Monthly Archives: August 2007

The requested cat/theremin video

Standard

Since someone requested it:

I tried to caption it, but I’m not sure how much information I managed to convey.

Since various people have been asking, what’s been going on is:

1. Visitor was here for 8 days, nearly all waking hours spent with her
2. Too many physical therapy appointments (and plenty of associated pain afterwards as far as I can tell)
3. Too many urgent-care appointments, both for me and a neighbor (for different reasons)
4. Too many meetings
5. Still trying to work on the cat video
6. Trying to plug very slowly through at least a bare minimum of online obligations as well as anything random I come across online
7. Offline volunteer work
8. Recovering from #1-7

This hasn’t left a lot of time for blogging, answering emails, etc, although I’ve been doing some of these things erratically. I lost my wireless card so any emails to my MIT account probably aren’t getting through either. If anyone’s sent anything to that account that’s urgent, please send it to my regular email account and I’ll attempt to get to it (anyone who has the MIT address also has the other as far as I know).

Understanding of rights vs. having rights.

Standard

I just read a discussion in which someone had said, “People who don’t understand they have a right to privacy don’t actually need privacy, especially if the privacy violations are happening in the name of abuse prevention.” (I’m not trying to dredge up personal stuff so I’m not naming names or forums and ask people to do the same, I’ve seen this around many forums by many people and this person just happened to spark this entry. This is a response to the general concept, not to that person.)

Well, one thing I did was refer them to Dave Hingsburger’s “Ethics of Touch” video where he describes how increased impairment/likelihood of abuse/etc requires increased boundaries and observation of rights, not decreased ones. And I also pointed out the hubris in assuming that a person doesn’t understand they have rights, and the difference between gut-level understanding and intellectual understanding (you don’t need intellectual understanding of a concept of ‘rights’ in the abstract to feel viscerally when they are being violated, or to feel pain in general even if you don’t know where it’s coming from). I covered a lot of this in my more careful, not less post.

Additionally, something else Hingsburger mentioned in the same video — not understanding that you have a certain right sometimes is the problem in and of itself, and is a sign that a right has been systematically violated. I once let a total stranger into my apartment. She walked around, inspected the whole place in detail, asked me a question (which I answered incorrectly due to memory problems and an incorrect understanding of time-words — she asked me if we’d been harassed lately, and I thought she meant within the past hour or two — we’d had threats of violence towards us and our pets screamed at us through our front door something like the night before but I didn’t remember or mention those at the time, I have real trouble retrieving information like that in response to questions) and left. Turned out she was the attorney for the other side of a legal case my roommate was involved in. My roommate was angry that I let her in, and angry that I’d given her an answer she could use against my roommate. I didn’t know I had a right to refuse people entrance into my apartment. And that was the problem. The solution wouldn’t be to continue treating me as if I had no such right, because, after all, I didn’t understand, now would it?

But there’s another aspect to this.

If anyone uses the argument, “They don’t understand this right, so they don’t need it,” they can’t pick and choose. If not understanding a right means not needing it protected, then people who don’t understand the intellectual concept of a right to life can be shot, people who don’t understand the intellectual concept of a right to freedom from abuse can be beaten and tortured, people who don’t understand the intellectual concept of a right to eat can have food withheld, and so on and so forth. Not to mention those who would otherwise understand the concept but have been treated as if the right does not exist so long that they don’t realize it does, or don’t believe it does even if they do know that such a right could theoretically exist.

So don’t use “They don’t understand the concept of rights, so they don’t need them,” and then turn around and claim you’re using this argument to justify abuse prevention. If you really believe that people who don’t understand a right don’t need to have it protected, then you have no business trying to prevent the abuse of people who (you think) don’t understand a right to freedom from abuse. If you do believe that people who don’t understand the right to freedom from abuse deserve protection from abuse, then you don’t belong using the “They don’t understand the concept of rights, so they don’t need them” argument, it leaves people wide open to abuse on many levels.

Job qualifications.

Standard

Actually I do have something to write about, I just forgot it. I hope I haven’t already written about it and forgotten. If so, I’m writing it twice. I planned before to write about it and never got around to it (or else got around to it and then forgot).

I was talking to my case manager the other day about the job my support staff do, and the sorts of experiences that do and don’t tend to qualify them for the job. And they’re not what most people tend to think. I in fact prefer people who have not had a ton of human services experience before, because that often means a lot of things to unlearn. (There are of course exceptions.)

The people who tend to do the job best are people who’ve done jobs that have involved practical, often physical work that requires them to be observant of their surroundings and adaptable to situations that might crop up, through their own thinking rather than through a rote script someone’s written for what to do. So the characteristics that tend to be good are practicality, observance, and adaptability.

Those things mean that even if someone’s never heard of autism before, they’re more likely to observe a situation and figure out what to do in it regardless of what they’ve been taught. They mean that if they’re pushing my wheelchair up a hill or something and start bumping into a lip in the sidewalk, they aren’t going to continue ramming me into it until I fall out, they’re going to figure out on their own how to tilt the wheelchair backwards. And they’re probably not likely to store things out of my reach, either. And if they do, they’re likely to learn not to pretty fast.

Those “little things” are more important in everyday life than whether they understand the theory of any given disability category, or than whether they can spout all the politically correct words about disability, or whether they have 20 years of experience “working with” autistic people or whatever. Most of the best staff I’ve had have started out knowing very little of any of that stuff, but seen the situations and adapted to them as they happened. And some of the worst have been the ones who would seem the most qualified to a casual observer. I bounced this off my neighbor, who also has support staff, and she agreed. The qualifications for this job are not always what people think they are.

The difference between what’s normal for someone and what isn’t.

Standard

I remember being confused about something that happened during my first Autreat.

After Autreat, someone was talking about how surprised she was to see a particular person having a particular kind of trouble. (I’m being vague on purpose, the kind isn’t all that important and the people involved probably want to be anonymous.) I was surprised how focused she was on this, given that lots of people there (including me) had the same kind of trouble and she did not seem alarmed that the rest of us did. I asked her about it but she hemmed and hawed more than she gave an actual answer.

I eventually got an answer from a friend of hers that was more blunt: “Nobody looking at you expected you to be high-functioning enough not to have that trouble anyway.”

Oh. (Keep in mind at that point I regarded myself as being, and looking, extremely “high functioning”, and believed in functioning levels. This was awhile ago. But, more to the point, I didn’t always have that trouble to the extent that I had it after flying across the country, especially after getting stranded between flights.)

Today a guy came over who works for the nighttime emergency service I use in lieu of a roommate. Normally, they’re sent over here for bad situations. Often I’m some combination of very ill, in pain, and immobile. Apparently there’s some mandatory part of the program that involves them coming out and meeting us on an ordinary day periodically. And I’m beginning to see why.

Someone who mainly sees me during emergencies is going to have a much different understanding of what my baseline abilities are, than someone who sees me on an ordinary day. In fact, a person who doesn’t know me well could easily mistake the way I’m doing on a bad day, for the usual, and thus not really worry even if I’m showing clear signs of something being incredibly wrong.

This isn’t just true in medical situations, either. People who worked for this agency have disregarded signs of emotional stress on my part before because their presence caused me enough stress that they never saw me un-stressed. When my friend had to explain to them that normally I’m a fairly animated person and don’t sit meekly in a corner saying yes to everything unless I’m terrified out of my mind, they had trouble believing her.

So it actually seems like a really good idea to have people get familiar with what someone is usually like, even if what they’re normally going to be dealing with is emergencies. That way, they can tell the difference between something being wrong and something being normal for that person.

(BTW, the recent absence of posting is because I’m working on a video about my cat, and cats take a lot of time to film, at least in the contexts I’m trying to film her in.)

Not-so-stupid questions.

Standard

I have heard over and over from teachers, that for everyone who asks what they think is a stupid question, there are at least five other students who wanted to ask the question but couldn’t get up the nerve to actually do it, and will now get it answered. (And who will maybe acquire more courage after seeing someone ask the question they were thinking of and not get laughed at by the teacher.) And so, the “stupid” questions are not so stupid after all.

There are a lot of things that I find difficult to blog about. But I do it anyway, for a reason that is related to the whole concept of there being no stupid questions.

So far, every time I have been terrified and ashamed to blog about something, afraid people will laugh at me or worse, it has been something that someone else relates to on some level or another. And often someone will even say that it an experience they have had but had always been afraid to say so, or that it helped them see an experience in a new light, or that they now have some clue how to word an experience they’d had but never been able to articulate.

That is actually the main reason that I do some of the posts that do talk about how my mind or body functions. It’s because I’ve had that experience, from the other end, been afraid to say something and gained insight or courage or language or loss of (undue) shame from someone else saying it. And I want to be like the student who shows it’s possible to survive saying and doing ‘dumb’ things or asking ‘dumb’ questions, if that makes any sense. I want to be able to possibly give others the good experience others have often given me.

And that’s why, despite the fact that I have a real problem with being pigeonholed as a self-narrating zoo exhibit, I still write things that could be seen that way. It’s not because I want to be a zoo exhibit for curious onlookers. It’s because I want other people (whether autie or not) to be able to have that experience of “Oh cool this person said what I was thinking but couldn’t or wouldn’t say,” and then for them to (if they want to) be able to pass that on themselves.

I guess one reason that I feel strongly about that is because I spent a long time bumbling where I didn’t have to bumble. That happened because I was not exposed to much in the way of information from people whose minds or bodies functioned like mine. Not much in the way of political information, and not much in the way of everyday body/mind-functioning information. And I had to figure out things in a way that was rougher and harder than it had to be. Not that I expect people to take all information from me as gospel or anything, that’d be ridiculous. But I do hope that the information I and others put out there will affect someone’s life so they don’t have to take the long hard way around when they don’t have to. The same way information from others has affected me, when available and relevant. Just so that everyone doesn’t have to work out the same things over and over, each person alone and mapless but bumbling eventually in roughly the same direction.

So, I might say ‘dumb’ stuff, but I hope it’s the same kind of ‘dumb’ as in ‘dumb’ questions that lots of people actually secretly want to ask.

If anyone gets here through the Channel 4 segment…

Standard

(Oops, I thought all British channels were BBC. Corrected now.)

I was interviewed, along with Laura Tisoncik and a few other people (some of them pictured during the shots of Second Life), through Second Life, by a reporter who approached us there.

Whoever edited the interview, edited it into something incredibly simplistic that I do not remember us saying.

Laura and I told the reporter at length, for instance, that autistic self-advocacy was really a branch of the disability rights movement. We described the social model of disability (which, while still a model and imperfect, is easier to explain than more complex things) which makes the question of “Is autism a disability or not?” nonsensical by definition. We did not divorce ourselves from the concept of disability even an iota, in fact we were continually reaffirming political autistic people’s connection to the disability rights movement. Neither of us trivialized autism into anything like a “lifestyle choice”.

She also talked to us at length about functioning levels, and we talked about how that concept falls apart as you actually get to know autistic people. We used ourselves as an example, where she is usually stereotyped as high-functioning and I am usually stereotyped as low-functioning, but there are things I can do that she can’t, and the differences between us are really pretty minor and superficial, it’s just that some people take a few small and superficial aspects of us and blow them out of proportion. Neither of us would’ve consented to a description of me as ‘profoundly autistic’ (or ‘mildly autistic’ for that matter, just ‘autistic’ will do nicely, and if you have to describe what we can and can’t do, describe it in terms of specific things, don’t describe it in terms of some overall level, because that always betrays much more about which skills the person labeling finds important than which ones the person being spoken of has).

Finally, and perhaps most importantly, we were asked specifically what our answer was to people from the National Autistic Society (and I know for a fact that the NAS is not monolithic on this issue, because Larry Arnold and Mike Stanton would both disagree with this idea) who claimed that the autistic liberation movement will make it harder for autistic people to get services. We pointed out the obvious fact that one of the top priorities of autistic adults, including those of us who are political, tends to be getting all autistic people whatever assistance we need to be able to live our lives in the best way possible. That we are in fact always calling for real, proper adult services.

In fact, can anyone read any of the following articles: And People Still Fail to Get It, Again and Again, The Conference Presentation I Won’t Make (But Want To), To the Kit Weintraubs of the World, Why I Am Angry, You Have It So Good, A Reply to the Initiator of the Hear Their Silence Rally, and Input from Autistics and Allies during the Hear Our Voices Campaign, and think that autistic people just don’t understand that some people want or need services? And these are just articles by various people from the website run by two of the people interviewed. Looking further would’ve gotten people even more stuff. Like, oh, The Reality of My Autism by Larry Arnold, who’s on the board of the NAS and is part of the autistic self-advocacy movement as well (and is another one trying to build bridges with the more mainstream disability movements).

But, in the end, they quoted a non-autistic member of the NAS but did not quote any reply to them from us, making it therefore seem like we actually had overlooked this area that we have very much not overlooked.

So, if anyone gets here because they heard of me or this website on Channel 4, be aware how much was mangled in the editing room. It’s way simpler, I suppose, to oppose ideas such as “disability” and “way of life” off each other, it makes for nicer sound bites, but it’s not what we said. Just as, in the other recent article in the UK about this movement, very few if any of the people quoted would’ve actually said something like that either (and there were other distortions in that one, like describing both me and AFF as if we were more prominent in our respective countries than we actually are). The “fun” part about being quoted or paraphrased in the media always seems to be that things always get either edited down to sound bites, distorted, or both, somewhere in the retelling, and then we have to answer to people who are angry at us for saying things we didn’t say.

The right to say “I don’t know”.

Standard

I’ve been, offline, for many years, writing down things I do or have done that cause problems, either for me or for other people. This isn’t some kind of self-flagellation or anything. I just figured if I wrote everything down then maybe I could figure out how not to do some of these things.

There’s a few sentences that I have had to work really hard to use on a regular basis and in their appropriate context:

  • I don’t know.
  • I don’t understand.
  • I don’t remember.

I say I don’t pass, and when I say that I mean that if you look at me you know something’s different. The most I ever passed for at my peak of passing was eccentric (to people who liked me) and annoying or crazy (to people who didn’t). But it doesn’t mean that I haven’t developed strategies, without even meaning to, to cover for certain situations in which betraying a lack of knowledge or understanding would earn me ridicule, disbelief, and hostility. So I guess it could be said that I pass, or try to pass, in certain areas, although what I pass for is sometimes worse than what I actually am.

I’m sure this is something a lot of people do. The difference is that when most people cover for a lack of understanding or memory or knowledge, they’re covering for fairly standard lacks in those areas. The areas that I don’t understand, know things, or remember things, are relatively unusual ones. So somewhere along the line I developed a strategy of substituting any explanation that sounded plausible, whether it was true or false. I did this unconsciously, and I did it solely to cover a lack of understanding, not with any malicious intent.

Over the years I have been able to nearly stop doing this. But there are still some situations where it happens. The more of the following are involved, the more likely it is it will still happen:

  • Pressure to produce language rapidly.
  • Pressure to produce answers rapidly.
  • Ridicule, disbelief, scorn, hostility, belittling, or actual physical damage, if I do not produce language or answers rapidly.

This was summarized in more official language in my IPP this way:

She reports that pressure to perform according to other people’s schedules and expectations makes thinking things through difficult or impossible. When form is valued over function in decisionmaking, Amanda is likely to perform in a rote way without full understanding of the range of choices available to her or the decisions ascribed to her.

[...]

When Amanda is pressured or overwhelmed, she sometimes reverts to non-communicative echolalia, using responses she has already learned, without evaluating them to see whether they are the ones she wants. Non-communicative echolalia often results in others believing she has made an informed decision when she has not, and in others assuming that she has agreed to something that, upon reflection, she does not want.

Basically, when I’m under pressure, the focus of word-generation starts heading away from communication, and towards the best possible way to get someone off my back as quickly as possible regardless of what I end up having to say in order to do it. This can be a useful survival skill, but it’s completely useless when it comes to wanting to actually communicate. And the last time I really did a lot of it ended in total disaster.

As to reasons I do it… several years ago, a friend of a friend (I’ll call her Jenny just for convenience’s sake) was talking to me and Laura about me. Jenny was trying to explain to me the idea that I might just be uncomfortable moving beyond my “comfort zone” and trying something new and so forth. Laura replied that this wasn’t usually the problem with me, and that in fact my problem was usually a about whether I believed I was allowed to or had a right to do certain things. While that’s not as much of a problem now, I still catch myself seeing something and going “Oh wow, I didn’t know I was allowed to do that,” and then doing it. It’s not usually a “comfort zone” thing for me, it’s a forgetting that something is permitted.

That’s been the case with “I don’t know.” And “I don’t understand.” And “I don’t remember.”

Because there’s a lot that I know somewhere in my head, but I have real trouble accessing that knowledge. I usually think I’m required to give an answer. “I don’t know” is an answer that is easy to forget is allowed.

And there’s a lot that I don’t understand, things people think I should understand or do understand already. I’m used to thinking I’m required to come up with some demonstration of understanding something even when I don’t. The idea that I’m allowed to say I don’t understand is still a bit surprising.

“I don’t remember” is one of the hardest ones. Because it’s the answer to a lot of “obvious” questions a lot of the time, like:

  • What did you have for breakfast this morning?
  • What did you do yesterday?
  • When did you learn ________?
  • What was your first experience with ________?

My memory, such as it is, stretches back to some part of infancy, although the things I remember from back then aren’t generally things that would interest most people. When something triggers a memory, my memory is reasonably accurate, although fuzzy on some details. But if for whatever reason the thing isn’t triggered by the exact right sequence of events, all you get is blank space. And straining against blank space only provokes frustration and eventually possibly confabulation, not real memory. So, if you asked me what I ate for breakfast this morning, I might say “scrambled eggs” because that’s something people eat for breakfast. But it’s a guess. And it’s probably inaccurate. (In fact I know it is because today I wouldn’t have had enough eggs left to make those.)

And I know that the responses I get if I admit lack of knowledge, understanding, or memory (in areas where most people have automatic knowledge, understanding, or memory, or in places where I’ve clearly demonstrated knowledge, understanding, or memory in the past) are often really unpleasant:

Some people laugh at me. Some people think I am being stubborn or refusing to tell them things on purpose. Some people call me stupid. Some people add pressure as if they think that will make me more able to come up with an answer (hint: the more pressure you add, the less accurate the answer, so watch out). Some people think I’m lying. Some people think I am being passive-aggressive. In fact, I can vividly remember someone screaming at me, after one of those I don’t understand or I don’t know or I don’t remember moments, “I’ve had it with your passive-aggressive bullcrap!”

I’ve decided at this point that I’ve had it, too. I’ve had it with people who can’t accept what I don’t know, understand, or remember. I’ve had it with people who’d rather I pretend to know something than admit I don’t know it, who in fact find such pretences somehow more honest than my serious and real lack of knowledge. I’ve had it with answering partially, incompletely, or totally inaccurately because people insist I have to, and with the consequences of doing so which are usually some justification for hurling some kind of abuse in my direction or giving me crap later when I try to fill in the gaps or retroactively correct myself or even (horror of horrors) change my mind.

To people of that nature:

If I don’t know something, I’m not going to pretend to know it for your sake.

If I don’t understand something, I’m not going to pretend to understand it for your sake.

If I don’t remember something, I’m not going to pretend to remember it for your sake.

I’ve now explained this. From now on, I don’t care if the gaps in my realtime access to knowledge don’t make sense to you. I don’t care what you accuse me of for taking my time, for refusing to answer questions I don’t know the answer to, or for correcting previous inaccurate or incomplete answers I’ve given under pressure. I have a right to say I don’t know when I mean I don’t know. If people can’t handle this part of my daily reality, that’s henceforth their problem.

And I think in saying this I’m not only speaking for other auties who’ve discovered the same covering strategies I’ve discovered, but for a lot of other people as well. A lot of people who are deaf or hard of hearing (or, like me, have general receptive language problems) end up pretending to understand something, because they know if they slow the conversation down by trying to figure out what people are saying, they’ll get in trouble. This is done so often among people with certain kinds of amnesia that it’s earned itself a medical name. A lot of people with learning disabilities (either the UK or the USA variety of that term) learn to do things like this as well.

And we shouldn’t have to. Other people do not need to be shielded from the inconvenience of dealing with people who doesn’t know, understand, or remember the exact things most people are expected to. Surely the cost of day-in and day-out passing and covering and confabulating is higher for the people doing it (and for that matter those around us) than the cost to those around us of actually dealing with the unexpected gaps in our understanding, knowledge, or memories. And these gaps are nothing to hate or be ashamed of. I for one am not going to cover them anymore.

Yep we do have nonverbal communication.

Standard

And can form friendships with each other that include reading and responding to it a good deal more than people expect. This video of D and DJ (D’s mom is an online friend of mine) shows it beautifully:

A friend of mine said that D mentioned that nobody ever uses autism when they’re talking about something people are good at, only when they’re talking about something people are bad at. I think this is a really good example of an aspect of being autistic that’s related to stuff some of us can be really good at, but that we’re often said to be bad at because either the non-autistic people around us can’t see it or we’re never given the opportunity to show it.

I even know someone who I was having a discussion with about our ability to read nonverbal cues. She said she’d never heard anything like some of the things I was saying before. I asked her, since she knew all these parents, whether the parents said that their autistic children picked up on tension in the household. She said “Yes in fact all of them mention that, but I always thought that was strange because autistic people aren’t supposed to be able to read nonverbal cues.” So, instead of seeing that as evidence the prevailing stereotypes are wrong, perhaps many people file it into a bin labeled “contradicts what I think I know” and don’t ever look at it again.

Well, it’s not just tension we pick up on. See my dialects of nonverbal language post for more on this. But as to the question I’m often asked, “How can what you do be a language if nobody else speaks it?” My answer is, don’t be so sure nobody else does.

Another form of neurological variance, apparently.

Standard

Someone just asked me privately, how it is that I manage to write so much.

For anyone’s reference, my main problem is how not to write. I have written compulsively ever since I was able to manage a keyboard without going into meltdowns. It hasn’t mattered whether what I wrote made sense or not, had anything to do with what I was thinking or not, or even whether the writing was any good, I just had to write. I’ve probably written enough to fill volumes, although most of it I’ve deleted or thrown away over the years and a large chunk of it is barely intelligible. Similarly with a lot of other creative activities, such as music, dancing, painting, drawing, etc. It’s not just that writing is a primary form of communication for me, either. I did this when I could speak, too. And I did it even when I wasn’t writing anything I was thinking. I’d just write random words or sentences if nothing else came to mind. Or copy entire pages out of books by hand. I do it when I am not intending anyone to see it. It has nothing to do with people seeing it, in fact. It just happens.

And in trying to explain that to someone, I came across the following article: The Brains Behind Writer’s Block, about hypergraphia, which is, surprise, writing compulsively (and also pertains to other creative acts as well), just as I’ve described above. It’s linked to differences in the temporal lobes. (I have temporal lobe seizures and a brain scan showed very high activity in parts of my temporal lobes compared to typical brains.) Looks like another one of those parts of neurological variance that gets medicalized as a disease but seems to be useful (if sometimes aggravating) in practical terms.

It also makes me ticked off in yet another new way, that when my brain scan showed unusual patterns of activity (both inside and outside the temporal lobes), the first thing the doctor who performed the scans wanted to do was find some combination of drugs that would magically make my brain scan show more standard activity patterns (something that I doubt was possible, but he managed to get me prescribed a combination of drugs that zombified me in his attempts to do this). I wonder when people will get it that non-standard brains show non-standard activity and that trying to force them into a standard activity pattern will only mess things up, it’s like trying to get a cat to wag her tail and bark, even if you could you don’t have a dog, you have a confusing and confused cat. This is my normal.

A quote from Alice Flaherty’s book on the subject, The Midnight Disease, (which I now need to get a copy of — she’s a neurologist who ended up with hypergraphia for some reason) says:

The sight of a computer keyboard or a blank page gave me the same rush that drug addicts get from seeing their freebasing paraphernalia.

Yes, exactly. My brother once said (looking around my house) he’d never seen so many things with keyboards on them in one spot before. There’s a reason for that, but at least it’s not a particularly harmful addiction (unless you count tendonitis). And I’m pleased that she notices so clearly that it’s the act of writing that’s the addictive part, not necessarily any intent beyond that. It’s very personal, and would take place even if I were stranded on a desert island with a keyboard-containing device of some sort. (And as friends will attest, minus a keyboard, I often start touch-typing in the air.)

So, yeah, anyone wondering why I write so much should actually be asking how I manage to write so little, if anything. My main trouble isn’t getting myself to write, it’s that I can’t not write, even if I’m coming up with the wrong words when I do it. And I have the massive stashes of random textfiles and printouts to prove it. I seem to have made it work for me, though, and it seems to be a decent trait for a prolific blogger, as long as I keep a handle on the “make this actually communicative” bit. ;-)