“Intentional” communities… not.

Good to see you back here, Amanda.

Thanks for this post, Amanda.

I wish I knew why so many people can’t see that it’s not the setting that matters; an institution is an institution whether it’s in the city or the country, and regardless of how cheery the decor is.

(I have also blogged here about not-so-intentional “communities” for autistic people).

I’m not gone. I’ve just got a lot of stuff to do in the offline world, and not a lot of time for blogging. And when I do have time, I’m more interested in spending it observing the world than commenting on it most of the time. And since I am not interested in posting meaningless filler, all this makes me post less. (I haven’t really been reading blogs much either.)

I suppose I should repost something I wrote on a previous post:

I haven’t had either much to blog about or much capability of blogging lately. Mostly due to not having any time or energy left over, after a bunch of serious offline responsibilities, to take in more information and figure out what to do or say about it in any sort of public manner. I don’t like to post online just for the sake of posting. And I don’t have an ounce of energy or a second of time to waste, I have had to become much more streamlined than I already was. Which was pretty streamlined already.

I also don’t believe in saying anything when I have nothing to say, or when I don’t understand what I’m saying (that habit, which was once a survival thing, has long outlived its welcome and has harmed far more people than just me, and I’m sorry — and I do my best to avoid it at all costs, since nothing good ever comes of it). I do believe that in order to be able to do anything useful, I also need time when I’m not doing public writing, or a lot of public reading in a particular area. This is a brain thing. It works that way and I’ve never been able to stop it from doing so.

My ability to use language has always outstripped my ability to understand it, so more than most people I know, I really need a lot of seemingly unoccupied time to just figure out what’s going on around me. Eventually all the information settles into the back of my head getting more and more detailed as time goes on. Then, eventually, some event triggers a response that uses that information. Can’t pull that response out on purpose, it’s just wasted effort. And I now refuse to just repeat what someone else wants me to say (and I have had a lot of people tell me I really need to publicly talk about whatever their pet subject is, but since I can’t understand them, and/or can’t form words around them, then I can’t say them, end of story). But it will eventually show up when I’m least expecting it.

So some events today have triggered one of those responses. Don’t expect other responses forthcoming just because these ones exist. I still have from no time at all, to at most, two hours of ‘uptime’ for things like this per day, and that’s how it’s going to be for the foreseeable future. If anything takes up too much of that time with no useful return (and I’m the only one who can judge that against a lot of other things that are very important), I’m just not even going to respond. The stakes are too high, and that time is in too much demand already for other things. This is how it has to be, and it’s why I’ve taken on few to no online responsibilities lately.

Also, as I’ve noted many times before: Don’t assume this is about autism. I’m an autistic person, it doesn’t mean that everything I do or care about centers around autism and autism alone. As was pointed out to me again recently — I’m a person who applies values and skills I already have, to autistic people’s situations, as well as lots of other situations I happen to come across. Nothing about the world I currently inhabit has little walls around an “autism section” that I have to stay in.

I also get an impression of something major being wrong in a way that’s hard to put into words, about things like this and the sites you linked. I know that one of the big things that’s scary about it to us, that’s always been intensely scary to us, is the pretending that certain things, like freedom and compassion, exist in a place where they’re really not there. The part about how a community isn’t “intentional” if people are put there by more powerful people rather than choosing to live there, is a lot of it, definitely. It also seems to relate in some way to how we always found “beautiful, soothing” psychiatrists’ offices scarier than clinical-looking ones. The pretending that a certain place is full of love and compassion and caring, when if it exists there at all, it’s always with a big glass wall between the carer and the one supposedly cared for; and then putting all kinds of pretty trappings on it to enhance that impression. Then you can get fooled into reaching out thinking there will someone to hold onto, if you don’t know better, and get dropped into a deep pit instead. I’m not sure if that makes any sense, but I couldn’t think of a good way to describe it.

I read part of that SAGE website, too, and the “interdependency is best for autistic and cognitively disabled people” thing is weird and creepy partly because it suggests keeping people as children at your mercy, too dependent on you to ever leave, and because it suggests whoever wrote it thinks that non-disabled people aren’t somehow all interdependent either.

I wholeheartedly agree with you. I was shocked to see a blatant endorsement for a supposedly utopian institution on Change.org, of all places. A lot of those so-called intentional communities have a really phoney feel to the, and we’ve seen that firsthand. If there’s a power structure that robs the autistic residents of autonomy, it’s an institution, whether it’s on a farm, or in a designated building, or anywhere else. That sort of sugar-coating doesn’t work with me–if it isn’t really intentional, it’s not intentional.

~Kerry

Yeah, I know what people mean about real intentional communities having their own problems.

Leisureland seems genuinely cool, but I believe it was set up in the way most truly successful intentional communities are set up: Not from the top down, but from the bottom up. The best ones come from people meeting each other and deciding they want to live near each other, and then starting to help each other out with things, and develop values that are similar.

The worst of the real intentional communities seem to be over-planned and can turn almost cultlike. In those situations even totally ordinary people who join them can have trouble leaving. I have also heard stories of disabled people joining ones made mostly of non-disabled people, and being badly abused by people who are supposed to be helping them, but having no means of escaping without help, nor calling for help if the community is secluded enough that it’s a long way away from anyone they could call.

And one of the awful things about this SAGE thing is they give interdependence both a bad name and twist the meaning around. Normally interdependence is something that belongs to the whole world, where everyone relies on everyone else. It isn’t supposed to mean this little artificial system where people are plugged into a formula to depend on each other in ways that can make it hard to leave.

BTW, Kristina (the author of the original thing) had a good reaction to this, and I’m glad. I never mean this sort of thing as an attack, just as a constructive criticism. And it’s really nice to have that taken exactly how it’s meant, instead of creating drama that I have barely any means of comprehending, let alone handling.

Amanda- thank you so much for commenting at change.org. I’m one of the parents there who thought that the type of community being described might be right for my son, and it is so valuable to hear other input. It seemed like a great idea when I first saw it, as my son seems to be happier when he is outside, with his hands in the dirt, and being close to animals. I hadn’t thought through the structure or even intention of the type of community that he might end up with, since we don’t actually have any communities like that around here.

As a parent, I try to do everything in my power to give my son as much independence and support by caring people as possible, as well as being as involved in his daily life as I can. Unfortunately we have not yet found a way to establish enough communication to find out what his choices and desires for his future are, so we can only go by his behaviours- if he’s not hurting himself or others, then we have to assume that what he’s doing at the time is either less painful for him or something that he enjoys. It is very difficult to try to make responsible and supportive life decisions with his involvement when we haven’t yet found a way to understand his communication, so I very much appreciate it when people can point out things that I haven’t thought through yet.

Thank you so much for your input. A lot of parents really do try to do what’s best for their children in accordance with what we think that they would want for themselves, and feedback and information from other people that provide different viewpoints and insight is only helpful.

Hi Amanda,

As someone who has been involved on the fringes of the intentional communities movement in Britain for many years, I was shocked at what the one-time editor of Communities Magazine (in the USA) wrote in an e-mail exchange with me several years ago. The gist of it was that “ordinary” intentional communities are often unable to cope with autistic people - these people should go to “therapeutic” intentional communities instead. Another writer, in a much older British magazine on intentional communities, said that intentional communities attract people who find it hard to make friends, as such a community can give you a ready-made group of friends, and this can damage the communities.

To work out the power relationships within a “therapeutic” intentional community, I find it useful to use Sherry Arnstein’s “Ladder of Participation”. The lowest level of participation is manipulation (of the disabled residents by the non-disabled ones). Slightly above that is if they are given information but no role in decision-making. Next is if they are asked for their comments or consulted - they then have a small passive role in decision-making. The top three are where there are increasingly active roles in decision-making: the lowest of these is token representation, then genuine representation, and at the top collective decision-making.

I LOVE your website! Ralph Nader trumps Obama in his support for the mentally diverse community in that Nader wants funding for at-home care. Obama has betrayed his voters on many fronts, don’t be surprised if he betrays us, too. He talks a good talk, but he doesn’t walk his talk.

I wonder if these people’s idea that autistic people are happiest on a farm has anything to do with Temple Grandin’s success in animal husbandry. I concede it’s quite a stretch, but Temple’s all some people have to go by in terms of knowing what a “successful” autistic is. That said, farm work in general has a certain Zen to it that, with enough time, anyone of any neurological stripe can appreciate in their own way. What messes this up is, like you said, the power structures.

Since the cat apparently has your tongue when you try to explain these structures, Amanda, I’ll take a stab at it. People interested in social justice and charity are, nine times out of five, born leaders. Leadership is necessarily a top-down social structure, one where a person intervenes his/her followers’ course of action, and in the case of people as liberal as this, the big motivator is to stick it to The Man–some nebulous oppressor. Where this goes wrong is that most NTs regard autism as a figurative sort of inner demon oppressing the autistic, and so they end up trying to take control in order to fight back the autism. In the eyes of the NT social justice enthusiast, therefore, any objections from the autistic appear to come from this little “demon” and not the autistic him/herself, so the NT keeps fighting back. This false power structure (NT fights autism to save the precious, idealized, special, angelic talking child trapped inside, but must deal with the mysterious scourge of autism), then, actually *creates* the true power structure that has us concerned (autistic fights NT’s misguidance about her commitment to social justice, but is caught in a catch-22 that precludes the NT from listening).

This strain of liberality, the kind that entails an unlistening leadership, is not new in any society by any means. The first European settlers in America sliced, stabbed, shot, pillaged, and swindled the “heathenness” out of American Indians in the name of God; the Unabomber scared the bejesus out of university science departments in a dubious attempt to explain the hubris of the human race; China censors its corners of the Internet in the name of decency and domestic tranquility. While these acts are reprehensible, they are not nihilistic killing sprees; the people who commit actions like this believe they are performing a solemn act of higher morality, and anything that threatens to lead them off their path by the short half of an iota only strengthens their resolve. Granted, these examples are orders of magnitude more grand than what goes on down on the farm, but what botches the “intentional” community on its own scale is this same cycle of myopic “leadership.”

The alternative is, of course, a bottom-up structure: autistics helping autistics. Leadership does not stay in one place as with the top-down structure; rather, it shifts from person to person (”bottom”) as they raise each other’s consciousness (”up”). As hypothetical as this is, you seem to argue that, for example, LeisureLand leans more towards this structure.