Category Archives: Uncategorized

Feb13

Aspificating snobbery over the DSM all over again

Posted on February 13, 2010 by Mel Baggs

I have seen a lot of “aspies” whining lately about the proposed changes in the DSM. Not productive critique of the new criteria, the medicalization of autistic lives, or the fact that the things most autistic people have truly in common have been left out of the criteria while peripheral things nonautistic people want to fix are spotlighted. No, nothing that useful. Just out and out whining.

“I don’t want to be associated with that other kind of autistic people,” goes the standard whine line. “You know… Those Ones.” The crazy drooling retarded low functioning diaper wearing nonverbal ones who can’t take care of themselves and need to be on welfare. Which one of those or many other pejorative categories depends on the individual variation in the snobbery. (What is it? Snob not otherwise specified? Not like those other snobs.)

I’ve written a lot of posts on this blog about aspification and snobbery of this very sort. It’s been sitting around in the autistic community for a long time. And now it’s coming out of the woodwork. I might link some of those posts once I get to my main computer, just for a refresher. But this is some of the most blatantly hateful and snobbish stuff I’ve seen in a while.

What I wrote to someone earlier:

And some of us might rightly find it insulting to be referred to as the ones that others had to be oh-so-tragically “lumped in with” (you know, “crazy”, “low functioning”, “retarded”, “autistic”, or other categories that people seem to do their darndest to distance themselves from). Like we have disability cooties or something from the way some people behave, and like having the medical people put us in the same category as our “betters” is such a terrible threat (and like it changes anything about who any of us really are).

And it’s true. It’s insulting. It’s insulting to me. It’s insulting to anyone who bears the characteristics that any individual aspified snob might throw at us. And it ought to be insulting to all of those who don’t have disability cooties At the moment either. Anyone with any decency should be appalled that people are upset, not over anything that is really going to harm autistic people as a whole, but at the idea of being thrown in with the rest of us.

It’s especially interesting to see that one of the people most widely quoted as divorcing himself from people who wear adult diapers (like me) is someone who has never seemed to hesitate to use my writing (both with and without permission) but apparently can’t stand the thought of sharing a label with people whose underwear differs from his in certain key aspects, or with people who self-injure. I guess nobody had better tell Carley that lots of people diagnosed with Asperger’s are incontinent and/or have severe self-injury. He might want to create a divide within Asperger’s to wall himself off from such people in.

Funny but I have never minded as a person who has had both such characteristics, sharing an autism label with people without those characteristics. Anyone who delves deep enough into either science or personal experience of autistic people will find that the characteristics related to perception and cognition are the ties that bind us together, regardless of the more superficial characteristics that people divide us up by. Of the autistic people who seem to have the most similar experiences on those deep deep levels to mine, include people diagnosed as high or low functioning, Asperger and autism and PDD-NOS, with IQ scores from 20 to 160. The same can be said of those who most differ from me. The reason is the diagnostic categories are neither deep nor penetrating nor accurate. They divide those with the most in common and connect those with barely anything in common in such haphazard ways it should be obvious that they are falsity of the worst kind. And the same goes when people pick these singular outward traits and hold them up as the ultimate dividing line. Like many autistics I have been saying this since I first got a good hard look at what the categories meant. And surely the deep down bones-level traits are those that matter.

People often get the idea from the media that I prefer to be called low functioning. I don’t. I don’t think that such labels can ever capture the intricate and beautiful complexity that exists within all of us. Nobody should be reduced to such a term even when they do the harm to themself by self-applying such terms. But as a person who has received that label from several doctors without even knowing it, I will stand up and resist the way it is used, and will tell people that when they speak of what they want to do to people with that label then they mean me since I have worn that label. (It is not for them to say they make an exception for me, because when people with that label are mistreated I am mistreated because the label is forced upon me whether some random guy likes it or not. It is forced on me by doctors and by people who yell out of car windows alike and is not so easily repelled.). Such things do not fit into soundbites.

Anyway just let it be known that I totally and completely divorce myself from any person or community who shuns people like me or like any other random autistic person who doesn’t meet the standards of aspified perfection. This is not the way to celebrate human diversity and it is not the way to gain status for yourselves by throwing the rest of us to the wolves. We may share an official diagnostic category (in places where the DSM is recognized), people may finally be forced to acknowledge the sameness that many of us have believed in all along, but (thank God) we don’t all share such a terribly harmful set of ethics. And thankfully it’s okay to reject crappy ethics even if it’s not okay to reject people for having unsuitably proper characteristics.

(“Better? Fuck better. We don’t exist for the beautiful people of the world, Ted. We’re there for the oddball. The rebel. The outcast. The geek.” A line from the movie “The Specials” that just came to mind. As it always does when I am confronted with outrageous elitism.)

Anyway as much as this is a rant against snobbery it is also a call to remember what is important. Look to that beautiful shifting central set of attributes that make us alike and different. Stop using the periphery to divide us. And just as we remember the central attributes that matter, we need to look to the central values that bring us together to assert that we are of equal value no matter how we seem to differ, that we all matter and are valuable, in a deep down way not a surface feelgood way. Because we need those roots to sustain us while other people are fleeing and pointing fingers at those they don’t want to be lumped in with. And because it’s too easy to get blown away by the ethical storms that surround situations like these.

There is so much beauty in those deep levels of who we are, and it’s so easy to forget it when people are going on at great length about how inappropriate it is to see our connections when we could be dividing on the basis of things as surface level as the fabric of our underwear or our IQ points. Yes those things can make a huge difference in how we are treated and what lives we lead, but isn’t that fact something we are trying to change, rather than intensify the oppression?

Feb11

autistics.org needs donations badly

Posted on February 11, 2010 by Mel Baggs

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EDITED TO ADD: Go to Paypal directly if it tries to make you donate a minimum amount or something like that. Go to Paypal directly, and make your donation to webmaster@autistics.org

We are (it is s slightly time-consuming process) getting rid of our presence in Second Life because that has been sucking money out of us at alarming rates. (I am saying this because we are no longer using money on that, just on the site, and yet we still need money.)

We have almost nothing right now money-wise. And we’re mostly maintained by two people on disability, so personally we have nothing to pay it with. We know times are bad right now but we really need the site not to go down. So can anyone with the means to donate, please donate? ~~The way to donate is shown on the front page of http://www.autistics.org/~~ (SEE EDIT AT TOP OF POST)

Our server costs are $55/month, which is dirt cheap for what we’re running on it (and we are only barely able to avoid hitting our maximum on that). Our domain costs are $150-180/year at GoDaddy. There are stray server costs of around $50-100 a year (but not predictable, so sometimes less sometimes more) that happen whenever things crash or get hacked and we have to pay the server people to reset the system. ZoneEdit, which handles most of our DNS, is about $60/year.

Then there are random, unpredictable costs, which we always try to keep to the bare minimum (but which if bad events coincide with each other can run up costs like $500, and sometimes Murphy’s law strikes). Sometimes there’s software we need to license. One time, all of the main webmaster’s several computers died and we had to find her a super-cheap computer at the local thrift store. One time, she had to stay up for several days working on the server (with no time or energy to cook) and after consulting with the rest of us, charged one pizza and one bottle of highly caffeinated soda to the account.

Some other information:

autistics.org is a project, not just a website, and it spans several websites, some subdomains and some actually different websites, that are all on our server. Among them are the Real Voices of Autism (a social networking site for autistic people), this blog, a message board, and a lot of (both historical and newer — autistics.org is one of the oldest websites in the autistic community, being 12 years old) stuff on the autistics.org site. We’re also switching the main site to Drupal, which will allow us to update it much more frequently than we currently can. (Which is why the main autistics.org page has lagged behind a bit from many of the other things going on.) The webpage that we’re working on the dynamic Drupal-based site with, is http://main.autistics.org, which will eventually become the main autistics.org site once we get it running. That’s why the front page of the website shows very little updating.

That all means that we can’t just plop ourselves onto a shared hosting provider, like most of the “lower-cost” alternatives that people are always suggesting to us are. We need our own server, and it needs to be a high-bandwidth one. We still almost run into the memory limit on the cheapest server we could find. And even if someone could find us a cheaper server, it would mean that the main webmaster would have to stay up for days on end trying to reconfigure all of our sites to work properly on the new server.

(Which is a huge problem considering that the main webmaster is currently pretty incapacitated, totally unpaid, and nobody ever volunteers to do that kind of work. Not that we don’t want volunteers. We badly need volunteers who are able to handle the demands of an entire server running high-traffic websites. Because we’re only able to really handle it when things go right. We’re technically about four people, usually one or two people, running a very large project. We’re not a business, or an organization, or a corporation, and we don’t have that kind of resources. We need help in terms of money and we need help in terms of running the server, both of those are important.)

I’d also like to note that lots of people, including people with far more money than we have, use the websites on our server on a regular basis. It wouldn’t be a high-traffic website otherwise. It’d be nice if some of the people (even lurkers) who did have that money, could help us out here.

Feb11

Kittylashes!

Posted on February 11, 2010 by Mel Baggs

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I’ve been wanting to get pictures like this for a long time.

Either click on the above to see the original size (very large file), or look at the closeup in the next image, to see the kittylashes:

I have wanted to show kittylashes for a long time, and finally got them on camera!

Jan29

Cold.

Posted on January 29, 2010 by Mel Baggs

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I am writing this entirely submerged under a big pile of blankets. No part of me is sticking out.

A few minutes ago, I heard Fey jump onto the bed. I lifted up the blankets, wondering if she would poke her head in and then rapidly pull it out, finding some other place to be. She didn’t. She went straight under the covers. Then she went over the lowest blanket and under the rest, down near my belly. I felt her paws scrabbling around while she turned around several times. Then she finally curled up, and is still lying there, one blanket separating her from me.

I remember being the size of maybe two or three cats, and the way blankets turned into an interesting series of caves. But now I am much less maneuverable, and much taller. But it’s still nice to be burrowed under blankets with a cat on a day like this. (And I have to say she chose a better spot than the time about a year ago when she burrowed into my crotch while I was asleep and I dreamed I was giving birth.)

Jan23

Right here, right now.

Posted on January 23, 2010 by Mel Baggs

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In my last post I talked about my tendency to have an automatic and instinctive assumption that dead people were still around. Again, regardless of my current religious beliefs at any given time — I am not talking about heaven hell or purgatory, not talking about ghosts, and not talking about living on in my heart. I mean the literal assumption that they are still living. Except possibly in another time period that I have no personal access to. But I process other time periods as “now” instinctively too, so it all gets very confusing and not conducive to the English language.

I got to thinking about whether it was a more general thing about my conception of time, or some other thing beyond specifically about people who have died. And I realized I do it about objects that have been lost or irretrievably transformed, and places that have been destroyed or transformed.

When I was a kid, there was a VIC-20 game called Omega Race, and a book having to do with a character called Underdog. Both of these objects were obviously and completely lost. Not coming back. I had no particular attachment to them beyond other similar objects, but I insisted on scouring every conceivable location for them over and over again. This was not (as it looked) because I thought I might have missed a place, or (as my brother said of searching for lost items) because I “kept looking in my favorite locations hoping they would turn up”. It was because they had been right here. Right in front of me. And therefore they were right in front of me now. And there must be something wrong with me that I could no longer reach out and touch them. Because in my mind back then, “They are right here darn it, I have grabbed them a zillion times, and it makes no sense that I cannot grab them now.”

If that was traumatic (and it was), when it happens with places it is even worse. I know somewhere deep inside me that there is a Video King store, right near D&J Hobby. You go in and there are videos and Nintendo games for rent. Each video has a little tag you take off and bring to the register, and there are different ones for VHS and Beta. This exists. Now. But I go there later and it is replaced or empty. And that is hellish, because it should exist and there is no reason for it not to.

(It’s strange. Sometimes things work like this, and sometimes the moment something is out of direct perception, it never existed — I can turn around and not remember what was on my other side, move a hand and the thing I am touching is no longer there and totally forgotten. I wonder what the difference is, and why I seem to have both of those reactions instead of the reaction I have only intellectually memorized, where things change and the past and future stay firmly outside of “now”, and you remember things as past while knowing it is the past and not now. I seem to overshoot that mark in both directions.)

Sometimes this even goes for tiny changes, so that, for instance, I perceive myself as currently and simultaneously in every location I have ever been. And it also happens with myself growing and changing, such that for a long time I had constant silent and wordless conversations with my “past selves” (for lack of a better term) because they were all “right now” at once. And for awhile I would walk along routes that took me to places from my past (which I was sure were still there) and if I happened to find people from my past I would triumphantly interact with them and expect them to be as excited that they were still there as I was. (I had no way of explaining this to anyone though, so if anyone wonders the real reason I at one point started showing up at both of my elementary schools and giving long nonsensical reasons for it if asked? This is the real reason. I just had no way of saying it, so I made up the only responses that were available at the time (borrowed from dystopian novels, I think), with disastrous results on one such occasion. I knew you had to give responses, I didn’t know they had to pertain to what was going on inside my head, and if I had known I wouldn’t have been able to give one anyway.)

So I know this is how I have perceived things ever since I was old enough to figure out that unseen objects still existed (which I figured out late and sometimes still don’t know — it’s a skill that doesn’t permanently take for me, it comes and goes). I know it is not how most people perceive things, from the reactions I have gotten when I bring parts of it up with people. I can sometimes intellectually decide things are different than this, but my bones (or my brains) say otherwise. I don’t know if it’s due to my temporal lobe oddities or something else, but it is definitely related to how I perceive dead people. It’s one of those things I could never talk about or ask about growing up, where maybe if I had been able to I would have “corrected” myself. Or maybe not. But it’s still terrible to be confronted with the solid evidence that something that is right now right here, is… gone, or changed, or different. And yet even past that point, my mind still believes it is right here.

Jan21

There’s something about death I don’t understand.

Posted on January 21, 2010 by Mel Baggs

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There have been two significant deaths to me recently. My grandfather died just before Christmas. And Judi Chamberlin (the first psych survivor I saw besides myself who challenged the leadership in that community by the likes of Szasz, Laing, Breggin, and other professionals who upheld many of the destructive power structures within psychiatry while claiming to be rid of them — she wrote a really good book called On Our Own) died this weekend.

And yet again I am coming up against my instinctive responses to death, that don’t seem to be all that standard. (Note that these are instinctive reactions and have been totally unchanging regardless of my religion or lack thereof. The second one especially is not a view or belief, it’s an involuntary reaction on the same level as most people’s assumption that their house looks the sane every day unless something specific changes it.)

For one thing, my memories of people who have died do not do that peculiar transformation I see in other people’s minds. That is, I remember the people the exact same way I remembered them in life. They don’t transform into saints, the bad memories don’t go away, I do not suddenly see them as all good and no bad. I know that this steps on a massive taboo. I did not know how massive until I saw people judging my entire character on the fact that when a particular person died a while back I did not suddenly cease to criticize the dead person’s actions (even though the dead person had called for dreadful things to happen to people like me, and even though the dead person continued after death to have the level of influence that would make those bad things more likely).

Whereas I find it incredibly disturbing that when people I know die, even people I mostly like, suddenly they are transformed in eulogies into people who never existed. Sometimes the eulogies even turned those people into the opposite of who they were in life — a total gossip will be described as never having an unkind word to say about anyone. This strikes me as frightening, disturbing, and disrespectful, but then my way seems to strike most people the same way. (Hint: If I were really the monster some people have made me into for viewing things this way, I would not care about how disturbing I find it to disrespect the dead by turning them into people they never were.)

So that was thing number one about my reaction to death that seems to be weird.

Thing number two is related but different. This is that not only does my memory not suddenly change the person into someone they weren’t, but that my memory does not change at all. The person is still there as far as I am concerned. I continue to use the present tense, not just by habit but because as far as I am concerned the person still exists even when I am fully aware of the fact of their death. I have heard of something superficially similar happening during denial but this is not denial. It happens whether I am grieving a good deal or grieving not at all. I simply don’t see the person as gone. I don’t see people who died thousands of years ago as gone either, I just see them as… temporally inaccessible or something. I grieve for our inability to inhabit the same time-area as each other anymore, but I don’t grieve for their nonexistence because they seem to exist, just somewhere (or rather somewhen) I can’t share with them now.

The first thing makes me into a terrible person in some people’s eyes. The second just seems to make me strange. But both of them are just how I am, I can’t imagine what it’s like to be otherwise. I mean I won’t go to a funeral and talk about how much I can’t stand the dead person, but I see nothing wrong with discussing their faults somewhere else (and I see a good deal wrong with actually changing descriptions of who the person is and what they have done just because they are dead — it’s one thing to refrain from talking about the bad points with people who are grieving, but actively claiming the opposite? Just… no, that erases the person more than death ever could).

And as for the second thing (which I find more interesting by far)… what is it about me that doesn’t respond the same way most people seem to when death occurs? I have talked to a lot of people and very few respond the way I do, or even understand my response. And I don’t understand theirs either. Why is it that most people process death so differently? Why does death seem to me almost as if it didn’t happen? Is there something about death I just don’t understand?

(And before anyone asks, I doubt that either one of these has to do with autism. Many of the differences between me and others on both counts are things I have observed both within and outside the autistic community. I have only met a few people who see both the way I do.)

Oh, and I am not printing comments that claim I am evil or something. It’s one thing to discuss different viewpoints about death in this situation. It’s a whole different ballgame to use my personal reactions to two recent deaths of a relative and a role model to castigate me for not mourning “properly”. Heed the difference, I will not tolerate the crossing of that line.

Jan21

More Cat Photos

Posted on January 21, 2010 by Mel Baggs

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Still taking awhile to write the cat posts, so more cat photos are happening:

The first one is a photograph of Fey sitting on top of her PetPocket, which is on top of the couch. She sits on that thing all the time, when she’s not taking rides in it.

Here is a blurry photo of her curled up in an interesting shape on the bed:

Here the photo is in better focus, but is cut off in the middle of her eyes. Her tongue, though, is sticking out and curled up to one side, in the middle of a wash apparently:

Here you can see part of her face, and part of my face, with the mattress taking up most of the photo:

The following three photos are of her leaning her head against the mattress, from three different angles:

Here she is snuggled against me my face, seen from above. Having a shaved head again is great, because I can feel her fur with any part of my head.

Here we are again, but she has her nose tucked under her arm:

Here we are with our heads pressed together at the side, but pointing in opposite directions:

Here she is with her arm over her nose, looking at me out of the corner of her eye:

And here she is sitting on my wheelchair yet again:

Jan4

I think this is the best theme I could get right now.

Posted on January 4, 2010 by Mel Baggs

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I liked the old theme, but it was incapable of widgets (I like the website kind if not the cognitive kind) so I found this one and replaced the awful cherubs with another close-up photo of Fey. All in all, I am better off using a theme I can actually work with, rather than bumbling about and using up lots of spoons trying to pretend I can understand more than the rudiments of php and stylesheets. I may or may not edit the colors on this theme or make a few minor tweaks, but overall this theme’s solidity is much more comforting than the other one’s fragility.

Dec27

Please bear with me as I fiddle with this theme.

Posted on December 27, 2009 by Mel Baggs

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I had begun to despair of finding any new WordPress theme that I liked, despite being pretty sure I wanted to change it. I went through the entire main directory of free themes (which took forever) and found lots of clever designs but nothing I liked enough to want to use. Finally I found this old one on another site.

The main drawback is that it’s in German, and the second drawback is that it’s a bit kludgy in areas and even then isn’t quite what I want. So I’m going to need to translate it into English (I’ve started but not finished that, thanks to Google’s translation tools), as well as fixing the kludginess (I hope I figure out how, because it’s irritating the crap out of me) and tweaking it until it’s what I want (I hope I figure out that, too).

And yes the comments link is there, it’s just barely visible until I figure out which part of the stylesheet influences it (I’ve never formally learned stylesheets, I just bang on various things until they work, hopefully). The background used to be a hideous orange color, so I’ve had to modify all the text colors after I changed the background to white. (The background may not stay white, but it should stay a color that these text colors are readable on.)

And I’m doing all of this while being climbed on by an irritable cat who wants something that I can’t figure out what it is.