Bright blue his jacket was, and his boots were yellow.


Tom Bombadil was a Tolkien character who appeared pretty close to invincible in the setting the other characters encountered him. But he refused to stray past a certain set of boundaries that nobody knew except him. The evil ring the story was named after had no power over him, but could not be left with him for safekeeping because “…if he were given the ring he would soon forget it, or most likely throw it away. Such things have no hold on his mind.”

Axinar was talking about what he sees as different subtypes of autism, and said:

Of course Ballastexistenz herself has illustrated, at least to me, that this Autism Spectrum may have at least two dimensions.

You see, reading through Ballastexistenz blog it would appear that her cognitive abilities are almost completely unaffected. In some ways, in terms of her ability to observe and process information, she’s in better shape than my dad.

my Second Life avatar dressed as Tom Bombadil

And it dawned on me, one reason that I always have trouble when autistic people are split up into types by this kind of thing: Usually the different typings, presumed to be mutually exclusive, apply to me at different times in my life. So if you ask me to split autistic people up into subtypes, you’re asking me to split myself in half, and to split a number of other people in half as well. Because a lot of these so-called subtypes are not, as far as I can tell, about underlying brain organization, as much as about what the person’s doing with that brain at any particular point in time.

When I was a school-age child (but not before and not after), my thinking often appeared very inflexible and rigid. This was not because my thinking is just naturally that way. This was because the kind of thinking I was trying to use was outside of my natural areas of competence. I managed for a time on sheer brute force, and the strength of that brute force created the apparent rigidity (as well as the moodiness, low frustration tolerance, coming home from school and screaming and crying all night, etc). The kind of thinking I was being expected to use, was the kind that requires stacking blocks on top of blocks and remembering where you put all the blocks in order to avoid knocking them all over. This is not sustainable, eventually they all fall down.

And when they all finally fell down, the rigidity in my thinking was almost gone. I was of course still grasping at those blocks, at random sometimes, producing some fairly scrambled-looking results. But I could not sustain it enough to sustain the kind of rigidity that held them together in the first place.

If I am pushed to engage in that more difficult kind of thinking, even today, I will suddenly appear rigid, black and white, and every other stereotype in the book about autistic thinking, few of which actually apply to me in daily life. It comes from the force of trying to hold foreign ideas together in what amounts to a foreign cognitive language, and watching them all slip away as rapidly as I can put them up. The easiest way to do this to me, is to make me do intellectual work to a deadline. I might get it done, but I become rigid, explosive, self-injurious, and so forth, along the way, and then everything shuts down for a long time afterwards. For those who think that blogging means I could hold a writing job, there’s your answer. When my staff hear I’m writing to a deadline, they give me a wide berth. This is also one reason why I don’t present at conferences more often than I do. You can also get the same reaction out of me by expecting me to perform intellectual tasks in an unfamiliar environment. (Note that for me, “intellectual tasks” start at the level of recognizing the typical identities and functions given to objects,and then work their way up from there.)

But on my own ground, I’m incredibly competent. What people don’t see, is the fact that I rarely stray off that ground. (That ground, by the way, contrary to Axinar’s statement, is far from being unaffected by autism. My way of thinking is in fact a very autistic one. But “autistic” does not mean a certain stereotype.)

About seven years ago, I was given a bunch of extra equipment for my (still) camera — a nice telephoto lens, a flashbulb, and a light meter. It made no sense to me, it was a jumble of chaos, and after a bunch of frustrating sensory explorations of the equipment I put it all in a box and forgot about it.

I opened the box two days ago. I could instantly mount and use every single piece of equipment that baffled me seven years ago.

I can’t even count the amount of books I have poured into my eyeballs without always understanding them. I could read a book and be unable to answer questions about it right afterwards. But given enough time, the information sinks in somewhere, because it’s there when it’s called up some other time.

This is the territory I operate best on, the very non-foreign cognitive territory that allows me to do all the things that seem to impress people overmuch. But it’s also the territory that gets the least respect for what it is. People see me operating well on this territory, and they want, expect, and sometimes demand me to step over into a kind of cognitive territory that, if I did, would result in a short blast of achievement (if anything is achieved at all, which isn’t always) followed by weeks of burnout and shutdown.

They see the extent of my triggered knowledge and expect me to answer questions that don’t trigger that knowledge, they see the gracefulness of my climbing and expect me not to fall on my face while walking, they see how detailed a triggered memory can be and expect me to call up non-triggered memories on command, they see how well I learn when the material is given and then allowed to percolate and expect me to learn well while they forcefully cram information into the parts of my head least equipped to process it.

I was in a room full of people with intellectual disabilities recently. We were all given a form to fill out. Some of them had trouble reading the form, but could answer the questions once they understood them. I could read the form at a glance, but I could not answer the questions (like “Why are you here today?”). Guess which one of us was more confusing to the staff.

Someone replied to my video making it sound as if I have simply not been pressured enough, that if I were pressured enough, I would give up the activities I am good at, and somehow gain all sorts of abilities I’m not so good at. That’s not how it works. I don’t learn through pressure. Excess pressure in fact may have created the burnout of a lot of those things that I wasn’t so good at to begin with, but now can barely use for any length of time at all. The more pressure you put me under, the less I can do, understand, and learn.

I can say, that if I were forced to move into that foreign territory (and if I were even capable of sustaining life there, which I’m not), I would look less intellectually competent, more rigid, more black and white in my assessment of the world, and like I was missing a lot more information about the world. And I would be thus classified into a different “type of autism”, when really all that’s happened to change me from that “rigid-thinking type” into the “type” I am now, is I’ve become much more efficient at staying within my own territory, and much less able to stay within foreign territory.

I suspect much “rigid thinking” among auties (when it’s actually rigid and not just thought to be) is actually an artifact of trying to brute-force thinking with cognitive equipment that isn’t what they’d be most skilled at, rather than a fixed trait of the autistic mind. Sort of a by-product of mental overclocking.

I’ve also noticed, in the changing-over-time department, autistic people who describe thinking like me (as I think now), and then they describe that as a way they used to think. In some cases they view it as something they were glad to discard, in others as something they wish they could get back to but can’t. And now they are way more at home than I am in the kind of thinking I’m not so good at, even though in the past they weren’t. Some so at home that they cannot conceive of understanding something without words, for instance, despite the fact that many of them had a time period when their best understanding of things was largely or entirely wordless. The changes happen in more than one direction.

Meanwhile, I still do best, like Bombadil, in my own territory, even if nobody else knows quite where the boundaries are, and even if the boundaries shift a little every day. But a lot of people who interact with me treat me as if I don’t know what I’m doing, as if they in fact know what’s best for me, and that if I don’t go along with what they’re expecting of me, then I’m either stubbornly refusing to do what is good for me or unaware of what is good for me. The idea that I already have a better idea of what’s good and bad for me than most people, doesn’t cross their mind, nor does the idea that I’m more able to do things overall if they’re done the way I think best, not some other way.

Basically, put the information there, let it come out on its own time. That’s how I best accomplish things — the results are higher-quality, too, than if I’m forced to do it some other way. So even if the way I do (and don’t do) things doesn’t seem to have any rhyme or reason to it, even if you can’t see the boundaries of my abilities, it’d be best to respect that I probably know more about them than you do.

…of course nobody’s ever figured out Tom Bombadil either, despite years of ridiculously complex analysis on lots of people’s parts.

Tom’s own response to being asked who he was: “Don’t you know my name yet? That’s the only answer. Tell me, who are you, alone, yourself, and nameless?”


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. 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 in 2014 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.

29 responses »

  1. “The Scouring of the Shire” and the Tom Bombadil narrative are the two major pieces missing from the otherwise great movie version of LOTR. Though I’m not sure Bombadil could ever really be well-portrayed except in a book.

  2. Yeah. Bombadil would be difficult, but he’s left out of everything, and that’s annoying too. Although it would be difficult to put into movie form, the way the entire rhythm of the text in the book changes to match (some times more than others, but it’s definitely there) the way Tom talks. I don’t know how you’d accomplish that on video.

    Of course, I wasn’t sure if they could pull off Ents, either, and they managed, although I wish they had not messed with the plot in that section.

    But I really like Bombadil, particularly the way he gets things done, where he’s kind of running around seemingly aimlessly and looking even a bit frivolous and dancing around and singing and so forth but everything gets accomplished. That’s so much how I do things.

  3. And how many of my students “read” books and come to class and don’t seem to recall too much…..

    Thanks for this, especially your noting of your thinking as a child.

  4. When I was at school I thought I was hopeless at maths. I couldn’t use a protractor or a compass, multiplication and division baffled me, everything seemed too confusing. Perhaps oddly I did (and still do) have a fascination with numbers and counting. When I left school the constraints on learning in a particular way were removed from me and when I had to work something out I thought of it in a different way, a way that was completely different to what I had been taught but which worked for me. I still can’t use a protractor or a compass, but I can work my way through a lot more multiplication, division, addition and subtraction than when someone was trying to get me to do it in a way I couldn’t comprehend.

  5. Well, not necessarily “split into types” … but possessing of an incredibly wide array of features.

    For instance, yes, obviously when pressed into novel situations your stress level increases tremendously and your apparent “competence level” decreases noticeably, however, I cannot help but notice at least some desire to ATTEMPT some new things from time to time.

    Again, in contract to my Dad, who, by most assessments people would consider to have a mild to moderate case of Asperger’s … he would NEVER attempt to even get on a discussion board, much less try to produce videos?


    Well, one – and you’ll love this – he sprained his wrist with the old-fashioned Atari joysticks about 20 years ago and now he has an extreme level of fear of ANYTHING that looks like a computer.

    And then, about 16 years ago I tried to get him involved with a Veterans’ board on the old Tri-State Online and he refused to sign the “indemnify and hold harmless” clause of the user agreement.

    As for employability – yes, I presume you have figured out by now, as I have, that nobody gives a flip whether or not you can write. Nobody gives a flip whether or not you are intelligent. All they care about is whether or not you look a certain way and your know how to trowel out the bull cookies.

    And, as for being a member of a group that doesn’t fit the “image” of an “ideal” employee, you have MUCH more company than you might think … :)

  6. My first time here. I am ignorant. I am suprised and amazed ( from watching your video’s) that you actully do all this typing and that these are your thoughts. A part of me can’t help but think that this is all made up. But then the other part shames myself and asks why I think such things? You actully seem highly intelligent .. more than I of course. And if your so intelligent..I don’t understand how you can’t .. I don’t know. I’m not making sense. What would blow me away is if I see a video of you typing the words out.. and see the screen as its being typed out. But who am I.. to make you prove yourself to me? Forgive me. I will come back and learn more from you. I’m very intrested.


  7. Axinar, I still don’t know if you understood the post. I did not mean “my apparent competence level decreases etc under overload”. I meant, I used to do all those “rigid” things all the time because I was using a cognitive mode that I was not native to, and I was trying to use it as full-time as I could, and the rigidity was from the force of that combined with the confusion that entailed.

    I don’t use that cognitive mode nearly as much anymore. I’m saying the categories are more fluid than you might think, because I used to be like that, and now I’m not, and not because I’ve gotten “less autistic,” but if anything, the opposite, because I for the most part discarded a “less autistic” (and therefore less feasible for me) thought process. My theory was that maybe a lot of the so-called “autistic thinking” (in the stereotype) comes from autistic people trying really hard to think in ways that are not easy or native to them.

  8. I tried to show the screen as I was typing on a previous video, but it was hard, because I have to set the camera on something, and then go get it, I don’t have any good spots to set the camera that are both in view of the keyboard and the screen, although I could try again.

    As far as life skills appearing to lag behind intellect (by non-disabled standards), that’s a very common thing for autistic people, it has to do with exactly how our cognition works. (i.e. even when we seem to get the same product, we’re not going by the same process)

  9. Meanwhile, I still do best, like Bombadil, in my own territory

    I find something enormously satisfying in that formulation. I want to claim it for my use.

    I’ve confounded people for years by just this competence on my own territory, and inability to venture beyond its bounds. They see a bright, background-educated, not *that-obtrusively weird person with good grammar and an enormous vocabulary, and think I should be articulate. So when I’m mute, or all I can say [write] is something so tangentially connected to what they think I should be saying – or, as you say, when I’m faced with a simple form and can’t answer the questions -, they’re baffled. (AFAIK, no-one’s ever perceived that I can have conversations without understanding either what’s being said to me or what I’m saying back – I dont think one’s ‘supposed’ to be able to do that.) And come up with the most preposterous motives for whatever they suppose I’m doing.

  10. OK, so I’m rigidly blue and yellow in my thinking, why don’t you have yellow boots in the picture? :-)

    Someday people might be able to conceive of a person who looks like Ballastexistenz and has her skills (up and down and off center as they are), right now it seems like folks would rather believe that a dog or cat is the one who is writing for Ballastexistenz (do you mind if I shorten it to B’stenz?). In fact sometimes a cat does write for B’stenz, but we can’t share that yet because so many people wouldn’t believe it. :-)

    Baby steps, people. This is blog and this person are quite genuine. If you need a little more brain expansion try getting a DVD of “Autism is a World”… Sue Rubin is not as aware of disability rights as B’stenz is but at least there’s another person who is packaged so differently and thinks such surprisingly “human” thoughts.

  11. Would it help to get a tripod for your web cam? (Okay, I know nothing about web cams, but I assume there’s a way to attach them to a tripod). That would at least give you more flexibility about where to set it down.

    I agree that you shouldn’t have to keep “proving” yourself over and over. I’m sure it must get infruiating for you when people express skepticism. You certainly don’t need to do it for my sake. And of course you would be very much within your writes to tell every body who refuses to believe that it’s really YOU who does all this writing to just buzz off and believe what they like.

    A bit about me: I’m a neurotypical who just discovered your blog a few days ago but have read quite a lot of it already … even though I really SHOULD be doing homework for class instead :-) ). As a deaf person, I know probably better than most hearing neurotypicals that a person certainly doesn’t need to be able to speak in order to have a brain. (Although I speak, I also use ASL, and of course I know plenty of deaf people who just don’t use speech as their mode of communication.) And even though I’m very verbal (in written English), I’ve been conscious from an early age that sometimes, even when I happen to be thinking in words, I’ll sense something else in my brain that starts formulating and organizing the thoughts I want before I figure out the words to wrap around it. In fact, I have sometimes thought I’m a better writer BECAUSE I fit my words to my thoughts instead of the other way around.

    As a deaf person who writes well, I also have experienced being a “pioneer” all my life: I was usually the first deaf student most of my teachers ever had, the first deaf student at my mainstreamed high school to take honors level English (though not the last), yada yada, and the only deaf person in my office. And that can sometimes get a little tiresome for me, so I can imagine that it might also get tiresome for you, especially since in some ways you’re an even bigger “pioneer” in being one of the few autistic people out there at the moment who are able to express themselves so ably and eloquently about the experiences of being autistic, being confined to an institution, being forced to conform your thinking patterns in ways that aren’t natural for you, and all the rest. I see a lot of parents leaving their comments throughout your blog pages, so I know that parents are looking at you then looking at their kids and (I hope) adapting the way they raise them accordingly. And if you do find a way to set up a camera in a better filming position so it can capture you typing and the words appearing on the screen (in a readable format) at the same time, and if that could help tear down one more wall of denial that helps a parent, teacher, future doctor, “expert,” whoever realize that “not speaking” certainly doesn’t mean having “nothing to say” (like it says on your t-shirt on “get the truth out”) … then that might help one more autistic child not have to go through some of the things that were done to you when you were growing up.

    Sorry for all my long run-on rambling sentences. I swear I write more coherently than this in my job! Hope this made sense.

  12. I am not autistic, but a lot of what you say in this post really speaks to me and my experience. I’m often told I have an amazing memory, but if ordered to memorize something, I shut down. If given a project and a wide berth in terms of how to do it and how long it can take, I’ll get it done and done well; if a deadline is imposed, I shut down. The ‘rigid thinking’ that comes from following an unnatural thought process in order to meet the expectations of others was also immediately familiar to me.

    You say “The more pressure you put me under, the less I can do, understand, and learn.” This is certainly true for me, and no doubt for a great many other non-autistic people. I often say that I’m an auto-didact, but it’s closer to the truth to say that I just can’t stand structured classroom learning. Books always move at my own pace, be it fast, slow, or scattered jumps back and forth between sections.

    Is there much creedence given to the idea that we’re all on a spectrum of some sort, that being autistic is not a yes/no proposition, and that many so-called normal people have ‘bits of autism’ within us?

  13. I have a fairly intelligent friend who was incapable of learning math by any method used by her schools as she was growing up. She flunked Algebra I at least twice, very much hung up on a couple of basic concepts.

    Years later, someone spent less than an hour using another technique to demonstrate how to accomplish what they’d been trying to teach her, and she understood immediately.

    The standard mode of educating people just doesn’t work at all for some folks, and for some, it isn’t really working, but they’re using other resources to achieve the learning required in the timeframe required. (I did horribly at some things until they were broken down into smaller steps, and then I was able to understand how to do them well. And I certainly have tested as being fairly intelligent.)

    At this point, I’m in my late 30s, have 3 kids, and am still in the process of figuring out what I’m good at, what I’m not, how to deal wiht the areas I’m not good in when the situation demands it (that’s one thing that being a parent will get you!), how to ask for the help I need in a way that I’ll get what I need. And understanding that some of my skills are not consistent, and figuring out what I can do well from one week to the next, and what would be better avoided if I can. (For example, I got better at cooking again sometime last month. I’ve been making big batches of things I can make in big batches and freezing the extra against the time I can’t cook so well and my husband is on a work deadline and unable to help as much with cooking. For another example, my language skills are somewhat erratic — not that I’m ever really bad at text-based communication, but it comes a lot easier sometimes than at other times, and speaking ability is widely variable, along with how much stress getting something out causes between one month and another.)

    I see with my children that information can be presented and nothing can be done with it immediately, but it’s usable a week later (my turnaround is usually quicker, but sometimes it’ll take a month for me to fully process something), and that’s not an unreasonable way to learn. If I need to homeschool any of them later because of that, I will, but I hope that at least in elementary school, I can push the system to accomodate them rather than pushing them to accomodate the system.

  14. I have read so much of your blog since first seeing your “In My Own Language” video – your words have had great impact on me, and changed me in a very positive way. I have a daughter who has Down syndrome, and is most likely autistic as well. She is an observer of her world more often than she is a participant, but I have always known that she has great lessons to teach me. I can see the way she learns and the way she absorbs information; tucking it away to process it at a later time. Thank you so much for giving my intuition as a Mother validity with her – she is a spectacular child.

    May I have your permission to use the quote below in my blog? I found it on one of your pages as I was reading, and it is so very true. I’d like to share it with those who read my writing as well. The quote is:

    “Whether or not we acquire certain skills does not determine our happiness. Otherwise I would be much more unhappy about who I am, and some people I know who fit a much more “functional” stereotype would be much more happy about who they are.”

    Thank you so much,


  15. Ms. Clark: The boots are yellow, it’s just the lighting (and I need to get them a brighter yellow).

    miconian: I’m not sure if it says that, or just that there are far more than two forms of neural organization in the world.

    Axinar: (Not printing either of your two comments because wasn’t sure if you wanted me to after you wrote them both.) Yes, I’m the person who used to piss in my front yard. :-P

  16. In browsing around your blog site some more, I came across one you wrote in July ’05 ( entitled “Defining Autistic Lives”) in which you wrote about how sometimes you get triggered into “cute client mode” and then, instead of realizing that you are actually sickened by your own giggling, your staff ends up infantilizing you further.

    Hope it’s okay that I’m commenting on this here instead of there — since this post was a year and a half ago I wasn’t sure if you would see my comment there. (If you do look at ancient posts now and then let me know and I’ll reply in the correct location next time.) But your story reminds me of a story I heard from a social worker who used to work with clients who have mental retardation. He saw something similar with one of his clients — with the social worker, he behaved as a mature adult, but when the social worker’s supervisor started talking to him in an infantilized way it triggered giggling, seemingly child-like behavior

    So it’s not only (some) autistics who get triggered in this way but also at least some NTs (including, but I would guess not necessarily limited to, NTs who happen to have mental retardation). I’ve never met the client and know nothing else about him except for the one story I present here so I can’t really guess what was going on in his head during this incident, but I wonder now how he actually felt at the time that he was giggling.

    Of course I don’t have the answers for exactly why some people (autistic or not, with mental retardation or not) sometimes get triggered into giggling or other unintended behavior. I have only conjecture. You mention the idea that perhaps your “cute-client mode” is something you might have subconsciously evolved as a survival mechanism while you were institutionalized. That same thought occurred to me about mid way through your post, before I got to the part where you raised it yourself. It does seem like a plausible explanation: I would guess that it would be a natural survival instinct for many people who find themselves in a situation they cannot control to escape harm by making themselves appear less “threatening” to people in power. And making yourself come across as more “innocent” and cheerfully “child-like” than you actually are would certainly be an effective approach in many situations. (I’ve been fortunate in that I’ve never experienced something nearly so oppressive as your experiences. So I’m going on suppositions here.)

    Another thought that occurs to me is: Sometimes people giggle as a way of relieving embarassment, nervousness or other uncomfortable feelings. (At least this is true for NT people … you can tell me if you think it’s the same for autistic people, or at least if it’s the same for you and the individual autistic people who you happen to know fairly well.) So one conjecture I have to offer is that perhaps you were already feeling embarassed or anxious about your behavior (in running around, screaming etc) … then when your staff person helped you stop, it felt like you were being “called” on your behavior, (i.e., increased your self-consciousness about it) which triggered the giggling. Does that sound plausible at all, at least for your own personal experience with this? (Of course, don’t answer this if you don’t want to.)

    Unfortunately, most NTs do have a tendency to instinctively respond to the surface body language: when NTs see giggling, most NTs think this signifies happiness or giddiness. It takes a brain that is wired in a certain way (or specialized training, as for therapists, or at least more exposure to how psychology really works) for an NT to realize that sometimes what shows on the surface is really just a cover for something else going on within a person. Even then, it takes a certain amount of insight, maturity and experience to figure out when the surface reaction and the internal reaction are most likely to be in conflict. And further insight, maturity, and experience to respond to the person’s actual mood instead of their surface body language.

    Add to this the usual denseness that most of us NTs have in correctly interpreting the body language of autistics in general, and compound that further by the silly but deeply ingrained notion that so many hearing, speaking NTs have that not speaking equates being more child-like, and you have a recipe for someone who will fail to realize that someone’s giggling may be involuntary, or that infantilizing them further will not help. Or even if they do recognize this at an intellectual level, they might find that they themselves are involuntarily “triggered” into reactions they don’t intend so instantly and unexpectedly that the episode is over before they’re able to catch themselves and figure out how to respond another way.

    Then once it’s done, they may be embarrassed by both your external behavior and their own reaction to it, so they never bring it up–they just push it aside and hope that you and they will forget it.

    Of course, none of this is to excuse or justify this response. IF they’re aware that your involuntary “cute-client mode” is something that sickens you then they properly OUGHT to address that with you — and, particularly, their own role in inadvertently triggering it and then inadvertently reinforcing it. If it were me working with a client who sometimes went into “cute-client mode” — but ESPECIALLY now that you’ve helped me be a little better sensitized to how it can feel from the client’s perspective (at least for you, but it makes sense that at least some others would feel the same way in the same position) — then I would raise it for discussion with the client at some point when the client was in a calmer mood. I would check in with them how they feel when they’re in that mode and ask if there’s anything I could be doing differently to help them avoid getting triggered into “cute client mode” (asides from treating them as an adult even when their surface body language doesn’t necessarily come across that way). But I’m not likely to end up in that kind of position (I’m a writer in a field that has nothing whatsoever to do with autism).

    Reading your story makes me kind of wish I could put you together with the social worker who shared the story above about his client. Or that there was a way to otherwise get you with workers who know how to treat you with the respect and dignity you so richly deserve –and, from the sound of it, get far too rarely.

  17. Andrea: No, it’s not embarrassment or nervous laughter. Go elsewhere in my posts for my discussion of the Dead Hamster Laugh, but it’s not that either.

    Most of the things I write about in this blog are not meant only to be about autistic people, I think my reputation as an “autism blogger” means people take them as intended that way when they’re not.

  18. Amanda, I really enjoy your blog.
    Please help me understand – you can write all of this, at such high cognitive levels, but you can’t understand how to not go in cars with strangers or to bathe yourself or to eat regularly? How can that be? I am sincerely asking, and not being nasty at all.

  19. About the things that mix into your brain, and then get spit out years later… yeah. We’ve had that, a lot. In fact, that’s been one of our problems with a lot of classes, like someone mentioned with math above– something sat in there for years re-scrambling itself into something that actually formed patterns for us, and then suddenly seemed to spit out all at once.

    Sometimes I think it would just be, in some ways, easier if we did not have the rudiments of certain skills that we did (i.e. sometimes being able to work to deadlines, just incredibly randomly). Because we do, and because people have seen us demonstrate those rudiments (even if at cost to ourselves that they never saw), everyone’s ‘official’ story on us is that “she can really do it if she tries.” If we could never demonstrate them for others at all… well, I don’t know whether it would be worse for people to assume we didn’t have certain skills we did, on the basis of lacking others, or be breathing down our neck constantly telling us that when we don’t succeed it’s due to some moral failing because we “clearly” have “all the necessary skills.”

    I noticed in retrospect, also, that we had a lot more “rigid thinking” when we were trying to hold the kinds of “mental widgets” that you mentioned a few posts back, when our cognition wasn’t naturally inclined in that direction.

    …and then there are people who apparently try to turn the “rigid thinking” stereotype into a positive thing, or try to claim that certain types of rigid attitudes or misunderstandings from them are inevitable. “I’m an aspie, so I think in black and white. That’s what we do.” I really wish I couldn’t say that I’ve seen it said in just about those words, too, but I have. Of course, I think some people are conflating it with the idea that “rigid black-and-white thinking = logical” and insisted that therefore they must be “more logical” than most people. (I think even some published authors have pulled the “we think in black and white” line, too– I keep thinking that Temple Grandin did it at one point, although I’m disgusted with her for tons of other reasons.)

  20. …on a slightly related note, I think things arranging themselves into a coherent shape in your head over a long period of time, as a form of coming by revelations, is often ignored in favor of the overglorified “Now *everything* is made clear!” explosive revelation.

    We’ve had a lot of the former and not many of the latter, but a lot of our insights ended up according with those of people who claimed it had come to them in a “sudden flash of insight.”

    Quite a lot of the people we’ve known who claimed to have had “sudden insights out of nowhere,” though, particularly about personal, emotional or spiritual matters, ended up retracting those insights down the road and saying they had “gotten carried away with an idea” at the time.

    I’m certainly not saying that genuine sudden revelation doesn’t exist, or is bound to be unreliable, but… we haven’t rescinded on nearly as many of the ideas that came to us through involuntary rearrangement of things into patterns over years, as we have of what we thought, at the time, to be “flashes of understanding.” And when it comes to people attempting to teach you skills, our experience has been that they almost inevitably are looking for you to have a “sudden breakthrough” or “sudden understanding,” rather than for those ideas to sit in your head for a while and then begin to sort themselves out; and when the hoped-for “breakthrough moment” doesn’t happen, they assume you’re hopeless. (The whole concept of a “breakthrough” is a bit confusing to me, also, because what exactly is it that you are supposed to be breaking through?)

  21. Thanks for responding. I’ll look up the “Dead Hamster Laugh” when I get a chance.

    You’re right, most of the things you write can certainly be generalized to almost any disability: the power relations between clients and service systems for example is broad enough that it’s not even restricted to people with disabilities. Any person without independent funds of their own is in a very disempowered position when they have to try to apply for the support they need, and the system does inherently subject them to a lot of indignities.

  22. My son has two different sorts of laughs. There’s his genuine laugh, which is backed up by him wanting to continue with the thing that’s making him laugh. Then there’s his fake laugh (which doesn’t mean he’s putting it on deliberately). The fake laugh sounds more forced, more as though he’s saying “ha ha” than genuinely laughing. He just laughs then and it sounds as though he could just start crying any moment. I’ve had people saying “oh he’s such a happy chap” on hearing the fake laugh and I’ve had to explain to them that he’s not actually happy about something.

  23. Julian^Amorpha says:

    “Because we do, and because people have seen us demonstrate those rudiments (even if at cost to ourselves that they never saw), everyone’s ‘official’ story on us is that “she can really do it if she tries.” ”

    This seems to be a common issue that cuts across disability (and maybe just humanity in general). I have a friend who in the past has had her (physical) disabilities fluctuate in severity sometimes from day to day. Even her own family couldn’t or wouldn’t understand that, for a time, it was natural for her to be able to do certain things one day and suddenly not be able to the next. So her solution was to pretend her disabilities were more severe than they really were, all the time, so that no one could accuse her of “not trying hard enough” at the times when she really couldn’t do certain things.

    I also was reading the other day on the web about someone with chronic fatigue syndrome who has similar frustrations in which people just can’t seem to understand how she can have enough energy to do certain activities in the morning and then five minutes later suddenly reach her limit and have to lie down somewhere. Some non-disabled people just seem to have trouble wrestling with the idea of a body (or mind) that sometimes performs in unpredictable ways.

    People with ADD confront it too. People can’t understand how a person with ADD can have no trouble focusing on, say, a computer game or some activity they find really stimulating and then run into trouble trying to stay focused on a task that may seem similar but just isn’t as stimulating to them. Maybe it’s an NT thing where most of us overgeneralize too much–partly from situation to situation, but also just from our own experiences and the experiences of people we think we know. (“My OWN body and mind functions pretty much the same from day to day, apart from minor variations caused by moderate fatigue or stress. Therefore EVERYONE ELSE must have bodies and minds that operate mostly the same all the time too. And most of my friends, relatives, classmates, co-workers, etc. seem to have the same experience, so that proves I’m right.”)

  24. This seems to be a common issue that cuts across disability (and maybe just humanity in general). I have a friend who in the past has had her (physical) disabilities fluctuate in severity sometimes from day to day. Even her own family couldn’t or wouldn’t understand that, for a time, it was natural for her to be able to do certain things one day and suddenly not be able to the next.

    I had a funny situation with a doctor once. I can not point my toes. I am literally physically incapable of pointing my toes. I was getting a check up at a college clinic. I hadn’t taken my crutches into the room (. I explained about the disability to the doctor, and she seemed to be following it, but I think seeing me stand and hop up on the exam table unassisted may have made more of an impression.

    She did the usual exam stuff, checking my blood pressure and my lungs and everything. Then, she put her hands against the soles of my feet, and told me to press down. I told her I couldn’t. She told me to try. It took five minutes to explain that I simply could not do it, and it wasn’t a matter of trying. Then she had me get off the table, walk around the room, go fetch my crutches from reception, and tell her all the stuff I’d just told her.

    It wasn’t so much variable abilities, as abilities people assumed went together, but it’s amazing how confused some people get when someone else’s abilities don’t fit their impression of what “someone like that” can do.

  25. J:

    So far, nothing quite like that has happened to me, but I can still sort of relate. I have a foot problem of my own in that my right foot doesn’t stretch very far (I can sort of point my toes, sort of stand tippytoe, but not as high on my right toes as on my left toes. So I tend to be more dependent on a good quality handrailing when going down steps because it’s hard to balance on the bad foot. And I also cannot run at all … I can walk sort of briskly if I’m not carrying too much and if I’m having a “good foot day” but cannot run. And I have not even tried to jump in 7 years because I’m afraid what it would do to my foot. And if I try to carry too much weight combined with too much walking all in the same day, that does some kind of re-damage to my foot that leaves me hobbling for weeks). So far, I haven’t needed to “prove” my foot problem. But sometimes I get conscious when I’m going across the street, “These drivers can see me walking — but do they understand that I simply cannot run if they get too close too fast?” Or if I’m rushing to catch the bus — some drivers will wait for you if they not only see you but also can see that you’re really racing to catch them. But I cannot visibly race! From the driver’s perspective, it probably just looks like an ordinary walking pace! (not that I ride buses much, but …)

    Then there’s the opposite issue, where people underestimate what you can do. The most dramatic extreme, of course, would be all the people who look at this blog and then look at Amanda and go, “So, can you think?” (Uck. And, gee can YOU think?) But as a deaf person who happens to write speeches, I sometimes get the “supercrip” “wow” reaction … not much (I’m lucky in that I seem to mostly come across people who either accept my abilities on face value or at least are polite enough to pretend they do) but enough to bug me. And I’ve gotten the same kind of reaction pretty much all my life. My eight grade English teacher gave me an award that basically turned out to be an award for being inspirational as a deaf student who can write well. (Of course she came up with a nice euphamistic name for it and all, but when I asked what the name meant, that’s pretty much what she said.). And I know she meant very very well. It was supposed to be very complimentary. But my feeling at the time (and STILL is): if she just wanted to say, “What an Awesome writer you are!” then why not just give me an award that says “Awesome 8th grade English class writer” or whatever. Why bring the disability into it at all?

    The rationale I suppose was that, well, most deaf people don’t write so well (the average deaf adult graduates from high school still reading at between about 3rd and 5th grade reading level). And she probably knew, if not the statistics, then the general trends (this was at a public junior high school with some other deaf students, enough that probably most teachers probably averaged about one to three deaf students each year or two. But if many other deaf people don’t write so well, then that isn’t proof that I’m remarkable. That’s just proof that the educational system is a collasal failure when it comes to educating most deaf students. (And of course, I’m not the only so-called “exception.” Just check out sometimes and you’ll find about 200-plus deaf bloggers. And of course that doesn’t even count all the deaf people out there who haven’t really gotten into the blogging scene yet.)

  26. “It wasn’t so much variable abilities, as abilities people assumed went together, but it’s amazing how confused some people get when someone else’s abilities don’t fit their impression of what “someone like that” can do.”

    I volunteer with disabled people and one girl I work with has Rett Syndrome. When I first worked with her, I assumed that since she could walk and grab things, she must be able to get out of the pool unassisted. After awhile in the pool while everyone was leaving and she was just unable to start climbing out, I eventually figured out I needed to lift her out.
    Now that I’ve really gotten to know her, however, I can predict pretty well what she’ll be able to do when. She basically has a lot of ‘motor patterns’, some of which are easy for her to trigger and some I need to cue her on, and things that she doesn’t have a motor pattern for are very difficult. For example, she can’t drink from a water fountain because when she tries to bend over to drink, she puts her hand out like she’s trying to pick something up. That particular motor pattern also made croquet very difficult, as she’d hold the mallet in one hand and grab the ball in the other.
    Personally, I think they really screwed the Ents up. In fact, I have trouble thinking of any characters they really got right in the Lord of the Rings movies. I suppose many of the hobbits turned out alright, as did Gollum.

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