Identical behavior, contrasting responses

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This post has been forming itself in my head ever since I went to both a DD self-advocacy conference and MIT within the same week last May. I’ve just for whatever reason not had the chance to actually write it.

I really enjoyed spending time at MIT. People there accepted me more or less as I was, and accepted a lot of other disabled people as well. In fact, their entire Human 2.0 symposium, that happened while I was there, dealt with the fact that disabled people get a lot of technology before other people do, and was about how technology that could enhance everyone’s lives was being developed specifically for disabled people all the time.

At some point there, I had a bad migraine and needed to lie down. They allowed me to lie down backstage under a table. I expressed fear over this. They were shocked and said that people lie down on the floor all the time at the Media Lab, that it was just part of how the place worked, and that they couldn’t imagine why I was afraid to lie down in public. I didn’t know where to begin with the sort of cascade of connections that went through my head more than ever at that point, but a steady stream of which had been falling through my head the entire time I was there.

In May, I went from a self-advocacy conference for people with developmental disabilities, to MIT. This involved an extreme contrast in what the lives of many of the people there were like, in terms of what sort of person they were classified as by society in general. In other ways, there was no contrast at all.

When I was younger, I went from assorted programs for students classified by the educational system as “gifted”, to assorted programs for people that the educational and medical systems had written off with a whole variety of labels. There was a great contrast between the way people were treated. There was, yet again, less innate contrast between the people involved than most people imagine.

If I were to describe being places where people routinely ate non-food items; had a variety of unusual tics; appeared to believe things that most people would call delusional; found it impossible to learn in regular classrooms; looked at first glance (and had been thought to be by others) what most people call “crazy” or “retarded”; were frequently under the care of neurologists, psychiatrists, and other such professionals; had unusual mannerisms and postures and behavior that in most places would be considered bizarre; and frequently had pretty extreme delays in areas like self-care; which one of these places do you think I’d be talking about?

If you thought special ed… the answer is yes.

If you thought mental institutions… the answer is yes.

If you thought gifted programs… the answer is yes.

I made the transition between these situations more abruptly than most, so I was able to see the similarities and the contrasts very starkly. Most people who have been in only one or the other situation, or whose transition between one and the other situation is gradual, or whose perceptions of other human beings come pre-filtered and pre-packaged to the extent that they see great differences merely based on what classifications the people belonged to… these people would not necessarily observe these things. I did observe them.

Lying on the floor is one of the things that starkly cuts through all of these situations in my memory.

I remember me, and a lot of other people, lying on the floor at places like nerd camp and other gifted programs. We were seldom, if ever, chastised for it.

I remember a tall boy in a mental institution who tried to lie on the floor in the hallway. I remember staff converging on him and saying they would have to do something about it. He wasn’t hurting anyone. He wasn’t even blocking anyone’s entrance to anywhere. Another inmate tried to say so. The staff told her that he needed to learn to do as he was told and needed to learn to look appropriate. They called for reinforcements, since he was a really big guy, and then grabbed him and carried him off to the isolation room while he fought them. His fighting them was seen as a symptom of a violent nature, rather than the natural reaction of someone who has been grabbed by several people to be carried off to a small, locked room, for doing something he considered totally normal.

People don’t always realize this simple fact: Lots of people do the same things for the same reasons, regardless of how they have been classified by the medical profession. Once the people doing these things are in an environment where their every move is watched and pathologized, they can get in trouble for it, or get put on an extensive behavior program for it. My ex-boyfriend ate paper and most people saw it as an eccentricity, because he was labeled gifted. There were a lot of people who ate paper in other settings, probably for the same reasons my ex did, whatever those reasons were (I never asked). People put them on behavior programs for it, because they were considered to be doing it “because they didn’t know any better” (and whatever anyone said in public, it was obvious they thought of a lot of us as “crazy” or “stupid” or both, and thought those to be the reasons we did anything they didn’t like).

I used to be unafraid of doing things like lying on the floor, even sleeping on the floor. Psychiatry made me afraid and called that an improvement. I walked into MIT afraid, and they were astounded at my fear, and disgusted at the sources of it.

I went through gifted programs terrified of when someone would discover that I understood less than they thought I did (in sociological terms I was aware, as few others were, that I was discreditable, but only partially discredited). But because of the privileged life I’d led in terms of that classification, while I legitimately feared being put in mental institutions and labeled, I never dreamed that I would become afraid of as innocuous actions as lying on the floor, running around squealing in happiness, or a number of actions that were deemed totally normal in the environments I lived in. But I did become afraid of those things.

For three days, twenty-nine staff members at Elgin State Hospital in Illinois were confined to a ward of their own, a mental ward in which they performed the role of “patient.” Twenty-two regular staff played their usual roles while trained observers and video gameras recorded what transpired. “It was really fantastic the things that happened in there,” reported research director Norma Jean Orlando. In a short time the mock patients began acting in ways that were indistinguishable from those of real patients: six tried to escape, two withdrew into themselves, two wept uncontrollably, one came close to having a nervous breakdown. Most experienced a general increase in tension, anxiety, frustration, and despair. The vast majority of staff-patients (more than 75 percent) reported feeling each of the following: “incarcerated,” without an identity, as if their feelings were not important, as if nobody were listening to them, not being treated as a person, nobody caring about them, forgetting it was an experiment, and really feeling like a patient. One staff-member-turned-patient who suffered during his weekend ordeal gained enough insight to declare: “I used to look at the patients as if they were a bunch of animals; I never knew what they were going through before.”

from The Lucifer Effect by Philip Zimbardo

And that’s what happens during what people know as an experiment. Imagine being put in such a situation because something about you was deemed pathological, by people who viewed you as such.

I enjoyed my week at MIT. But every moment I was there, I was conscious of what an autism “expert” had told me, which was that I didn’t belong at a university at all (if I ever get an MIT business card, she will receive one in the mail). I was conscious of being a privileged member of what was otherwise considered an outsider-caste to that whole system, conscious of this in a way that even with my fears I had not been conscious of prior to experiencing being shoved into the typical environments of that caste once others discovered my place in it. I was conscious of a society that tolerates and even celebrates certain behavior among those it considers highly intelligent, while condemning others to torture for the exact same behavior because they are considered either not intelligent enough, or too crazy, or otherwise deviant, or some combination of the above.

And I came home to my own apartment, where last week a staff person felt he had the right and even the obligation to report to my case manager that I was grumpy in the morning before breakfast (edited to add: in fact, he never made me breakfast, or lunch either). How many of you out there who share this morning grumpiness trait with me have it reported to a case manager and put in logs that would normally go into your permanent record, and even treated as signs of your overall personality?

(I should note that even many of those considered “highly intelligent” do, have, various, labels, and things like racism and classism can greatly influence what label a person gets. If I were anything other than white or middle-class, I might have had very different sets of labels much earlier.)

It’s because of experiencing the extremes of this so rapidly and close to each other, sometimes in such combination with each other (because my life can’t just be sliced up into two categories without any complexity to them), that simply having my normal behavior accepted at MIT for a week isn’t good enough for me. I won’t be satisfied in this regard until everyone else with a psychiatric or developmental label (or who would get such a label in certain situations) can enjoy the same freedom to be themselves in completely harmless ways, and the same level of inclusion in society and decision-making that affects us, that those of us considered “highly intelligent” often enjoy, and until nobody gets written notes in their official record for being a grumbly grouch before their morning breakfast or coffee.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

49 responses »

  1. You know, I was almost placed in an institution when I was in 4th grade, but my parents chose to NOT listen to the psychiatrist (at least in that regard; I was given a cocktail of drugs.) I was also in and out of gifted and special ed programs, and I, too, noticed the manner of treatment accorded to individuals depended upon their LABEL, not their behavior, which made me very angry (and, ironically, because I was in the gifted program at the time, I had a nice little addition to my file that said I was “more sensitive to injustice than my peers.” I might or might not have received a gold star.) I STILL like to eat paper, and I love to lie on the floor. Anyways, this “more equal than others” treatment has irritated me throughout my life, and I make it a point to not do it. I sometimes fail, and am by no means a Saint, but I just tend to treat everyone the same because I see everyone as being inherently the same, and also because I’ve experienced the “less than equal/more than equal” treatment and it sucks.

    I also had to smile when you mentioned the note on grumpiness in your file (not at you, though, just the situation.) I am more or less adept at “pretending to be normal,” inasmuch as I can use my Highly Intelligent label to “explain” behavior and mannerisms, but I recently had a review at work and I was told that my behavior was tending towards “grumpiness” and that I should be “happier.” I laughed (which I think startled my boss), and went on to explain that I really was happy with my job, and thoroughly enjoyed working there, but that a lot of times there just wasn’t enough processing power left to match facial expressions to emotions after dealing with the other environmental factors of the workplace: loud noise, chaos, enclosed spaces, random touching, people talking all at once, etc. And I said that I was doing my best, but that if I wasn’t smiling ALL THE TIME, it wasn’t because I was angry, but because I was overloaded. I also said that if he wanted to know if I was angry to just ask, not assume. I think he understood, and there hasn’t been anything more said, although coworkers say the same thing about me (“What’s wrong, Ashley? You’re not all smiley today.”) As if THEY are smiling all the time, anyways…

  2. I’m glad you included the write up of that ‘experiment.’ (Perhaps something similar or even longer should be required training for all institutional staff members… and especially for M Israel and the schmucks at JRC.)

    Also hope that you’re feeling a bit better than last time you wrote.

  3. “Psychiatry made me afraid and called that an improvement.” that line really hit me.
    When I was a teacher, I helped out on a committee to start a Charter School. All my life I had trouble in a typical educational setting, despite, or perhaps due to, being highly intelligent. I suggested that the projected population of the alternative program might contain “gifted” as well as “at-risk” kids. No one else on the committee got it. No,the district was purportedly serving gifted kids as it was. yeah. okay. if you say so. :(

  4. Yeah, one of the things we definitely remember distinctly from gifted education was people saying that “everyone’s weird here.” At times we ended up being too weird in the wrong ways, even for their standards, but… there was a lot of stuff going on like people repeating the same words over and over, eating/inhaling things you weren’t supposed to eat or inhale (one kid spent an art class sniffing some kind of glue until he got sick and had to be sent home), people banging their heads against walls, running around in circles until they collapsed on the floor, fondling themselves in public, and sometimes apparently just going out of their way to “act crazy” because they were now in an environment which condoned or at least ignored a lot of it.

    Another thing we remember is when we were 20 or 21, we ended up spending the weekend in a friend’s dorm room at Caltech, partly because there was nowhere else for us to stay, but also because we were curious to see what it was like. I’m not remembering many specific incidents now, but a lot of the people we met there also told us that “everyone here is weird,” and there was a lot of stuff we saw over those few days that definitely reminded us of the better parts of the time we’d spent in gifted ed. Actually, it almost seemed– from an admitted outsider’s perspective– that it was a “more ideal” version of that environment, since it *actually* seemed to be made up of reasonably mature people capable of cooperation and wasn’t hiding any nasty undercurrents of ostracism, cliquishness or bullying under the surface. (Again, this is from an outsider’s perspective, so it may be an overly idealized picture: I don’t know.)

    And at some indeterminate point after that, we ended up sunk into depression and crying because the “gifted” classification had fallen off us long ago and we knew we would never actually be at a place like Caltech or MIT, not as a student anyway, and we couldn’t stop imagining idealized versions of “what might have been.” There *were* places out there where people wouldn’t look at our behavior and judge us as deficient based on it, but we could never get to them– they were all for people who had skills we didn’t, and money we didn’t, by that time, too. (At the time we didn’t think of it as not having the right skills, we thought that things like overload and shutdown were us being “lazy and weak-willed” because that’s what we’d been told they were, even when we were curled up crying and hitting our head.) We didn’t know that there was such a thing as an autistic community, we didn’t even understand that the classification could apply to us at the time… I don’t mean to imply that that situation was unique to us, though; actually the opposite. I think there are a lot of people who end up feeling like they’re “standing with their noses pressed to the bakery window,” in situations like that, and it shouldn’t be that way.

    We actually, when we were in gifted ed, had a lot of inhibitions about doing certain “weird” things, but at that point it wasn’t because of psychiatry; it was because we’d been told by our family that we were lying and manipulating every time we did things like lie down when we “didn’t have a reason to be tired,” in places that weren’t beds, or squeal because we were happy or cry out in pain when we were hurt. If we saw other people doing a certain thing at school, we would often join in, because even if we got punished for it, we wouldn’t be singled out as somehow having worse motives than everyone else, but we were terrified that we’d be accused of lying, manipulating, and dramatizing if we did anything that looked too “odd” on our own.

    However, most of the other students at that school had definitely spent most of their time in environments in which all of those “weird things” were viewed as being just “attention-getting behavior” or “intelligent but strong-willed” or something.

  5. This reminds me so much of how grateful I’ve felt in times and places I’ve felt safe falling apart somewhere (in safe/quiet rooms set aside at student conferences I’ve been to, living in a house with other respectful conscious “crazy” people, a few other times) and how grateful I’ve been to be allowed leeway to be myself. I’m finding recently because my activism has moved into smaller scale organisations when it happens, groups which don’t necessarily have an organised disabled activist wing (and only really see access as a matter of whether there’s a ramp around), I’m avoiding meetings and stuff over the fact that I’m scared shitless of what’ll happen if I need to go somewhere and start shaking or sitting on the floor. It’s just not the sort of leeway that I’ve ever had in those sorts of spaces. Or any sorts of spaces really, except for around my fellow crazy geeks and in bigger organisations with an active and radical disabled group working within them.

  6. If gifted people behave bizarrely, like eating paper, that is regarded as an excusable, even endearing eccentricity of high intelligence; and they are presumed to know what they are doing. If people in mental institutions or mentally retarded people behave in the same way their behaviour is regarded as part of their mental illness, or that they do not know what they are doing.

    Bizarre, crazy behaviour is also acceptable in hippy, ‘alternative’ circles. I don’t mean caused by street drugs. It is also regarded as a sign of divine inspiration and possession by religious groups. While eccentric behaviour is almost expected among the British aristocracy.

    A few times when I’ve been overloaded at work, I’ve sat on the floor alone in a small store room and hidden behind a mass of empty cardboard boxes, and put them over my head.

    Your staff person had absolutely no right to report to your case manager that you were grumpy in the morning before breakfast. It is an intolerable invasion of your privacy.

    I want to read ‘The Lucifer Effect’ by Philip Zimbardo.

  7. I read this while eating an elastic band. :)

    I am not autistic, but I am categorized as both “gifted” and “special needs”. The second one was often ignored because of the first (the full story was told by my friend here, with a few unintentional omissions: http://parnassus.co.uk/?p=40 )
    I’m lucky tht the gifted label was stickier, though. I have been blessed to encounter tolerance which wouldn’t have happenned otherwise. And I would never have been able to regale total strangers with stories of purple vomit all over my tutor’s floor…

  8. Something else that came to mind while I was reading the responses:

    I’ve seen some people notice the similarities in behavior between students (or just people overall) labeled gifted, brilliant, etc, and people given more pathological labels, but then go on to draw the conclusions that

    “terms like Asperger’s and high-functioning autism are just labels used to pathologize the normal behavior of highly intelligent people,”

    and from there:

    “people given the labels of Asperger’s or high-functioning autism have nothing wrong with them, they’re just acting the way extremely intelligent people act, and if we left them alone instead of labeling them they’d go on to become brilliant scientists and etc.”

    And then the curebies bounce off of this and say “That’s right, people with the labels of Asperger’s and high-functioning autism don’t have real autism at all, and they don’t need help. They’re nothing like my child who can’t do x, y and z, and they should stop pretending that they speak for my child or are anything like my child.”

    And… that’s a bizarre distortion even from what we really saw in gifted education. Even among students who weren’t autistic, there were plenty who absolutely could not work in any kind of regular classroom– some of them actually seemed to have been put in there in the hopes that “well, maybe they’re doing badly because the work they’re getting is too easy for them and they’re not motivated to try, and they need something to challenge them,” whether that was true or not– and definitely did not fit the idea that if you just leave them alone they’ll all become Einstein. We knew non-autistic students who had just as much difficulty with schoolwork as we did, and ones who had problems with things like self-care skills too, and sensory issues. (In fact we ourselves were told for years by some people that the reason we had sensory issues was because we were ‘so smart.’)

    And we really have seen students being pathologized and labeled for being shy, bored with school, not liking school, reading “too much” or being “too interested” in subjects that weren’t thought appropriate for children of their age. This doesn’t mean that every single child (or adult) who receives those labels is simply “smart and bored” or “smart and badly-behaved” and needs absolutely no help other than being given more challenging work or more discipline or whatever and has nothing different about them otherwise, or that therefore those labels are completely bogus and have no validity to them whatsoever in every single case and just exist to unfairly pathologize kids who have nothing wrong with them. It’s not that simple, and it’s frustrating when people make it out to be, and even more frustrating when autistic people themselves get “high-functioning snobbery” and start insisting that their kind of autistics are all unique geniuses who should be left alone– which, even if it’s valid for the person saying it, when generalized to everyone with a certain label it just plays into the hands of the “you are nothing like my child” types and feeds their views. And that, in turn, sabotages the lives of autistics who have at one point or another been deemed “too high-functioning” for services even when they were desperately in need of them.

  9. I wrote at one point to an author of a novel about ‘gifted’ children.

    She at first tried to convince me that I was nothing like the children in the book she wrote. Then she became convinced I was like them, and decided I was “pathologizing giftedness” by believing I was autistic.

    I told her she was the one pathologizing autism, and that that was the problem.

    She believed me but only after seeing Temple Grandin speak (and I have no idea what about Temple Grandin changed her mind).

    I should note, also, that being in gifted programs was not the haven of being understood and accepted and everything that everyone was making it out to be (and that I was, of course, led to talk about it as). Far from it, I was usually too weird for the weirdos. But I can’t deny that there were things that were acceptable there that are not acceptable when people who are pathologized do the exact same things for the same reasons.

    Of course, the autistic community isn’t that haven either. I’ve found a disturbing tendency among people who do believe in such havens, to attempt to protect such ‘havens’ at the expense of people who could benefit from them but don’t fit into some narrow definition of who ‘should’ be there. Hence, at this point, trying not to promote such ideas.

  10. About ten years ago, I was on a few different psych meds and there was an OTC drug I took at the same time (ibuprofen, maybe, since Zoloft gave me headaches?). I was with Bridges then (they have gotten much better thankfully) and I live in my apt. which happens to be across the street from one of their group homes. I’m horrible at remembering to take meds, so they set up a program where they’d give me a pack of cigarettes (I smoke a pack a day) if I took my meds. I would either go there to get them or they’d come here; can’t remember just how that worked but one day when the staff person came to give me my meds, he handed me two bottles (the Zoloft and Cylert) and I had the ibuprofen in a prescription bottle, cause it was 600 mg. I took the pills, then accidentally handed him back the ibuprofen instead of the Zoloft. I realized my mistake, apologized, and handed him the proper bottle. He said it was okay, but he’d still have to write up the incident.

    Once, when I was in the group home (I was 17-18) – well, there were many incidents there, but this time I was in the staff office, just standing there, maybe looking at pics on the wall or something, and one of the staff came back, and accused me of reading the chart of another resident. I hadn’t been doing any such thing, but the staff wouldn’t listen, and I didn’t get to go to this weekend in Maine at my godfather’s house I went to every year. I was pissed, and I still get pissed thinking about it.

    It’s sometimes startling, the ways of being treated to which we become accustomed. I went from a school environment where you needed a teacher escort to go to the bathroom (though by my second year there they usually told me jut to go on), to college. I can remember hearing one student insult another and in the back of my head Fred, one of the teachers at my old school, yelled “Respect!” – since we had points taken off for different things, including respect.

    I really like the experiment excerpt you posted. I’ve often thought it would be great to implement something like that for new staff at Bridges, to give them a taste of what it’s like to be a resident in a group home (better than an institution, to be sure, but still far from ideal) – but so far the idea hasn’t caught on. I will keep trying because I think it’s that important.

    Tangentially, I find it sometimes very, very hard to spend any length of time in the group homes. I am poking at why this is. I think I have some ideas, however.

  11. Riel^Amorpha: there is, of course, no inherent contradiction in saying both that there is nothing wrong with us and that our needs differ from those of the majority. Leaving people alone is not the opposite of pathologizing them; it’s unfortunate that so many people don’t get that point.

    A very well written post Amanda :)

  12. Yes, that. Exactly, Amanda. Thank you.

    So far it’s been incredibly hard to talk to the higher up staffs – directors of programs, etc. about this – they don’t have much of a frame of reference for it, except to say that the institutions were awful, thank God we don’t warehouse people anymore. And to a point, they’re right – people like me get the CES program, and they are getting more proactive about getting others out in the community. One of the biggest challenges I have is that many of the people in the group homes are nonverbal, and I have tried to suggest that we do more with facilitated communication – in fact there is a woman who is at TASH now, or on her way back maybe, who was presenting on her use of her DynaVox. But I have been told she doesn’t like using it much, and when I had a conversation with the CES directors about maybe using FC for other people (and also with some reps from some state thing), they told me there had been problems with staff using FC to further their own agendas in the past – that must/may be part of the reason people were so skeptical that you typed your own thoughts, which I think is just ridiculous. Of course they’re your thoughts. But that is another barrier to be overcome, in my eyes.

    I, for one, am very interested in what the people in the group homes would say, if they were given the tools to communicate.

    That is part of what makes me sad, too It is assumed that people who are nonverbal either can not or do not want to communicate. I don’t believe that; I’ve seen too much to think otherwise. Maybe they would prefer nonverbal communication, and if that is the case, then all right, but there are some instances where it would be great for all involved if they could, for example, indicate that they don’t like a particular medication that they are made to take, or that they do not like going to x outing or don’t want to – it would save frustration for many people.

    Sorry for going off on a rant, if it was a rant; it’s just frustrating, sometimes.

  13. My daughter often needs to lie down for bried periods of time. When she was in public school they did not allow her to do this. I tried to explain how it helped her cope and they told me that if they let her do it all the kids would want to lay down. I was so frustrated.

  14. And just in case there’s any confusion (there might not be), FC is a particular way of accessing a communication device (or teaching someone to access it), whereas AAC in general (augmentative and alternative communication) is the word for just plain using a communication device in general.

  15. Amanda, another highly informative post –including the comments and dialgoue within them. And I appreciate your continuing to distinguish between FC and AAC. My son needs an AAC but he wilso need FC to be able to use it right now. People don’t seem to grasp the difference.

    I had to laugh at the morning grumpiness (not the fact that it “had” to be included in your file. God, I am the grumpiest bitch in the mornings and would be in serious trouble if someone had to document it all the time!

  16. God, I am the grumpiest bitch in the mornings and would be in serious trouble if someone had to document it all the time!

    Yeah. I’m grumpy before breakfast. My dad is grumpy before coffee. I think I know where I got it from. :-P

    I’m also grumpy when I’m pushing myself to or past what should be my limits, and the energy I use to do that makes everything else I do unnecessarily forceful.

  17. “Bizarre, crazy behaviour is also acceptable in hippy, ‘alternative’ circles.”

    Yes, to a certain extent. In the hippy/alternative circles i have moved in, there is a kind of intangible “acceptable level of bizarreness”, up to which odd behaviour is “cool”, but beyond which it becomes “scary”, “creepy” or “going too far” (sometimes “giving the scene a bad name”).

    Also, i have found that, in those kind of circles, a very high value is put on non-verbal communication and on “instinctive” understanding of other people’s feelings, and certain aspects of autism can be regarded as “self-limiting” or even “self-injurious” (although the terms used would be more pseudo-spiritual and less pseudo-medical, stuff like “bad for your soul” or “negative energy”). People within those scenes can also have a very patronising and disparaging attitude towards other people in those scenes who they consider to be less “together” than themselves (class and other categories of unexamined privilege, IMO, also strongly plays into that).

    Totally agreed on group homes being just a slightly more superficially pleasing form of institutions. The same regulations apply to them, in the UK at least, and it was working (briefly) as staff in one that led, at least in part, to my self-diagnosis as autistic. I was the only person there who actually seemed able to see things from the “residents”‘ point of view, or to instinctively identify with the “residents” and not with the other staff if any kind of conflict happened (and the conflicts were often over things so petty that no one who had not seen the inside of one of those places would have believed them – over whether someone could have a cup of tea instead of a cold drink with his dinner, for example…)

  18. Yes, to a certain extent. In the hippy/alternative circles i have moved in, there is a kind of intangible “acceptable level of bizarreness”, up to which odd behaviour is “cool”, but beyond which it becomes “scary”, “creepy” or “going too far” (sometimes “giving the scene a bad name”).

    Yes, exactly.

    I know some other auties have had different experiences, but when I for instance hung out with a ‘stoner’ crowd, I was only reluctantly accepted a lot of the time. Much of the time, in that case, I was either joked about or griped about. (Joked about == getting me high and then laughing at the fact that it was very easy to get me to jump out the window and run. Griped about == getting mad about my motor skills that made me incapable of handling some of the equipment required to get high, or about my reaction to the drugs which was very, very atypical and not at all resembling the relaxation everyone else experienced.)

    In other ‘weird’ circles, I was still ‘the crazy one’ or other things like that, and usually only marginally accepted if at all.

    The one long-term friend, in fact now my best friend, that I made at a summer camp for gifted students, saw me from a distance and asked who I was. The response was, “That’s Amanda. She’s crazy.” That’s how most people thought of me, even in groups of people where people were always saying stuff like “weird is good”. Apparently my kind of weird was too weird.

  19. I have reached the point where I judge an institution by how they react when I choose to sit on the floor. (I do it for reasons of chronic pain and because it is harder to fall down from the floor. Harder, not impossible. But with my history of falling off of lecutre hall chairs, ever little bit helps)

    Right now people pretty much let me be. This is why I like my job so much.

    I was in a graduate program where people saw sitting on the floor as a major crisis. They would say “Are you OK!?” and interupt class to comment on the fact that one of the members was sitting on the floor. In fact, I had to get special permission from my doctor before they even let me sit on the floor. There’s a reason most of the policies and procedures at that school and I did not agree with each other.

  20. I know some other auties have had different experiences, but when I for instance hung out with a ’stoner’ crowd, I was only reluctantly accepted a lot of the time.

    Yeah. That’s how it was for me as well. I didn’t realize it at first since I was used to being immediately shunned/mocked/etc., but a lot of what I initially perceived as “friendly” behaviour from the ‘stoner’ kids I encountered turned out to be…well, something else. I don’t even know what to call it, but it was sort of a weird combination of apathy and seeing me as a kind of funny specimen.

  21. “Leaving people alone is not the opposite of pathologizing them; it’s unfortunate that so many people don’t get that point.”

    They do seem to get it with gifted kids, from what I’ve read. But with disabled people any kind of assistance is construed as ‘treatment’. It’s impossible to *teach* a cognitively disabled person without it being viewed as treatment.

  22. Oh, and regarding the “sitting on the floor” thing — the floor is a perfectly acceptable flat surface, and it’s always rather confused me that it isn’t made better use of. I always used to sit on the floor at school during filmstrips and such — it was sort of funny because sometimes the other kids would make teasing comments about it, but then halfway through the film a whole bunch of them would be on the floor too (because it was often a lot easier to see the screen that way!)

    I sometimes think that one aspect of my being autistic is that I don’t seem to have a lot of “filters” with regard to what objects and environmental features are for (at least officially/culturally). I seem to “classify” objects differently than most nonautistic people do (though I’d guess there are probably exceptions, as with anything) — even as a kid, I never saw a firm dividing line between “toys” and “things that aren’t toys” (or between living room shelves and playground equipment, for that matter).

    Instead, I would map things mentally according to specific physical features they had (and what they could be used for), without running my perception of objects through some big cultural abstraction machine. So in my mind, the only reason NOT to sit on the floor (or ground) would be if the floor was uncomfortable. A surface is a surface!

    This is one of those phenomena that I imagine is pretty common in auties but that doesn’t seem to have a word or simple description associated with it.

  23. I didn’t realize it at first since I was used to being immediately shunned/mocked/etc., but a lot of what I initially perceived as “friendly” behaviour from the ’stoner’ kids I encountered turned out to be…well, something else. I don’t even know what to call it, but it was sort of a weird combination of apathy and seeing me as a kind of funny specimen.

    We experienced that with roleplayer/gamer types, actually– we thought initially, and had anticipated based on some of the things we’d heard about “AD&D people” before ever being around any, that they might be “the group that accepted us.” (Ironically, a lot of what we’d heard had a negative spin on it, but in our own thoughts we interpreted those negative things to mean that “these are all weird people who will accept other weird people.”)

    But… actually, we weren’t treated well by gamer groups; we were treated pretty nastily, but didn’t realize it at first. The only other people we actually got along with were people who were treated as outcasts in that subculture too. Usually they’d just make lots of nasty little dismissive comments at us, or ask questions that would leave us kind of stupefied because we couldn’t immediately come up with an answer to them, and then sort of gloat about having been able to shut us up or outsmart us. And it took us a while to realize that no, actually, these people weren’t being nice, they weren’t just being a little sarcastic; they really, honestly did not like us and were seeing us alternately as something pathetic and as an occasionally entertaining specimen (because of the ways in which we ‘acted crazy,’ which were not at all the same as the kinds of ‘crazy behavior’ accepted in that subculture, but we at the time didn’t realize just how different our behavior actually was).

    And then there were times when we honestly could not understand what we’d done wrong, because it seemed, as far as we could tell, to be in every way like what they were doing. If they wanted to lie down on the floor, it was one thing because they were doing it, but if we lay down on the floor, this was construed as an act of extreme rudeness and social ineptitude worth being lectured and banned from others’ houses for. They could intrude into each other’s conversations, but if we heard people talking about something that interested us and tried to make a comment to get into the conversation– again, we had been unconscionably rude and must never do that again. Their behavior was all above reproach, while our doing the same things (as far as we could tell) was attention-getting, showing no consideration for others, immature, disruptive, etc. (And there were also things like our misconstruing being told that they “acted out their characters” to mean that they would be all right with plurals, if we explained it as acting out characters too– but that was viewed by some people as annoying immature behavior, and by others as something to mess with our minds over, trying to see what they could get from us.)

  24. It’s been said that the only thing a nonconformist hates more than a conformist, is a nonconformist who doesn’t conform to the prevailing standards of nonconformity.

  25. This is one of those phenomena that I imagine is pretty common in auties but that doesn’t seem to have a word or simple description associated with it.

    I’ve heard Donna Williams describe it as part of what she calls the ‘system of sensing’, and included as an example, using a bathtub or a sink as a toilet because they can all be made of white porcelain and located in a bathroom.

    I don’t know what I’d call that phenomenon. But I do know that that’s part of the elusive category I’ve made myself of ‘ways I find people easier to relate to’ — that is, people who see things whatever way you see them and I see them in that regard.

  26. Odd how similar we are, Amanda!
    1. I was also subjected to a (lower-intensity) version of the “gifted/special needs” dichotomy.
    At the beginning of First grade, They gave us what they claimed were “aptitude tests”. I basically topped out the verbal/reading/general comprehension section of the test (by getting pretty much the highest score the test could do). Unfortunately for me, I also scored at “grade level” in mathematics. Now, notice something — in any other setting, my performance in math would have been considered “normal’, but in light of the “extreme” level of my reading and comprehension, it was then classified as a “deficit”. As a result, My whole school experience divided between three totally different “scenes”:
    The “Gifted” kids
    The “regular kids”
    And the “special ed.” kids.
    Now, none of those groups actually liked me very much. The “gifted” kids called me a “retard”, the “normal” kids just treated me like shit for no readily-evident reason, and the “special ed.” kids used to mistrust me because (unlike them) I actually got to spend a significant portion of my school days OUTSIDE of teh “remedial” setting.

    I quit during the tail end of 11th grade, and was able to piece togheter enough algebra and whatnot in two months time, to take — and pass – my GED. Then I went to college upstate for awhile, until I had to drop a course — long story — which voided out my student loan….)

    But the point is — my school experience left me very embittered and rather cynical about many things.
    It’s actually quite heartening to realize that I wasn’t the only one that this sort of bullshit happened to.

    Glad you’re doing better, by the way.

  27. Your mention of that hospital/patient experience reminded me of the Stanford Prison Experiment. If you don’t know about it, this site is awesome: http://www.prisonexp.org/ Even if you do know about it, you should still read the site. :)

    I have never belonged to any group except for college music majors. Around them, I don’t have to try to be anything that I’m not, because in the view of the world, they’re all “crazy.” And all different. And accepted for it. :)

  28. Stefan– yeah, several times we experienced having various “outcast” or “geeky” groups actually being just as nasty to those who “didn’t fit in” as the mainstream was. A lot of the people who were telling us “you don’t know how to have a conversation, you don’t know how to behave, you have no social skills, you did everything wrong, you can’t dress properly” did most of their socializing, themselves, in groups about which all those things are said by the mainstream– gamers, Star Trek fans, anime fans, etc. And in a lot of these groups, there were actually people who didn’t have “proper” conversations either by “normal” social standards, or had worse personal hygeine than us, or so on, but the criticism fell on us for some reason, sometimes to the degree where it seemed like they were making up excuses to criticize us or to kick us out of their groups.

    So, yeah– be different, but also be different according to a rigorous unwritten social code that’s even stricter than the mainstream one in some ways.

  29. AnneC – yes, me too – i definitely think that’s an autie thing… I’m always doing stuff like that – using a cushion off someone’s sofa as a pillow, using a duvet cover as a curtain, peeling potatoes with a knife instead of a peeler, etc… i basically see it as a more rational rather than custom-based approach to the uses of things, which fits very well with the general idea that one of the things autistic people are lacking is “instinct”, in the sense of “automatically” knowing what to do in a situation (the way most neurotypical people seem to in most situations from an autistic perspective), and so instead have to work out all new decisons “from scratch” by using logic and learnt principles… then, of course, we can learn “automatic” scripts to follow, but those things are typically learnt rather than instinctive…

    Amorpha – interesting. I have a few friends who are into role-playing games (both board-based stuff like Warhammer and live action role-playing), and, while i’m not into it myself, i always kind of envied the roleplaying society at uni because they seemed so accepting of difference (they had several visibly disabled members, one with a severe speech impediment, an inter-ethnic couple of a combination which was really not regarded as acceptable by a *lot* of people (and who had a child together despite both being students, which again was *way* out there for my uni), and generally seemed to really not care about how others perceived the clothes they wore, the way they spoke, etc). For my friend who is a trans woman, the roleplaying scene is, i think, just about the only social scene she has never encountered any transphobia in…

    However, i can see roleplaying circles developing a certain kind of conformity or “cultishness”, with people being seen as “undesirable” for either not taking it seriously enough, or taking it too seriously, and/or there being a disparaging attitude to either not knowing enough, or knowing “too much”, about the minutiae of the particular game involved. There seems to be a kind of split between “geeks who take their geekiness too seriously” (who tend to be seen as either pretentious, childish, or, again, “going too far” or “giving the scene a bad name”) and “geeks who like to take the piss out of their own geekiness and admit that the stuff they’re into has certain aspects that are a bit crap” (the circles my friends are in appear to be mainly the latter). Some people in those kinds of scenes can have a bit of a puritanical attitude towards drink/drugs and sexuality, as well, although the same can definitely be said of many autistic groups/communities… i tend to see no contradiction between geekiness and having a sensual/hedonistic side, but some do, it seems…

  30. On the first part: I would say something closer to that we often have different instincts than usual, rather than that we lack instinct altogether.

    On the second part: Hmm. I remember being taken by a friend’s brother into a LARP (or a group of people who were normally in a LARP together anyway, they weren’t doing any LARPing that day) once, and the moment we got in the door, everyone laughed at me, and not in an even remotely nice way either. No matter where I went in the room, everyone shut me out. When I tried to get by by imitating the actions of others around me (something that sort-of worked in some social situations), they just laughed in a “you’re so beneath us, don’t even try to be as cool as us” kind of way. So I just spent my time wishing I could disappear.

  31. Shiva, I’ve encountered a lot of transphobia in roleplaying circles. More of it around LARPers than people who play the more traditional tabletop games.

    Not too long ago, I lived with a handful of gamers, which turned out to be hell because they consistently treated me like crap.

  32. Lisa – I’m not saying it isn’t there at all – far from it, i’m *certain* that transphobia, homophobia and just about every other imaginable kind of phobia, just like disablism, are present to some extent in absolutely *every* imaginable social circle – i’m just saying that it’s the one place that my friend hasn’t encountered it. Then again, i don’t know how many people in that circle (apart from her partner and their mutual close friends, obviously) know she’s a trans woman, since visually she “passes” pretty easily, height excepted.

    This particular gaming scene is one mostly made up of postgrad students, which might make it quite different from ones which are composed primarily of, say, teenage boys…

    Amanda – I think there are some instincts which we (and “we” is quite arbitrary, because obviously there’s huge variation between autistics as well) have the same as NTs, and some which we have but in a somewhat different form, but i think that in certain spheres there are instincts which Nts have but which (some/many) autistics lack altogether. Maybe there are instincts that autistics have but NTs don’t have, too… but i think that, in general, autistic people tend to have to “think things through” fully that NTs are capable of doing automatically, which can lead to a more open-mindedly rational, less presumption-based approach to, for example, the functions of things…

    Dammit, it seems like every time i comment on someone else’s blog, it develops into something i need to expand into a full blog post… ;)

  33. I know an autistic woman who is really into live action role-play.

    I guess there are autistics who design role-playing games and have acquired encyclopedic information about them.

  34. I’ve always tended to know at least a few people who are into the whole roleplaying thing…and they’ve pretty much been as diverse as any other group of people who share a common interest. Which is to say that some have been perfectly nice/accepting, while others have been utter jerks.

    I think the point of all this is that you can’t ever really just assume that any group of “outcasts from the mainstream” is going to consist entirely of people who would never bully anyone else. People need to be aware of their own potential to act cruelly toward others or else they’re going to have a hard time recognizing and avoiding actions that could lead them in that direction.

    Pretty much all the worst abuse I’ve ever experienced has come from people who claimed not to see themselves as “that type of person”.

  35. Zimbardo’s book “The Lucifer Effect” compares the Stanford Prison Experiment with the abuses of detainees at Abu Ghraib & Guantanamo Bay. Zimbardo co-created The Stanford Prison Experiment-having learned relevant lessons from that (he freely admits now that some lessons he was slow to realize), he was intrigued by parallels with institutional policies’ (incl, those which are informal/unwritten/unintended) influence on subsequent events. His take seems to be that setting (environment-which consists of many variables) can corrupt individuals, and he discusses the conditions that promote mistreatment & dehumanization. People (at least publicly) act as if depravity, cruelty, and ruthlessness are so abnormal, uncommon, foreign, and unnatural.
    Sorry to go off on tangent-wanted to directly connect the dots between the book excerpt in original post & the comment referring to SPE.

    Have read (and enjoyed-if that’s the right word for such depressing material) author’s “Lucifer Effect”, “The Past and Future of U.S. Prison Policy: 25 Years After the SPE”-and especially “Discontinuity Theory: Cognitive and Social Searches for Rationality and Normality-May Lead to Madness”. Discontinuity theory experiment really caught my interest, and was about induced cognitive dissonance leading to paranoia. That theory explains a lot to me about how I experience/interpret things & also seems similar to how people react to those who defy stereotypes, violate expectations, and towards phenomena they don’t understand. Fascinating stuff.

  36. wow. you all write tons……almost too much to digest all at once. but this material is definitely worth the extra brain effort….

    Belfast: yes, this is indeed fascinating stuff.

    As for being too weird for the weirdos……..it’s all relative. Everyone must be slightly mad to stay alive for very long in this world……going anathema to your basic needs and desires in an institution is mad but very necessary for survival, as many have written about here. I had to make something come out. Even if these words are only an approximation.

    This hostility and discrimination and labeling “weird, insane, mental, crazy” and other nonsense is what we really need to be rescued from. Better yet, it’s what we have to rescue ourselves and future generations of “social misfits” from. I think of so many faces……unhappy miserable faces of people stuck in those horrid places. I cry under my covers. Ivan wishes he could go and get them out by force. He knows better though. One extremist can undermine an entire movement.

    Athena.

  37. Just the other day, I sat under a desk during Animation class (where many of us relax instead of working, at least for some of the time), and the nurse and someone else got brought in. I expressed my confusion at why they were treating me like I was sick instead of just tired (class hadn’t technically started yet, and this is a laid-back, work-at-your-own-pace environment).

    Whereas, in my writing classes, many people lie down or sit in unusual places, and that’s just business as usual. I thought that, due to the nature of the class, that they would be similarly permissive. This isn’t like government or marine science, where the class is more or less structured, and it was during the announcements, when everyone just talks and you can’t hear them anyway.

    My parents were even called, and my dad acted like he was concerned. I was very perplexed of the whole thing.

  38. In fact, in my observations over the last few months, I very often see people in animation class sleeping under desks, lying down, socializing and the like. But nobody notices for them. Today a psychologist was talking to my mom and described me over the last few years as “degrading”.

    No, that’s just me getting over some traumatic stress from junior high school and being more open about who I am, and I am not afraid to talk about autism, which even just a year ago I was extremely hesitent, and didn’t like to. In fact, in the last four years, I have overall gained more abilities, but because I am going to be independent in college there is more expected, which makes it more apparent, and that combined with the fact that I don’t suppress my stimming like I used to. Not to mention the stress of having to deal with these people.

  39. I can`t imagine living life with people making regular reports on my behavior especially noting when I`m grumpy. It seems to me that morning grumpiness is nothing unusual at all. Most people are grumpy when they are tired, hungry, having a bad day, etc. It`s not pleasant to be around but it`s not unusual either. I think just as bad as reporting it is the fact that the case manager even gave it a second thought. If someone reported to me my husband was grumpy in the morning, I`d wonder why they were telling me such a thing. It would seem rather odd to me to get such a report. This is the sort of thing people just brush off and accept. If a person is really grumpy someone might comment, “you got up on the wrong side of the bed this morning”, but that would be it. What I want to say is, taking notes and reporting is the odd and unacceptable behavior. I can`t imagine life like that. It should not be!

  40. Pingback: International Day of Mourning and Remembrance: Institutionalized Lives of People with Disabilities–Forgotten Lives and the Ones Who Fight Back « We Can Do

  41. In another hospital, in another country, in another world, the local psychiatric hospital is one of the few places where I feel safe to “act crazy” (scream while throwing stuff around, rock back and forth…). Reading your blog makes me realize how lucky I am.
    (In case you wonder, I found this post by following a link from Andrea Shettle’s post at Can Do for the International Day of Mourning and Memory, http://wecando.wordpress.com/2012/01/23/institutionalized-lives/ )

    • I was really uncomfortable with this comment and I’ve been thinking about it sense you left it because I wasn’t sure why it bothered me so much.

      There are probably people who could say the same thing about the “local psychiatric hospital” that I was held in. One thing to think about is that even though it may have been mainly positive for you (assuming you’re not having a stockholm syndrome-type reaction), it probably wasn’t that way for everyone who was there. If you were in an institutional environment were people were held involuntarily, the stuff Amanda Baggs is saying still applies.

      Also, how was it positive? What positive things did it accomplish? I mean this as a rhetorical question to make a point: Could those things being accomplished in another way?

      One positive thing that was accomplished at the place that I was held was removing adolescent girls from abusive and dangerous home environments for at least a few days (incidentally, this was less time than they would hold ME, even though I was coming from a much safer and more open environment than the institution, when most of the girls weren’t). They were able to connect with some people and resources they might not have otherwise been able to. This was generally after a suicide attempt, so it was when things had really reached a breaking point for them and something needed to change. Creating those resources is important.

      So… are quiet rooms, forced drugging, restraints, extremely regimented lives, etc necessary to get support to girls who are living in abusive and unsafe environments? Are those things necessary to create a safe spot for people in general? If those girls don’t have a better option than the local psychiatric hospital, that’s not because a psychiatric hospital is actually a good or effective way of doing it.

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