Monthly Archives: April 2008

Apr13

Okay, we’re back up, sort of. And I Am Kathleen.

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I’ve just restored my blog from backup, and I see it didn’t restore the last entry, but the last entry was just talking about us being down for maintenance. We’re slowly getting everything set up, at the pace of a couple of autistic snails, but better to have a half-broken website than an all-broken webmaster.

As for this new edition of the WordPress dashboard, yecccccch. lastcrazyhorn has already described the awfulness better than I could. This is completely disorienting and annoying me.

The other blogs should be up shortly. We’re restoring them, as far as I know, in alphabetical order by subdomain. Everything is going smoothly, and because of this Laura is wondering precisely when the inevitable disaster will occur. She has stocked up on caffeine. I am being handed old envelopes with passwords scribbled on them, and my job appears to be to restore and maintain the blogs.

I still can’t check email efficiently. There is one person I replied to, who emailed me back, and now her email to me is stuck in my apartment and I’m still failing to be in my apartment, so I can only check webmail. Problem is I think her email address is lost. I owe emails to Roz Picard as well, and probably others.

And of course, I Am Kathleen, but I have been unable to write a post on the topic. I’ve got two saved as drafts (if the database backup process didn’t eat them somehow) but I was never able to finish them. And by now everyone knows about what’s happened to Kathleen anyway.

Obviously this would affect me as I am listed on the subpoena, and she is a trusted friend of mine, meaning that in addition to thinking this whole thing is utterly disgusting for Kathleen, my own privacy (and, relatedly, safety) is at stake here as well, because we keep in touch mostly through email. The only exchanges of money we’ve had have been over things like paying her back for pizza. Back before I’d met her, I sent her something I’d written that I only sent to a small number of people I trusted. It dealt with areas of my life that I was still only just daring to figure out.

I also think the little dig at her as a Muslim is both awful and silly: I am trying to imagine a Sufi conspiracy with Big Pharma, and it is about as ridiculous as a Quaker conspiracy with Big Pharma. Then again, Quakers tend to get put on lists too. But people are clearly trying to capitalize on fears about Muslims, and that’s just basically hate propaganda. As someone, somewhere, said about this whole thing, “Muslim is the new Communist.”

At any rate, Kathleen is my friend. We have gone out for Japanese food a few times and Middle Eastern food once. I have met her husband and her teenage autistic child. They are fun and delightfully geeky.

She has helped me as moral support at two separate meetings of a formal hearing when I filed a complaint about a case manager who wanted to put me in a more restrictive living situation. She also helped fold me and stick me in the van we were driving there in the time that I was frozen or semi-frozen the whole time.

She has also helped me sort through my extremely chaotic private medical records for CNN’s fact checkers, and helped me file them in a coherent order so I could find them. She has also been there as moral support at one of my interviews with CNN.

She has helped me navigate two conferences, that I have gone to as an autistic self-advocate (like Kassi says… and Kassi was at one of them), and she read aloud my speech at one of them when I didn’t have the communication equipment to do it myself. She has also assisted me with movement at these conferences by pushing my wheelchair, putting a hand on my back to help me through doorways and over other thresholds while I was walking on foot, and once helping support my arm so I could type when I would have otherwise been frozen. She has helped me negotiate travel and airports and all that kind of stuff. And she has helped me help Kassi as well (such as the time I lent Kassi my wheelchair because the hotel people had, in their infinite wisdom, put her in a room all the way down the hall when she had a bad ankle).

She has, despite malicious rumors to the contrary, never put her words in my mouth, and in fact has always been very careful not to attempt to speak for me. She is not my puppetmaster.

And aside from all this, and more than all this, she has been a good and trustworthy friend to me. Neither of us are in the pay of Big Pharma, neither of us is in on some Big Awful Conspiracy ™. And the way to find out if someone is in the pay of Big Pharma is not to invade the privacy of (and possibly, thus, endanger the safety of many people from) their entire blogroll.

You can buy I Am Kathleen, the T-Shirt on Zazzle.

And that’s about all I have to say on that matter right now. I hope Kathleen’s motion to quash succeeds. I was at one point planning to link to every single blog post about this, but, by now, that’s just impossible and I’ll never get this posted if I keep trying to do that. Kathleen and her family have my full support in all this, whatever amount I can give.

(and the lolcats version (i r katleen. and i r leejun))

Apr4

A difference in perspective.

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“She’s so happy” is what someone just told me about Fey, my cat, who’s visiting me where I’m staying right now.

Actually, while Fey is a lot of things right now, happiness isn’t what I’d summarize it as. She’s glad to see me, but she’s also edgy and scared about being in a new place (and about me not being home yet), angry at me for not being home, annoyed about having been picked up, and frantic in her attempts to get me to do something by nudging my hands and face hard and in rapid succession.

I notice this sort of thing often. I obviously can’t read a cat’s mind and know precisely what she’s thinking about everything, but I can get a pretty good clue through body language of the assorted layers of emotions she’s got going on.

Other people often seem to have a limited template of cat emotions in their heads.

Such as, as I finally deduced today, “Purring means the cat is happy.” Which is a gross oversimplification of the use of purring by cats, and which seems to lead to humans totally ceasing all further observation of what the cat happens to be doing in addition to purring, as well as all comparison of the sound of the purring to all other purring the cat has done.

Then there are more “subtle” things like not knowing the difference between a play-bite and an anger-bite. Which doesn’t seem subtle to me, but after watching a lot of people interact with cats, it seems like many people don’t get it. I’ve seen too many people attempt to “play with” (read: invade the space of) a heavily annoyed cat, only to conclude the cat is “mean” when they get hissed at and scratched. And all too often, even after the hissing and scratching, they might say in a sing-song voice, “You meanie,” and go back for more. Putting themselves at risk of a serious bite and taking every warning sign the cat has to offer as a sign of “playfulness”.

That last one, I had trouble understanding for awhile. I thought the humans doing those things were being cruel themselves. Then I ran across a person who seemed absolutely contradictory: She was very conscientious about most things, but at the same time she seemingly terrorized my cat and then laughed about it.

A friend pointed out that she probably wasn’t able to read feline social cues very well.

And that did turn out to be the problem after all.

But it seems like to many people there’s only one set of nonverbal cues that exist: That of the neurologically standard members of their own species in the culture or cultures they are most familiar with.

Anything beyond that appears less nuanced, but often they conclude that rather than being unable to pick up the nuances of an unfamiliar species, neurotype, or culture, then these nuances don’t exist unless the unfamiliar people in question develop nonverbal cues specifically intended to communicate to the person doing the observing. They might even, if they don’t even manage to learn an abbreviated version of the nonverbal cues in question, conclude that the unfamiliar species, culture, or neurotype has no body language. Which leads to being stereotyped as mysterious, sinister, defective, deficient, or some combination of the above.

I’ve always found it interesting, how if autistic people don’t understand certain things about non-autistic people, it’s because autistic people are disordered (deficient in understanding “nonverbal cues” in general, as if there is only one kind), but if non-autistic people don’t understand autistic people, it’s also because autistic people are disordered (deficient in our ability to produce “nonverbal cues” in general, as if there is only one kind). People seem very resistant to the idea that there are many levels of detail and nuance that they are missing in this regard.

Apr3

The obligatory post-CNN entry.

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I’m glad they got it reasonably accurate this time, and even finally included stuff from the interview with my case manager, although I still wish I’d seen more of the other people from the AutCom conference, since I know several were interviewed, and I’d participated in all of this mainly hoping that they would show me as only one of several people. (I’m hoping they’ll use some more of that later.) On the other hand, I’m glad they used more of that than before and emphasized that I’m not all that unique among the wider autistic community. And I’m slightly baffled as to why there were at least two parts of it that they repeated twice within the same hour, and one answer that seemed pasted in from a different question (I am pretty sure when asked why I made the In My Language video, I talked about Ashley X).

And also, my relationship with my friends is just that, we’re friends, I’m not some kind of one-way inspiration machine and I don’t aspire to be (that last link is very tongue-in-cheek).

If you’re new to the blog, some stuff that ought to be read first, although CNN did a more thorough job than before in covering some of that stuff:

Disclaimer on Assumptions, Let’s Play Assumption Ping-Pong, and Please Don’t Take Me As Typical are all things you might want to read if I end up not being quite who you would expect me to be, or if you expect my life, body language, etc. to correspond directly to every single other person who has the same set of labels I do. I try to cover everything that could surprise people, but I do forget stuff.

My comment policy (such as it is) is covered in some combination of the bottom of the About page and Gossip-Free Zone. The rest can be summarized by “Try not to be a jerk” (I’ll tend to delete that stuff, although if I have the time and there’s other substantive content I might just edit them). Be aware that my spam filters often mess up and throw things in the spam bin that are actually legitimate comments (this happens most often to Andrea Shettle for some reason, to the point where I search all spam for her name before deleting it). So you might want to keep a copy of your comment just in case. Things that are clearly intended to be private, I save. Things that aren’t but contain private information, I edit.

Assorted things I’ve meant to say, from the other side of the usual time barrier is something I wrote after the first CNN broadcast last year. And By the way… was my response to their amusing choice in music. Again. And Again. And Again. deals more indirectly with the process of being asked questions (including by CNN) that I had trouble answering. The awful prison of autism dealt with both self-consciousness during interviews, and the tendency for people to analyze everything an autistic person does in terms of autism. Editing described some things that didn’t make it into last year’s CNN broadcast (some of which did make it into this recent one). Post in anticipation of tonight’s deluge was an older post much like this one. Some quick corrections and clarifications was in response to the recent Wired article.

Hopefully that’s enough links to clarify various things.