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.

(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.

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.

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. ;-)

Feminist bloggers in particular, we might need your help on this.

Jerod Poore has now posted sexual pictures of Kassiane Sibley ( http://crazy-meds1.blogspot.com/2007/08/naughty-naughty.html ) without her consent, in fact with her express non-consent, because of whatever dispute they are having. He’d apparently been threatening to post these pictures for awhile.

Please note: There is no excuse in the universe for doing this. Even if what he said were true. Even if the sex were really wholly consensual (which Kassi says it wasn’t). Even if Kassiane were manipulative and horrible and nasty and self-centered person who stole things from him and left his life a mess, there would be no excuse for this. There is no excuse in the world for posting sexual pictures of her without her consent, and even less excuse to post them above her explicit objections.

I don’t want to hear how she “deserved what she got” or whatever and I will not post comments of that nature so don’t even bother. Just as, I don’t care what she’s supposedly done, even if I believed every rumor she would not deserve to die from lack of healthcare and I won’t print stuff that justifies that. (Nor will I print elaborate rehashes of gossip about her.) Right now she’s the one without healthcare, she’s the one with pictures of her naked butt all over the Internet without her consent and with demeaning sexual comments printed about her, and I utterly refuse to justify those two things as “she deserved it” or anything resembling it. Nobody deserves this. “She deserved it” and “She asked for it” are tired old objections that won’t get any airtime here, there’s plenty of other places to post crap like that. If you do post stuff like that, though, I’ll take screenshots and forward it to whoever is handling this legally, so be forewarned.

I know that there are bloggers who read my blog who are far more immersed in the feminist community than I am. (I am still learning about feminism, and agree with much of what I have seen so far, but have not directly been involved in that community at all.) I would urge those who are involved in that community to get the word out through that community. Ditto the autistic community. This is a mess and I don’t know how to solve it. It’s possible to report things to Blogger (and I urge everyone to do so) but this needs to go further than that, this has crossed so many lines it’s not even funny and someone with more experience in these sorts of matters needs to come to Kassi’s aid here. All I can do is post alerts and try to make sure the right people find each other, my skillsets in these areas are frustratingly limited.

I was just reminded of one pretty solid indicator that the guy who works for me in the afternoon actually sees me as a real person.

Whenever he leaves, he says really casually, “See you guys later.” Always has, since his first day here. Just did it again about five minutes ago.

He means me, the dog, and the cat. He addresses it to all of us. He realizes that when he’s in my apartment, there’s four sentient creatures in the room including himself.

There was a staff person I knew in California who was the same way. She talked to me and to my cat, neither of us with baby talk, as if we were actual people. She was training to be a speech pathologist, and I think she’ll make a good one.

(I’m remembering in particular how Fey and I used to watch her while she did stuff, and she talked to both of us when we did that, “Why are you two staring at me!?!”)

And I’ve found that staff who instinctively see the dog and cat as worth talking to, just casually, and acknowledging them like that, tend to see me as a person, and an equal, as well. Not a hard and fast rule or anything, but so far I haven’t met many exceptions.