Why comments might not appear. And some notes on asking for stuff. And some apologies. And a new website.

Standard

(Edited to add: If anyone can direct this woman and her daughter to resources to deal with the situation described in that post, it’d be really helpful. I’m passing it on because I don’t know about these things, at least not right now at 2:30 in the morning, but I’m guessing others do.)

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.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

16 responses »

  1. You have way too much on your plate. I think a lot of those requests, especially the ones that need you to help out with people stuck in institutions/bad situations, your writings should be sufficient for them to go out and do something themselves. Beware of “hopeless” people: everyone, in the end, needs to take responsibility for doing stuff and taking action. It is an easy cop-out to ask someone to assist or do something that is unpleasant or takes a lot of effort, like fighting an institution or doing “meeting” duties. You already do a lot, just blogging here every day, producing videos and writing speeches. People need to take that and run with it. It is not your responsibility to solve the world’s problems. You are doing a lot, and sometimes you have to say: enough.

  2. Well, the bad situations one actually I think are some of the more worthwhile ones to at least attempt to deal with, or find someone I know who can deal with it.

    I don’t really see anything hopeless about them. It’s not like these are drama queens, these are people with real problems, and I don’t believe in “every man for himself”, I think part of being a community is assisting other people in that community in emergencies. If when I was having serious trouble of that sort, everyone in the autistic community had said “Sorry, it’s your problem not mine,” I probably wouldn’t be writing this.

    Basically, I think people are interdependent not independent, and that in those emergency situations, if someone writes to me, they at least deserve me pointing them at someone who might be able to help, at minimum.

    And a person in an institution, or at risk of being put in one, is not going to be taken seriously on their own, they can fight all they want and that won’t generally keep them out unless they at the very least have allies who either know what they’re doing or make really good guesses.

    Once they’re a safe distance away from the system, that’s where they have more of a chance to need less of that help, but when the pressure is right there on them, it’s different.

    In fact, there used to be an organization of autistic people who would help out other autistic people who needed it, and some of us are thinking of forming that again, because autistic people are often incredibly isolated and this community might be the only place they have to ask for help.

    So, no, people are not wrong for asking for or needing help, that’s part of the human condition and I know for a fact the people I’m talking about aren’t some kind of awful spongers, because I either know them or know people who know them well enough that this just isn’t the problem.

    (I don’t know how to emphasize any of that heavily enough. Especially because that attitude can cause a lot of people to fear even asking for help.)

    It’s true I do a lot, it’s also true I’m not pointed in the direction I want to be pointed as far as what I’m doing: I’m more interested in practical things, but haven’t been able to get my brain geared up in that direction.

    As far as the meeting duties, I totally agree other people should be able to handle that one, in fact I find it alarming when they can’t, because that kind of organization isn’t supposed to fall apart once you take one or two people out.

    I don’t really blog every day, but I do blog a lot. And while that’s educational in a way, or thought-provoking, or something, it’s still just words, and there’s a lot I’d rather be doing either in the offline world, or that would have more of a direct effect on the offline world.

    I’m not saying all of this in order to make it sound like I should be the one doing all this, I shouldn’t, there should be more resources and more people working on things like this. But at the same time, to call this stuff unnecessary and to say people should do it all without anyone else’s help, is not a good thing. It’s not that people shouldn’t help other people, it’s that I’m not always the best person to ask. I think that too often, people use “They should just do it all themselves anyway, it’s their problem” as a way of feeling better about the fact that they’re unable to do anything for someone, and it makes sense that people would think along those lines, but I’m not going to say that where it’s not appropriate, and it’s not appropriate with the more serious problems I discussed. I can’t help some of them and they need the help, that’s the reality, not just one or the other.

    It would be better, maybe will be better, for some of the practical problems, once we get that organization back again, because then it is a group of people that is being gone to about it, not one single person.

  3. The spam trap thing happens to my blog also. You have my commiserations but really people just need to be patient. Better to miss the odd real comment than be inundated with spam – some of it very sick and nasty stuff.

  4. Well I did keep my comment, I have been keeping comments because of those that have not been appearing, and if my comment on your page was accidentally erased I’ll accept that but I do not think that is the case with anything I attempt to post on either Kevin Leitch’s blog, or Joe Mele’s aspergian blog go astray accidentally.

    Oh yes and I do occasionally disallow comment on my own blog, I have to be careful about the academic one in particular as that is tied in with my position at University for which I am responsible to an ethics committee.

    However back to the point in question. Your DIY guide to autistic spotting was what really got me annoyed. As to the comment I made, I intend to elaborate on that in my own time on my own blog.

    However what I am observing more and more is what I would call a circus or a pantomime on line where people seem to be assuming the roles of the comedia del arte and becoming predictable stereotypes who will comment this way or that way on whatever the matter to be discussed is, in a predictable kind of group think. Yes I do not think autistics are some sort of holier than thou species that is exempt from group think. When you engage in the world, it contaminates you.

    I think you have crossed a particular line, that Temple Grandin and Donna Williams crossed a long time ago, I don’t know whether you are aware of that but you have.

    And sometimes a jerk is just a jerk, I anticipate that is how a bunch of people will again judge me for posting this.

  5. When I tried to link the “Real Voices of Autism” site Trend Micro blocked it and flashed one of those red and white warning flags. The user can disable security and proceed but I didn’t. I have no idea what the perceived threat was. Thought you needed to know.

  6. A lot of this is the effect of (Internet-local) celebrity — your name is becomming better-known, so desperate people send problems to you.

    Even NT’s need to draw lines in that sort of thing. Notably, Neil Gaiman recently announced on his blog that his editor has “commanded” him not to take on any more work or “favors” until he’s cleared his current year-plus worth of commitments. I think Will Shetterly and Steven Brust also have lately posted similar announcements. (These are all well-known, and well-Netted, science-fiction/fantasy authors)

    Not to mention that stuff keeps happing to all and sundry — I.e, Making Light’s server blew up over the weekend, so now they’re begging people to recover their comments from the past couple of months.

  7. I posted a comment on “Poetry/writing challenge responses (set #1)” last Wednesday. When it didn’t appear I thought it was lost in cyberspace, so I posted it again (with minor differences) the following day. When that comment didn’t appear I decided to leave it and not try again.

    I remember the substance of what I wrote. If the comment does not appear in two to three weeks time I’ll probably post it again.

  8. laurentius-rex I hope you do stick around as I have enjoyed your intelligent commments and wry sense-of-humor…You twist the English language in a way that is both deightful and makes me think. That said I was baffled by your earlier post until I saw there is a spam program segregating posts. Frustrating for all concerned I am sure…

    I happen to enjoy Donna Williams creative writings and films…I also read academic neurological writings and don’t fine the need to be exclusive in either of these.

    I found the recent The Excuse to be a Jerk writing to be consistent with what I have observed over many years and more. I found it informative…The Poetry Writing Challenge is creative and fun…I like this element and hope it repeats later on… It is particularly appropriate for this site as Amanda has written poetry much of her life…I found it fun to read what people came up with for titles. There is such a need for just having fun and collaborating on creative endeavors..It makes life the richer.

    As for singing when not being able to speak…the internet is full of support of this with numerous articles about stroke patients, stutterers, and Alzheimer patients doing just that. Most articles site that another part of the brain is involved..
    Many say it is helpful with regular language to do the singing regularly…like an exercise…when normal speech is difficult or not there at all…
    There is documentation too that movement is easier for some when music is involved…Whatever the reasons…I say celebrate the fact that you are able to sing! I myself would welcome a video of your doing just that as I think I would enjoy your enjoyment of singing. Of course there are those who would jump on that but they jump on darn near everything…and they can’t dictate what you do and who your are.

    Sorry for this catch-all nature of my comments…A lot has happened here in a short while.

  9. It wasn’t meant to be a “DIY guide to autistic spotting”, it was meant to be two things.

    One of them was basically, “Here’s a bunch of stuff that I happen to see as connected, that not everyone does.” And the detail seemed necessary because people often take it as really abstract otherwise, and wonder what on earth I’m talking about.

    Another of them was, “Here’s the difference between what I see, and the roles I see others putting people (the ones who look like what I see) into.”

    You say that I have crossed a particular line, and I know you’ve elaborated on what that line is elsewhere: I’ve ended up becoming a symbol in the media that is supposed to represent a whole lot of things I’m not, and in particular I appeared on an awareness day thing (where most of the material was filmed so long beforehand that I had no idea that’s what it was going to be until close to when it was already happening, and where I expected that I would be one of many people, not singled out).

    I’d like to note that if there are demarcation lines on the ground about these things, then they are written in a code that you understand and I do not.

    Which means I could walk right past them unawares, or for that matter be shoved across them when I’m least expecting it.

    After the experiences I’ve had — which have largely been of only finding out after the fact how people perceive various things that they hae expected me to notice and understand all along — I won’t judge anyone for what their appearance in the media is, when it comes to things like this.

    And I think that blaming me for what the media and people watching along have tried to turn that person into, is actually playing right along with the media images in a way. Playing along with the illusion that this was something I could have foreseen or chosen. And playing along with the illusion that my appearance to some people (as a symbol of all sorts of ideas that have little to nothing to do with my life) is actually about me at all.

    And given the fact that I have little media knowledge and I can see my end of what has happened here. And given the fact that you have a whole lot of media knowledge, having actually studied it, something I’ve never done. I would then expect that of all people you’d know to get mad at the people who create these images, not the people who get shoved into them unawares and unwilling while believing that something else is going on. I would have thought you’d know the difference between saying something and having words put into your mouth, between doing something and being portrayed as doing something, between agreeing to one thing and watching another happen, etc.

    I mean, I probably agree with you already, on your take on what has happened. The only part I don’t agree with is your implication that I’m complicit in all this somehow, and that I could possibly know beforehand all kinds of things that only become apparent to me when things happen.

    But then I’ve noticed a lot of people who have a lot of knowledge in a particular area, expect it to be easy for everyone else. It isn’t.

    As for groupthink, yeah it happens in the autistic community and I’ve for a long time been one of the few people willing to admit it. It can be pretty insidious. But I think my main problem right now, is not of groupthink as much as groupwrite: I am having trouble writing what I really want to write about, so I write what I can write about, which is often things I’ve been exposed to recently, in groups of people. And I’m also really out of the loop in a lot of ways lately, and that’s not helping any. And tremendously sloppy in a lot of my writing.

    Which is why I’ve asked people to excuse the sloppiness, because sloppy is all I can do right now, I sort of expect other people to sort out the details and excuse the fact that if I am writing about why a particular stereotype is wrong, I might not for instance, be able to write every nuance of what happens when it’s actually accurate, etc. Or of stereotyping in the opposite direction. Just saying that the “excuse to be a jerk” thing is a bad stereotype doesn’t mean I’m exchanging it for some sort of opposite stereotype. That’s like saying that fighting the “women are airheads” stereotype has to mean believing that all women are some sort of genius-stereotype, or has to mean believing in “airheads” as a real concept, etc., it just doesn’t follow.

    Basically, I don’t see a need for such a conversation to involve “attacking” and “defending” and so forth, because I’m likely to agree with you on a lot of it, and at the same time, disagree mainly on the point that says there’s a way I could have foreseen and avoided everything — me, not you, with my background, cognitive abilities, and set of knowledge, not yours.

  10. I want to congratulate you on managing to maintain the ability to write at all right now. You’ve just had the Internet dropped on your head, and that’s quite distracting. Sometimes your writing is exceptionally perceptive, careful, thought-inspiring. Other times it’s “merely” great. No matter what, I appreciate your commitment to fostering community. Thank you for sharing that daunting list of nineteen important “to do” items that people have asked for your help with.

    Thank you for continuing to share your ideas with all of us.

  11. Oh yeah, and something else: about the online group……..Ivan hasn’t been in forever either……..but the last time he went, he said it was very different from what it was before……….it is in fact kind of like a support group. He told me there were lots of new people, which in itself is no problem at all, but there wasn’t the usual kind of discussion going on that usually happens……..people choose a topic and everyone has a discussion……….I told him it might be because he went in late, so others might have left……not sure though.

    I have another question for you which I’m going to send by email as it’s kind of private about someone else.

    The Integral

  12. Interesting that the person who claims you don’t have the capacity to type somehow believes you *do* have the capacity for manipulating your camerawork to *pretend* you can type.

  13. Thanks for clarifying. I’d just commented on another post and wanted to copy that comment into my own journal.

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