This post is mainly for three sorts of people, who are in some ways really one sort after all.

Standard

I’m going to post a link.

If you ever argue that autism and/or Asperger’s is “not a disability” because you think this configuration of our bodies partially, mostly, or entirely provides something positive in contrast to typical people, then please read it. The person who wrote it directed it mostly at you.

If you ever argue that autism and/or Asperger’s is “a disability” because you think this configuration of our bodies partially, mostly, or entirely provides something negative in contrast to typical people, then please read it. This goes double if you argue it for something you call “low-functioning autism” but not for other autistic people. This goes triple or even more if you want to cut “high-functioning autism” and/or “Asperger’s” off of the “autistic spectrum” because they’re “not disabled” and “low functioning autistic people” are disabled. The person who wrote it only directed part of it at you, but from the standpoint he’s talking about, your viewpoint is nearly identical to the viewpoint I described in the first paragraph.

And of course, the viewpoint he’s talking about is also really important for you to read if you’re the sort of person who says it’s “neither an ability nor a disability,” or “composed of both abilities and disabilities,” or “both an ability and a disability,” or similar wording, because it’s also from the viewpoint he’s talking about pretty identical to the first two paragraphs.

And for everyone else, including those who know the general viewpoint he’s coming from already, the advice he gives is still really good, so go read it too.

His post is called Welcome to the disability community. In general, go read it. Multiple times if necessary. Then seriously consider taking his advice.

Last night, I got involved in a discussion of disability rights with people who mostly had some background in that area. Some of them were autistic and some of them weren’t, but most of them had heard, at least somewhat, of the standpoint on disability I come from, which is that disability is the intersection of your body with a world that has planned for some sorts of people and not others, when you’re one of the “others” that wasn’t exactly planned for. Things that would not be barriers to people that it was planned for, become barriers to you because you weren’t among those planned for.

The most common examples of barriers are physical, both because they’re concrete and easy to describe, but also because there’s an often-unspoken hierarchy in the disability community that has fought for the removal of these barriers, and we’ve got more practice talking about wheelchair ramps in the offline world and blind access in the online world than we’ve got talking about making the online world accessible to assorted kinds of cognitively disabled people or making buildings accessible to people for whom the most common forms of fluorescent lighting impair their ability to think or move.

If either I or my friend want to visit each other in the public part of our building, for instance, it’s almost perfectly wheelchair-accessible. The hallways are wide and flat and there is elevator access to the entire building. There are stairs, but they are optional. Many wheelchair users in the disability rights movement would stop right there and claim that the building is “accessible”. However, the public areas of the building are also fitted with old-style fluorescent lights. This gives us both some combination of migraines, seizures, and general levels of confusion. (How much confusion? When I was a teenager I took a night class under fluorescent lights, they were the only source of lighting and there were lots of them. My mother would pick me up in a brown minivan. I came out at one point and tried repeatedly to get into a little white car. I was pulling on the handle and everything. The driver did not look close enough to my mother for even me to confuse them, and the dog in the car didn’t look like my dog either.) Tinted glasses help to an extent but they don’t fully solve the problem. So the hallways are actually not fully accessible to us.

Cal Montgomery wrote some interesting stuff about this in the essay The Way Things Are. Don’t be put off by the fact that it’s about Foucault if you’re normally (as I am) put off by postmodernism. She makes some good points and she makes them in everyday language. She, like both me and my friend, finds both stairs and fluorescent lights to be access barriers. She writes about a meeting of her local CIL (Center for Independent Living) that she was invited to. They told her it was “accessible” when they really meant wheelchair access. It was really held in a room with fluorescent lights, by people who both knew that was a barrier to her and had access to a room that was both wheelchair-accessible and lacked fluorescent lights. Then she invites us to think about the fact that we often think the way things are is the only way they ever could be. She writes:

Some of us believe that “high-functioning people” or “the invisibly disabled” or “people who only use wheelchairs” don’t face any real disadvantage and therefore don’t need either cures or rights; some of us believe that “low-functioning people” or “mentally retarded people” are disadvantaged by medical conditions alone and therefore aren’t the concern of the disability rights movement; some of us believe that alcoholics drink for moral and not medical reasons and others believe exactly the opposite; and most of us have probably never seriously questioned all of our beliefs along these lines.

The way the “cross-disability” sections of the disability rights and the independent living movements are dominated by certain categories of disabled people seems natural to many people, but it could have gone another way. The movements have come to believe that it’s important to get wheelchairs into classrooms and jobsites and housing and CILs that are built to accommodate them. They haven’t come to believe that it’s important to do the same thing for people who can’t manage under fluorescent lights. But it could have gone differently.

Imagine for a moment that the disability rights movement had not arisen during a time when there were not so many white-collar jobs in America, but rather during a time when the majority of us were expected to do physical labor.

In such a time, with an “able body” being more important than an “able mind” it’s entirely possible that people with cognitive impairments might have come to be the paradigmatic disabled people around whose needs the whole thing was organized. After all, our physical accomplishments would have a whole lot more to do with our places in society than our cognitive accomplishments. We might have come to see a fluorescent-infested environment as unjust earlier than we grasped the injustice of stair-infestedness, and my local CIL might have mentioned, under “Access Accommodations,” that the annual meeting would be held on the second floor of a building with no elevators.

An interesting thing about the disability rights movement, that many people in the autistic community have not yet realized, is that a lot of the fights for access do not depend on what condition you have. Standard fluorescent lighting is inaccessible to many autistic people. It’s also inaccessible to many people with migraines, epilepsy, people who don’t have epilepsy but who are on medications that lower the seizure threshold, multiple sclerosis, and a number of other conditions. And people with these various conditions can all work together to make sure that there is some kind of lighting, whether incandescent, some other kind of fluorescent that causes fewer problems (especially, if bright, if the lighting is indirect rather than direct), or light-emitting diodes, that is accessible to more of us.

At any rate, it makes sense to me that people haven’t heard a lot of these ideas, but there’s a really good reason for familiarizing yourself with these ideas, which is that a lot of the groundwork has already been laid for us, and a lot of us are spending a lot of energy, as Joel put it, reinventing the wheel, when we could go a lot further than that a lot faster if we knew the background of what’s already happened that makes a lot of things possible — and if we knew what was possible.

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89 responses »

  1. Ooh Foucault but he is so Passé de nos jours

    I was talking with my brother about what is going to be post post modern, cos Fukuyama be damned his story ain’t ended yet.

    Foucault is Ok for light reading I suppose but very coloured with the histoire of his own discourse in left bank pastis tainted psychoanalysis.

    Actualy incandescent bulbs in winter are not a threat to the environment, because they give out heat, now take away the heat with a cold light source and what you gonna do? why turn up the heater of course :)

    http://news.bbc.co.uk/1/hi/health/7167860.stm

    No such a thing as able minded, because mind is a fiction a construction, we are not cartesians anymore any more than we can solve Zeno’s paradox by calculus (which is an even bigger paradox and owes more to human neurology than it does to any real correspondence with anything “out” “there” whatever is “out” and wherever is “there”

    Before I dare stray too close to the point which would never do, have read Joels blog, not bad :)

    He put it rather well.

  2. This reminds me of one situation with accessibility, or lack thereof, that I have encountered time and time again on the Internet: few authors of online video are willing to take the time to transcribe and/or caption it. Worse yet, a lot of video providers don’t even seem to realize that there *is* a demand for written transcriptions, much less care about matters of implementation…

    Yet people don’t even remotely think of this as a situation lacking accessibility. Even, in some cases, when it’s flat-out pointed out to them that the material they’ve posted is almost utterly useless for deaf and hard-of-hearing users.

    And I’m not even deaf. I *can* hear the audio… but my auditory processing of spoken language is so garbled, and my auditory attention span so short, that it’s much less stress just to read it even when I *can* make out what’s being said. And it’s worse when the audio quality on the video is less than ideal to begin with. There’s one clip of a speech by an Aspie that’s been recommended to me and that I desperately want to watch, but I can’t understand half of it because the reverb is so bad that it makes the words unintelligible.

    Y’know, I should start off the year with a post on Normal Is Overrated about that…

    (Oh, and if this wasn’t already implicit in the above… thank you so much for captioning your own YouTube contributions, Amanda. If only more people– *particularly* in the autistic video-blogging community– could realize how helpful it can be!)

  3. Good going, Amanda:
    Now you’ve crossed from simple “advocacy” to basically insuring that nobody ever gets ANYTHING done again. Why?
    First, you take “inclusion” as some kind of ‘end in itself”. It’s not. I’m fairly severely visually impaired and, gee guess what: I have never once complained that I don’t have “access” to being a big-rig truck driver. Why? It’s way outside of my physical capacity. I would, quite frankly, be extremely dangerous in that situation, and likely, get a lot of people killed.

    So no, “inclusion” isn’t any sort of end in itself. It SHOULD be a means, so that people CAN accomplish stuff that they want — and are able — to do.
    But, no. The particular perversion of “disability rights” you advocate starts with the proposition that — above any other decisions about functionality or cost or “likely type of occupants” or anything else, the first consideration is to make sure that everywhere is “accessible” to everybody. Niiice.
    Except for the fact that, very often, various types of “accessibility” conflict with one another. The sort of things which make a place “accesible” to you (let’s say, the particular sort of lighting you need), would very likely either leave the place WAY too dark for me/other visually impaired people, or simply make it much more expensive to actually DO anything, thus reducing the overall opportunities for everybody.

    Smooth move, Li’l Miss Advocate! :)

    Honestly, Amanda — it’s “movements” like yours that give the disabled a bad name.

    Did you ever think that things are designed a particular way for a REASON? Driving an automobile requires — hmm, lessee here – VISION. You “advocate types just want anything and everything handed to you on a silver platter, and it sickens me. If this is the sort of “victim mentality” which has infected the disabled “community”, then maybe “disability shame” is appropriate.

  4. Some very good points made. Its always important to look at what has been successful and what hasn’t and then decide what is right for you as an individual. However, it sounds a bit like a club, and I’ve never been very popular with clubs because generally, there are too many rules for me, I forget rules and I seem to always break them either purposely or by mistake and then I’m no longer a member of the club or not wanted in the club :-).

  5. Codeman: “(Oh, and if this wasn’t already implicit in the above… thank you so much for captioning your own YouTube contributions, Amanda. If only more people– *particularly* in the autistic video-blogging community– could realize how helpful it can be!)”

    Codeman, can I take that as an invitation to transcribe all my 100 + videos? I sure could use it because after spending sometimes 20 plus hours editing, not counting the time it took me to come up with the idea, I don’t have another 4 hours to transcribe, but would love it if someone could do it for me. Most of mine though don’t lend themselves for transcribing because not many words are exchanged in my videos that I haven’t already done slides for, but everyone complains about the slides and how they are either too hard to read or too fast, or too small, or too big, or too fill in the blank, or the music is too loud, not loud enough, doesn’t make sense. Videography is an art, not a science but I would LOVE someone to transcribe them. I know of a service where I can upload the video and then have anyone transcribe it. Please codeman38, if your interested, ask Amanda for my email and we’ll get together and work on this project.

  6. This is to Henry, although anyone else is welcome to respond as well. If you are serious, and not simply trolling (which I’m beginning to suspect you’ve inexplicably been starting to do lately, given the amount of words you seem intent on putting in people’s mouths just in order to have someone to argue with), please answer me the following questions:

    Who will it kill for me or my friend to be able to access public areas of the building I happen to live in without having migraines or seizures?

    Who will it kill for Cal Montgomery to be able to go to a meeting about disability access that does not have fluorescent lighting that impairs her ability to participate in it (i.e. that is actually accessible to her), particularly when there is already such a room available in the office of the group that is organizing the meeting to begin with?

    If you can answer those questions, maybe you’ll notice the difference between the sort of access we are fighting for (not expecting to be handed to us, it’s obvious that’s not happening or we wouldn’t have to talk about it) and the “right” to operate machinery that could easily kill someone, without being competent to do so. (And by the way, I’m not competent to drive and would never demand access to that as a right, so, again, get your facts straight before replying.)

    There are a number of people who comment on this blog who have been shamed and outright tortured for insisting on treatment at least a fraction as good as what prisoners of war are afforded by the Geneva convention. The true victim mentality is to be silent and act grateful while you’re treated as an inferior your entire life. Even schoolyard bullies love to act like it’s worse to point out that they’re bullies, than to commit the act of bullying themselves. And they love to blame anything from the shabbiness of a person’s clothes to the shape of their ears for the bullying they commit, and they love if the person they bully goes right along with it. The first step out of that particular form of victim mentality, in fact, is to start pointing out when these things are occurring and figuring out ways to stop them. That’s a lot of stuff that won’t happen if you have your way with disabled people.

    Meanwhile, of course, non-disabled people do get a ton of stuff handed to them on a silver platter, and expect it, and nobody ever complains about that.

    And I won’t allow you to further attempt to verbally bully or shame anyone back into the exact same victim mentality you claim to want them to get out of. If you expect to be allowed to do so, that’s one silver platter that doesn’t exist, and one definition of “inclusion” I don’t subscribe to. You can go find someone who does have the views you’re responding to, and go respond to them, or you can respond to what’s actually said here, but the whole “invent a statement that doesn’t exist so I can argue with it, and then ascribe this non-existent statement to real live people who didn’t say it so I can berate them” thing doesn’t fly here. Even with smilies. And especially if they’ve made several serious attempts to explain things because they at first seriously thought it was just a misunderstanding, yet you won’t give them a similar benefit of the doubt.

  7. Christschool – you might be careful about your comments. From where I’m sitting, it sounds a lot like, “I’m fine with inclusion. As long as *I* don’t have to do anything.”

  8. Wow, thanks for the link. I could definitely send that to a few people.

    The ones that get me are the people who consider themselves “high-functioning” and then go on to admonish the other people they consider “high-functioning” that they are not disabled and should stop “acting like” they are (whatever that means) or thinking of themselves that way, because they apparently associate being disabled with making excuses not to work or something.

    (Our major access barrier in a lot of places is noise. The busy street outside our apartment is not fully accessible for us to just go for a walk on, because of the effect the sound of the cars and trucks roaring by has on us. We tried to “grit our teeth and bear it” for a long time, but we’ve taken to wearing earplugs now when we go for walks, which solves some of the problem. But there are all kinds of other ones, some in working environments– ticking clocks, talking, background music, humming lights, etc, that screw our concentration to hell.)

    I’m actually thinking of writing something about how all of this potentially applies to plurals, also. There’s a certain amount of foot-stompiness in that community about “I am not one of the dysfunctional kinds,” but if someone is obliged to hugely and artificially modify their operating system and public presentation because society expects a singlet, or gets tossed out of jobs and friendships repeatedly because someone reacted badly to the changing presentations of many people (not the quality of work), or can’t always consistently predict the level of skill they’ll be able to demonstrate at a given task because different people have different skill sets, isn’t that also a case of problems just because society is not designed for people like you? It’s something for me to think about and ramble over, at least. (Also, a surprising number of even the people in that community who do view themselves as having a “disorder” don’t seem to understand the social model of disability.)

  9. I was referring not to the club remark, but the “I can’t caption stuff, even though it has few words, it’s too much work, and people yell at me about my slides so I’m not going to even try” remarks.

  10. Christschool: I would be glad to set up some sort of wiki for collaborative transcription of things, but I really don’t want to have to do all of that work alone. Among other things, I have enough work of my own to do as a graduate student.

    The aforementioned highly visual nature of Christschool’s videos makes them more accessible to me personally, as a very visual learner, but I can easily see how that’d be a major barrier to accessibility for others. This is why I’m not opposed to setting up means to making them accessible, but again, am not willing to take on such a massive effort alone.

  11. Who would it kill? (reference to Amanda’s response to Henry….)

    No one, no one, and no one. I’m amazed that you even published that post……it REEKS of TOTAL IGNORANCE and IMMATURITY…….I guess it has some purpose as an example of what kind of ignorance we auties and others face in a society that didn’t plan for us…….

    I might make one minor addition to the following:
    “…disability is the intersection of your body (and mind) with a world that has planned for some sorts of people and not others, when you’re one of the “others” that wasn’t exactly planned for.”

    Darn italics aren’t working. My addition is in parentheses…..

    I was pissed for a good hour after reading Henry’s post. Why? Um….lack of good wording for explanation. Immaturity and gross ignorance (144 times worse than just ignorance. A gross is 144 of whatever…..say, eggs.)

    Not only was he immature, he was GLOATING about it. I think that’s what irritated me the most.

    Okay, I’ll get off my soapbox now.

    Codeman: what are you in school for?

    Christschool (and codeman) I know nothing about captioning (I know what it means but not how to do it….how to make slides with text…other than powerpoint) so unfortunately I can’t help…..what does that entail? If I could learn about it, maybe I could help eventually. Even though I’m autistic I’m not very techie-literate…..

    Amanda: just out of curiosity (others can respond as well) have you been following the Iowa Caucus hoopla at all? I say hoopla because it’s going at hyperspeed……inundation…….

    TI

  12. I think one of the things that Henry is assuming is being said, which probably isn’t being said, is that all places must be automatically accessible to all people at all times. Of course this isn’t possible. Even if it is possible in some cases, it does make sense to me to have some kind of a conversation about how much it costs, what those costs will do to the overall ability of the facility to serve everyone, and in what ways the accomodations might limit other people from accessing the facility.

    It is difficult for us, as a society, to make decisions on a case-by-case basis. We like to have an all-or-none rule: either it’s never anyone’s responsibility to be inclusive, or it’s a given that everyone must give everything to be inclusive every time. Neither is really tenable, in my opinion. What we need is for people like Amanda to speak up when they are excluded, and be allowed to participate in the conversation we all have about how to best serve everyone in a given environment.

    I know we (again, as a society/species) aren’t always so hot at making group decisions without marginalizing everyone, but we should at least be trying.

  13. I really wish more people understood this. I think it would be a lot easier to identify with a community as the autistic community if it weren’t presented as a club for people “who aren’t disabled, just different”. People see the LFA stereotypes, they also see the HFA-Bill Gates-in-training stereotype.

    It would be a much better idea if more of us were working to show that things aren’t so simple, and one kind of person should not be made inferior to another kind of person, rather than reinforcing such stereotypes and claiming only those with experiences exactly like ours were “worthy” of rights?

  14. Well… the last time I tried to explain something about this, he got really offended at the entire notion that he hadn’t understood what I meant, and then repeated a long rant about the same thing that I hadn’t meant in the first place.

    This rant seems to crop up whenever I suggest in one way or another that being disabled isn’t automatically inferior to being non-disabled.

    And while I put up with it a few times, this last one crossed enough lines that I almost didn’t print it. Then I figured that if I wasn’t going to print it, everyone (including him) ought to know why I might be moderating further comments of his.

    I just realized I could’ve just edited out the personal attacks with a note that they’d been edited out, but I can’t say my brain’s working great at the moment. :-/

    At any rate, I’m normally happy to explain things as much as needed for understanding, but he’s already indicated that as far as he’s concerned there’s no misunderstanding, and then he’s repeated things over and over that have nothing to do with my viewpoints.

    I suspect widget involvement, but I’ve spent my entire life trying to figure out how to deal with widgets and still haven’t gotten that far.

    And one problem with widgets is there’s no such thing as a widget that will deal with all situations, so if someone inclined to seeing widgets in things sees someone make a statement, then they will often want an entire and absolutely consistent system of connected cognitive symbols attached to it that deals with all ethical situations, and that’s really not possible. Which is why I tend to point at assorted principles but generally assume that people will modify them according to situation and other ethical principles and whatever conscience-weighing stuff kicks in at some point (and arrive at some combination of good and bad decisions based on that).

    I suppose that can look contradictory if a person wants a single absolute set of connected widgets to explain all ethical situations, but one of my own ethical principles is that such a beast doesn’t exist (at least not in anything human minds are going to come up with), so I’m quite willing to accept apparent contradiction as more about the fact that I’m incapable of knowing everything than anything else.

  15. stupid question: what’s a widget? is it related to either of these words: stereotype or heuristic? That’s what I got out of your post…….

    TI

  16. I wrote:

    I suppose that can look contradictory if a person wants a single absolute set of connected widgets to explain all ethical situations, but one of my own ethical principles is that such a beast doesn’t exist (at least not in anything human minds are going to come up with), so I’m quite willing to accept apparent contradiction as more about the fact that I’m incapable of knowing everything than anything else.

    And I wanted to add, this doesn’t mean that I never take certain positions as pretty much general ones, or that I don’t take some principles as nearly infallible, just that I think reality tends to be messy, and I’m not saying those words in a way as to avoid responsibility as much because it’s just how it is and I think claiming to know all of reality is pretty much one of the definitions of hubris.

    I also suspect my attitude towards this thing is why I’m not as upset by Dave Hingsburger as a lot of people I’ve referred to his blog seem to get at times. (If I can give an example. Hopefully without embarrassing Dave too much.)

    Because what I see Dave using when he writes is some principles, including some picked up from the disability rights movement, and then a whole lot of life experience.

    And what a lot of people seem to be after when they read him is a lot of repetition of assorted disability-rights party lines. Some of which I agree with (including some he doesn’t seem to go by), and some of which I don’t, but that’s really not what he seems to be about, and I have real trouble reading him or really most people like a checklist of whether they hit all the right talking points or not.

    None of which means either he or I don’t have opinions, nor that we don’t passionately argue those opinions, nor that some of those opinions don’t line up with the disability rights movement, etc. It just means that a lot of people seem to assume that writers who writes about disability-related topics will all have the same things to say about it.

    And I’ve gotten a few reactions to my recommendations of his writing like “Good grief, you said he was good on disability issues but he talks about inspiration and he just congratulated himself for overdoing his limits.”

    And I keep thinking “Yeah, but there are tons of people who write about disability-related topics, who say all the “right” things about inspiration and overdoing yourself, but then don’t even think severely cognitively disabled people (or, for that matter, cognitively disabled people at all) should even be discussed by the disability movement.”

    So, yes, if you take the collected works of everybody writing and speaking about disability (as well as those advocating in ways that have nothing to do with either writing or speaking in any usual sense of the words), you’re not going to get any one person who says everything right, and if you threw out people’s entire opinion whatsoever about disability based on the fact that part of it contradicted some of the other views of someone else who had something entirely different important to say about it, you’d have nothing left.

    (And really this goes for any topic, I’m just trying to stay on-topic. And so tired I can’t read my own writing.)

  17. I still don’t understand why if inside is accessable to me (without triggering status epilepticus and visual agnosia) that means that someone legally blind therefore has the right to drive.

    The logic is so utterly flawed that I think a new fallacy was invented.

  18. Being on the spectrum myself I’m probably going to be accused of utter heresy here but I really don’t like using one specific model as gospel (I’m not saying you are but I think both pro and anti cure elements do that to some degree). Also I think while Mr Emerick was using brute force that would be more welcome in a MMA fight (not a rugby match which freedom of speech generally is like) rather than a debate he had two basic but valid points which I think do deserve some attention.
    Firstly the social model has it’s flaws and limits as to how and where it can be applied you’ve acknowledged them . That’s true of any model including the medical model. My question is what point do these models meet and what do you think are the limits to the social model of disability?

    Secondly as much as there is common ground
    etween disabled people there are times when the rights of people with disabilities do clash for instance in school. As a teenager in secondary school (middle-high)school I was persistently bullied by another person who had behavioural “problems”. That person was later kicked out because of xyr’s behaviour towards others as well as me. That’s an extreme example but my question is what do we do about conflicts of interest and conflicts of rights between disabled/neurodiversified people when they occur?

    Finally no offence but I’ve got a challenge for you. You may be able to point people in the direction of disabled people who are actively in favour of the social model but do you know if there is a disabled person who has written a good critique of the social model? I don’t know if there is but I think that is something that is necessary.

    It shouldn’t kill anyone to access a room where a disability meeting is being held or access public areas but it shouldn’t cost the earth either.

  19. Yeah, I do acknowledge its limits. (And that’s in fact why I wasn’t giving a purely social-model view in my post or responses.) I just think accessibility is a better point to start from than endlessly debating whether autism is “a disability” or not from a purely individual model on both sides.

    And yes, I’ve seen a whole lot of good critiques of classic social-model theory. A couple that stand out to me are:

    Critic of the Dawn where the standard argument for pure individual-model stuff is personified as “Bruce” (where the whole point is that being disabled is all about differing from each other and that being the entire source of our “problems”) and the standard argument for pure social-model stuff (where the whole argument is often that we’re the same as each other except for ways we’re shut out) is personified as “Mary”. And her conclusions basically strike me as similar to my own about the whole thing (which isn’t surprising because she and a few other people are the ones I’ve most often hashed the ideas out with in discussions).

    And, recommended to me by the same person that wrote that, was the book Exile and Pride by Eli Clare. There’s an excerpt available here, but you’d have to actually get the book to read the entirety of the chapter.

    My own viewpoint is that something resembling a social model (although I don’t really work from models personally) is a better place to start, because we’ve generally all already got all the biases from a very very individual view of disability pounded into our heads from an early age and we need something to counterbalance that, rather than have a really easy way to fall back on “Our differences mean some people get fewer rights.”

    I also think that the failure of some people to be able to imagine something doesn’t mean a solution doesn’t exist.

    I flat-out don’t believe in the formal school system for most purposes (I’m aware it’s better than a lot of other really bad situations, I don’t think that makes it good) so I’m a horrible person to ask about school inclusion, although I’m constantly asked about it.

    I do think that the special ed school I went to (which combined people with assorted psych, behavioral, and developmental labels, and often preferred combinations of people with both psych and developmental ones which included me) taught me more about some of the basic concepts of inclusion than any “normal” school would have. Namely, we were where people were sent when we were thrown out of the regular place, there was not much further to go (and I’d already been that “much further”), and we were all supposedly deficient in various areas related to socializing in one way or another, and I think if we could find ways to at least tolerate each other’s existence (because we were forced to) then just about anyone can. (I wrote more about that here.)

  20. Not all disabled people identify themselves as being disabled, or as being part of the disability community.

    Some or many culturally Deaf people do not regard themselves as being disabled (I read this in the book “The Mask of Benevolence” by Harlan Lane), also for example, people who need to use a stick for walking, people who are hard of hearing, people who are visually impaired, but not without any vision.

    Any autistic person has the right to identify himself or herself as disabled or not disabled, or as partially disabled.

  21. This is something that too, too many people in so-called “autism communities” don’t get. Its also why i tend to be found more often in “cross-disability” communities/movements/organisations than in strictly autism-focused communities/movements/organisations. I see an awful lot of it on forums such as Wrong Planet, where the vast majority of people there either don’t want to, or would never even have thought of, seeing themselves as “disabled”, or seeing any kind of links or commonalities between themselves and people with any non-autism type of disability. (Luckily there are a few exceptions, but not many.)

    Actually, i’m tempted to post a link to this post on Wrong Planet and see what kind of response there is there to it…

    I think a lot of statements like the ones in your opening paragraphs actually come from a confusion between the terms (and the concepts) of “impairment” and “disability”. Those who claim that autism is “not a disability” are often actually saying that it should not be viewed as an impairment IMO – but, if you properly understand the difference between impairment and disability, then it’s easy to see how conditions or traits that might not even be meaningfully considered an impairment in a disablism-free world can still be disabling due to social barriers of prejudice, ignorance, misunderstanding, refusal to accommodate, etc (which i think is something close to the point Cal Montgomery was making when she mentioned “nondisabled people believed to be and treated as disabled”)…

    Foucault is an author i don’t get on with – i tried to read Madness and Civilisation and could hardly get anything meaningful out of it, yet Szasz’s The Manufacture of Madness, which covers much the same topics from a somewhat different viewpoint, was very readable and understandable to me (even if i didn’t agree with all of it).

    I loved Exile and Pride, but it seemed firmly within the social model to me. IMO it’s something of a straw man version of the social model (based on a caricatured reading of its originators such as Mike Oliver and Vic Finkelstein) which does not take impairment or embodiment into account at all. Eli Clare stands alongside other writers who have brought a feminist perspective to the social model by explicitly bringing embodiment back in – Jenny Morris and Carol Thomas being among others…

    I agree with you pretty much word for word on the subject of schools. I’ve been working on a longish post on inclusion in education, but it’s ended up sprawling into far too many other areas and i think i’m going to need to try to tidy it up a bit before i’m happy posting it…

  22. Also, on the subject of people’s access needs clashing with each other. There are some instances (although probably nowhere near as many as opponents of even trying to be truly inclusive would try to claim) where this does happen, and where despite the best intentions and efforts of all involved, something cannot be fully inclusive for everyone.

    However, IMO, this is part of the general principle that nothing can ever be completely perfect, and recognising that perfect inclusion is impossible doesn’t mean that we shouldn’t aim for it, in order to get the best inclusion that is possible. (I’m reminded of the Paris 1968 slogan, “BE REALISTIC – DEMAND THE IMPOSSIBLE”…)

    Yes, sometimes people’s impairments do clash, and, for example, someone who is profoundly deaf and communicates solely in sign language and someone who has no hands or no use of their hands will never be able to communicate with each other without an interpreter; or, someone with the auditory processing problems i have will never be able to understand the speech of people with certain particular types of speech impediments. Both of those, of course, can be mostly solved by using an interpreter, but that does mean that conversations of a certain level of intimacy or confidentiality will not be able to happen, full stop.

    But then, that goes back to the idea of bringing impairment/embodiment “back in” (although, IMO, they were never entirely ignored or neglected) to the social model. Recognising that person X will never reasonably be able to do activity Y doesn’t mean that person X then has to be excluded from settings A, B and C, where accomodations very reasonably could be made (which has, of course, been said already).

    There are more complicated scenarios where neurodiverse people’s emotional or interpersonal needs clash, which can get really awkward, but, even if it means people being disappointed or people having to agree to avoid each other, with honesty and willingness to take each other seriously it can be solved (although, IMO, neurodiversity isn’t an excuse for anyone to bully or intimidate anyone else, which is why i have problems with labels like “behavioural problems” coming under the umbrella of disability, when the things categorised as such seem to be a mixture of the completely-harmless-but-just-not-tolerated-by-neurotypicals and the actually immoral and/or harmful).

    But i think that genuinely insoluble “clashes”, while it needs to be recognised that they can and do occur, are a lot rarer than many people think…

  23. Philip:

    People have a right to say anything they want, it’s just very strange to see autistic people proclaiming they’re not disabled because…

    …and then they insert a bunch of stereotypes about disability that other disabled people have been fighting for ages.

    Or proclaiming they are disabled, because…

    …and then proclaiming stuff from a very similar stereotype, that likewise the disability community has been trying to say isn’t realistic.

    I’m not sure where the ‘right to say something’ comes in, because everyone has a right to say anything they want, but it doesn’t make it accurate or productive.

  24. The Integral wrote:

    stupid question: what’s a widget? is it related to either of these words: stereotype or heuristic? That’s what I got out of your post…….

    If I had to pick short words for it… hmm. Abstract dogma? Only… not always so dogmatic, just an abstract system that is built so much in the abstract that it doesn’t always connect with reality much at all. You might want to check my post on it if you haven’t already. It’s hard for me to even picture them because they’re hard for me to get close to. “Theory” is another word for them, in particular theory that is a large closed abstract system trying to cover all situations through a specified abstract route.

    Hard to explain though. Especially while, still, sleep deprived and other things.

  25. By the way, this post over at “The point of view of An Aspergian” is a really good example of an autistic person distancing themselves from the disability rights movement, by promoting the same stereotypes that the disability rights movement tries to fight against.

    Which is one of the most frustrating things to deal with. I think I have actually showed that particular person numerous articles and websites from the disability movement that promote pride in being different, civil rights for disabled people, and a whole lot of other things he claims we’re not doing. He keeps referring to disability in a purely medical context and saying that if we say we’re disabled then we’re saying we’re inferior physically to non-disabled people. He’s just rehashing stereotype after stereotype about who disabled people are, what disability is, and who the movement consists of and what we’re doing.

  26. People who think the social model *ever* said “everyone can do everything” almost always seem to misunderstand the model. It doesn’t say that, it never did, and it doesn’t need to be changed to not say it – it already doesn’t say it.

    It recognizes that not everyone will be an Olympic athlete, no matter how hard a person wants to be one, some won’t be one. It doesn’t deny this.

    What it does do is ask people what the difference between wanting (and not being able to be) an Olympic athlete and not being able to XXXX. Nobody says “I’m disabled, because I can’t be an Olympic athlete!!!” Why not – isn’t that an area of “impairment”, compared to the athlete?

    The reality is that society has assigned negative values to some differences in skill, ability, body, and mind compositions, but has not to others. Yet if society was based around the Olympics, and society expected everyone to be Olympic athletes, than most non-disabled people today would suddenly find themselves disabled. That’s the point the social model makes.

    It also does not make the point that being disabled is minor, unreal, or not a really serious problem for people. Life can really suck, you can have very real problems, and you can need help – and still believe in the social model. Unfortunately some opponents have tried to make it out like the social model is a way of minimizing people’s suffering. It’s not. It also doesn’t preclude people wanting to change things about themselves – just as someone who’s not an Olympic athlete may want to become one. In some cases, those desires are *VERY* deep, very strong, and very frustrating when unmet – that doesn’t invalidate the concept of the social model, either.

  27. Amanda, I responded to that post (the one of “point of view of an Aspergian”) earlier today but looks like the moderation hasn’t let my comment through yet.

    Since I said some of this to him already I don’t think it’s wrong to say it here too, but: I think sometimes people get way too hung up on the word “disability” when looking at what disability rights advocacy (in reality, not the strawman version) is trying to accomplish.

    I think that some people, no matter how useful the content of disability advocacy and theory might be for them (or people like them, or for society at large), simply cannot cognitively get past the idea that “disability” is a negative definition, in which a person is defined on the basis of what they cannot do.

    I don’t know what the long-term solution to this might be.

    I think some people are always going to find the word “disability” off-putting, and honestly I don’t think the answer is to try and convince those folks to use it to describe themselves.

    It isn’t always a case of them wanting to set themselves apart from (and perhaps “superior to”) those they consider to be really disabled — sometimes it’s a questioning of the idea of “disability” as a dividing line in the first place, and of the very idea that some people-in-power should get the right to decide who is and is not “human enough” to deserve autonomy and respect.

    I guess it’s sort of a matter of where you (generic “you”) perceive the “disability” designation as coming from — from, say, the DSM and the medical establishment (bad), or from within your community-of-identification (good).

    I think some people (rightly or wrongly) see disability as a word that comes straight from the medical model and therefore not as something that makes sense for people trying to get away from that model should use.

    Personally I’m okay with identifying as “disabled” as well as autistic. There’s just too much commonality between my experiences and the experiences of other people with various (and often more “obvious”) disabilities for me to reject the applicability of disability community or theory.

    But — I can see how an autistic person who, perhaps, didn’t grow up being pathologized in various ways (and who, as a result of luck and circumstance, didn’t need official documentation to get any needed accommodations in school, etc.), might have difficulty identifying with the experience of someone who bumped up against their differences pretty much whenever they tried to interact with their surrounding environment and culture.

    In any case, though, the designation of civil rights seems to make sense to more people, including those autistics who reject the disability designation.

    Maybe rather than trying to get more people to embrace disability identification (which is of course fine to do, I’m just saying that at a certain point, I think it could become a distraction), it would be better to simply promote the idea that no characteristic or configuration (race, gender, orientation, disability, etc.) excuses discrimination or unethical treatment.

    The really pernicious thing I see that needs addressing is the notion that some sub-class of humans exists that somehow “deserve” or merit discrimination, hate, and/or lesser ethical rigor in how they are treated. If more people can come to recognize that no, no such class exists, and that no, it’s not okay to just “write someone off” once you’ve established that they meet some supposed “level of disability” criteria, I think a lot of the semantic quandaries that compel people to identify and disidentify with the “disability community” (or any other politically active community, for that matter) will evaporate.

  28. This seems to be kind of like the whole debate over whether the UK should be part of the European Union or what happened to the West Indies Federation: http://en.wikipedia.org/wiki/Federation_of_the_West_Indies

    My point is that you’ll always have the fiercely nationalistic parts or in this case culturalistic parts of any community striving for some form of independence from the main body whether they’re Deaf or Autistic or whatever. Not always the measles of mankind but not always the solution either

    Also just an observation but this type of cultural/nationalistic pride does have a strong and banner allure which tends to be stronger in a specific sub group rather than a wider grouping.

  29. The biggest problem I have with the concept of “disability,” whether defined by the social model or the medical model, is that it’s talked about as if it was dichotomous. People are either disabled, or they are not. But as Joel points out, there’s a lot of gray area. It really is continuous– from the social model, you could say that the fit between a person’s abilities, and the way the world is set up, ranges from slightly problematic to extremely problematic. From the medical model, someone is anywhere from slightly impaired to grossly impaired. Ditto for the term “neurotypical”– I like it, and everything that it implies about the meaning of neurological difference- except the way that can imply that people like me (roughly NT) are homogenous.

  30. The problem with the medical model – and why, and I’ll say it bluntly, it is completely wrong – is that it doesn’t measure difficulty.

    It measures doctors (and other professionals) *attitude* about differences. Not the differences themselves.

    And if your difficulty isn’t significant to the medical establishment, well, it doesn’t count.

  31. Henry:

    I’m fairly severely visually impaired and, gee guess what: I have never once complained that I don’t have “access” to being a big-rig truck driver. Why? It’s way outside of my physical capacity. I would, quite frankly, be extremely dangerous in that situation, and likely, get a lot of people killed.

    No, but you probably would (and should) complain if society made driving a car or truck on your own the *only* possible mode of transportation anywhere. And people were saying things like: “You need a taxi or a bus? That’s not an accessibility issue–not being able to drive is a MAJOR problem! Especially for us, because it would take too much work/money/etc. to accommodate. You know what, why don’t you just stay home?” Or even: “That poor guy–he can’t drive! I wouldn’t want to live like that. If I were him, I’d kill myself.”

    I think these kinds of things are closer to the access Amanda is talking about…not “Anybody should be able to do anything they want.”

  32. Thanks Amanda……I think I kind of get the widget thing now…….I’ll try (again) to read your post about that when it’s not so late at night……..

    Obama won the caucus tonight yaaaaaayyyyyyyy!!!!!!!

    TI

  33. Amanda, my statement that autistic people have the right to identify themselves as being disabled or not disabled was banal and obvious. I meant it as a protest against there being an autistic community ‘party line’ that autism is a disability.

    I have read persuasive and passionate arguments that autism is a disability, and equally persuasive and passionate arguments that autism is not a disability.

    The Autistic Bitch from Hell has written here: http://autisticbfh.blogspot.com/2007/11/unfashionable-abilities.html that “we need to be very cautious about declaring millions of people to be disabled on the basis of recently created and vaguely defined diagnostic classifications.” She argues against the “arbitrary division of the human race into ‘disabled’ people and ‘normal’ people, which depends largely on what sort of abilities happen to be fashionable at the moment.”

    Are autism and Asperger’s syndrome disabilities because they are included in the DSM-IV? Because they cause clinically significant impairment in social, occupational and other areas of functioning? (I am quoting the diagnostic criteria from memory here). Is an autistic person who has a partner and is working in a job in a workplace with the accomodations they need, disabled?

    I believe that the boundary between autism and neurotypicality is fuzzy and indistinct. If autism is a disability, are people who are broader autism phenotype disabled?

    Disabled people’s moral right of self definition as disabled belongs to them, and not to medical professionals, or to anybody else. Though a disabled person may need to produce evidence of a professional diagnosis to obtain disability income and/or services.

  34. Well, the thing is nobody said anything about autism being a disability or not a disability. The argument over whether autism is “a disability” belongs to one or another individual model of disability, where disability lies entirely within a person. Which is precisely what I was trying to communicate with the thing about those first three arguments being identical. Saying that autism is “a disability” because of this or that trait, or is not “a disability” because of this or that trait, doesn’t know how the disability community tends to view disability. And arguing that it is not “a disability” because it’s not (insert thing here that the disability community has been arguing against as the definition of disability for a long time), is basically not helping anyone in the disability community, it’s just reconfirming prejudices they’re trying to fight about what disability means and what disability is.

    What Joel and I were talking about is whether or not autistic people are disabled, which is a completely different question than whether autism is a disability. The answer to that, in terms of the disability rights movement, is yes, and that also, yes the autistic community is a small branch of the disability rights movement, and is covering the same old ground all over again (only, in the ways people differentiate themselves from disabled people, all they end up doing is reconfirming the same old stereotypes of disabled people that disabled people have also been trying to fight, such as the idea that medical classifications are what define disability, for instance, which is why Joel keeps talking about reinventing the wheel here). The whole idea of “a disability” is pretty foreign from the standpoint Joel and I come from, it’s almost a nonsensical question, although I think both of us use that term just because it’s what pops out sometimes

    And a serious problem is that every time someone insists that autism is “not a disability”, they always do so giving definitions of disability that the disability rights movement doesn’t agree with, therefore reinforcing all the stereotypes they’ve been fighting. And that’s aside from whether “a disability” exists. Even if it did, this would be like saying in America at a certain point, that Irish immigrants were not immigrants because they were not stupid, unskilled, lazy, and bad workers. This certainly was a stereotype about Irish immigrants here at one point, and it certainly was false. But saying you’re not an immigrant because you lack those traits, is basically saying that other immigrants (for instance, Eastern Europeans at one point, Mexicans at another) have those traits. And those are stereotypes that when there were large waves of immigration from those places, people coming from those places have been trying to fight those stereotypes too. So it’s not fair to them and many others to claim that you’re not an immigrant because you’re not ______________ where that blank is filled in by things that other immigrants are not either.

    The autistic community has a habit of trying to set itself up as special. It’s really not. Everything we’re fighting for, other disabled people have been fighting for a lot longer and figuring out how that happens can give us pointers. Many of the times autistic people think it’s not what other disabled people have been fighting for, we think that because we’re just not familiar enough with those other fights. And that’s what Joel and I have been saying. People ought to familiarize themselves with what other disabled people have been doing, and how they’ve come to define disability (It’s not “because it appears in the DSM-IV”, but it does include that the discrimination against that group usually takes a medicalized tone, and you can’t deny autistic people have fallen under that category ever since the word “autism” was first used to describe us, and truly from even earlier than that when we were considered to have various forms of mental deficiency and/or psychiatric conditions). Other disabled people often don’t want to be medicalized either, and many of them don’t want their bodies seen as a medical condition at all.

    And yes, every single argument I have heard against autism being “a disability” (which is not even arguing the right thing, it’s back to the fact that saying autism is “a disability” is really about identical to saying it’s not “a disability”, those are both arguments from a medical classification of disability) is an argument that includes stereotypes disabled people are also fighting, and that reinforces those stereotypes of other disabled people. That’s why I don’t believe them. I’ve seen too much of other branches of the disability rights movement to believe autistic people are special, and I do believe that autistic people’s utter determination to be special and unique and totally different (while covering the same old ground and throwing those stereotypes right back onto other disabled people while they are trying to fight them) will be our downfall if we don’t watch out.

  35. It would help if either you or Joel would post links to the disability community and what it thinks (or multiple viewpoints if there are mulitpile viewpoints). You refer to it but I need links in order to read the stuff and understand it. If it is just referenced, I don’t learn anything about it and what has happened in the past. Give maybe 2-3 sites or links on the basic tenets of the disability community, or the history of the disability community, or something. Otherwise I will probably reinvent the wheel, not knowing any other information was out there. I’ve been accused of reinventing the wheel at many of my jobs, why wouldn’t I do it here, too?

  36. Phillip you do not get it.

    Disability is a construct it is something you don’t chose it is imposed upon you.

    If you understand what Joel is saying you will see that.

    In a feudal and largely agricultural society it did not matter if you could not read. In an industrial one it does, so if you can’t read you are disabled.

    Anything which is required of you to pass, that you cannot do by virtue of your inherent nature, to that degree it is a disability.

    Disability is not a constant or measurable thing, the borders shift and when we have been accommodated there will be others who then fall into new categories of imperfection or falling short.

    You lose by saying that you are not disabled because you are hiding from reality.

    In patriarchal society to be a woman is to be disabled. In apartheid South Africa and the segregated States to be black was to be disabled.

    In the Industrial revolution to be working class was to be disabled, and in feudal society to be a peasant was to be disabled, in Ancient Rome to be a slave was to be disabled,

    Well you lot who pretend normality (in whatever guise you deny that is what you are doing when the behaviour says otherwise) are never going to own up to being Spartacus are you?

  37. Again to make clearer

    I do not have a disability, I am disabled, they are very different things, disability should never be confused with disease never mind the point of view of some confused Aspergians makes me ill at ease and disses me.

    Damn it do I only matter if I am autistic, what if I were not.

    You (those who are so bloody perfect in there autistic hauteur) make a world to suit you but unless you understand what disability means you are creating it.

  38. As for would someone who has a good work environment, but who is autistic, yet able to work fine – would they be disabled? Perhaps, perhaps not.

    The question has nothing to do with “can they do it” or even “are they allowed to do it.”

    It has to do with, “Are people like them seen as disabled by society?” I would guess for almost all autistic people, the answer is yes.

    That has nothing to do with abilities or inabilities. The social model of disability is useful here – not to say “Here’s how we find ‘the disabled’”, but rather to say, “Here’s how society seems to define disability.” Once you understand that, THEN you can argue about the nature of disability. Not before then.

    And one person *can* be a member of the disability community without having major access problems personally. The issue is whether or not people like them have access (another word for this is “prejudice”) problems.

    In addition, “access” doesn’t have anything to do with things like driving a car. That’s the “how”. Access deals with the “what”, not the “how”. The “what” is “getting to places I need and want to get to.” For some people who can’t drive, walking is fine (they live in major cities where things are close, and have the ability to walk). For others, it’s having a friend or loved one drive them. For yet others it’s taking public transit. For others it’s paying a professional driver to be dedicated to driving their personal limo. But regardless, the what is “transportation”, not “driving a car.” Driving a car is only one “how”.

    I’m getting really sick of reading bad critiques of the social model from people who don’t even come close to understanding it. I get really sick of others who rail on why we aren’t disabled, yet don’t understand how the disability community sees disability. There’s a whole lot of “I’m right, nobody can tell me otherwise because my philosophy is the only possible correct one.”

    That said, I used to think like ABFH and others who want to ignore the fact that the emperor has no clothes and thus that disability doesn’t even exist as a social construct and there is no value in solidarity with the disability community. I like to think I’ve matured and learned from others. I hope I keep learning, and changing my philosophy as I get older.

  39. Damn it do I only matter if I am autistic, what if I were not.

    Yeah, that’s pretty much at the heart of what I’m saying about some in the autistic community trying to pretend we’re special and exempt from the exact same discrimination everyone else disabled gets.

    Except, apparently everyone else disabled deserves that discrimination and that stereotyping and all that, because what differentiates us from them is because we don’t want or deserve it. And they do. Or something. Because all those negative stereotypes, they apply to real disabled people, and not to us, or something like that.

    Which to me sounds like some weird kind of elitism.

  40. “Yeah, that’s pretty much at the heart of what I’m saying about some in the autistic community trying to pretend we’re special and exempt from the exact same discrimination everyone else disabled gets.

    Except, apparently everyone else disabled deserves that discrimination and that stereotyping and all that, because what differentiates us from them is because we don’t want or deserve it. And they do.”

    Shiva over at Biodiverse Resistance wrote a post recently about this kind of thinking: The Thing Itself is the Abuse.

  41. People who lose their driving privileges in today’s society become effectively disabled according to my interpretation of the social model of disability. Why do people who rely on cars so much to get from home to jobs to stores not understand that their need of trnsportation is the same as a person who uses a cane, a walker, or a wheelchair? Keep doing what you are doing, Ms. Baggs. People are losing their personhood like have happened in totalitarian regimes throughout history, each disguising their tactics as something that looks to the naive and ignorant, as good as intentions as they may have, as being beneficial for the public good. Why has good autism science (science including psychology and sociology as well as science not of variety of the eugenic-laden biology BS they tout) almost disappeared?

  42. “(Oh, and if this wasn’t already implicit in the above… thank you so much for captioning your own YouTube contributions, Amanda. If only more people– *particularly* in the autistic video-blogging community– could realize how helpful it can be!)”

    It’s also an important accessibility feature for those using computers without sound. On the internet, computer type is a big variable affecting accessibility – a person with a slow computer is essentially disabled on the internet.

    “But — I can see how an autistic person who, perhaps, didn’t grow up being pathologized in various ways (and who, as a result of luck and circumstance, didn’t need official documentation to get any needed accommodations in school, etc.), might have difficulty identifying with the experience of someone who bumped up against their differences pretty much whenever they tried to interact with their surrounding environment and culture.”

    I agree, but for me I see both as disabled viewpoints. I was diagnosed as PDD NOS at 15 and before then was on the edge of being considered disabled (teachers insisted I had *something* wrong with me, but my parents disagreed – I also have PTSD, which technically is a disability but is generally defined not as something you *have* but as something that happened to you which hurt you).

  43. There is so much material to this original entry and its responses……that I can’t keep track of it……

    I believe that a person is only “disabled” if he or she thinks so. Being disabled outright (not able to do anything in general) and not able to do certain things like driving or walking or seeing or hearing are different things. There are other ways to get around those things……and still be able to achieve the same ends as someone who CAN drive or walk or see or hear…….maybe not as fast, and maybe not the first or second or third or tenth time…….I think public transportation has GOT to improve…..the sooner it does, the better.

    But why hang onto the stereotypes in the first place? They are just extra mental weight…….shed them like unwanted pounds, and we can all move along faster.

    Athena.

  44. I hate to use The Integral to illustrate a point here either (and this isn’t personal), but… what you’ve said in the last comment is a good example of what I’ve been saying all along (although it might be more a product of not having been able to read more than a few of the comments, than anything else).

    People who are pretty much unfamiliar with the disability movement in general, and the stereotypes they’ve been fighting in general, are often very quick to say that they, or someone else, or some group of people, is not “disabled”. And then the reason they give as to why they, or someone else, or some group of people, is not disabled, is inevitably a stereotype that disabled people have been fighting against for years, decades, sometimes even pretty much as long as we’ve existed.

    The idea that “disabled” means “unable to do anything at all” is a really, really offensive one that disabled people of pretty much all kinds who are capable of fighting it have been fighting for a long, long time.

    There is a reason that there is a word to refer to human beings, “disabled”, that is different from the word “dead” (which, as far as our bodies go, means unable to do anything except possibly decompose, which isn’t really our doing).

    Even the vast majority of people who view disability as entirely medical or otherwise a property of an individual person rather than a thing that happens to certain people, do not view disabled as meaning can’t do anything at all.

    The idea that people are only disabled if we want to be is a nice fantasy. It’s about as effective as saying that women are only as subject to sexism as we want to be: Lots of women have gone out of their way to fight their societies’ inherent sexism, even sacrificed their lives fighting it, and while there has been change for the better it’s still around.

    And even to approach this from an individual point of view. Let’s say disability is just how your body works (body includes brain here so it’s left out on purpose, not by accident). Which is not how I or most of the disability movement views it (at least not entirely), but it is how people are taught to view it.

    I don’t know a whole lot of people who have tried harder than I have to wish their brains into a different kind of functionality. I even beat myself up for it not working, for the fact that I was still autistic (I didn’t know that word for it, I didn’t even have words for it, but I meant, socially inept, misfit, unable to do a whole lot of things expected of me, able to do less and less every day due to more and more overload). I thought if I was still me, despite all this really extreme pretending not to be so that I could watch “anything I believed come true”, which was something people said around me and never expected me to take it that literally… well then I wasn’t believing hard enough — because that’s the core of viewpoints like that and that’s why they’re so destructive. I wish someone had told me that instead.

    At any rate, it doesn’t work. It doesn’t work under a medical model of disability and it doesn’t work under a social model of disability.

    And classifying “disabled” as meaning something only applicable to dead people really doesn’t help disabled people either (nor does just deciding that’s a “negative term” and scrapping it, thereby also scrapping the word that we can all easily identify each other with, when we’re one group of people that really does need to organize, it’s like scrapping “autistic” because it might translate in some people’s ears to “selfish”).

  45. In my opinion the question of whether or not autistic people are disabled is interconnected with the question of whether or not autism is a disability. They are not two completely different questions. Though there is a distinction between them. An autistic person is someone who ‘has’ autism. If all autistic people are disabled then to me it follows that autism is a disability. Paraplegics are disabled because paraplegia is a disabilty.

    From my understanding of the social model of disability, autistic people are disabled not because of the intrinsic nature of autism, but because of the prejudices and negative attitudes of the neurotypical majority and the way society is currently organised. So if society becomes fully accepting of autistics and autistic friendly, then autistics would no longer be disabled.

    I don’t agree entirely with the social model of disability. It has flaws and limitations.

    When I was claiming Job Seekers Allowance up to about 5 months ago, I stated that as an autistic person I was disabled because I consider myself to be socially disabled.

  46. A good link to many papers on the social model of disability can be found here

    http://www.leeds.ac.uk/disability-studies/archiveuk/

    Dive in and start reading, it is your history whether you acknowlege it or not.

    I agree that the social model has limitations too, it is not meant as a be all or end all model (whereas the medical model does seem to be)

    When I want a body mechanic, I will go to a doctor but I don’t want to be defined by one, those are very different things.

  47. What I forgot to say is that the social model is a tool no more, but a powerful one for conceptualising difference in society and building bridges between people with very diverse physiological and neurological configurations rather than dividing people up by what they can and can’t do that is useful for whatever society they are in at the time.

    What is forgotten in looking at the past is how much of what people call a physical disability, was the norm in societies without access to modern medicine, it was a fact of life endured by rich and poor alike.

    So did the Emporer Claudius have a disability? by todays medical model he did, but the Romans did not categorise it in the same way.

  48. Answer to Mr Capella

    Tom Shakespeare is a critic of the Social model, he is by medical accounts an achondroplasic dwarf, by social accounts a baronet (by heredity)

    His most recent and controversial book was disability rights and wrongs published by Routledge last year. It is not very kind to Autistics either.

  49. “If all autistic people are disabled then to me it follows that autism is a disability.”

    This statement makes sense, but only if you use the word “disabled” in a different way than the social model uses it. Think of it as dis-abled. It may be that all autistic people are dis-abled– meaning that society prevents them from doing things they need or want to do. This is like saying, in Florida, that all convicted felons are disenfranchised. The state does this to them- takes away their right to vote. It doesn’t mean that it is inherent to the state of felonhood that you can’t vote. In another, hypothetical world, felons could vote, and autistic people coule be “able.”

    (quotes around that to indicate that I’m using it as the opposite of disabled, not to imply that many autistic people aren’t able to do many things.)

  50. How did the word “disabled” come to be favored over the word “handicapped”? Is it just the typical progression of euphemisms, where a fresh new word gradually takes on negative connotations by its association with the odious (in society’s view) people or things that it represents? Or, does “disabled” have some intrinsic value or greater accuracy?

  51. I think it happened because handicapped had a (false) folk etymology that had to do with begging, and a lot of people didn’t like that connotation even though it wasn’t accurate technically.

    (Whereas my last name really initially came from a word for begging (Beggs), but got misspelled on a census so now resembles another surname that has nothing to do with how it worked in my family (Baggs).)

  52. It’s too bad about “handicapped”; it has a sports-derived connotation of compensating for people’s varying abilities.

  53. Disabled entered the English language in the precise context of the verb to disable, a ship could be disabled and so could people by statute.

    That is exactly the way the Social model understands the term.

    What most people conceptualise as disabled is termed impaired (that’s a bit sus really because empairer is old French for the same verb essentially without invoking messrs Sapir and Whorfe)

    Handicapped is a sporting metaphor. The original Saxon is Crippled.

  54. Yeah, I get what you mean about handicapped. I have a few disabled friends who learned it while it was still the most popular word and really find it too bad it’s gone out of style.

    Crippled, yes, also dull, slow, etc., depending on who’s being talked about.

  55. Amanda,

    This is the first, and going to be the last, comment I make on this autism website or any other website. I am leaving your blog for good (good riddance in your eyes, I’m sure) and wanted to speak out just this once, to you and all the people in this web community. I am a parent. My child was evaluated for autism and was not found to be on the spectrum, but in the time it took (waiting for the appointment) for her echolalia and other signals to go away, I thought she was going to be diagnosed and so tried to make adjustments for living a different way. That is when I found your blog, and started reading. That led me to many other blogs, the autism hub, and many more personal websites. I tried desperately to get some truth, some understanding, some glimpse of what it feels like to be autistic – something that NT people CANNOT DO. But I wanted the knowledge, I wanted the wisdom, I wanted to believe in you and believe that neurodiversity is the key, that everyone is here for a reason, and the world needs to try and understand, in order to change. As a parent, I had to understand what my daughter was going through. I love her, I wanted to be the best parent that I could be. And you know what, Amanda? Do you know what I found on your website? HATE. I found hate. And bitterness. And resentment. I have read hundreds of your posts, and I probably don’t have enough to feel remotely half of what you’ve gone through. I am sorry the world treated you so badly. I am sorry for all the hell you went through, and all the horrible people doing horrible things to you. It goes without saying you are entitled to feel the way you do. But still it doesn’t justify your hatred – or does it? Because the world is not all that you experienced, and I am sorry if I sound like I’m lecturing I don’t mean to. The hatred of all these people Larry, Kev, Kassianne, Joel and so many others – do you think hatred and resentment helps you guys liberate yourselves from this world that has hurt you? If so, then I guess it has a purpose. But all it has done to this confused parent here is to make me want go as far away from this as possible. (again, good riddance to bad rubbish, I can almost hear someone say – and I guess that’s ok with me.)

    I am sick and tired of trying to explain and excuse the horrible negativity I have seen everywhere. Every parent who tries to “cure” autism (oh, I can hear the uproar of disapproval!) is evil (and stupid, too). Why? Because they want to help. That is all they want to do – HELP. Help their children, are you so confused you don’t understand that? And I am not talking about horrible parents who hurt and neglect their autistic children. I am talking about everyday folks who consider an alternative to vaccines, or people who look into chelation, or bio-med, or probiotics, or GFCF diets or whatever else they believe might help. Parents who are told by you and other people like you “don’t cure us, we are not a disease”, and who would see all the hatred at the slightest mention of trying to do something to improve their children’s current state. The anger at the mere thought of people not vaccinating their children is just horrendous for example. How DARE you, parent, cause this horrible thing to your child where they have a 1 in however thousands chance to get Measles instead of administering the safe(!!!!) vaccine to them. Well, I have done my research. I have gone to medical journals, I have read the data (medical data mind you – stuff I had to decipher and sometimes read with a dictionary) from hundreds of medical studies involving vaccines and autism, treatment options and autism, etc etc etc, and I can tell you that the results are inconclusive. Researchers are not sure WHAT in vaccines causes some children to react so violently, but they have noted that some do. Something in certain vaccines (the MMR one as well but not only) causes some children’s immune system to crash. My daughter’s did. I dreaded the MMR shot, but was practically forced into getting it into my daughter’s system because the doctor told me I was a bad mother and my child could die, that I was exposing her to this horrible risk. And so I did it. I did it for her, in spite of myself. And things started going wrong. And she lost some speech, and she started echolalia, and she couldn’t sleep and she couldn’t eat and she wanted to be along in the dark, and she screamed. How about that? Did I cause this to my child? Tell this to the doctor who said I was a bad mother before I gave her the shot, when she was happy and healthy. So I don’t care if the whole autistic world condemns me, and all here poke fun of me as uneducated and/or stupid, but I am going to think twice before I administer this vaccine again to my next child. I will pray and think hard. So those on the autistic web who are easy on judgment – have your say, spit on another parent who’s afraid. Terrified actually.

    So I’ve come week after week here, trying to believe and trying to learn, trying to understand, and trying to cure myself of my stupid beliefs. I am done trying. I don’t understand and probably never will. I am done trying because I feel that people like you Amanda, do not really try to understand others – like people without disabilities. It should go both ways, see. Not just one way. I have seen more ridicule, dislike and scorn for NT people here, and especially for parents, than I have for autistic people anywhere. My initial thought was – I don’t know what it’s like to be autistic, autistic people don’t know what it’s like to be a parent. The only key for communication is to try and be patient with each other, and slowly try to connect. I have discovered that autistic people mostly do not want to hear what parents have to say, unless it is the exact same thing they are feeling.

    Amanda, I know that you started out wanting to bring awareness to your world – you reached out in your video In my language, and communicated to thousands of people about who you are and how you are. I believe you are a good person, and I know from all that has gone on in other blogs, that you are a wonderful and dedicated friend. I wish you all the best and my hope is that you won’t lose sight of what you set out to accomplish – being understanding without judgment, without hatred and rejection of people who feel differently about things than you do.

    As for me, I am now hopeless of this communication happening. I have seen too much on this autistic web to believe that there will ever be an end to this NT-NNT war. I don’t want any more part of it.

  56. It’s strange…

    Because I was talking to some people during that discussion the other night. (I was going to put this into my post, but was too scatterbrained to do so.)

    And noting that I incurred more frustration trying to bridge the gap in communication between people who see disability medically and those who don’t, than I do trying to bridge the gap between autistic and non-autistic communication.

    In general, I think anyone who does have that opinion about me or other people (that we are angry, hateful, bitter, etc.) should read through these posts:

    I’m the monster you met on the Internet.

    On the “angry” nature of my writing.

    Those posts were both in response to someone who took my writing much as the person above did.

    I can’t fathom it, personally. I’m not about hate, not even the covert sort of hate that’s about wishing people didn’t exist. I don’t even wish that people who threaten me and my friends didn’t exist, and if that’s not an inability to get into or sustain hate I don’t know what is, given what some of the threats have been like.

    I know that in fact, Joel, Larry, and I, have all said that there are more important things than fighting over biomed, such as helping get people out of institutions and create viable alternatives, such as helping get people communication systems, that kind of thing. I know that Kassi is gluten-free. Etc.

    I just don’t see the hate that some people see in my writing.

    If you want accounts by autistic people, you’re free to get them, of course. I can give you names of books by autistic people on just about any topic. I’ve emailed you those, so you know my email address. Go ahead and email me, because you’re right that we’re not as much about sharing what being autistic is like as you may have expected. I’ll give you a list of books about any topic you want, and any sort of autistic person (unofficial or official categories are both fine) you want. That’s a procedure I’ve been meaning to automate (which is why I’ve read so many, trying to get categories for them) but I haven’t got around to it yet. So for now go ahead and ask me, and I’ll give you the names of any book I can think of regardless of whether I agree with it.

    I’m kind of saddened that you see hate where there isn’t any, because there is real hate (and irrational and pointless anger) among some autistic people, just not really among the people you mentioned. I hope you never run into them because they’re far worse than any of us.

    I’m also concerned that you’re taking the actions you view as negative from several different people, bundling them all together almost as if we are one person, and then throwing your own emotional reaction to it at all of us as one thing. That doesn’t work, we’re not all the same person.

    And I for one don’t tend to think that people who disagree with me are stupid.

    Nor do I see myself as “at war with” NTs. That would be pointless and genuinely stupid.

  57. Tom Shakespeare in the book “Disability Rights and Wrongs” presents substantial criticisms of the social model of disability.

    The social model downplays the experience of impairment in the lives of disabled people. Jenny Morris states in “Pride Against Prejudice” that “[w]hile environmental barriers and social attitudes are a crucial part of our experience of disability – and do indeed disable us – to suggest that this is all there is to it is to deny the personal experiences of physical and intellectual restrictions, of illness, of the fear of dying.” Other writers have made the same point in relation to the experience of impairment and the limitations of the social model. They have argued from within a social model perspective for development of that model, rather than its abandonment.

    Another area of criticism of the social model in “Disability Rights and Wrongs” relates to the problems of disability identity. A serious problem in adopting the disability label is “that building an identity around oppression leads the minority group into taking up a victim position. In this sense, a social model of disability can be as negative as a medical model of disability. Whereas the latter sees disabled people as victims of their flawed bodies or brains, the former sees disabled people as victims of an oppressive and excluding society. In both versions, the agency of disabled people is denied and the scope for positive engagement with either impairment or society is diminished.”

    A research project undertaken in 2003 by the Department of Work and Pensions in the UK found that 52 percent of people defined as disabled by the Disability Discrimination Act did not define themselves as disabled.

    Tom Shakespeare argues that the social model of disability has come to stand for all that is positive, progressive, enlightened and good. The medical model for all that is negative, reactionary, unenlightened and bad. It has become identified with all that is wrong with traditional attitudes to disability. I am tempted to think that the social model can be cariactured as the politically correct one.

    There is no entry for autism or autistic in the index of “Disability Rights and Wrongs”. I have found one paragraph about the implications of barrier removal for autistic people. “If someone’s impairment makes interaction with others difficult, it is difficult to see how the mainstream world could be adapted to accomodate him alongside other people. People could be educated to become more accepting and supportive of people with autism: this would remove one source of distress and cruelty. But someone with autism may find even the most well-meaning and respectful crowd of people still a disturbing and confusing invasion.”

    To me the social model and the medical model have something of mental widgetery about them. To a great extent they are theoretical constructions.

    The boundary between disability and non-disability is not clearly defined. I think of it as like boggy or marshy ground where there is no clear distinction between firm ground and what is soggy and watery.

    This uncertainy is particularly strong in relation to autism, which is one reason why the idea that autistic people are disabled is so vehemently contested.

  58. I agree that there’s a lot of widgetry there. And my own view is not either the social or the medical model, but it’s harder to articulate my own view so I throw the social model out there for people who find widgets easier to deal with.

    My critique of the social model would be different than most of the ones I’ve heard, though, and I have no clue how to articulate it.

    But it’s not even medical vs. social model that’s my point here.

    And I don’t know how to say what my point is, though, which leaves me forced to throw other people’s tools at people and let them sort things out.

    I’m really frustrated in all of these conversations because critiquing the social model is not critiquing my view of disability, nor is it critiquing the reasons autistic people are part of the disability whether we like it or not, or acknowledge it or not (and disabled people are in turn part of a whole set of different communities all with specific things in common).

    It’s not something I understand how to say. It doesn’t make it any less real. I’m really sick of having my views characterized as the views of the very much purely-physically-disabled men who wrote the widget entitled the “social model of disability”. I don’t work in models but I cannot tell you what my views are so I have to say “Here, look at this.”

    I expect that people can fill in the blanks, look at what I write, and figure out that there’s no possible way that my viewpoint could fall into that area, and thus figure out that I’m just throwing it out there as an approximation of something and that I’ve actually thought this through to the extent I really have.

    Because, the things listed in Jenny Morris’s critiques don’t strike me as not contained in the way I view disability, nor do those of Tom Shakespeare’s critiques I actually agree with.

    Maybe I ought to say at least what I do and don’t agree with in what’s said, and maybe people will be able to fill in more blanks or connect the dots or something and not just sit there smashing widgets (which is really, really, easy, considering what they are) as if that deals with my point of view on this.

    Basically, as far as I’m concerned, what we call disability (in an individual sense) is a form of natural variation among people in general. This goes for all kinds of disability, whether they’re considered pleasant or unpleasant or some combination of the two.

    Then, we have certain cultural attitudes that lead to things being made really easy for some kinds of people and not for others, within this variation. When the “not for others” part happens, it’s usually in a medicalized way at the moment and in the places I’m familiar with (it’s been different at different times in history, and different places).

    The things that are made for some people and not others do not stop with the outward constructions of things. They also have to do with how we view certain things. Making a particular situation accessible for a disabled person means more than just putting ramps up and changing overt attitudes of discrimination.

    We also have certain cultural attitudes towards pain and death and so forth. There are kinds of pain, both physical and emotional, that we have support to deal with, and ways of viewing it that are actually useful, built into our cultures.

    There are other kinds of pain, both physical and emotional, that we do not have the proper support to deal with, nor useful attitudes towards.

    For instance, when people are in extreme emotional pain to the point where they can’t function in our current society to the degree they’re expected to, the most common reaction is to tell them to see a therapist or psychiatrist, and in fact to tell people’s friends that this sort of pain is too much for them to handle.

    When people are in severe, chronic pain, we generally do not offer them any way to manage it properly. There are good medical ways to deal with almost all kinds of pain. However, they are not readily available to most people, and most people are treated in ways that can even be dangerous.

    Meanwhile, gossip in general tends to treat people with severe, chronic pain as lazy, addicts, or both. (And don’t even start me on how we treat addicts. I saw a great post on that recently and now I can’t find it anywhere to link to it.) Basically, we’re often treated in a moral way. And people don’t want to deal with the fact that we’re in pain, it often scares them that it’s so persistent, so we often can’t talk about it.

    It does interest me, though, that there are so many different ways societies deal with various kinds of pain, even outside of the medical profession.

    I don’t think the way that various people have fleshed out disability really talks about pain or illness as much as it should, but at the same time, that’s more like how many autistic people haven’t fleshed out the experiences of some other autistic people. It doesn’t mean there aren’t ways to do it, it just means nobody’s done it at great length yet in a way that most people have seen.

    I don’t find any contradiction between focusing on the experiences day to day of disabled people, and noting that we live in a society that disables us in both very obvious and far less obvious ways.

    I also don’t think a person has to take a victim mentality in order to try to stop various forms of disablement and oppression. I don’t think that noting that a person can be oppressed on a particular basis, or even describing it at great length, is the same as lying down and taking it.

    Basically I look at our variation as completely natural and I don’t limit the oppression I notice to the most obvious things, I also think it filters down into the things that Jenny Morris talks about, it’s just more subtle and complicated than saying that stairways disable people who can’t climb them. I don’t see people as separate from our own societies that we live in, so I don’t see our lived experiences as separate, or even separable, from the things that happen to us as a result of the societies we live in. We are a part of everything that happens to us so of course our experiences are included in that. I have trouble even conceiving of the abstractified widget-version of the “social model” that somehow tries to take our real lives out of the picture. That makes no sense to me.

    And what I have seen in the disability rights movement tells me very firmly that in this time and place, autistic people are disabled. We are shut out of a lot of things, subject to various forms of oppression that are identical to the kinds other disabled people face, and it happens in a medicalized way. (And yes, I believe that gay people were once disabled and in some places still may be, and it means absolutely zero negeative about gay people to say this.)

    I suspect that Larry and Joel, with their also experience of the disability community, also see it in a very similar non-abstractified way to the way that I do. And in this way of seeing things, autistic people are definitively plonked straight in the middle of those called disabled, it’s not a question of personal choice, nor is there much of a blurred line among autistic people because everything we face is so identical to many others, and I do mean identical.

    That’s the basis I really see it on. Real-world stuff, not abstractified nonsense. Anyone can critique abstractified nonsense because it’s only the most low-resolution outline of reality, so any given piece of reality is unlikely to fit within it. But I’m not arguing my points from in the middle of the abstractified nonsense that is being critiqued, so critiquing that stuff isn’t necessarily critiquing my own views on this stuff.

  59. Phillip this is for you.

    This is my critique of the social model, http://www.disabilitystudies.net/uploads/2006/i%20have%20schizophrenia.ppt

    I expect Tom Shakespeare is familiar with it because I presented that at the same conference where he was cheerily promoting his new book success and at least I was able to partake of Routledges Wine while it lasted, although I had to radically rewrite my presentation afterward to fit in with the timing of the programme.

    Hope it is not too abstract and heavy going.

    I am critical of the Social model but like many other models of the world at the end of the day I find it serves it’s purpose very well rather as Newtonian mechanics still does. At the intellectual edge it is open to question but as a real world pragmatic it really is more effective than the medical model that centralises the fault on the individual.

  60. I also notice that there’s some sort of comment somewhere in there about humor at non-autistic people’s expense.

    If you are talking about posts such as Questions for Neurotypicals, I was very clear in that and many other contexts that I did not believe those things were true of neurotypicals (a term I am using to mean far more than “non-autistic” here, since there are many neurologically-atypical sorts of people out there), I meant to show how absurd and offensive it is to endlessly ask autistic people similar questions. So, of course, I had to make similar questions for other people that were frequently absurd and offensive.

  61. I have to admit, I’m a widget fan, though I like to have several different widget systems in view and mix and match them as appropriate. It’s exciting to be in the midst of all these discussions about different paradigms, especially since I don’t get as much exposure as I’d like to anything other than the medical model in my psychology program (though some teachers are better than others at giving us space to critique it and explore alternatives).

    “Basically, as far as I’m concerned, what we call disability (in an individual sense) is a form of natural variation among people in general…
    Then, we have certain cultural attitudes that lead to things being made really easy for some kinds of people and not for others…”

    This conceptualization makes sense to me. It incorporates the most obviously true aspects of several models: people do have different levels of absolute ability, and people are given opportunities based on not just their absolute ability but the arbitrary fit between their pattern of ability and that which is valued in society at large.

    As far as pain or illness goes, it may not be discussed in some contexts because not all people who are disabled are in pain or ill. Pain or illness can cause a reduction in “absolute” ability that results in being disabled, or it can cause someone to be disabled directly because of the prejudice we have against people who are ill or in pain. Ditto for “mental illness,” by which I mean distressing emotional or perceptual experiences. Sometimes depression keeps you from working because of the pain you are in, and sometimes it keeps you from working because you acquire a negative label that affects the way people see you (or the way you see yourself).

    I would like to see mental health professionals be more aware of the role we play in people becoming disabled by the stigma that surrounds mental illness.

  62. I don’t know how anyone could read a lot of posts on this blog and come away with a sense that you (Amanda) are expressing hate. I am guessing maybe such people have a definition of “hate” that probably means something like, “doesn’t offer particular social validation signals that Nice People(TM) do”.

  63. To AnneC etc.:

    I think some people also automatically equate “anger” to either “bitterness” or “hatred” or both when anger does not actually need to imply either.

    People also sometimes misinterpret frustration as anger (and thus as bitterness or hatred) especially when that frustration is expressed in strong terms.

    Sarcasm can also be misinterpreted in the same way.

    Blunt language generally also can be misinterpreted as anger (and thus bitterness and hate). By blunt language I don’t mean necessarily absent in “social validation signals” or the like, though it can include that as one characteristic. I also mean being plain spoken and direct about your opinions on what is right and what is wrong. A sharp dileniation between the two, with only a few shades of gray in between, also tends to be viewed as “blunt.”

    And as many people here probably know very very well by now: sometimes criticism of specific things that some individuals DO can end up being interpreted as an indictment of the PEOPLE who do these things. Which can raise defensiveness and make it harder to read the tone of what is being said accurately. I think if a person feels threatened by the CONTENT of what is being said then they will perceive the TONE as being necessarily “angry” even when it’s not at all. Because sometimes an angry tone in and of itself can feel threatening even when the content is neutral, so maybe some people have difficulty separating tone from content for that reason. (I don’t know if that made any sense.)

  64. I don’t know what to make of “autistic people don’t know what it’s like to be a parent.”
    *sighs*

    My own mother is autistic and there are plenty of other autistic parents out there, and a lot of them are expressing much the same views as this blog.

  65. To Ivannka Epps:

    I am Amanda’s mother…I have never known her to be about hatred or bitterness…nor have the people you linked to this. She has gone through so much hatred and abuse as have many others and still writes of basic rights and acceptance.
    You must have been reading these posts with negative filters on your glasses…I truly hope for good health and happiness to you and your family…and I hope someday you are able to discern truth more clearly.

  66. We’ve been accused of “being full of anger and hatred” because of our website too. I still don’t get it. I think part of it is that the kind of people who are used to websites that address them with “emotional support”– which seems to amount to telling them no matter what they do that they’re brave, courageous, wonderful, that they live a life of horrible suffering and no one could blame them for anything they did, and so on, start to jump to the conclusion somehow that anyone who addresses the “issue” in question (whether it’s autism or plurality or whatever) with anything other than the “support” they’re used to is hating and attacking them. Especially if they’re criticizing, even in a very formal way, what’s regarded as “help” by most people on the aforementioned “support” sites. At least, that’s the best explanation I’ve ever been able to figure out for why some people (but not all, I guess) decide they’re “being attacked by everyone” when the “everyone” in question haven’t done much more than just not respond to everything they say with complete approval, or questioned some of their conclusions and reasoning.

    Personally, one of the reasons I *like* reading this blog is because it doesn’t degenerate into personal insults being thrown around right and left like a lot of other ones we gave up on.

    And– yeah, to chime in very late to what some other people have said, because we’ve been following this thread but haven’t really been able to put together a good coherent response to express our take on things– trying to use social model of disability as a widget doesn’t work for us either, it just comes a lot closer to our views of the matter than the medical model does. One of our problems with trying to get involved in any kind of organized activism has always been that everyone else seemed to be making “reverse widgets” that held opinions opposed to the dominant model but tended to work in the same way, mentally speaking. (In one case we basically got written off because we were being told we had to make this one person’s widget into our “life philosophy,” and we couldn’t do it.) And the fact that we have a track record of being told we were breaking all the social rules even in “outcast” groups, so nowadays we try to give a wide berth to anything that’s too structured or where the members are already very close-knit.

    But– the other problem with Reverse Widgets is that once they get well-known enough for people to form a distorted idea of them, and you speak vocally against Dominant Widget and everyone else assumes you have Reverse Widget. That’s frustrated a lot of not just our activism, but even just our *speaking up,* if it seems like it’s going to be an exercise in futility and someone has already formed a conception of what “those people who don’t like us” want and think, etc– like all the weird things that are assumed to be in the reverse widget of being opposed to conventional psychiatry, for instance.

  67. Misu, do you mind if I quote some part of (may not be all of) your comment, particularly these two segments:

    One of our problems with trying to get involved in any kind of organized activism has always been that everyone else seemed to be making “reverse widgets” that held opinions opposed to the dominant model but tended to work in the same way, mentally speaking.

    and

    But– the other problem with Reverse Widgets is that once they get well-known enough for people to form a distorted idea of them, and you speak vocally against Dominant Widget and everyone else assumes you have Reverse Widget. That’s frustrated a lot of not just our activism, but even just our *speaking up,* if it seems like it’s going to be an exercise in futility and someone has already formed a conception of what “those people who don’t like us” want and think, etc– like all the weird things that are assumed to be in the reverse widget of being opposed to conventional psychiatry, for instance.

    …and then link back to the widget post for those who haven’t read it, and then discuss… all in a new post rather than a new comment because I want people to actually read it rather than get it lost at the bottom of a long comment thread?

    (I’d credit you by name, etc. I basically want to reply to this, quote it, and add a lot more detail.)

  68. “I also don’t think a person has to take a victim mentality in order to try to stop various forms of disablement and oppression. I don’t think that noting that a person can be oppressed on a particular basis, or even describing it at great length, is the same as lying down and taking it.”

    To me, it seems like the opposite actually. How can you fight something you don’t even know is there? It seems to me those who are blind to discrimination are ‘lying down and taking it’ far more than those who recognize it. It’s like, for example, if you’re being set up by bullies to do something bad, if you don’t realize it you’re likely to fall in their trap (unless you get lucky, like when I asked a girl who hate me why she was inviting me to her birthday and thereby discovered the invitation was a fake). If you realize they’re trying to set you up, then you can avoid the trap. Society seems to pull disabled people into various traps, and you’re a whole lot better able to avoid those traps if you can see them.

  69. I don’t know what to make of “autistic people don’t know what it’s like to be a parent.”

    Me either. I suppose I could say “NT parents don’t know what it’s like to be an autistic parent!” I do think in some ways that I have fewer worries than someone who doesn’t know if their child will ever be able to live independently (“independence” being a relative term of course). Mine will, unless he becomes disabled later on due to an accident, disease, etc. I try not to think about that. But for parents who have children who look (now) like they might not be able to live without them, I can understand that their worries are more profound than what I go through being the touch-averse human bean bag for a sensory-seeking preschooler.

    I haven’t bothered to imagine why someone with Asperger syndrome would want to be distanced from the disability rights movement, such as the poster at “Point of View of an Aspergian.” Probably in the same online session in which I figured out I was on the autism spectrum I also began reading trying to figure out if there really was any difference between Asperger’s and “autism,” and the first thing I noticed was that although some “experts” said there might be, when it came to cures, treatments, genetic testing, therapy, etc. we certainly were not left out or singled out but lumped right in with all the other people who needed to be cured, regardless of where we were on the spectrum. If “improvement” was what people wanted to see in their autistic children, then it seemed that somehow “improving” from “autism” to “Asperger’s syndrome” would be talked about in glowing terms. It wasn’t. Hmmm….So I cast my lot with what is sometimes perhaps an arm of the disability rights movement, which could also be a more mainstream part of it in future (I’ve also read of autistic people being treated rather poorly on cross-disability lists but I haven’t joined any of those yet). I did not understand something in the first few posts, perhaps because I was speed-reading, but I’ve been reading disability rights books and articles since about 1979 when I took a class called “The Sociology of Deviance.” For some reason I thought you and Joel were talking about something different and couldn’t figure out what it was.

  70. “I don’t know what to make of “autistic people don’t know what it’s like to be a parent.””

    Non-autistic parents don’t know what it’s like to be an autistic kid, either. So we’re even. Now, why not learn from each other?
    Besides the fact that many autistic people *are* parents, of course…

  71. Thank you for pointing me to those two critiques earlier on in the comments. Personally I tentatively identify with the disability (primarily neurodiversity) community for personal reasons (it was how I got in to the mess that is the debate in the first place) and tactical ones rather than ideological ones.

    The way I see it It’s far more effective to work in an established movement with different groups in a similar position than to build alliances and see how that goes, differing position where necessary . Also it puts things in a wider perspective rather than a narrow one.

  72. haven’t been keeping up with the blog lately…….been busy the past few days with starting school and stuff……in your reply to me that said (and it’s not personal) I know that……if I have flawed logic please do point it out when you can or wish to. That’s the best way for myself and the rest of us to learn.

    Athena is a bit of an idealist……..at times. Ivan is a bit of a cynic……..and I’m………confused. Not always, but it does make for a bit of a chuckle……..

    TI

  73. Pingback: Disabled Human « Odd One Out

  74. I refer back to discussion about Tom Shakespeare. I think the importance of DISABILITY RIGHTS AND WRONGS is that it addresses polarization and this is a huge issue for the autism community. I know that there are many authors in writing on this topic, but I don’t begrudge Shakespeare his commercial success. To my mind, he has made disability critique accessible to many people who would not or could not read more scholarly tomes.

    I think this quote was from Joel Smith who said:
    “It also does not make the point that being disabled is minor, unreal, or not a really serious problem for people. Life can really suck, you can have very real problems, and you can need help – and still believe in the social model. Unfortunately some opponents have tried to make it out like the social model is a way of minimizing people’s suffering.”

    I agree that the social model can accommodate individual needs however people who focus on the medical model tend to focus on the challenges people face and critics of the social model tend to focus on the fact that many people have a poor understanding and only quote the truisms or popular catch phrases, minimizing the impact of the individual’s characteristics. For these reasons, I welcome a view of different abilities which defines the issues wholistically ie focus on strengths and needs of individuals and also a problem solving approach to difficulties. For example some contributors have pointed out that there can be clashes in rights. Cost seems to be cited as a good reason to ignore the rights of one group over another. I believe that focus this is problematic. Cost can easily be trotted out as a reason to do nothing whereas creative problem solving which requires us to analyse the needs of different groups (that is the medical model) and accept their rights to equal participation (social) can come up with an equitable solution. Yes, these are artificial divisions, but humans often need to categorize information in order to deal with it conceptually. Maybe that is their disability. lol.

    Unfortunately in the same way that women were often antagonistic towards the women’s rights movement, there are people with disabilities who do deny or downgrade suffering associated with atypical bodies and minds.

    Often, they are people with disabilities who are overgeneralizing their own experiences to those of others.
    eg the comment, “I believe that a person is only “disabled” if he or she thinks so.” In the case of autism, some people do suffer. I work with a young man of 13 who is suffering because he observes social interactions as being so easy for others and so hard for himself. He has friends and is not teased or bullied by his peers but he also recognizes qualitative differences in social experience and he is going through anguish way beyond fairly typical teenage angst. I don’t presume to tell him that his emotional pain is not real or that he does not experience more difficulty than others. Nor would I presume to tell him not to regret that he cannot have the ease of social ability that his peers experience. This young man has profound abilities eg perfect pitch, ability to calculate rapidly, but his disability is just as profound in that people need to relate to him on his terms, he cannot begin to match theirs and he knows it. If he did not care about social interactions, he might not see himself as disabled. Who are we to tell him that he is wrong to care or that if he just tries harder he can achieve whatever he wants. That is just crap.

    I have a successful career but there is a cost to that. The cost is that I cannot work and sustain relationships. I don’t have the energy. I have significant difficulties with auditory processing and executive function. While I do better with social interaction than many people with ASD, it is not pleasurable and I find my work very taxing emotionally. I do not view myself as disabled. I prefer the term differently abled as indeed I have strengths that have helped me compete successfully for promotion. However, I make sure that my colleagues are informed about my difficulties because I need them to accomodate my needs eg I have great difficulty with meetings and require information to be presented both verbally and in visual form eg fishbone and venn diagrams to support understanding of complex abstractions, tables, PMI charts, flow charts etc. Interestingly, accomodating my different abilities helps many other people to use their abilities more effectively.

    In my opinion, the strength of constructing a model of disability which encompasses both the social and medical models facilitates discussion and understanding of the rights movement and the very real differences and needs of the population of people with different abilities.

    An aside which I find entertaining is a small story about a well known autism expert. i had set up an online meeting where he was to communicate with about 20 autistics in a chat room. He was terribly nervous and edgy and asked for a typist because he could not think and type. lol multitasking issues there. Part way through the discussion, the expert began to exhibit some verbally aggessive behaviour towards one autistic participant. He felt that the person was picking on him without justification. He definitely felt bullied and intimidated. The difficulty was that the autistic participant did not ask questions to clarify understanding. He made statements which were to be agreed with or challenged. In this situation of communicating with a large group of autistics, Dr Expert was disabled and was experiencing considerable emotional pain and bewilderment. If that kind of stress continued over a long period it would contribute to physical expressions of stress but this guy at no point saw himself as disabled. However I did. It really emphasized to me the extent that social influences, context and environment affect perceptions. We need human constructs such as models of disability so that understanding from different perspectives can be combined to provide an equitable way of providing services and supports and measuring success. This does not mean that everyone needs to understand or use the model structure. It is fine for individuals to focus on personal perspectives. It is not fine for service providers and lawmakers to operate from their personal experiences only.

  75. Amanda,

    You wrote: “I’ve seen too much of other branches of the disability rights movement to believe autistic people are special, and I do believe that autistic people’s utter determination to be special and unique and totally different”.

    However it seems to me that to believe that autism is deeper than personality is to regard autistics as special. As far as I know, people who are physically disabled or sensory impaired, or diagnosed with a mental illness/disability such as schizophrenia do not regard their disability as being deeper than their personality.

    I know that autism is not a personality type and I believe that it is probably a different type of brain functioning from typical people. But different easyily becomes special.

    Maybe you meant that autistic people see themselves as special in relation to other disabled people and not as special because they’re autistic.

  76. Amanda, you are my new hero. I cannot even begin to marvel at how amazingly articulate you are. you seem to have described so perfectly the things I have been fumbling after for so long.

    thank you for being you, and having the courage to put that you out here for such intense scrutiny.

  77. flourescent lights make migraine worse?? oh my… i didn’t know that :0 i often have migraine… at least, most people have told me it “must be migraine” because they can’t come up with a better diagnosis… :/ they say it’s “migraine” when they can’t find anything else, hehe.. funny, most of the things ailing me are ‘disorders’ and have no cure :/
    man, i didn’t know lights can make it worse :/ my head starts hurting, and it just starts. i guess i never even TRIED to notice if it has to do with the lights.. i hate those lights though, they’re everywhere. they make your eyes sore at least..

  78. Pingback: Quick post on distancing from disabled people | Fragments and Ramblings

  79. Pingback: On distancing from disabled people | A world that loved monsters

  80. Pingback: Self-determination is a fucking joke and widgetry harms real people | A world that loved monsters

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