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.