of mental diversity experiences, from those who see it as an illness that they want to cure, to those of us who see our madness as an integral part of who we are, that, outside of societal biases and stigma is overall a positive experience that is an essential part of the unique gifts we have. There’s room for all these perspectives in dis/abilitiy and mental diversity movement, but I think generalizing from one’s own experience to a universal statement about the experiences of all mentally diverse people starts to close down that room.

  35. Natalia
    Natalia July 3, 2009 at 6:49 am |

    I think this can be such an intensely personal topic, ya’ll, that a lot of the definitions we use for this condition and that can never be fully agreed upon. Also, I think they can change as we change – learn, adapt, progress, see the world in a different light, etc.

    I associate my experiences with PTSD and ensuing depression with pain and horror above other things. When I was younger, I believed that my creativity was fed by depression. I even went as far as bully friends who went on medication. The irony is, after I went far enough down the rabbit hole to realize that I needed treatment, and got it, I probably became 100% more productive as a writer.

    Maybe 20 years later, if I make it that far, I’ll see it as something completely different, who knows? Nobody’s static. Right?

    I see the way that society insists that anyone with an invisible disability or illness or condition just “deal with it” too. At the same time, I personally embrace a lot of the negative language around being in pain, I make fun of myself for being depressed, I think it’s pretty LOLworthy when I find myself, say, on the verge of throwing up because of some inane fear brought on by the linger effects of PTSD – because making light of it helps me cope, and I don’t think I’m the only one like this.

    I think that when it comes to our close relationships in particular, sometimes, you need compassion, and other times you just need a friend to say “OK, I don’t care if you think you’re about to be eaten alive by cannibalistic ninjas if you step outside – you are getting out of bed and we are going out.”

    If that makes any sense at all.

    And thank you, Amanda, for this post.

  36. R
    R July 3, 2009 at 7:19 am |

    I am never sure how to define myself and it changes quite often. I have mental health difficulties but am not too severe on the spectrum. Sometimes I am quite normal although I appreciate that my understanding of “normal” may be confused by my mental illness.

    I was quite ill recently and was annoyed when a colleague described my difficulties as “just life stuff, it happens to everyone”. Well, to an extent everyone will know at some point what it feels like to be anxious, afraid, unhappy but if you are generally healthy mentally it will be of short duration and severity and will often have a clear cause. So in response to him I wanted to be clear that I have differences to him and other “normal” people.
    I don’t know, I haven’t been diagnosed as such (a doctor hasn’t defined exactly what’s wrong) so I do sometimes feel that I am not allowed to describe myself as disabled. But at work I have to use the language of disability in order to get the adjustments I need.

    Sorry, this doesn’t add much.

  37. Bakka
    Bakka July 3, 2009 at 8:53 am |

    Thanks for the post. I thought it was incredibly interesting. I wanted to mention a book that was recently published by Jackie Leach Scully
    http://bit.ly/YDLjc
    called “disability bioethics.” In this book Scully has a really interesting chapter (5) about the way that embodiment affects linguistic metaphors, often in ablist ways. For example, she suggests that phrases such as “look up to” “taking a stand,” “to be an upright person” or “to be high born” derive from the experience of acquiring an upright posture in childhood. These things are usually associated with positive connotations. Similarly, we often use the idea of “balance” to discuss things we value highly, or negotiations we thing are going well.

    Scully is deaf, and she writes about how certain phrases have different connotations for people with various different embodiments. She says that for her, “I see what you mean” is a phrase that she is comfortable using because she is visually biased. In contrast, “I hear what you’re saying” is a phrase that does not resonate in the same way for her and that she does not feel comfortable using, in part because (to quote here), “that phrase is phenomenologically impoverished for me.” (98) She says it is not that the meaning of the phrase is entirely absent for her because it does not convey the deep connection that it is supposed to connote.

    I found this book really interesting. It made me re-think the way I speak and the way different phrases have positive or negative connotations. Scully also argues that the variety in embodiment can positively contribute to what we know about our moral selves.

  38. Maria P.
    Maria P. July 3, 2009 at 9:11 am |

    When I was a university student, I discovered that a friend in my dept’s graduate program was also bipolar. I had never thought of the condition as being anything but a burden. He explained that he saw it as a blessing in disguise. I was fascinated to hear how he adapted his life to ‘ride the waves’ and to discover what he could (and couldn’t) do at different points. The idea of adopting a radically different idea of normalcy snagged me, and I adopted it for myself. I do take medicine (keeps me out of the emergency room) but I try to be aware of where I mentally am so that I can play to my strengths… Or be honest about what I can’t do. I’m lucky that I’ve had supportive doctors and family members.

    I dream of a society where I wouldn’t have to take expensive drugs to keep myself ‘functional’, though. If there was a treatment that would permanently change my condition, I wouldn’t take it.

    Obviously, this is just my own story, and I claim no universal truths. But, since we’re sharing out experiences, I thought I’d join in. It’s only recently occurred to me that throw my lot in with the disability community. Just going to keep on reading until I find the place that feels right.

  39. Dianne
    Dianne July 3, 2009 at 9:28 am |

    The medical model centers around the individual. The medical model defines disability in opposition to the normal body/brain, as deviating from that model of normalcy, and any problems that arise in your life are seen as arising from your deviation. Thus, these problems are to be solved by addressing that deviation — by bringing your body/brain closer to the normal model.

    FWIW, I read the medical model differently. This is how I see the medical model: Person A has a deviation from the typical that is a pain in the butt to him/her. The bit about it being a pain in the butt is critical: deviations from typical that don’t bother the person aren’t disabilities, they are normal variants-or even advantages. Being an Olympic athelete is definitely a deviation from the norm, but it’s not generally considered a disability.

    In any case, the critical question in the medical model is not how to bring the disability towards normalcy but how to stop it from being a pain in the butt to the disabled person. To give a trivial example, my vision is worse than average*. My uncorrected vision is something like 20/200. This used to be a problem for me. Now I wear glasses and it’s not a problem. So I suppose in the medical model, I am no longer disabled-the problem is basically solved. In the social model, I’m not so sure. Wearing glasses used to carry a stigma. Does it still? Can a disability disappear out of the social model simply because it is no longer socially disabling?

    *I deviate from the norm in other ways too, but am using the simplest and most minor example for, er, simplicity.

  40. gudbuytjane
    gudbuytjane July 3, 2009 at 10:16 am |

    Remember, I take a huge amount of drugs and I hate people who get into the BigPharmaIsEvil(without recognizing the good it does for many of us) funk. :)

    Thank you for mentioning this. I am by no means pro-corporation, and I do think a great many things are unnecessarily overmedicated, but at the same time, I take a lot of meds too, and yeah, not having persistent thoughts of self-harm or self-destruction is something I am glad for.

  41. William
    William July 3, 2009 at 10:51 am |

    FWIW, I read the medical model differently. This is how I see the medical model: Person A has a deviation from the typical that is a pain in the butt to him/her. The bit about it being a pain in the butt is critical: deviations from typical that don’t bother the person aren’t disabilities, they are normal variants-or even advantages. Being an Olympic athelete is definitely a deviation from the norm, but it’s not generally considered a disability.

    Thats going to depend pretty heavily on the context and the observer. Take a child with a very high IQ in the 3rd or 4th grade. They know the material, they’re bored, and they have all the nervous energy that a child in that age range tends to have. They have nothing to do and aren’t allowed to amuse themselves. This has been an experience they’ve had since they first started school, so at this point they just don’t bother to do the work. They absorb the information and then do nothing, because the tedium of showing work when the task is so far below them is simply intolerable. Now take a child of average intelligence with ADD and sit the two kids next to each other. Even trained clinicians have trouble telling the difference between these two presentations and with the lazy diagnostic work we tend to get from people trained in the medical model both children will likely end up with the same diagnostic label, drugs, treatment, and IEP accommodations.

    Not to run headlong into Foucault, but by observing individuals from a perspective of statistical means and difference society funnels people into very specific roles and categories. The end result of such a model is people who need the attention of society to be “fixed” and people who do not, with any deviation that isn’t immediately, obviously, and wholly positive ending up in the first group. Moreover, once you get to areas of difference that are not physical and clearly a matter of supra-ordinate rather than sub-ordinate, the tendency to see any deviation as pathological often becomes overwhelming.

    Finally, having a model that looks at people in terms of deviation means that people will be looked at in terms of deviation. If you live in Texas and you hear hooves you probably aren’t going to look outside for an Ibex. The context matters. If an observed person (the patient) is observed in a doctor’s office, the observing person (the doctor) is going to be look for a way to cure them because thats why people come to the doctor. People don’t usually go to the doctor to be told how awesome they are, they go to be cured. Thus when a difference is referred to the medical model it is predisposed to be seen as pathological.

  42. Dymphna
    Dymphna July 3, 2009 at 12:31 pm |

    My association with the term “medical model” is the idea that you focus on curing symptoms rather than helping people. In other words, the diagnosis becomes a map for treatment, and the individual’s power to define his or her own goals for treatment is circumvented. I have never heard it used to mean the only model in which medical problems are identified and taken seriously.

    For example, a woman with schizoaffective disorder seeking treatment might encounter someone whose goal is to make her delusions go away and to moderate her mood swings. She might, on the other hand, encounter someone whose goal is to find out what she wants in her life and who proceeds to work with her on figuring out how to accomplish that, whether that means reducing symptoms, accommodating them, or something else entirely. The two approaches can end up focusing on some of the same obstacles, but the former treats her symptoms as being negative by definition, whereas the other values her traits, including her symtpoms, according to how they help and how they hinder her in her life.

    I think Amanda is adding another level onto that, which is an important one, and that is the idea that even in the former model it is easy to take someone’s symptoms as negative when they prevent one from achieving one’s goals, when it is also important to take into account the way that larger systems are organized to accommodate folks who function more normally at the expense of those who do not, and the way that exclusion creates obstacles out of symptoms that wouldn’t be (or would be less) problematic otherwise.

    Speaking to the issue of disability as not unilaterally negative, I have chronic mild depression and moderate anxiety. I have always taken it to mean that my neurochemistry works a bit differently and I have to be much more aware of my energy levels and my environment in order to accomplish what I want to accomplish. I like myself, so I don’t feel particularly negative about my neurochemistry. It just … is, I guess. When I have a day or two of needing to stay at home and take care of myself, I struggle with some guilt and shame, but that’s mostly residual from growing up with parents who didn’t get it. For the most part, I appreciate that I have a body that signals quite strongly to me when I need to slow down and approach the world differently.

    That being said, I take depression and anxiety very, very seriously as an illness. I know that if I don’t take medications, I will get dangerously ill. And my husband, who has severe depression with psychotic features, recently attempted suicide, so I really have an up-close-and-personal sense of the potential consequences of this particular condition. However, for us it feels like a matter of survival to be able to balance within us the sense that his condition is both something to take very seriously for its negative implications and something to explore as a part of his unique neurochemistry and therefor something about him that deserves to be loved and valued.

    (and BTW I’m loving the term “condition” as used in Amanda’s post, if I’m understanding it correctly)

    I am also very sensitive to the whole madness = genius thing. That stereotype bugs the shit out of me. I worked in residential programs for adults who have severe mental illnesses, and at least half the time that I told people what I did for a living, I would hear something about that (the other half I’d get totally ignorant jokes about multiple personalities). That way of looking at mental illness is not the same as valuing each individual in his or her totality, including their neurochemistry. That is more about fitting them into a category on the basis of the label that has been assigned to them.

    Also, I would love to hear more on the question upthread regarding illnesses that manifest differently over time. I suffered from chronic severe migraines for a large part of my life. For 13 days out of 14, I did not experience disability. For 1 day out of 14, I was unable to function in any conceivable way in my life. The fact that it did not manifest those other 13 days was one reason (out of a host of reasons) it was often not taken seriously by important individuals (like, say, employers) as a disability.

    Gah, sorry this got so long!

  43. Dymphna
    Dymphna July 3, 2009 at 12:34 pm |

    And am aware that I just used the term “severe” mental illnesses, which is totally opposite to one of Amanda’s major points. Need a different term to describe my experience there. Though by “severe” I mean in terms of how the illnesses affected individual lives, not in terms of one diagnosis vs. another. We had plenty of folks with depression. Still, now challenged to find a better phrasing.

  44. William
    William July 3, 2009 at 3:53 pm |

    And am aware that I just used the term “severe” mental illnesses, which is totally opposite to one of Amanda’s major points. Need a different term to describe my experience there. Though by “severe” I mean in terms of how the illnesses affected individual lives, not in terms of one diagnosis vs. another. We had plenty of folks with depression. Still, now challenged to find a better phrasing.

    I think thats a big part of the problem with discussions about mental illness in specific and disability in general. Even amongst people who are high educated on the subject, the language available to describe the various kinds of experience doesn’t capture the nuance and range of these kinds of experiences. Regardless of the model we’re discussing, the words we have bind us into certain ways of thinking about the subject. How do we not hierarchize when the language we have, regardless of the model we’re borrowing it from, is designed to do so structurally?

    You know you shouldn’t use “severe mental illness” you know that its problematic and why, but no matter how well read you are or how deeply you delve into your vocabulary you can’t find a better word for the idea you’re trying to communicate. Everyone has a suggestion on what we should use instead (I’m partial to “madness”) but pretty much every word or phrase I’ve encountered has it’s own problems and limits.

    Its frustrating, because it seems like however far we push language and any gains we make just show us new problems.

  45. shah8
    shah8 July 3, 2009 at 5:13 pm |

    Although this has come up in previous comments, at least in a tagential fashion, I would still like to say that the range of discussion could be wider and more aware.

    I mean, according to the models available to everyone, everyone is somewhat mentally and physically disabled. We are expected to be able to think rationally in ways that neurologically, temporally, and contextually impossible–like the whole SuperMom complex. We are expected to be physically competent in ways that few of us could meet, and at the same time, we are expected to indulge ourselves–anyone who exhibit the signs of being physically competent without social license can expect some exclusion.

    Moreover, society finds it in its interest to actively make us mentally ill (relative to self-interest, at least). It’s hard to make much of either the medical or social models of disability when both are based on a kind of normativity that changed based how the masters of the universe/narcissic peons mess with the norms to create their chimera to suit to their advantage. I mean, isn’t Amway a classic example of crazy and crazification?

    When systems of hypocrisies are used change roles for some poor sucka at the whim of someone else who most certainly has lost his marbles (at least social context!), it’s not enough to demand that society recognizes disability. Go into fashion if you think otherwise. Almost all of us are disabled in one way or another, and when you look at the big picture, starting with friends and family and neighbors…Well, if one tries to model in terms of one or two degrees of change (or even of labels), you wind up with a leaky abstraction that’s a nightmare to apply to the real world.

    I think we have to be really respectful of the role of agenda/motive, even of disembodied organizations, even if common sense might flow along with nature of stories (man against man, man against nature, man against himself), because stories, however much they serve our heuristics, are just an abstraction. It’s just patternseeking, after all.

  46. draxar
    draxar July 3, 2009 at 6:20 pm |

    Having read down all the comments, I think the issues with the medical model, with cures and so far are this:

    Firstly, we get to decide if we get cured. I’ll be the first to agree that my dyspraxia causes me all kinds of issues. But it’s also led me to be a quite laid back person due to the fact that (once I got diagnosed and got away from the ‘you just need to try harder’ demand that had been thrown at me for so long) I am used to forgetting things, breaking things, and otherwise messing things up. Rather than getting upset about it, I shrug and move on.

    Also, while I don’t know if there’s any research to back up the ‘better at other stuff’ for certain conditions (be it by brain chemistry, or forced adaptation), that’s definitely still part of the “Cure us on our terms, with our permission”

    The other thing is that the Social model represents a rejection of the one size fits all model that society tends to push at us – the idea that if you can’t deal with society on those particular terms, then you need to sit back and accept that, rather than expecting society to let you in.

    I remember reading on a dyspraxia website about a dyspraxic priest who’d made the people he worked with well aware of it, and how it affected him. The majority of the time he managed it fine, and got everything done that he needed to. Then, on one occasion, he completely forgot about a particular event, and suddenly discovered that he was supposed to be doing a service in twenty minutes about two hours from where he was. The people he worked with rallied round, someone else was able to do the service, and everyone was understanding and accepting of it.

    I’ve had those moments of forgetfulness, I’ve friends who are very accepting of how I do things, and how I less than occasionally forget to do things. I hope to eventually be working in a job where I and those I work with are as accepting as my friends, or those people the priest worked with.

  47. William
    William July 3, 2009 at 7:23 pm |

    Well, if one tries to model in terms of one or two degrees of change (or even of labels), you wind up with a leaky abstraction that’s a nightmare to apply to the real world.

    You’re complete right, the abstract construct of ill/not ill is leaky and doesn’t work particularly well at accurately describing the world. The thing is, it works unnervingly well for some people’s purposes when actually applied to the real world. It comes down to what your values are and what goals you’re trying to achieve through a given worldview. It doesn’t matter how well a given model fits the person it describes if you only care about how well it marshals disciplinary power against the people it describes in order to coerce them into fitting into the roles you’ve defined.

    One thing our society is very good at, regardless of what model you’re using to describe the process, is breaking people who deviate from an imagined norm until they seem to appear to approach that norm. A system with only two options facilitates the process of rehabilitating (or training/coercing/curing/whatever) people in such a way as to make them more useful to the needs of the people who define what society is. Its the Harrison Burgeron effect, destroy those who cannot be raised to the level of social utility and hamstring those who make the proles uncomfortable due to their superiority or difference. Hand wringing about how a given model treats or understands observed bodies only makes sense if you assume that the system you’re critiquing gives a shit about individuals for reasons beyond their value to the mob.

  48. denelian
    denelian July 4, 2009 at 2:53 am |

    i follow what you are saying, and even agree to a large extent – a social model that is applied across the board woul be a definitve goo.
    but…

    here is where this but comes in – not only is my condition degenerating (i have had 4 surgeries on my hip, need at least one more – i cannot *SIT UP* for more than an hour at a time, let alone stand or walk for any time/distance. working is so impossible right now that i believe i will see a unicorn before i see an actual job with me in it…), but more and more i am hearing medical people say things like “let’s figure out how to accomidate your problem” instead of “let’s figure out how to FIX your problem”

    because, given a choice, i want it fixed
    15 years ago i danced for hours a day
    10 years ago i was still able to fence and spar, if only maybe 2-3/week
    5 years ago i could walk without help
    today, there are days where i literally cannot get up off of the bed without help. days where my boyfriend has to dress me, because i cannot do it. i cannot walk without artificial aid ever, and there are many days when i cannot walk at all.
    and this is only the physical problem (and only one of those) – and this is a physical problem that CAN be fixed! it may take a fucking total hip replacement, but there *ARE* ways to fucking fix it.
    but instead, i keep hearing “let’s figure out how to accomidate you”
    i don’t want to be accomidated – my average daily pain (not my highest, my lowest) is, on 30mg of oxycotin every 4 hours, a 7.
    there is not an accomidation for that. movement – rolling over, getting up, *anything* – spikes the pain up to at least an 8. i am living out one of my personal versions of hell. i feel like i am living in an Iron Maiden, and not the used-to-be-cool band, but the-used-to-be-used as an implement of torture device.

    so i worry that we, as a society, will push so hard to accept “differences” that we will stop curing those disabilities that can be cured; we will stop even treating symptoms of conditions that can’t be cured but can at least be releaved, because we are so “accepting” of differences that we no longer see them as diseases and disabilites – as actual medical problems.
    i mean, i know people who are different and like their difference – i know a couple who are deaf, who met at a conference for deaf people, and they both are content with being deaf (and each other :D ) and they both *say* that they wouldn’t take a “cure” for deafness if there was one (although Amy has hinted that she only says this because she feels she is expected to, hence my **ing the word “say”), i know (dated, actually) a man who was bi-polar and loved the “highs” so much that he would induce a “low” so he could have a “high”. i used to work with a guy who was totally blind, who was so proud of the fact that he was 100% functional – he was the first person in his family to graduate high school, and has a Masters degree insystem design, and last i heard was working as a contracter for the DOD and working on his Ph.D, and he says none of it could have happened if he wasn’t blind and qualified for programs designed to “rehab” blind persons to function without help.
    so i DO get that there are people who are content with their difference (and for those people who are happy, i’m not sure they actually count as “disabilities”, ya know? because my understanding of the word “disability” is that it denotes a condition that is incompatable with living a fully-functional – not “normal, but happy and functional for that person – life… but “disability” has been used for a long time to denote someone who is, as you say Amanda, “different from the norm, generally in a way that is perceived as negative”, so i guess that is sort of a moot point on my part).

    i am jealous of those who are able to function with their disability (hell, i used to fucking be jealous of people who had *visable* disabilites or something like caner or leukemia – because at least *they* got real attention and care from medical people, and they were *believed* about their pain and difficulties – so a lot of the time, i am convinced that the reason my hip “broke” right after i turned 30 is karmic retribution for that jealousy :( ) *I* want to function. i want to be a “real” person someday, who can do real things (not just lie on the bed, day after day, able to do nothing but play around online or read – i can’t even do online work, because of all the pain meds, i have perhaps 2 hours a day where i am fully coherent and able to really think). it’s depressing and degrading and fucking *boring* and makes me feel both hopeless and helpless, with a large order of “worthless” for dessert.

    all of which could have been avoided (well, most of it, i would have still had to have surgery) if we *DID* practice a better model, and FUCKING DOCTORS didn’t just fucking decide that because i wasn’t dying and didn’t have a broken bones, i was “making it all up” – my hip? the proble is displaysia, i was fucking *born* with it, i have complained of severe leg pain since i was 2 years old – and until i was 30 and literally couldn’t walk, i was told by *everyone* that i was making it up – because it wasn’t a problem that was immedietly visible (although, point, a simple fucking XRay would, and did when i was 30, have shown it, and would have been shown when i was TWO). because differences that don’t fall under “noble martyred crippled who suceeded because of her difficulties” or “crazy insane brilliant person who was a genius before his/her/hir time” are not socially acceptable, and therefor it was better (for everyone but *ME*) for everyone to try and fucking force me to pretend nothing was wrong, rather than fix the problem.
    and now it is apparently better to “accomidate” the problem, rather than fix it.

    can i win, please? i just want it fixed. i could handle the PTSD an porphyria and the depression and the fibromalgia, if my hip were just fixed.

  49. denelian
    denelian July 4, 2009 at 3:09 am |

    and how do you spell accomodate? accomadate? sigh. sorry for the ranty-length and the typos

  50. Zailyn
    Zailyn July 4, 2009 at 6:32 am |

    Thank you for this post.

    (In fact, before I go on I should also thank you for one of the guest posts you wrote about a year ago. It was one of the things you said there that really hit me in the face with the fact that my Asperger’s was causing serious problems in my life, they were not going away, and that I should really start thinking about it as a disability and figure out what to do from there. A year after the fact I feel as if I have a much better handle on my life and problems than before, and it all traces back to that post. So – thank you.)

    A note on person-first language – I completely agree with you that it’s really not enough to just change a word. In fact, just changing that word misses the fact that some people may not *want* to be referred to that way. I think of myself as an Aspie, not a “person with Asperger’s”, and I know a lot of fellow people on the spectrum feel similarly. I feel as if using person-first language for my Asperger’s tries to separate out me and the AS and dismisses the fact that I’m quite certain this can’t be done. This feeds into the cure mentality, which is a huge problem in the dialogue around the autistic spectrum and why I find this kind of language rather worrying. I’m not entirely sold on “person with stuttering” (my other disability) for similar reasons, although I can see the upside there much more easily.

    Which is to say, person-first language is fine and good but not the end-all and be-all of respectful disability language by any means, and it’s generally best to double-check what a person would like to be referred to as.

    Oh, and also – thank you for what you said about people with invisible disabilities feeling as if we don’t count. I feel as if I’ve spent the last year alternating between “but it’s not that bad/I’m just lazy/I’m just taking away attention from people with the *real* problems” and panicking about whether or not I can hold a job or live independently. Sometimes both at the same time. I know rationally that I have just as much right to the label “disabled” as someone where it’s visible, but this runs so very deep.

    Finally, a quick note – I think you’re the first person I’ve seen who uses “abled” rather than “able-bodied”. Is that a usual term? I’ve been having trouble with terminology because although able-bodied seems to be the accepted term, I can’t help but feel very excluded by it – I don’t feel that my disabilities have to do with my /body/, especially the AS. I’ve been using “nondisabled” instead, which I know is problematic but I couldn’t think of anything better. If there’s an accepted alternate term, I really want to know.

  51. William
    William July 4, 2009 at 12:06 pm |

    denelian: Granted, this has a lot to do with my philosophy of care, but for me I don’t see accommodation and cure as being fundamentally opposed. I don’t really care what the accommodations someone needs looks like, I only care that the accommodations they receive are defined by them, from their frame of reference, based upon their experience and appraisal of their own needs and goals. For some people, people like you, that could very well be cure. In that way, cure is a kind accommodation, it is a tool you ought to be able to choose.

    My problem with cure is when it is a goal applied to a disabled person rather than a decision made by a disabled person. I believe people should direct their own care, with doctors and other care providers acting in a service capacity rather than in a directive or managerial one. I believe the best course of treatment is always the one the person who will actually go through it chooses based upon informed consent. My problem with the medical model is not that it sometimes cures, but that it so often takes the power out of the hands of the disabled person and puts in the the hands of people who just want the disabled person out of sight. For me at least, its all about power.

  52. William
    William July 4, 2009 at 12:08 pm |

    and my spellchecker thinks its spelled “accommodate” which I’m pretty sure is both right and another example of how the English language makes no goddamn sense. ;)

  53. Dymphna
    Dymphna July 4, 2009 at 3:47 pm |

    My problem with cure is when it is a goal applied to a disabled person rather than a decision made by a disabled person.

    This.

  54. Ryan
    Ryan July 4, 2009 at 6:46 pm |

    Can I ask for clarity in what this post is arguing? To my mind this seems to be arguing that disabilities do not have inherent negative consequences. While I would argue that some disabilities, mental or physical do NOT have negative consequences I would find it somewhat fantastic and incredibly naive to argue that others do not. Or is this more talk about the significance of a labeling/name-shaming approach to disabilities? Is this concerned with the language surrounding the issue and matters of personal sensitivity?

    I am certainly not going to argue that people are of less ‘value’ (outside of the perspectives of a military group or any other organisation that requires able bodied persons), but is it not out-of-touch with reality to be suggesting that we need to change the language simply to avoid hurting feelings? It may not be pleasant to believe that one is disabled because of crippling injuries or maimed limbs, but is it not the truth? If one is left unable to function properly in a society that (yes, sadly, requires you conform to certain standards, structural faults and all that jazz, etc.) because of severe depression is that not being DIS-abled?

  55. Michael White
    Michael White July 4, 2009 at 9:51 pm |

    I’ve been diagnossed and hospitalized several times for manic episodes (and a couple suicide attempts)… I’ve tried 7 or 8 medications and ECT. I used to think that this was a part of who I am, I now realize that it is a (disease, disorder, or illness) and I should make all possible effort to “cure” it, or put it down to a reasonable level. (I’m 31 and have not met any of my goals in life)

  56. Mark Bialkowski
    Mark Bialkowski July 5, 2009 at 2:45 pm |

    Apologies in advance for the rambling, tl;dr nature of this comment:

    My partner and I sometimes discuss the focus placed upon proper use of language by some individuals in the galaxy of activism and boundary-pushing. I’m usually OK with being described as a “disabled person” or even a “(legally) blind person”. This may be my other privileges talking (white, male, Anglophone, etc.), but to me it falls into the same category as being described as, say, a white person, or a brown-haired person. We tend to modify nouns with prefixed adjectives to save syllables; so long as the adjective itself is not inaccurate or intended as a pejorative (or, worse, patronizing), I’m not one to complain about the order of the words being used. I’ll even refer to myself using a certain older term just to get a rise out of her.

    What I do get worked up over is the overcompensation that tends to create insulting euphemisms. No one has used the term “differently abled” around me in a very long time, but if it’s ever used again, the person saying it will be told that if they want my “different ability”, they can have it. “Challenged” also falls into this category. I know a part of my body doesn’t work as well as it does for most others; I’d prefer people be realistic about it, give me some help when (and if) I ask for it, and treat it like any other physical or mental characteristic that makes up who and what I am.

    I find that I do tend to modify my behaviour to forestall challenging queries about how “disabled” I am. I like to listen to music while taking public transit. I find myself removing my headphones whenever I board a vehicle, as I worry whether a given driver will be suspicious upon seeing a person wearing headphones flashing a pass used by blind and visually impaired passengers*. Mind you, the headset sits around my neck, so it’s not as if I’m doing anything useful to hide it, but I worry that a driver will choose to act upon their own assumptions about how a visually impaired person should act in front of multiple people and make me prove I’m disabled or something equally degrading.

    I’m afraid to look at the Wikipedia article; the thought of a “market model” framework for dealing with disabilities makes me gag. Frakking Randroids…

    OK, done taking up bytes for now.

    *yay TTC and CNIB for one thing, at least!

  57. William
    William July 5, 2009 at 2:50 pm |

    but is it not out-of-touch with reality to be suggesting that we need to change the language simply to avoid hurting feelings?

    Now, I don’t mean to get all postmodern on you here, but could you please tell me what you mean by reality? I know, it sounds like a stupid question, everyone knows what reality means, right? Its whats REAL.

    Unfortunately, reality isn’t nearly as solid as we would like to think. Thats especially true when we’re talking about language. The way you decide to frame something, the words you use to describe it, the messages behind those words that you apply to it, these things effect that you might want to call reality. The way you see something, or hear it, or interact with it (even if you have the ability to do these things) changes how you experience it. Your observations, the basis for how we determine reality, are influenced by your beliefs, fears, and desires.

    So when you ask if something is “out of touch with reality” what you’re really asking is if it is in touch with your experience. The fact that you’re able to describe your subjective frame as “reality” is a privilege that comes with sharing that frame with a large enough portion of society that you no longer recognize it is your own.

  58. denelian
    denelian July 5, 2009 at 5:06 pm |

    thanks, William

  59. Deoridhe
    Deoridhe July 6, 2009 at 2:46 am |

    I work with adults with persistent mental illness as my job, which gives me a different-from-mainstream but still not participant point of view on the lives of people who are in the mental health (ha!) system likely until they die.

    I have found that one thing I do more than I ever expected was try to help my clients de-pathologize their normal, human responses to stress and trauma. There is a way in which people with mental disorders and conditions begin to consider everything a part of that condition (I love the word condition, by the way; I had never thought of it – illness gives me twitches though sometimes it seems accurate, and disorder seems more accurate but still stigmatizing).

    Like anxiety. It’s huge for most of my clients. Some of them have unrealistic anxiety causes or responses (presumed inaccurate paranoia, or panic attacks from being on a street, for example) but a lot of times their anxiety is really rational and reasonable given their experiences. One role I stand in becomes being a person who shares what is normally covered up – for example about my own anxiety and some of the ways I cope with or cover it up – in an attempt to pass on as a visceral experience that these feelings are normal, human, reasonable, and something to manage, not to feel ashamed of.

  60. anon
    anon July 6, 2009 at 11:12 pm |

    For the most part I liked what you had to say. But on rereading the title “Thoughts on disability and respectful language,” I’m reminded of a stance I took long ago in childhood. By the time I was 11, I’d gone through several labels already: I started out “profoundly deaf” but then that was derogatory, so then I became “hard of hearing” but that wasn’t really accurate, so then they trotted out the term “hearing impaired” at which point I put my foot down and called myself deaf, which I have done since. I am deaf, deaf, deaf. No amount of word changing or tippytoeing around will change anything about me, or anything about the absurd stupid ways in which the world around me has tried to force me into their cubbyholes. Changing language does not change actions nor perceptions of those around you.

    Which, really, ties into your last paragraph anyway.

  61. Lisa
    Lisa July 7, 2009 at 6:50 am |

    This is my favourite guide to social model language http://3.ly/AVR

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