To be finally free from entanglement.

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It has been a long time, longer than probably anyone but my closest friends could guess, since I have felt comfortable being on the Autism Hub.

It was okay at first. It seemed to be similar to a blogring (anyone remember webrings?), a place where links to various blogs were collected by someone I barely knew who happened to like those blogs a lot. But then it became a community.

Online communities can be good things, but they’re complicated. They seem to sprout cliques (which start out innocently as groups of friends then harden their walls when conflict occurs), feuds, and drama faster than my head sprouts hair. Often faster than I even notice their existence. And then things get even more complicated. People have arguments that mysteriously seem to line up with the same sets of people on each side most times no matter the topic. Other people start insisting that since we’re all in the same community, we’re all really on the same side — since we supposedly all want the best for autistic people (even if it’s clear we don’t all, and even when people have totally opposite ideas of what “the best” is). Communities of this sort often come with massive strings attached.

I do want to make a few things clear though: I have friends in this community. I have people I agree with in this community. (Those two groups are [gasp] not identical! Would that more people understood that.) I have people I respect greatly in this community. I don’t respect them any less for remaining there when I leave, that’s a personal choice everyone has to make for themselves.

I am leaving the Hub (whenever Dave gets my email or reads this) but not leaving for want of those things.

I am also not leaving because I have changed my views on autism or disability. I am leaving in part because of those long-held views. Not leaving because of any recent events, in fact I have remained oblivious to most events recently due to lack of time and energy (if had more energy would left sooner). Certainly not leaving because of any one event or person.

Why am I leaving then? Half of it has to do with the complications of this kind of community and a desire not to become entangled in the strings attached. And half of it has to do with the long nagging of my conscience and ethics.

Review of something often point out: I am not primarily an autism blogger or a neurodiversity blogger, not in my mind anyway. I am a person who operates from various (not widgeted so there is no good name for them, this not being a putdown for widget-users but my inability to do more than rudimentary widget-work) ethical principles and applies those throughout my life, some of which involves blogging about events in my life and the world around me, from that particular point of view.

I usually deal with disability rights topics. I have noticed that people with cerebral palsy who blog from disability rights standpoint about events affecting them and other people with CP are not called “CP bloggers” at anywhere near the rate that autistic people doing the same get called “autism bloggers” (in fact when I google “CP bloggers” I find mostly stuff about Club Penguin, whatever that is). On the other hand, I can make an entire video dedicated to a girl with CP trying to say the way she and I (and many sorts of disabled people, and nondisabled people who happen to come from nondominant cultures, etc.) have been dehumanized on the basis of our way of communicating and interacting with the world, is incredibly wrong. And end up on television represented as if the film is about letting people into “my world” of autism (which is something Sue Rubin said about her film but I never said about mine, in fact voiced strong objections to that whole idea). [headdesk]

So to me, I am primarily an ethical blogger, or a political blogger, depending on your definition of political. Possibly even a disability rights blogger even though that’s still not the entirety of my point. Not primarily an autism blogger. So while I do happen to want the best for autistic people that is too narrow to be considered central to my reason for blogging or my de facto membership in a community that used to just be a blogring at the time I joined it. And I guarantee that my idea of what’s best for us is totally different than a lot of what I have seen on the Hub.

I have seen ableism running rampant all over this community. I have seen those who try to counter this ableism, be they blunt or diplomatic, treated as if just making trouble or being mean. Although the blunt ones are treated worse, in yet another stunning display of ableism (gee, autistics, blunt? Who would figure?).

I have seen vile hate speech be more readily allowed on parts of the Hub than the non-hateful speech of autistics (and even some allies) who simply disagree with people in those parts.

I have seen all manner of pseudo-allies as well as fair weather allies who retreat into their privilege and leave autistics hanging when the going gets tough.

I have seen people who are on the Hub for primarily scientific reasons whose ideas about actual autistic people range from inaccurate to degrading and patronizing. I have seen parents do the same. I have seen autistics get treated terribly for pointing this out. The old power structures — professional over parent, parent over autistic (recognizing that this is simplified because any one can also be any of the others) — still hold strong on parts of the Hub.

I have seen a lot of medical model ideas floating around. I have seen people treating the education of autistic people as if it is therapy. Even people promoting so-called treatments of autistic people, that are identical to ones some of the autistic Hub bloggers were harmed by as kids, but if we say something we are either ignored or patronized and treated like we just don’t understand.

I have seen “biomed” become the latest in a long series of different “bad guys” who are supposedly the opposite of “the neurodiverse”. Even though there are “biomed” parents who do a better job of understanding and fighting the societal forces that make the world such a nasty place to be autistic, than some Hub parents who seem to all but embrace those forces.

(I know some biomed stuff is terribly dangerous and needs opposing. But on the Hub it’s turned into good guys and bad guys and I don’t believe in good guys and bad guys. The world is more complicated than it looks in this community sometimes. I don’t like being in close proximity to these distortions.)

And for that matter the whole cure topic gets oversimplified the same way. While I strongly disagree with the notion of cure and all it represents, not all decent people have even heard of my point of view and not all decent people would agree with me once they did. I have worked right alongside people who want cures (some of whom even did “biomed”), in order to fight for good adult services, against restraints and seclusion, against institutions in all their forms from huge to tiny and stereotypical to stealth, and a lot of other issues that we can agree on. And I have met anti-cure people who are aspie supremacists, who do great harm to autistic people (especially those they perceive as inferior), and who I would rarely if ever find anything to agree with them on, not even the reasons for opposing cure.

And I have seen a lot of personal fighting that may once have had a point but now seems to just go endlessly in circles. If I am going to fight for something, I want it to be something that at least makes progress in a useful direction. Comes from not having much energy to spare.

I am not interested in going into who did what. I don’t even care who does these things, I just care that they are being done. I won’t answer or print any comments going “Is it me?” or “It is me and you are attacking me.” Or anything similar. That is just point-distraction.

I still have limited time can spend on the Internet and limited time can read and write on blogs. Have found that I no longer even wish to allow the pretence that I am part of this community. General-sense disabled and autistic communities, maybe, this particular little community, no.

Again, my viewpoints haven’t changed, my friendships haven’t changed, my people respect (including some I have criticized) hasn’t changed, and I don’t even think would necessarily be a good thing if the Hub didn’t exist. I just had to get out, for reasons that are entirely my own.

I know this decision is the right one because it feels like freedom rather than entanglement. It feels like being able to think again. It feels like breathing after long suffocation.

Or as Anne put it in her blog post about cutting her ties with the transhumanist subculture:

And I don’t have any problem being friends with someone who still calls xyrself a transhumanist, or engaging in respectful discussion with such a person. With very few exceptions (e.g., Nazis, Raelians, Amway salespeople), I don’t care a lick what someone’s associations are — I am very much about taking people on their own terms, probably to a fault.

[…]

I’ve just realized that I don’t owe anyone anything for having the interests I have, nor do I need to be a “member” of any transhumanist organization in order to have the kinds of interesting discussions that I’ve always been interested in having.

If that’s somehow not okay with you — well personally I don’t care, but you might want to seriously examine your thinking. I can’t survive cognitively in environments that force everything into false dichotomies, and nobody should feel hurt, slighted, or bitter because of my doing what I need to do for the sake of being able to actually use my brain.

And that says it all.

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.

17 responses »

  1. I’ve never been a member of the Autism Hub, but i’ve had several people suggest i join or ask me why i wasn’t a member of it. My main reasons were a) i didn’t actually know (and possibly still don’t know) how to get on it, and b) that i wasn’t sure that they’d want someone who posts about a very wide range of topics (although they’re all connected in my head, the connections are probably in the realm of what you call “widgets”), and only occasionally directly about autism (although, of course, everything i write is “coloured” or influenced by my autistic perspective).

    You’ve made me realise another, perhaps subconscious, reason though – that, yes, the whole idea of “autistic community” is a bit… odd to me, and potentially loaded with all sorts of ideas that are arguably very prejudiced against non-autistic disabled people (as well as the hierarchies within and between autistic people). I’d identify much more strongly as a “disability rights blogger”, or even just “disability blogger”, than “autism blogger”. (Although, if i was to choose just one word to preface “blogger”, it would most likely be something like “anarchist” or “libertarian”… if both those words hadn’t been massively distorted in popular political discourse from their literal meanings. Or maybe “anti-hierarchy” or “anti-oppression”… but, yeah. Widgets, so i’ll stop.)

    My blog is sort of “down for refurbishment” at the moment, but, ironically, one of the things i was intending to do, once i’d got it refurbished into a form i’m happy with, was finding out how to join the Autism Hub. I now probably won’t, though…

    (You’ve also reminded me that i need to get in touch with Anne, so thanks. Also, thanks for inspiring me to start blogging in the first place, if i’ve never said that to you before.)

  2. It is very easy to say, “I want society’s definition of acceptable human to be stretched far enough to include me.”

    It is very hard to say “I want society’s definition of acceptable human to be stretched far enough to include everybody, including people very different to me, people I don’t agree with, people I don’t like and people I benefit from having power over.”

    I am not on autism hub and am not autistic. I think that what you have said, however, is very relevant to me.

    When I decide I’m a “good guy” then it makes it very hard for me to see when I’m wrong. When I decide I am a “good guy” I stop listening to thoe I am allegedly helping and start speaking for them. When I decide I’m a “god guy” I can ignore my own privilege. When I decide I’m a “good guy”, I can pretend that using the right theoretical terms to describe injustice absolves me from having to anything to stop injustice. When I decide I’m a “good guy”, I can behave unethically as long as I still use the right words and show I understand the corrct theory. When I decide I am a “good guy” I can decide that knowing a theory about certain people means I don;t actually have to listen to those people, because knowing the theory tells me everything I need to know about their experiences.

    I can’t think WITHOUT what you call “mental widgets”. I know that this is not intrinsically bad and you never said it was. But the downside is that it is tempting to preted that if I get the widgets to line up properly, then I dont have to check them and see if they fit with reality as well as being internally consistent. It is even tempting to pretned that I don;t have to act ethically as long as I understand the “widgets” properly.

  3. I am very pleased for you in your joy of liberation from the entanglement the Autism Hub.

    I rarely go there because the blogs on it I want to read are linked from other sites, or I have remembered their names or authors. I thought the Autism Hub was just a collection of autism related blogs, not a discussion forum like Aspies for Freedom or Wrong Planet.

  4. I don’t even read the Hub anymore. I have a few of the blogs on my RSS, but that’s about it. I don’t even remember to keep up on my RSS.

    One of the things that bothers me about the classifications on the Hub is that I’m simply listed as a ‘professional,’ and that’s not how I blog. Sometimes my posts are about the kids I work with (of which there are none at the moment), and sometimes they are about my own life as a person with ADHD, and sometimes they are about my friendships with autistic adults, and sometimes they are about my friendships with other adults who have different disabilities, and very rarely they are about my relationship with an AS man.

    In general, I call it my disability blog, not my autism blog. It’s more accurate.

  5. Good for you. Of course you must do what feels right to you and if having your blog removed from the Hub group is right then that’s what must be done. Your words are so worth reading that you must feel free to say what you mean and free also from being dragged down by associations you don’t want.

    I rarely go onto the Hub site now as I just read all the blogs I like from Google reader. But I did still think of it as a blogring, I hadn’t picked up on the factors that means it isn’t.

  6. Bravo!

    I will admit that I cannot comment on what’s been going on in parts of the Hub (as I’m not part of it), but I both can and will applaud your decision to stand up for your principles and beliefs.

    I agree that many of the debates are highly oversimplified and often reduced to meaningless rhetoric. I just wish we had better ways to engage in the important discussions… and to introduce people to the actual debates.

  7. This makes so much sense to me. I am very glad that you’re able to post again, in whatever capacity, because your posts make me feel part of something larger than my living room. In my mind you’re a “Social Justice Issues, Wide & Intersectional Perspective” blogger.

  8. Pretty much the same reason I left the Hub, although I didn’t at the time dare explain it openly. I hope the ad hominem responses to your leaving the Hub have been as few as they possibly could.

  9. Pingback: flip flopping joy » Blog Archive

  10. Good job for standing up for yourself and realizing that something just was not for you. One less thing to get overloaded about (if the Hub did make you overloaded reading flame war crap……our blog is part of the Hub but we hardly read from the Hub……just what’s on our blogroll.)

    Congratulations. No seriously. It might seem like a stupid thing to congratulate someone for……but hey, you’re doing what’s right for you, which is often very difficult…(hard to see why its right for a long time. ) That’s certainly worthy of congratulations.

  11. Well, I haven’t been reading the messages for a long time, and come to think of it haven’t posted for a long while either, though I did notice some remarks from people back and forth indicating conflict, but I generally like to stay out of that sort of thing unless I think it’s going to directly impact me or someone I’m close to, and even then if it’s not too serious mostly I let others sort things out for themselves.

    I definitely think it’s an important take-away to be able to collaborate and connect with others who are radically different, not just in superficial appearances, but in the core way of how they think. And then if it has really been a successful venture, you come to learn that they’re not too different after all (if you can bear the cliche – one of those modes right now where I can be very wordy and express a lot of things, but rarely with much originality).

  12. Pingback: Ballastexistenz » Post Topic » I AM NOT PART OF THE AUTISM HUB. Period.

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