Monthly Archives: August 2007

The requested cat/theremin video

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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.

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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.

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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.

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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.

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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…

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(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.