Want more contributors to Getting the Truth Out

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I never intended Getting the Truth Out to just be about me. It ended up that way in part because midway through promoting it and trying to do various stuff, I ended up without consistent Internet access for a couple months. (First living on the streets for a few days then relocated to a studio apartment with no phone line and a constantly-there roommate, parrot, etc — long story, but not conducive to getting anything done online.)

I’d like other contributors as well.

The format should have a few loose elements in common with the format I used: There should be an introductory section that shows you in the most pathological light you can manage (but still realistic to your life), and then it should switch somewhere along the line to your actual political views about autism.

And your actual political views don’t have to be absolutely identical to mine, but pro-cure stuff isn’t going to be posted on that site, nor is stuff that’s hateful towards some kinds of autistic people. (If you want to talk about how wonderful HFA/AS people are and how awful LFA people are, or vice versa, find somewhere else to do it.)

If you have trouble making photographs into black and white or resizing them, I can do that for you.

Also the pathologized part should be realistic. As in, it should be stuff that really could be said about you if someone were to sit around and pick you apart as if you had a disease. I could not say, for instance, that I smear feces, because I don’t and never have (even if I’ve done other “bizarre” stuff with bodily functions, which I have), but if you do (or did) you could mention that if you wanted.

And for the pathologized part, it doesn’t have to be a portrayal of the exact same stereotype I’m portraying. One person I know is thinking of doing one that focuses a good deal on her sad lack of a social life and the fact that she’ll never marry and spends most of her time interacting with a computer. The point is to definitely portray yourself, but portray yourself in a way that’s warped by that pathological, medicalized, destructive, tragic view of autism we all know too well. (An example of a non-disabled person doing that to himself for the purposes of making a point, is here.)  And then after you’ve done that for a bit, to discuss your real viewpoints about being autistic and what that means to you.
It also doesn’t need to be as long as mine.

The format I’m planning on, is to have a page that has one picture of each person who is on the site, along with a name. (It can be a real name or a pseudonym, just let me know which.) Then a person can click on any picture they want in order to get “that person’s story”. Told at first in a pathologized and third-person way (“She,” “This person,” etc, not “I”) and then in the first person once you get past that switching point. (Again, same general structure as what I did, but different photos and different things being said.) The reason I’m asking for realism is because one of the first things people can say is “But none of that is true,” and I don’t want to give them a chance.
So if anyone’s interested, my email address is the same as:

http://ballastexistenz.autistics.org/

Take out the http:// at the beginning and the / at the end. Then turn the first . into an @ and you get my email address.

Oh, and for those who don’t know yet, Getting the Truth Out was a reaction to the site http://www.gettingthewordout.org. More of my reasoning is explained in the article Autistics Speak. (The anonymity had to be partially dropped. But the reasons for the initial anonymity are explained there, as well as much of the reasoning behind the site.) So if anyone wants to contribute, please email, it’s not supposed to just be a site with one person on it.

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.

25 responses »

  1. wow. i only just realized how ashamed i am of some stuff. thinking what i could write and then thinking, “but I don’t want anyone to know that!”

    but if my life had turned out different (not in “functioning level” so much as how-i-was-treated level) i would have had all these things and more subjected to more or less public, and definitely undignified, scrutiny by “experts”.

    another idea that you guys have always been trying to explain about power and institutions and all that has just clicked; i know i may never really know what that’s like first hand (please God) but i am a little closer to “getting it”.

    (does this make sense at all?!)

  2. Don’t think that would work with me, for whichever way you photograph me, I am still Larry, that is to say I think my face is too distinctive and recognisable and I’m not shaving the tache off just for effect.

    Photographs of me in Colour and Black and White abound on my website.

    Now if I wanted to do an excercise like that it would be more likely for me to deconstruct myself on a class bias, in that I can do a nice photo essay on the degradation of a crime/drugs/arson ridden estate and say how can anyone rise from those surroundings to have any standing in the community at all, being as my real life surroundings would come as a shock to many people.

    As for a hatchet job on me, this has already been threatened on alt.support.autism

    “just putting togetger

    http://www.larryassholearnold.com

    will be around in a few days time i have someone sorting it out for me,it will have photos of larry and have some nice stories about him to make people laugh”

    Not very nice is it?

  3. My face is fairly recognizable too (to people who aren’t face-blind, and recognizable enough that even some who are have no trouble recognizing me), but I hadn’t had it up in awhile anywhere, so most people didn’t know what I looked like. So that worked out okay. (And most people I was aiming the site at, would have never heard of me in the first place. I wasn’t aiming it primarily at the autistic community, or for that matter necessarily at the ‘autism community’, in which people still don’t mostly know who I am anyway.)

    …and there’s a reason I avoid a.s.a. Yecch.

  4. Its not your face it’s your eyebrows that gave you away to me and I am quite prosopagnosic :)

    Interestingly enough I saw Mozart and the Whale recently. Well I did not sit all the way through as it bored me as I am not into “human interest” stories and I was only viewing it because I owe it to myself to be familiar with it.

    I though the portrayal of the protagonists apartment to be overdoing it somewhat, but looking around me at the moment I am not so sure.

    I could probably do some shots around my flat and equate that to lack of executive funtion, and my lack of EF needs no exageration.

    I suppose a close up picture showing my teeth don’t look to hygenic either, I do brush them regularly but I do not go in for cosmetic dentistry and it shows.

    Maybe I could portray something relating the classic stereotypes to extreme isolation and vulnerability in the community.

    Trouble is I am going into Hospital on Thursday and that will put one of my arms out of action whilst I am recovering so may not be able to handle a Camera for a while (don’t want to drop it)

    In the meantime I will think about it.

  5. If your mustache is part of your face, my eyebrows are part of mine. ;-)  So’s my incomplete goatee but that doesn’t show in most pictures.  That’s one reason I’ve always resisted shaving/plucking/etc of facial hair, I wouldn’t recognize myself.
    I recognize you by your hats and your mustache. I had trouble recognizing you when I saw pictures of you with your hat off.

    My local face-blind friend does it with me by eyebrows and mouth position.

  6. I wouldn’t worry about the larryarnoldasshole thing – really you can take as a sign that you’re famous if you want! All those politicians who got attacked on Spitting Image all took it in their stride.

  7. I put a link to this entry on my blog on the off-chance I have readership with autism that you don’t (unlikely). But it also gives me the opportunity to congratulate you on Getting The Truth Out – Getting The World Out was awful; I hadn’t fully understood what the “Tragedy Model of Disability” was before I saw that.

    Getting The Truth Out is just great. Well done and best of luck with its expansion.

  8. Amanda, on Larry’s site you mentioned that you were trying to get in touch with some ‘anti-torture folks’ but was unsure as to how you should approach them. I was wondering if you could tell me which anti-torture people you were talking about, as I might be able to suggest how best you might go about contacting them.

  9. They’re individual people I know who are involved in organizations I don’t know the names of. I keep not being able to get together with them (despite a mutual interest in conversation on the subject) for purely logistical reasons (health, transportation, remembering each other’s phone numbers, their work schedules, etc).

  10. Would really like to contribute if I can get something together. Will probably take a while (likely weeks) to finish everything, though.

    I think that the “perpetual child” and “her autism is dangerous and life-threatening because she’s not ‘high-functioning'” stereotypes will play a part, considering the number of people who’ve discussed me that way.

  11. Amanda: sounds a lot like my attempts to get a group together to discuss trade unions in my workplace. Are you actually trying to get an actual meeting to happen, where the group can make decisions about things, or are you just trying to meet up with them for a chat?

  12. I just want to talk to a few of them about ideas (preferably one at a time), not hold a meeting. Believe it or not it’s been hard to get together even for that.

    Basically my plan is to try to get ideas out to get various communities talking (I want to see if any of the anti-torture people are willing to ally with us on the aversives/JRC/etc stuff — from my short descriptions the few I know have seemed interested). I can’t go to strategy meetings far away, I can’t even be a reliable warm body at protests (I totally fall apart in those circumstances, and become a liability more than anything), I can barely make it to the state capitol to talk to legislators (and then I fall apart for ages afterwards), and in fact most of what I can do isn’t all that reliable (which is one reason I’m not more involved in all this stuff) so what I can do mostly is exchange ideas with people and try to get people working with each other who all can do the work.

  13. Amanda, in that case it might be best to talk to them over the net rather than meet up in person. Send them emails asking for their opinions and ideas. Are these people in different areas or in roughly the same locality?

  14. I need to figure out some video capture or turning my tapes into AVIs or MPGs/MOV/WMVs somehow. There’s a lot of footage that would fit the bill of the reality contrast between something that seems pathological and the introduction of “self-determination rights and views about my desire to exist and be here.”.

    I only have my words now. My words are that I am glad I exist. I have been through a lot but that “a lot” includes not only the extreme abuses but also extreme happiness, excitement, beauty in contrast. Some people even envy the contrast I’ve had in life speaking that they feel like their lives were more dull.

    I wouldn’t wish my pain on anyone but I’d take it back tenfold if it meant the difference of not being able to live out my life. People vary on their “outlook” of life and its value….but it is disturbing when I see that value assumed by others who are in not in a position to value it. Only the self can determine the self’s true worth.

    I hear inspirational stories of people who have been awake on lung machines for months who experience painful burning every minute of the day from burns…not just externally but in their lungs too who want life more than some of these kids who jump off the school because they got dumped by the high school stud. They say that with pain comes not just appreciation but a kind of tranquility like the body no longer matters and that it’s all “soul” now. I have experienced a taste of that. I know the inspirational stories are not 100% like what the narrators often says. There are days I curse my birth out of depression but I’ve gotten past the pity that goes so far as to want to give up this “soul” that I’ve been able to get close to in the process of the crap. In some ways, I think pain is good. It is a survival mechanism and so that’s why I don’t believe in a “problem of evil” based on suffering. There could just as easily be a planet where there were other mechanisms besides a pleasure pain principle (there are people who have this condition too). Without pain, there is no pleasure and without pain, the drama of life becomes stale and tasteless. Pain is a stimulation that many enjoy so who are we to judge that’s it’s bad and therefore some all-wise being allowing it to happen is “bad”. Yes, it feels bad for most but it’s also an experience of the mind that is itself the source of many kinds of wisdom.

  15. Should also add one corollary. The self is also the one for which self-worth matters most. It might seem circular but it’s not….it’s simply two facts that happen to have some inverse but not in function. Mattering and determining are not the same.

  16. Was just reminded of this page [http://www.isn.net/~jypsy/AuSpin/a2p2.htm] by AFF and thought, you could contact some of those ppl to be in your site. Or you probably already thought of this?

  17. sorry for unclear english; I meant that someone posted about that site on AFF, which reminded me of the site which I had seen before and forgotten, but I was too lazy to go back and look at who had written the post, so I tried to say that AFF reminded me of it.

  18. Pain is usefull it has its purposes, I refused to take painkillers every time the nurse came round to offer them.

    Pain is very sociological, not in the person at all, but relating to how one relates it to ones surroundings and interactions, ultimatley one can extinguish entirely by selective attention, as I managed to do, stimming away on my hospital bed to a brilliant performance of Steve Reich’s drumming at the BBC proms I was listening to on the headphones. The performance was so Larry I was totally in it, but then again since Reich is Moondog and Gamelan influenced and so am I what do you expect? Good job no one interupted my right sided stimming, they would thought I had a hundred volts running through me :)

  19. I often find some body part that isn’t in pain and stim with that part. I do relate to that aspect. I’ve had dryer level voltage kicking me around before. The reason for survival was that it didn’t cross into the heart like it very easily could have. (being that it’s like a huge battery of saline and hence ionizable liquid). This was while working on a water pump.

  20. It does strike me, still thinking about the idea of getting together with anti-torture activists, that a campaign around a specific issue might be a good idea. For instance, if some kind of campaign was launched against the JRC. That’s why I asked if they were spaced out around the country – if they are then they would be able to try to set up a national campaign by working in their own area.

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