To be finally free from entanglement.

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.

Breathtaking to behold: talking back to dismissal

One of my biggest interests is the study of how oppression plays out, and how it is resisted, among communities that most people would consider minorities. (Note: Minority in amount of power, not in amount of numbers. So yes, women count.) Not some sort of study of victimhood the way some people would paint it, but rather how people resist becoming victims.

It is breathtaking to behold communities where enough people have worked out the way things work, that when they are hit with the usual forms of sexism, racism, ableism, heterosexism, etc., they are ready for it. They have answers to the usual bothersome questions and comments designed to disempower them. Even if the people attacking them don’t understand those answers, they at least are told a lot of the same things by a lot of people.

It’s breathtaking because we haven’t reached that point in some of the communities that I work within, including the autistic community. It’s like we’re almost there, but not quite. So a small number of us end up sticking our necks out and a large number seem to either understand but not be able to articulate it, or else not understanding yet what’s going on.

This isn’t because we’re too autistic to understand (which is in fact one of those obnoxious power plays, rather than a reality), it’s because as a community we’re just not quite there yet knowledge-wise. It’s been like this for other communities in the past, it doesn’t have to be like this for us forever. I don’t always even have coherent answers to a lot of what goes on, because this is not easy work by a longshot, but I think it’s work worth doing.

What would be cool is if eventually we all just automatically understand what is going on when people say certain things to us, and from that understanding (plus some time for thoughts to congeal into words), know what to say and how to react. My problem half the time is understanding but not knowing the words.

But imagine that, if anyone ever told us…

…”You’re not really autistic.” or “You’re not really autistic enough.”

(“You just have Asperger’s,” “You’re too high-functioning,” “You understand your situation too well,” “You’re too articulate,” etc.)

…”You’re too autistic.”

(“You lack the empathy necessary,” “You couldn’t possibly understand,” “You lack theory of mind,” etc.)

…”You’re too much like children and confusing us with your parents, somehow.”

(“You’re just like adolescents rebelling against their parents without understanding why the parents know best,” “You’re just like small children who can’t possibly understand the adult world,” “You’re just like little children who want to do whatever you want and can’t understand why your parents don’t want you to do that,” etc.)

Etc.

…then there would be an immediate, coherent response to each one, explaining why this is not an okay way of treating us or viewing us, explaining how the misdirecting of other people when it comes to us works, explaining why this is not okay… voiced by enough of us at once that it would be harder to ignore than the current sporadic response to it.

We’re getting there. See Bev’s Are you autistic? and I repeat myself. But we’re not there yet. And it would be wonderful for a lot of us to work towards this until we are, until we can throw answers back at that stuff easily. Because I’ve been watching these comments thrown at self-advocates for ten years and they never truly change in substance.

[Note also that I'm not going to be taking comments that actually try to explain why those particular ways of dismissing us are actually real or good or right. So don't bother. Because this blog is about how to work towards this kind of change, not about getting the conversation derailed by people who think we shouldn't even be trying to.]

“Intentional” communities… not.

I wrote part of this in response to a post on the change.org autism blog called Down on the Farm, about “intentional communities” (which aren’t really) built for autistic people (but not by us or with our meaningful input) along with some non-autistic people (who have much more choice and power than we do) in ways where the power structure screams institution even if the shape of the walls doesn’t (some people believe institutions are defined by their shape and number of residents, which is neither the sociological definition nor my definition — the definition I use includes a specific power structure that can occur anywhere).

The blogger’s response was not to actually critique all this in any meaningful way, but just to say:

I like the idea of [my son] Charlie working on a farm. He likes being outdoors and the kind of work one does when gardening strikes me as combining many of the things he’s drawn to do. Judging from his indifference to computers, he’s not likely to be a candidate for doing data-entry. And various sources have been saying to me, they’re aren’t going to be any of those sorts of jobs left when he’s an adult—-??!??!!?

Driving back from the post office earlier today, we saw a father and his young son digging in a huge pile of dirt in front of their house. The boy was younger than Charlie; I could see how eager he was to be helping his dad and I think the fact that he was getting to work with (play in) the dirt had a lot to do with it. Working at a desk isn’t for everyone, that’s for sure (even in the industrial-suburban Garden State—there are farms here).

Which completely misses the point of what these places really are.

I’m reposting my response here because I think it’s an important issue and I am disappointed in the blogger there for her treatment of it. Change.org is supposed to have a strong commitment to social justice and I see no such commitment in this kind of complacency about such a destructive place.

Here is my original post:

———–

I can’t explain why I think these places are a terrible idea. But I do.

Last year, an autistic woman (Danechi of And Stimming with Rainbows of Every Design) blogged about these places in a much more responsible way than they are being discussed here.

Her first post was called, The point of intentional communities is that they are *intentional*.

To quote the relevant parts (which are in response to the exact same community that is being discussed on change.org):

Bittersweet Farms is not an intentional community.

The point of intentional communities is that a person *intends* to live there. If they decide they no longer want to, they can leave. They make decisions about their own lives.

If a person is placed into a community by someone with greater power, forced to stay there unless the person with greater power moves them out, and has important decisions about their life made by those people in power, then they’re not in an intentional community. They’re in an institution.

Yes, even if it is on a farm. Yes, even if they are doing work on said farm.

And no, I will never willingly consider such a living arrangement for myself, even if I think intentional communities have the potential to be really cool, because Bittersweet Farms, and the Sacramento-area farm-institution in the very early planning stages are not intentional communities.

[...]

At most I can only realistically imagine an autistic getting a token role in this planning process. There’s no way we can get a majority. Even if we did get a sizeable minority, the power structures will still be the same, and they’re the most dangerous part of the whole thing.

Googling the name of the person in charge [of SAGE] shows that they’re a Rescue Angel and that they were somehow involved with the Green Our Vaccines Rally. I know what that means from an autism-science perspective, and I’m not happy with it, but I don’t know if it would have any significance from an institution-masquerading-as-pseudo-utopian-community-planning perspective.

Her second post on the subject is here:

I just spent time at another residential-farm/institution’s website reading the rationale for why agricultural life is good for autistics.

[...]

SAGE Crossing’s rationale/justification for concept has no similarity to my experiences, and clashes horribly with my worldview in general (that we should create a culture of inclusion). Theoretically a rural setting might be “safer” for autistic-me. (But is it for someone with my chronic illness? I think me-with-cystic-fibrosis is far better off in a city with nearby medical facilities.)

And there is no way that I’m going to live in a farm just because I flap my hands. People who flap their hands are allowed in cities too, for the record. And if all people who annoyed other people were sent out to the countryside, there would soon be so few people in cities that they would no longer qualify as cities.

Also, what the hell does needing to be anesthetized for routine medical procedures have to do with needing to live on an institution-farm? It seems like SAGE Crossing is just throwing out random stuff about autistics and assuming that people will infer we can’t be included in society based on these disconnected, irrelevant things.

I would like to ask why you don’t deal with these issues in the same manner that Danechi does. It seems to me that she thinks more critically, as well as more accurately and responsibly, about these places than you do. She has put into words things that I could only describe as a vague nausea and feeling of these things being wrong at the core, as well as being my worst nightmare. institution-wise (far worse than nightmares that call up images of totally rough and obviously degrading treatment).

When I say wrong at the core, I mean that the problem is not a superficial issue. It’s not whether some autistic people might like to live on a farm while others may not. (My autistic father grew up on a farm and his farm was nothing like these ones deliberately created for autistic people.) It’s about the power structure. And I am not equipped to explain what, precisely, is wrong with it. I don’t have that kind of language. I just know it’s terribly wrong, and become quite alarmed when I see writing by people who cannot appear to sense that at all. Especially on a site that is supposed to be about working for real change and social justice — which would require far more critical thinking about these matters.

If you want to talk about intentional communities, though, LeisureLand (another page, with photos, here) is a good example of an intentional community created by and for autistic people. And it is nothing at all like these more institutional versions of the same things. The institutional ones have an alluring form (at least alluring to some people) but a terrible substance.

At any rate, on a place like change.org I am highly concerned about posts that seem positive or neutral towards places as destructive as this one, and that appear to take places like this (and possibly group homes, etc., too) as inevitable, or inevitable for people with a certain level of difficulty doing certain things.

———–

…and that is where my original reply ends.

I think Danechi’s phrase institution-masquerading-as-pseudo-utopian-community-planning sums up the situation better than anything else I can think of. That’s what makes all the hair on my body stand up when I read about these places.

I’ve lived in a pseudo-utopian institutional farm community before, and my experiences there have done more lasting harm than straightforward beatings and attempted murder have (well, there were beatings there too, but they were not the worst part, merely the easiest to describe). I am sure such a remark would be really puzzling to a lot of people, but I don’t know how else to explain it. Certainly I was totally cut out for the kind of work there (simple, concrete, and repetitive), and I enjoyed the work-training program very much. Certainly it was less physically brutal than most. But of all the things I have had to untrain myself from in order to survive in the real world, that place has been the most strenuous, and the most resistant to my attempts to overwrite it.

At any rate, it concerns me that someone affiliated with Change.org can write about an institution-masquerading-as-utopia, and have their only response be a set of musings about whether their son might like it there. And it highlights a difference I have noticed between people who look to the core of such a place and find it highly alarming, and people who readily believe the propaganda and proceed to fantasize about how much they or their children might like living there.

Please remember it is propaganda, and does not speak to the reality of having your life controlled that thoroughly. Please remember that people who have had their lives controlled that thoroughly often cannot see the damage it has done until a long time later. You come to expect that kind of control and you forget what freedom was like, if you have ever even experienced it in the first place. And please remember that places created by one kind of people, and for another kind of people (where “another kind” can be understood to be different societal categories even when it’s not an actual difference in essence), are rife with power imbalances and the potential for great harm. And that carefully crafted utopias on the surface are often among the most insidious dystopias under the surface where you can’t get your hands on them in any concrete way.