Monthly Archives: July 2007

On the other hand…

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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.

“We won’t help you until you stop acting like you’re in pain.”

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Last night I engaged in a very interesting conversation with a guy who works at the service that helps me out at night.

I was in a lot of pain. By a lot of pain, I mean I was crying and periodically screaming. I don’t cry from pain usually. I didn’t cry when my gallbladder was well into emergency stage, I just went really quiet. If I’m crying from pain, it’s serious. And this pain (and related movement restrictions) was serious enough that a spinal tap was done when I finally did get to the emergency room, because it sounded to them a lot like meningitis. (Fortunately it wasn’t.)

Anyway, I was sitting there trying to string sentences together, while barely able to keep auditory comprehension going, and trying to push through all the pain-induced shutdown to actually talk to the guy. And I’d periodically get the wording wrong or scream in half-pain half-linguistic-frustration or accidentally interrupt him. He told me that he would not help me until I was able to “respect” him the way he “respected” me.

You know… usually, if, for instance, someone’s finger’s cut off, and they’re running around cussing and screaming and not being very polite, other people kind of grasp why they’re acting like that and don’t act like the person is being disrespectful on purpose. Somehow, if the person has some kind of disability label however, this becomes a “behavior problem”. I used to know a guy who went untreated for pain for years, with a dislocated hip, because he had a developmental disability and all the things he did because of the pain were considered “bad behavior”. They didn’t bother looking to see if he was in pain. Hint: Physical pain isn’t behavioral, and treating it as behavioral is a violation of our rights.

(And if I’m not tending to my blog enough, now you know part of the reason. Sorry about that.)

Irit Shimrat in trouble

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Just got this comment from Irit Shimrat:

Please contact me. I’m locked up and being given harmful “medications” in a town called Comox in British Columbia. I can no longer access my main (gmail) account on the computer for use by patients so I googled myself and found you. I can be phoned at 250-339-1490 but e-mail is probably better. The hospital is called St. Joseph’s General Hospital and I’m in the inpatient psychiatric ward. I’ve been here since July 5 or 6 and was in “seclusion” 12 days; don’t know quite how or when I’ll get out but have a paradoxical reaction to a drug my psychiatrist, though a good man, can’t understand he needs to stop giving me every day – it makes me quite ill. I thank you for having found me and very much wish you to find me again.

Yours in big trouble and much fear,

Irit Shimrat

Can anyone help her? I don’t know anything about the Canadian system.

My clumsy attempt to talk about wide-scale American politics.

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I don’t usually post about large-scale electoral-type politics on this blog. I follow it, but it’s one of those topics that I have more understanding of than capability of writing about. The number of those topics far outstrips the number of topics I actually can write about, giving the illusion that I only know things about a narrow range of topics (the ones I can write about). I can write about parts of my internal workings because I’ve had to learn that one out of necessity. I can write certain things about human rights, particularly about applying general ethical principles to specific situations.

People who know me well know this discrepancy exists. One friend told me it’s like I’ve got all kinds of things somewhere in my brain, but unless you hit on the exact right thing to get them out, they stay in there unless you know what to look for. One thing that might not be obvious is I’ve learned a lot of history, both from books and from people. I can note the general shapes and patterns of things. There’s very few people I generally trust enough to fumble for words about these things around, though. And half the time they have to know what I’m getting at before they understand my assorted fumblings. At any rate, if you think all I am or all I care about is what I write here, you’re missing a lot of my life, some of which I don’t talk about because it’s not relevant to my reasons for blogging, but some of which I don’t talk about because I can’t.

Another autism blogger recently posted this clip (I don’t remember who or I’d credit them). I know some of my readers won’t like the source. But in my view the stuff that’s going on in America right now isn’t about liberal or conservative or other political ideologies — Bush et al aren’t acting on any sort of system of ethics or politics I’ve ever heard of, they’re acting on greed and selfishness, and that should be a concern to anyone. I’m going to do what I usually do when I don’t know all the words for something and pull a Mrs. Who, quote someone else:

(not captioned, but transcript available here)

Anyway, since that clip happened, there’s been even more crap going on in that regard. And I hope enough people are concerned that something gets done about this.

This concludes my clumsy attempt to talk about wide-scale American politics. This is not my typical subject but what’s going on in this country has been outrageous for a long time and I’m glad people who do know how to say things are saying them. I just wish the people in particular positions of power would do so rather than succumb to their own varieties of selfishness.

Strange search engine phrases.

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Bev just posted some search engine phrases used to get to her blog. Here’s some of mine.

Lots of people looking for stuff about blowing noses:

can’t blow nose
videos of blowing your nose
blowing noses
nose blowing
loud nose blowing women
do you remember learning to blow your nose
blowing my nose video

The hamster people:

how to make my hamster smile?
can a hamster laugh?
hamster body language
hamster bleeds
sign of a dead hamster

A few people looking for assholes:

assholes who communicate indirectly
autistic assholes

People who really hate Menninger’s:

i hate menninger
fuck menninger

Uh… female exams:

female exam
physical female exam video
fantasy female doctor exam
female fantasy of dotor exam

Who knows:

stratified something
real life pictures of crypto animals
when do octopus sleep?
stop eyeballing me private
pinpong in my mouth

I don’t entirely want to know:

real rape kitchen video
how to write threatening email without being caught
i’m a bad guy and innocent
what are some good probing personal questions
photoes of various illness of ass in females and treatement of ass of females by doctors
women naked sexing men
vomiting dog video
pictures of eyeballs out of there sockets
breast penis size in siblings

(edited to add) And from last month, in no particular order:

children who express the desire to kill their siblings
staring at the bridge of the nose
amazing randi idiot
i have thoughts of killing my kids
dead bunny power tool
purple lips on autistics
what did you have to do to be punished in medieval times
lesbian suffocate her with plastic bag
fat people doing sex
tarred and feathered medieval women withholding
being asked to give head
how to build a phone out of cups
is my hamster dying
i am a nice loving person
more accepted burping
i think spirits are taking my forks and spoons
great people dont do things differently
extreme private self mutilation pics
how can i stand out to people instead of always being the person in the background
hamster is crying
is criticizing partner penis size dangerous for relationship?
how to dispose dead hamster
sordid blanket
can a retard play chess
vomiting dog video

Plugging the daily living group just in case Joel’s plug isn’t enough. :-P

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My friend Joel recently told me he wanted to start a group for autistic people dealing with daily living crap. I told him I had for awhile wanted to start a group for autistic people who have (or need) support services for helping us out with daily living crap. We figured we’d instead co-moderate a group broad enough to encompass both things and more, and this is the result (Joel started it and wrote the description, everything from here on out is the same as he wrote in his blog except with the names reversed):

Autistic Daily Living is a new group to discuss challenges (and hopefully some solutions) for daily living. Joel is helping me co-moderate this group.

The full description of the group:

This group will focus on issues relating to daily living needs for autistic adults, in an environment that is positive towards autism. Many of us have significant and real trouble with things like housing, eating, obtaining services, communication, cleanliness, work, access to medical care, finances, transportation, and other “basic” parts of life that are taken for granted by most of the neurotypical world. The group will be a safe place for autistic people to discuss troubles in these areas, without fear of being judged as “lazy” (as a result, people who think autistic people just need to “try harder” probably should find a different list). It will also focus on solutions to these problems that don’t involve loss of basic freedoms – solutions discussed might include: how might someone in New York state obtain help cleaning their house, for instance? Or what can be done for an autistic person in Germany who has not eaten in 2 weeks since his mother has died? What might someone do to prepare for a job interview? How can someone get rid of an abusive personal aide? What options are there other than institutions for me? Additionally focus will also include discussion of things that may not currently be possible, but might be able to come into being – how might we get governments and insurance to fund communication systems for people who only need them some of the time? What might an autistic “intentional community” look like? How might an employer create an environment that favors autistic people?

All are welcome to participate in this group, regardless of diagnosis (or lack of). Non-autistic people are welcome to give helpful suggestions and otherwise participate. Note however that this is not a support group for parents of autistic children and that most of us, despite having trouble with daily living, do not view autism as a negative thing.

So feel free to head over and join the new group, whether you need help or you think you might be able to help others figure things out. The group won’t focus exclusively on either people who receive support services or those who don’t – it is intended to be a place for a wide chunk of the autistic population.

Stupid brain tricks.

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Someone else had made a video of their associations of personalities, genders, and colors with numbers, and I replied with a video response of colored letters and numbers:

Be aware that synaesthesia tends to be way more fascinating to synaesthetes than non-synaesthetes, so the video might for all I know be very boring to most people. Synaesthesia usually has an emotional component as part of the neurological response at the time, so every time I see a letter as having a color, or a sound as having a texture, or whatever, there’s a “Wow this is really cool” response going on in my head that’s just as involuntary as the sensory association itself (and synaesthesia is involuntary, rather than consciously imaginary). So I would have trouble getting sick of watching colored letters and numbers (provided they’re the right colors — the wrong colors drive me nuts), but I don’t expect the rest of the world to find it so fascinating. Although I expect Bev will probably like it because it shows the number 8 twice.

I wish I had the animation skills to make an animation of the assorted colored lines and blobs and shapes that go with the music, too, but I’ll have to content myself with letters and numbers.

Eight Random Things

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I’ve been tagged by Steve D at One Dad’s Opinion.

The rules:
1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

I’m doing this one photographically. The photographs that have larger versions can be clicked on to see them. I’ll do photographs and then the stories behind them. Not sure how random they are, they’re all stuff I found in different areas of the house though.

1) Clock

These are the innards of a particular clock. My parents apparently found it in the attic somewhere and have no clue where it came from. It doesn’t work too well now, but throughout much of my childhood it did. My parents said that its gong was one of the first sounds I responded greatly to, and it was with apparent recognition and great interest (the apparent recognition led to speculation I’d heard it in the womb already, no clue if that’s possible or not). I can remember in older childhood running to watch the workings behind it whenever I heard the first few clicks winding up for it to gong.

2) Beam tree

a slab of plastic with a tree-like design inside, sitting on a wooden stand and lit from the bottom

This is called a beam tree, and we had one in the house because my dad worked at SLAC. It’s another thing I remember staring at a lot. In this case, there was a base a friend of his made, that had a light in it with a rotating colored filter. This meant it would light up in all different colors. I didn’t even realize how rare they used to be until I got older, nor did I understand how they’re made. Basically, they’re made by sticking a slab of plastic at the end of a particle accelerator and bombarding it with electrons. Then a person touches it with a piece of metal in a certain spot, and all the electrons escape. The tree-like shape is the escape path of the electrons.

You can see one being made here:

3) Books

a field guide to birds

That field guide to birds is the first book I ever read, and apparently memorized a good deal of it. I was quite young at the time. I particularly remember my favorite word ORIOLE (which is black and purple), and because the word was black and purple (due to the O and R), confusing it with the black and purple coloring on the next page, which appears now to be attached to a grackle.

the book Momo by Michael Ende

These days, though, my favorite book is a children’s book, Momo by Michael Ende, and my preferred reading is children’s fiction.

4) Scrapbook

scrawled child writing saying, if the air is so full of water vapor that it cannot hold anymore the weather report says the relative humidity is 100 percent if the air has only half as much water vapor as it can hold the report says the relative humidity is 50 percent

This is from a scrapbook my parents made from when I was a kid. For reference, I did not at the time understand the words concepts of humidity, relative anything, water vapor, or percentages. I was copying this almost word for word out of a book.

scrawled child writing saying, sometimes mars and earth are on the same side of the sun then the two planets may be only 35 million miles apart, then a badly drawn diagram, a bunch of hearts, and writing saying, to anna and ron

From the same scrapbook, astronomy stuff that I apparently gave to my parents given it has their name on it. I don’t remember if that was from a book or not. Astronomy was a Big Thing of mine for awhile, I devoured the entire section at the library. Just random kid geekery I guess.

5) Message bracelet

a message bracelet saying 10 GOTO 1 RUN ERROR

Speaking of which… I don’t know about you, but I don’t know a whole lot of little neurotypical girls who, when asked to make a message bracelet, would come out with something like this. My brothers taught me to use a VIC-20 to make patterns on the screen pretty early, things like this are the result.

6) Cats

shiny ceramic figurines of a black mother cat with two kittens

I used to collect these, this is only one of the remnants of that collection (I gave most of it away before moving). I used to have an entire shelf full of cats in ceramic, wood, rubber, and any other form I could find them in. Cats, as you can gather, have been another Big Thing for me. When I was in sixth grade I wrote my autobiography as roughly, “We had cats named Tiger and Mouse and Calico. Then Mouse had kittens twice and there were Smokey and Tangerine, but Tangerine’s name got changed to Frank. They all ran away when we moved but Smokey and Frank came back. Then a black cat showed up in our woodpile and got named Jenny before we figured out he was a boy.” And so forth, going on at great length about the fur length, coloring, and appearance of all the cats.

7) Tape measure

a retractible tape measure

I found this lying on the road in Boulder Creek, California, which is where I lived when I first moved away from my parents. It had clearly been beat up and run over a bunch of times. It’s become one of those comfortable objects that I take with me places for familiarity purposes — it feels good in my hand. And it also has ties to another kind of object I used to use that way. When I was in school, I carried a lot of bags around with me (people frequently made the pun with my last name because of this). One of the things I did was I’d pick up rulers and put them in the bag. I unfortunately wasn’t grasping the idea that it wasn’t nice to nab other people’s rulers. I amassed quite a collection. Oddly enough, I never got in trouble for it, but I did get a bunch of kids chanting “Thief! Thief! Thief!” when they saw how many of them I had. I suppose they had a point. (Don’t worry, I’ve since grasped the idea of property.)

8) Star

a star-shaped ornament with metallic edges and lots of colored plastic pieces hanging on twisted wires in the middle

This is something my friend Natalia sent me, along with a wooden cat. The wooden cat fits perfectly in my hands and has gotten so familiar so fast (and used as another of those familiarity objects) that people often ask me if I’ve had it for ages, but really these things were only sent last year. The ornament is really cool because it’s got little pieces of colored plastic in the middle that look neat when held close to your eyes, and can also be fiddled with and spun in circles. Natalia is particularly talented at picking out things that really suit me in some way.

So I have to tag a bunch of people. Hmm. I hope I haven’t overlapped with anyone’s tagging, and I’m not even sure all these people participate in things like this, but here goes:

I guess I tag Natalia (same Natalia) at My Spanglish Life (because she’s random by nature anyway), Dave Hingsburger at Chewing the Fat (not sure if he does memes or not, but worth a shot), Moggy at Moggy Mania, Rark at rarkrarkrark, Danni at Danni’s Blog, Neral at kirayoshi, Chris at Simple Gifts, and Danechi at And Stimming with Rainbows at Every Design.

The funny thing about communication.

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Joel wrote about how people think about him when he’s using a communication device versus when he’s speaking, in You Must Not Want Company. One remark made was that when someone’s using a communication device, they obviously want to communicate or they wouldn’t be using it. I wanted to write a bit about when I’m communicating but not speaking or using a communication device.

I’ve had a few different friends remark that they were sort of amused by something about me. That was, that they could go for half an hour to an hour of having a conversation or other interaction with me, before noticing that I wasn’t actually talking or typing at all.

One of them was a friend where whenever she visited me (we lived near each other for awhile, now we’ve both moved away) we’d just sit there for awhile without talking to each other, but certainly greeting and interacting with each other. Another is a friend I now live near, who commented recently to someone else that she’s often shocked when she notices that she’s been carrying on a long conversation with someone who isn’t saying anything back, and that it feels totally natural.

It feels totally natural to me when it happens, too. It’s less tiring than coming up with words is, that’s for certain, or than listening to words. It doesn’t cause that awful feeling of exhaustion, pain, and pressure that entirely word-based interactions eventually and inevitably cause. It allows me to actually participate in non-verbal communication rather than being blocked out of it by language (and yes, one tends to block out the other, either way). And the interaction feels a lot more meaningful to me.

Another situation is when I truly can’t move, or can’t respond in other ways (even if able to move). I am automatically fearful when that happens, because some of the worst interactions in my life have been when this has happened, whether this be the kid in college who used to hurt me to try to snap me out of it, or the psych ward staff who used it as a bizarre excuse to tie me down and scream at me (question: When someone is so stiff that you can pick them up by their hands and the rest of their body stays rigid in a sitting position, why do they need to be any further immobilized than they already are?).

I have had two surprisingly good experiences with this recently. One of them was at AutCom last year, when I was exhausted after giving my talk, heading into another bad migraine, leaning against a wall, and not frozen but not able to respond or even focus my eyes properly. The staff person of one of the other attendees came up to me and talked to me, and I realized it was one of the first times that a stranger had talked naturally to me when I was like that, as if they were fully aware I could understand them. That meant a lot to me. Another was after those darned fireworks, when my friend explained to my other friend that freezing like that did not mean that I was unaware of things, but rather than I was likely more aware of things than usual. That’s something a lot of people never understand.

Joel is another person I’ve had a lot of fun with without necessarily talking all the time. Although the two of us can type up a storm together too. (When we first met, we put a laptop on a table, hooked an extra monitor and keyboard to it, and typed back and forth on it for hours.)

I wonder what it is that makes the difference between the people who experience enough communication from me that they forget that I’m not typing or speaking, and the people who forget that I’m there at all because I’m not typing or speaking.

Kassiane needs help.

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Kassiane, a.k.a. Rett Devil, has been an online friend and advocate for a long time. She is in a lot of trouble at the moment. This video explains it. It’s basically an emergency situation and she needs money for meds to keep her from going into status epilepticus among other things (edited to add: status epilepticus means having seizures back to back without regaining consciousness):

A friend of mine transcribed the video (which I did not make, by the way) as this, for those of us who can’t read that fast:

Kassianne is severely epileptic and has lost her health coverage, due to an act of fraud performed by her former housemate out of spite.

She is running dangerously low on Topamax, Neurontin, and Keppra, without which she will most likely die of status epilepticus.

This is ‘Ask and Tell’, a book to which she contributed a chapter on self-advocacy for autistic children.

Stephen Shore, the editor who compiled the book, has stated that hers is most likely the best chapter in the entire book.

For her contribution she received

$500.00

And no royalties

And the book is considered groundbreaking!

If you have money to spare, please give to Kassiane for lifesaving medicine and living expenses.

Her Paypal name is kassiane_alexandra at yahoo dot com [edited by me to avoid spam crap]

It’s a much better use of your money than giving it to Autism Speaks or a similar hate group.

THANK YOU!!!!!!

You can see some of her previous public speaking at this URL. And you can see her tumbling a few years ago here:

Her paypal address is kassiane_alexandra at yahoo dot com.

Remove the spaces and turn at into @ and dot into . for that.