Whose Planet Is It Anyway?

Saturday, June 02, 2007


Brian Deer asked a perceptive question on Kevin Leitch's blog, just before Kev got disgusted with the tone of the argument about Autism Hub and turned off the comments:

...is being autistic like being gay, in that it’s a self-designation?

Or is it like being black: in that other people tell you that you are?

Until quite recently, that question could have had only one answer—society, and more specifically the psychological profession, defined autism any way it felt like it. The idea that autistic people, like other minorities, might be entitled to take the lead in defining their own identity would have been dismissed out of hand. Psychologists were seen as demigods with absolute authority who waved magic diagnostic wands and proclaimed the Truth as set forth in the Holy Book: "thou art autistic."

And in the beginning was the Word...

There's still far too much of that attitude out there, but it finally has started to crumble. Neurodiversity is becoming a mainstream concept, thanks in no small part to the efforts of Autism Hub in spreading the message. And it should be noted, while we're talking about self-designation in the gay community, that gays had to go through the same sort of struggle to gain the right to define their own culture and identity. Until 1973, homosexuality was classified as a mental disorder and was seen as needing a cure. Gay activists and their allies fought successfully to get that diagnostic category removed.

We're only just now getting to the point where it is within the realm of possibility for the autistic community to be culturally defined by autistic people. And what have some of us decided to do with this newfound sense of empowerment? Throw a hissy fit complaining that the parents and professionals on the Autism Hub, who have consistently spoken out against society's abuse of autistics and have taken significant personal risks in doing so, somehow are unfairly preventing autistics from being in control.

This is what I have to say to anyone who has that attitude:

While you're getting so gung-ho about autistic self-determination, why don't you go have a nice friendly chat with Mark Geier and persuade him to stop injecting autistic children with chemical castration drugs. After that, pay a visit to the Judge Rotenberg Center and convince Matthew Israel to be a nice guy and take the electric shock devices off the kiddies. Go talk to the Wrights, Alison Tepper Singer, and Hillary Clinton about their jolly plans for a world with no autistic people in it, and convert them to our cause. After that, you can come back and complain that the Autism Hub parents are interfering with your efforts to define the autistic community.

But until then, just shut the fuck up.

Labels: ,


  • As for the newfound sense of empowerment, it seems others would give it up without a second thought, so long as it looked like there were good intentions. But I know I'm a bad guy for caring about this (and, yes, I do other advocacy work too, as does Larry and everyone else that has become an enemy to the common good in this debate).

    I have no problem with the hub parents. I haven't seen anything that concerns me, although others have indicated things that - if true - greatly concern me, such as discussion of neruoleptics and use on their children. But because I haven't seen that, I'm not going to judge anyone on that.

    I do think our community can improve though. But it sure seems like that discussion is "off limits" to me. :(

    By Anonymous Joel, at 11:28 PM  

  • Well said!

    By Blogger daedalus2u, at 11:34 PM  

  • Yeah, basically, as usual, self-reflection about power and such is totally frowned upon within the autistic community as supposedly excluding "real" advocacy and supposedly fighting all advocacy any ally ever does and everything else nobody's ever said to begin with.

    Seen it before, suppose it will continue forever. Go ahead and villainize any autistic person who dares to actually point out power discrepancies in our own community. Because you know those discrepancies only exist elsewhere, among the "bad guys," and there's no cause for reflection on that among "us", the "good guys". Because there's only two "sides" in the world and everyone has to choose one and stay on it. "With us or against us" and all that crap.

    Give me a break, your reaction and nearly everyone else's reaction on the Hub to all this is out of proportion. What Larry said was, right or wrong, not that bad. The hissy fits came in response to what he said, not in the fact that he said it. And the accusations started flying and before you know it nobody can see what he said and nobody will listen because you're going to paint him as some kind of villain rather than see that this giant reaction to what he said proves he might've had a point or two.

    And you'll go ahead and vilify those of us who actually care enough about our own community to critique it as well as work within it. Because apparently we're only supposed to ever say when things are wrong outside our community. I thought I was joining what's essentially a webring, not some weird personality cult.

    By Anonymous Ballastexistenz, at 11:55 PM  

  • Note that all that happened was someone discussed power dynamics. He didn't compel anyone to do a thing. He didn't censor anyone. He didn't force anyone to do a single thing. He just tried to start a discussion about priorities and power.

    Then people started getting super-super-offended at the idea. Of a discussion.

    And now you and everyone else are threatening to tear the entire community apart over... a discussion.

    Think about what you're doing before you tell people to fuck off.

    I'm not going to fuck off, I'm going to keep doing everything I've been doing, which includes the kind of advocacy you talk about being good, and which includes critiquing power structures from within organizations I happen to be involved with (which you apparently think is a world-destroying no-no). They're not mutually exclusive. Fortunately the world isn't as black adn white as you seem to think it is at the moment. And real allies don't run off (or threaten to do so) every time they hear something they don't like.

    By Anonymous Ballastexistenz, at 12:13 AM  

  • I just don't think that what Larry did was a critique, maybe it started out that way, but he ratcheted it way beyond critque into meaningless meanness, very quickly. I don't see what Larry said about the content of the hub was a critique, it was so off base and he refused to explain it besides.

    What he originally said Kristina seemed to have some merit, but I couldn't really tell what he was trying to say Kristina as it was so opaque (deliberately opaque).

    His point that autistic advocacy "leaders" need to be autistic is true of course. They are in my eyes, all of them. In the eyes of the media, maybe they see some who are really autistic as not autistic and some who are not atuistic as autistic.

    It's not like that kind of stuff is easy to manage. The wider world has almost everything wrong about autism.

    I don't have a problem with someone saying that Estee and Kev are "pillars" in the autistic advocacy whatever, neurodiversity whatever, movement...whatever...

    In my opinion, this is what precipitated Larry's anger, that a bunch of putatively non-autistics were getting the attention from the wider media that he thought should go mainly or only to autistics, or maybe only certain autistics.

    So what? It's not like they are being invited to Buckingham palace where they, Kev and Estee, then pretend to be the only voices of autism.

    If they tried to do that we'd have something to get huffy about.

    Larry's also seems to be angry that moms and dads are blogging about their kids and not referencing autistic advocates, ever or not often enough. I can't get angry about that one way or the other. People talk. They talk about what's interesting to them.

    I'm totally ticked off at his criticism (pointless and unmerited) that the hub has too much about mercury. He didn't cite who he was talking about and he's so badly uninformed of how BAD the situation is that his criticism is just so much stupid hot air. No actually the hub doesn't have enough stuff about mercury on it. Not enough by far.

    Larry could have done some fact finding, some kind of respectful dialogueing, even Larry is capable of that. I think he got in a snit and decided to start a war. I really think that was part of what you see, the reaction that Larry really wanted. He got exactly what he wanted because at some point he changed from making critiques to throwing Molotov cocktails and laughing all the while.

    I could be judging him too harshly, but I don't think so. I think Larry at some oint got his feelings hurt and started to see more benefit in tearing down the hub and whatever else and destroying than in building up.

    Larry has made really snotty comments about blogging period, in the past, IIRC. It's not like he has a lot of respect for blogging, or do I have that wrong? He started a blog reluctantly. Kev didn't need to add him to the hub, either, but he did. And Larry didn't ask to be taken off the hub in protest did he? That's what I'd do if I thought it was so awful.

    This isn't a commentary on ABFH's blog. I haven't read it closely enough to agree or not agree.

    By Blogger Camille, at 1:08 AM  

  • "After that, pay a visit to the Judge Rotenberg Center and convince Matthew Israel to be a nice guy and take the electric shock devices off the kiddies."

    Given half a chance, I'd put a grown-up version of that GED on that bastard and leave it on... powered up. And I'd only take it off when he engaged in the correct behaviour himself: which is to cease and desist from using it himself.

    By Blogger David N. Andrews MEd (Distinction), at 3:56 AM  

  • I will not "shut the fuck" up

    No one has yet managed that feat with me, I know who the enemies are and I am quite busy engaging with them in the offline world as well as this little sideshow of a sideshow that everyone inflates in importance to the be all and the end all of autistic advocacy and culture. Neurodiversity it is not, as has been explained Autism is just a part of the spectrum of Neurodiversity and proper attention to that requires overturning a lot more applecarts of those who divide and rule by reference to DSM categories.

    There is a lot more I could say about the hub considering what has come "out of the woodwork" lately suffice it to say that there are bad attitudes here, I did not invent them.

    For what it is worth your hectoring post here is an example of that. Whatever happened to democracy then, that you want internal dissent to "shut the fuck up"

    Yes it is getting like Animal Farm in here.

    By Blogger laurentius rex, at 4:04 AM  

  • Camille if you are interested, Molotov was satirised as squealer in Animal farm for his relentless defence of Stalins policies.

    Stalinism was the ruthless suppression of dissent.

    Squeeler it was who relentlessly vilified Snowball and altered the history of Animal farm.

    I think the parralels are just a little too close considering the motives that are being imputed to me now. Characther assasination is always seen to be more effective than self examination.

    I left it up to the bloggers themselves to look at themselves and see if my criticisms had merit.

    And even the guy who lobs a Molotov into the room and runs has to have an extreme motivation to take such a risk in the first place, has to be driven to it when patience has been exhausted.

    It seems to me, that what I am seeing now is no less than what the Lenny's of this world are criticised for. I guess the next thing I will read is that I am not autistic enough or disabled enough?

    I hope not.

    I can do it too impute motivation, read things into others posts. lets see maybe people are sighing with relief and thinking, "Larry is a nasty piece of work, we were right all along"

    "Larry is an intellectual sham, postmodernism has nothing to contribute so we don't have to excercise our brains any more"

    When people are imputing personal motives, implying that I am laughing, when people are telling others "to shut the fuck up"

    Then I think some bitter truths have come out and honestly no-one can claim any pure right to be better than those they denigrate. The hub is becoming as nasty and as backstabbing a places as EOH. I am not doing it, you are doing it to yourselves ......

    By Blogger laurentius rex, at 6:53 AM  

  • What I wrote last night on my blog, reposted here:

    I’m still dealing with asthma problems and those are my top priority at the moment. It’s been difficult to turn my ideas into words lately, except in direct response to others, and even that is incomplete. But a few things:

    Working within an organization and critiquing its power structures, even harshly, are not mutually exclusive.

    Communities that can’t handle dissenters aren’t real communities, but can certainly grow into them if they learn to handle dissent by doing something other than a Chicken Little routine.

    Good allies don’t threaten to cut off their support every time they hear something that makes them uncomfortable.

    Conflict won’t destroy a community, but thinking it will just might. So will incessant pettiness.

    Critiquing the priorities and power of a group that someone belongs to might just be a sign they care about that group, not a sign that they are evil incarnate or “infighting” or all that crap.

    Critiquing power structures that benefit certain people above others is not the same thing as saying these are bad people who must go away and leave us alone and that we don’t appreciate them.

    Having impure motives doesn’t make someone wrong or wholly evil or to be castigated for those motives while ignoring some of their real points, focusing entirely on speculating about people’s motives is a good way to avoid issues though.

    At the same time, it’s not always our job to reassure you that you’re not evil and awful and stuff. At some point just decide that as axiomatic and move on to something constructive like figuring out what’s right and wrong and trying to do what’s right.

    Disagreeing on how things should be done doesn’t mean people can’t work together or that the entire community is falling apart at the seams.

    Sometimes a person’s disagreement comes out forcefully because they’ve been hiding it for a long time, knowing what kind of reaction they’d get if they said anything. Doesn’t make it less valid.

    Anyone who thinks the web is or should be a comfortable safe place like their living room hasn’t been paying attention. (Edited to add: Anyone who thinks everyone even has a living room, or that everyone’s living room is comfortable and safe, hasn’t been paying attention either.)

    Communities aren’t about liking each other, they’re about bothering to do things for and/or with each other even if you don’t like them. Likewise advocacy involves sometimes gritting your teeth and doing things alongside people you don’t like, rather than sitting there grumbling about why you don’t like them (and by “don’t like” I’m talking personality conflicts here). Even if they’re grumbling pettily about you.

    Just because someone agrees with you on one issue doesn’t mean they have to agree with you on everything.

    Nobody has a right to be comfortable, for certain values of ‘comfortable’ anyway. Your feelings being hurt shouldn’t determine large-scale political stuff.

    Someone disagreeing with you doesn’t suddenly mean they’ve taken every single stance against you that is possible to take, it just means they’ve taken at least one stance that might conflict with some things you believe in.

    Disagreement won’t tear apart a community. “You’re with us or against us” thinking will. Responding to disagreement in a Chicken Little sort of manner will. The sort of thinking that gives rise to “You’re with us or against us” and “The sky is falling” was in existence before the dissenter in question ever opened his mouth, and is a serious problem that needs to be worked on if you want your community to last. And the very existence, magnitude, and nature of the reaction he got, proves he had a point, and you don’t have to agree with him (or anyone else) 100% to notice that.

    This sort of thing is too petty and stupid to make lasting enemies over (although some people sure seem to be trying, and it ain’t Larry who seems to be trying the hardest to make enemies here), and it’s why the autistic community doesn’t stand a chance until people move beyond petty personality conflicts and into shared principles.

    I’ve seen this all before. I’m not at my most articulate right now, I’ve mostly been struggling with breathing all day in between trying to comment sometimes. But all I’m struck by is how Larry saying one little thing seems to have set off something that already existed within this community and that was just waiting to ignite. And that thing that existed worries me a whole lot more than anything Larry said. Don’t see dissent as a threat, see it as a source of strength. Don’t issue with-us-or-against-us ultimatums and lash out and bicker yourselves to death about who said what. Otherwise you’re doomed even if you never do get open dissent of this nature again: If this community is that fragile it’ll be ineffective in ever getting things done.

    Breathing trouble has a funny way of shaping one’s priorities really fast. And I know that I would rather not literally waste my breath trashing people I’m mad at on a petty personal level and feeding the flames. I’d rather respond to the parts of this that I can find that are constructive and get on with trying to do the right thing. I have limited energy and I’m not going to waste it either lashing out at people or coddling and reassuring people who as a whole have some combination of more air, more energy, and more political power than I have at the moment. They can do that for themselves. You can turn this into a constructive discussion to make this community stronger. Or deal with the consequences of not doing so. It’s your choice. I have to go to bed.

    By Anonymous Ballastexistenz, at 7:36 AM  

  • I just wanted to pop i an note something about the mercury discussion. It comes up on my blog a bit, not because I particularly care about mercury itself anymore- the science speaks for itself- but as a parent, I get INUNDATED with email, walk-up commentary, junk mail, and other parents in my face screaming about how mercury poisoned my son, and therfore I have to do what they do to fix their kid. So it ends up getting talked about a lot, because others are bringing up the subject; and it gets blogged about alot because it becomes what I'm thinking about- also fun things like HBOT and currently, predisone. Quack treatments. Quacks in our faces, telling not only us, but our lawmakers and school personnel what to do with MY kid.

    And its MY blog. For MY thoughts, and the problems I am facing as a parent raising an autistic child, and what I am seeing from my perspective- which, right now, is that of a very, very tired person who can understand why other parents are feeling attacked by the comments being made. After all, we are used to having to be on the defensive, we have gotten used to watching for the subtle attacked couched in words, the quietly clear message that we are of no worth because we're "just parents."

    By Blogger Joeymom, at 8:30 AM  

  • But then I can see the other side too. These things need to be discussed without hysteria to move on as a community. I dont think anyone is saying that autistic people are always right, just that it's vital that they are allowed to voice those opinions. I moderate on a forum where an autistic member thinks the puzzle piece is an ok representation of autism. I'm not about to agree with her over that one, irrespective of her diagnosis, but if she was to say to me that as an autistic person she had concerns about xyz on the forum, I'd take that pretty seriously.
    I also think we need to set aside personal feelings here.I wouldnt like to see discussion stifled because people need to feel comfortable.

    By Blogger Beth, at 8:45 AM  

  • After all, we are used to having to be on the defensive, we have gotten used to watching for the subtle attacked couched in words, the quietly clear message that we are of no worth because we're "just parents."

    And I think that's the problem right there.

    People who are used to being attacked from above, rarely realize it when what they perceive as an attack is someone trying to crawl out from below them.

    By Anonymous Ballastexistenz, at 9:29 AM  

  • Larry has a better chance of gaining respect for autistic people once disassociated from a bunch of nitwits who don't want children who function like zombies to get any help whatsoever.
    If I can't cure my son, I might have enough success to keep him from being institutionalized. Then I'll look to someone like Larry who isn't constantly bashing people who have committed their lives to helping these kids who can't do anything for themselves.
    I can only hope other autistic people among you see how the anti-cure crusaders have given all of you a bad name. You have all been used by Kevin, Kathleen, Camille, Estee, Cubbins, Stanton and Joseph as pawns in a game to deflect blame for the drug companies.
    I guarantee you that every member of EOHarm is on your side in promoting advocacy without these nitwits who hijacked your movement to protect Pharma. The above mentioned nitwits are enemies of all autistic people and all parents of autistic people.

    By Blogger Fore Sam, at 9:35 AM  

  • Nobody can say you have no passion on the subject. I guess I better get over to the Hub and see what all the hub-bub ; ) is about.

    We as 'parents' just try and deal one day at a time. Our family's story came out today on the front page above the fold of the Salt Lake City newspaper, The Deseret News. The story link is: http://www.deseretnews.com/dn/view/0,1249,660226195,00.html

    Please check it out and comment on our blog: http://autismbitestheblog.blogspot.com/

    We want what is best for our children. For us that means doing all we can to help them be happy and to communicate in or with an NT world. Also to protect them from people who only see the world beyond their own small minds. Peace, love and blessings...

    By Blogger Dadof6Autistickids, at 2:04 PM  

  • I don't see it your way Larry. I apologize for emphasizing that you lobbed Molotov cocktails and **laughed**. I still think you were very irresponsible in the way you presented your arguments, even if you weren't doing it with some glee.

    I saw glee, but maybe it wasn't there.

    My history knowing about Larry, if not actually knowing him personally, goes back about 3 years, it's not as long as 8 years, but 3 years is not 3 days, either.

    I'm just so not impressed with Animal Farm analogies and history lessons, does that make me a lesser being? I also don't think ABFH should have told anyone to shut up, maybe she meant she wished that people would stop saying one particular thing. I don't know.

    I think the hub has done totally incredible things for getting the voice of autistic adults out of aut advo and ANI-L or whatever other lists there are that are more or less private.

    I think the hub has done amazing things and will continue to do so, even if Larry thinks it's not big deal. I think it's a big deal. And I don't think Larry needs to take himself off the hub, either. He's not hurting anyone if he keeps blogging his perspective, especially if he does so without comparing people to murderers, and if he can explain what he means when he says thing that are utterly opaque, and or obtuse.

    If the Hub goes on and does incredible things for real life autistics, saves lives, etc. That doesn't mean that Larry's advocacy can't do the same. It would be nice if Larry could admit that the hub has done fantastic things, but no big deal if he can't see them or won't admit it. The real world effects are fantastic and they aren't just the work of "parents".

    By Blogger Camille, at 7:14 PM  

  • Catching up here. I have no idea what a personality cult looks like and power plays are Greek to me. What is clear to me is that Larry accused people of doing a great many things and when called upon to put up or shut up, did nothing at all. Is that the kind of advocacy anyone wants to endorse?

    Where was the critique - a properly reasoned critique, which would at least be respectful, of Kristina's essay - whatever that was? Can I get a copy?

    I'm seeing a double standard here. Outright rudeness is OK, throwing accusations around, entirely unsupported is OK. For what - because there is a power imbalance? Is that reason enough to condone and excuse bad behaviour because it's coming from the underdog?

    By Blogger Alyric, at 8:03 PM  

  • Of course, mega-imbecile ForeSkin is having a field day with this issue.

    By Blogger David N. Andrews MEd (Distinction), at 4:39 AM  

  • Camille -- yes, when I said that anyone with the obnoxious attitude that I described should shut up, I was referring just to that particular thing. I was not suggesting that any particular person should stop blogging, or be silenced, or that dissent should be suppressed, or anything like that.

    If, as Amanda suggests, I misunderstood certain posts and comments and there really isn't anyone who has that attitude, then there's no reason for anyone to feel offended by my post. (And I hope your asthma improves soon, Amanda.)

    By Blogger abfh, at 11:02 AM  

Post a Comment

Links to this post:

Create a Link

<< Home