berries. blue.

The ABC Report about blueberry field abuse

up close through others’ eyes

Read those before responding to this post.

This is the first time in my life that MY community has been highlighted on national television. I mean…the place I worked. The place I have memories of. The place my body has memories of.

Not just “community” that I count myself a part of.

~has that ever happened to you?

It changes how you see things. Because you see yourself for the first time through the eyes of others. Up close. You can feel their breath on your skin. You can smell their perfume.

And you know what they think of you.

Not abstract you, not “identity you claim” you.

You.

She asks, has this happened to you, and I reply, [utterly inadequately compared to what she wrote]:

Not identical — we’re from different communities, and the issues are different. [Hopefully it’s obvious what I mean by different communities, even though this isn’t about “community identities’, etc. I’m not going to add any more disclaimers though, or I’ll never be able to write this.] But similar.

Every time they find torture in institutions, and try to fight for pointless regulations that won’t even stop the obvious torture, let alone the day-in day-out degradation and dehumanization that changes and smashes and wounds you inside worse than any physical torture ever could.
Reading the detached and clinical reports [from the agency that uncovered the abuses], and the news reports, about institutions that I was in, some of which I was in at the time the reports were being made. Remembering what the real issues were and that nobody who writes the things ever gives a damn about them, or about those of us who lived there, or about anything other than us as a symbol of mute helplessness and things that happened to us that we accepted more than we accepted the worst things. It fills me with feelings so powerful I can’t even name them. And I cry. Or I pound things. Or I just lie there immobilized by the feelings. And I never know how to explain it to anyone, even though I try my damnedest all the time because I know with my whole being that this is what matters [and so few of us are talking about it where people hear, it’s so much easier to just forget, and so difficult to put a finger on]. (And yet know that many will discount me because I’m the sort of person who ends up in those places, after all. Not reliable. Not real.)

I just pissed off Larry Arnold about “deleting” comments he made that I’d never actually seen. But I figured out the problem, they were in my spam filter. Problem solved. But I figured I should post this in case it happened to anyone else. (Edited to add: I just checked — I found a whole bunch more posts sitting around in my spam filter, and have de-spammed them as well. This is way clearly nothing personal, the thing is just acting up too much.)

Just to reiterate something I said recently before:

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.

I just searched on that person’s name in my spam filter, and found the comments.

Please note: If I’d deleted the comments, I wouldn’t have been able to find them in my spam filter. Deleted comments disappear entirely.

If I do delete a comment it’s either because:

1. It violates my comment policy. (Which isn’t about agreeing or disagreeing with me, as you can tell by what I let through. However, I don’t allow hurtful gossip, and I don’t allow attempts to derail self-advocacy efforts by saying people aren’t autistic, or aren’t the kind of autistic people who matter, or, by virtue of being autistic, are clueless.)

2. It contains private information.

3. I misclicked (the new WordPress dashboard makes it really, really easy to do that — instead of having checkboxes where I can click next to the ones I want deleted, then the ones I want to keep, etc, and then click something at the bottom of the page, there are little links on each comment now for approve, spam, delete, etc., and if I click “delete” by mistake, it’s gone forever).

If there are things from awhile ago that seem to violate my policy, that’s because the policy wasn’t always there. If there are things from now that seem to violate my policy, it’s probably because I don’t always read through comments very thoroughly before approving them. (And that “don’t” should really be “can’t”, or else I’d never find the time to approve them all.)

As I said before, if you’re attached to a comment, keep another copy. And also, don’t assume the worst if something doesn’t appear. I just got through a month’s worth of backlogged approving comments elsewhere, and a lot of them were people posting the same thing over and over and then sometimes going “You didn’t post my comment, that must be because __________”. No, seriously, I just didn’t get to it until now.

I’ve got 3172 comments in my spam filter right now. If some of them are yours, I’m truly sorry about the problems. I just don’t know a better way to handle the enormous volume of comment spam I get. Please keep copies of any comments you’re particularly attached to, and email me (my blog address with an @ after the first word instead of a dot) if they’re not getting through. I’ll try to find them in the spam filter through a search.

I do clear the spam filter from time to time though, and then there’s no going back unless someone posts the comment again.

Please also be aware I’m not in a position to answer all my emails, do everything I’m supposed to be doing, etc. I’m behind on that already. I’ve got a lot of stuff going on in real life right now. I’m not doing a tenth of what I should be, and I haven’t been as political as I’ve wanted to be lately. But I’m doing what I can, and I tend to assume that I’m not the only advocate out there and that other people are doing things when I can’t be doing them. Frankly I think I need to hang out in more political discussions than I have been lately, because I find that often it’s the environment that allows me to do, or not do, something.

At the same time… since I’ve gotten back online more thoroughly, I’ve been hit with a massive amount of requests, demands, questions, queries, etc. Many of them assume that I’ve stored knowledge I haven’t stored, know things I don’t know, remember things I don’t remember, and can do things I can’t do. I feel bad about it, because a lot of the things being requested, demanded, etc., are worth doing. But at the same time, feeling bad about it doesn’t exactly help anything. I’ve tried to do as much as I can, when I’ve been able to do it.

Just be aware that when you write to me about one thing, I’m also likely getting emails, phone calls, and a whole lot of other things, about a lot of other things. Some recent examples:

• A person who worked at a school for autistic children, wanting advice on how to best get law enforcement’s attention about abuse there, and get the abuser fired, and is possibly facing retaliation.
• A full-time caregiver of a girl who’s in the hospital with a life-threatening medical condition, the hospital might not be acting fast enough to save her life, the person who has actual guardianship over the girl is too strung out on drugs to care what happens to her.
• An autistic person is trapped in the psychiatric system and their parents are trying to get them to sign over all their rights, and they have enough psych labels that their friends are afraid that most people in the autistic community would claim they belong in the system getting “treatment” they don’t want, and that they just lack insight, etc. And since I’ve been on the other end of that and have firm beliefs on that matter, I’m the one initially being written to about it.
• Someone wants my help coming up with solutions to make certain online environments accessible to a broader range of people than most people think of accessibility in terms of.
• Online meetings for a political autism-related group that I’m a co-founder of, that I’ve only managed to show up to one of in the past several months of weekly meetings, and that I’ve gotten weird reports of it being a ‘support group’ now (not something it was intended to be) and of it ‘dying a slow death from neglect’ (well, yeah, but I’d hope that a group with lots of people could function with just two people not being there).
• Someone wants me to work on the stylesheets for more than one website on this server, since I know my way around CSS and the like better than the person who does all the hardcore sysadmin stuff.
• I have to email a few people about participating in a panel discussion at a conference, then write my own part in it (topic – force-fitting oneself to stereotypes, or being force-fit into them by others, and consequences, basically).
• I have to write a longer speech for a different conference (where I’m hoping to incorporate concepts from disability politics into a discussion of autism, in order to get a different from usual perspective).
• About 3 or 4 interview requests, one of which I’ve agreed to (specifically because I’m only one of several interviewees within the self-advocacy movement, instead of being made into some single representative of all autistic people and all our opinions, which is both impossible and not something I’ve ever been interested in), which means four or five days of my time doing things, and then another several days of way less ability to do things than usual.
• Several people wanting to know about my life in general, in ways that I might or might not even tell a total stranger.
• Several people apparently wanting me to jump in and help them with flamewars I’m not interested in engaging in.
• People developing assistive technology wanting me to look over their ideas.
• Many, many people wanting DVDs of various videos and/or permission to show them places.
• Lots of comments that I haven’t yet moderated, in lots of places.
• An entire list that I’ve been not managing to hang around to moderate much of either.
• Lots of people (here and elsewhere) angry about their comments not showing up, and assuming the worst about the reasons.
• Lots of people not angry about their comments not showing up, but just repeating their comments lots and lots of times because they think they didn’t get through even if it was just me not getting to them yet.
• Someone wants proof that I can actually type, and is interpreting all of the previous results of making videos with my prior crappy camera with no tripod mount (and thus no way to tilt the camera or suspend it in various locations without a lot of duct tape and other contraptions that I don’t always have the ability to deal with), as intentional manipulation to make it look like I’m typing when I’m not. And, then, is going on to interpret my not getting to his requests for a video Right Now as proof that I’m not really typing.
• Someone wants to name a robot after me.

That’s not all, that’s what I can remember right now.

Two things determine how I respond: Capability and priority. Sometimes something’s a high priority but I just can’t do it, sometimes something’s a low priority and I can, so the two don’t always go together and it’s as frustrating to me as it is to anyone else.

I’ve noticed Laura getting a lot of stuff too, and a lot of it being framed in terms of demands. One day, she’d been basically working all day and night on the server (which is well past her capacities as a sysadmin in some respects), as well as taking care of me. Note that she’s autistic and has a severe physical impairment as well. She took a break to watch her favorite news program for an hour, and then she was going to get my medications set up for me, and then she was going to do more work on the server.

Well… she got a phone call halfway into that news program, which was her only break for the day. The phone call was from someone who wanted a password. Fine. She said she’d get it within an hour or so. The person at the other end of the line apparently said, “No, not in an hour or so, now,” or something to that effect. Meanwhile, she was getting emails saying that she had to do something else, for a totally different website, right away, and that if she didn’t do it, she would have to do something else that was even more impossible to do right away.

This is one person trying to do a whole lot of work on an entire server full of websites, while also being thrown into the role of caregiver for that time, and everyone seemed to be pressuring her to do their part first, and right now, and no it couldn’t wait half an hour or an hour. Each one seeming to think they were the only one wanting her attention right then, and some of them frankly not seeming to be able to differentiate between a need and a want, or between a possibility and an impossibility.

To be fair, one of the people demanding things right away, while the things didn’t really need to be done right away, that particular person was experiencing enough hardship at the time that they must have viewed even Laura as having the luxury to do just about anything. That happens, I’ve even fallen prey to it, so has Laura I’m sure, but it’s not always the most accurate assessment of things.

I almost wish there was some way to show people exactly who we are, and what our lives are like, and what our abilities are like, though. Instead of that, I’ve just produced that list of stuff that people are writing to me about, in the hope that it will show exactly how many things there are to pay attention to. If I could really get to all of these at once, and the many other things I’ve accidentally let drop over the months or years, I would be at a workplace right now getting paid, instead of my actual situation which I think if anyone magically teleported here and looked in my room right now they’d see the problem right away. At any rate, I’m only one person, together we’re still only two people.

So also a blanket apology for several things:

To anyone I didn’t get to when something was really important, for not getting to them.

For not being as political as usual in my writing. And for allowing myself to mostly get sucked into apolitical sorts of things.

For the actions of my spam filter. (No, I didn’t cause it, but it still caused problems.)

For allowing myself to get extremely sloppy when I write about things, and often writing as if things are true that I know are not or are only approximations of the truth, because I can’t easily right now find the language for what I really mean. (An example would be discussing particular psychological terms without sufficient discussion of what destructive concepts they embody.) Or even things that I just outright don’t mean, because the phrases pop out of my fingers fully formed, triggered by the words before them.

For often writing only half of some idea without addressing the other half as much as I should.

Also, a new website on our server is this (edited to add: try clicking again, I gave the wrong web address before):

The Real Voices of Autism. It’s running social networking software, but the point is it’s for autistic people and our allies. Not for any one person to claim to be the only real voice of autism or anything. It’s intended to connect people with similar interests and stuff, but also to make it easier to form discussion groups and have discussions about how to do various actual projects in the real world and stuff like that. And to share links, and, etc. As Laura put it, “This is your site. Do what it what you will, provided of course that you’re not abusive.” (And “do what it what you will” is actually exactly the kind of thing I was talking about earlier with word trouble, only some of mine has been a lot worse than that, and I’m having real trouble reading lately.)

So… I hope any of this has made enough sense. I don’t want to intimidate anyone who’s trying to contact me, I just want people to be more aware of what the real situation is with requests for things.

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.

In the Wired article, I’m described as cueing up a video. It can be inferred that it is a video I made, but it’s not, it is a video made by ChristSchool, and it is this one:

Then there was a quote attributed to me at one point, that actually belongs to D.J. Savarese. I was telling the reporter a story about how when Savarese was interviewed on CNN, he was asked whether he thought autism ought to be treated, and he said, “Yes, treated with respect.” That quote is attributed to me in the article, when really I was telling a story about what someone else said, and did say clearly that it was D.J. Savarese who said it.

I am guessing that both of these things have to do with the fact that the reporter’s tape recorder broke and did not record the interview as planned, so he was going off of notes, which probably involved writing down the words but assuming the tape recorder would pick up the exact names of the sources or something.

Another thing slightly off is the amount of time it said I spent on the Internet. I was emailed and asked about that, and I said sometimes I spend a lot of time, and sometimes I spend very little to no time. I am guessing that the “scary amount of time” part fits in better with geek culture. ;-)

But I do spend a fair amount of time offline, in reality: I have obligations in the rest of the world too, given that I have a neighbor I go over and assist with a time-consuming medical device on a near-nightly basis, a volunteer job involving cats (who don’t have net access) that I sometimes do often and sometimes barely at all depending on what I’m capable of, a cat and dog living with me who want to spend time with me, and a fair degree of exhaustion just getting through everyday stuff (I can get online from bed, but don’t always do so).

None of this is to say I don’t like the article, I just don’t want people to mistakenly attribute other people’s quotations and work to me in the process.