“Intentional” communities… not.

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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.

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.

21 responses »

  1. This is like how people talk about autistics and others “needing structure” or “liking routine”, and what they mean is that they don’t want to let autistic/whatever people have any control over *anything*.

  2. 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).

  3. I don’t have much to say specifically on this except that, as usual, i completely agree with you.

    (Well, actually, i could go on about housing co-ops and other urban intentional communities, and the sometimes unthinkingly disablist attitudes in the normative concept they often have of “communal living”, but that’s a) only tangentially related, and b) not something i have sufficient verbal spoons for at this time of night…)

    Anyway, just mainly commenting to express happiness at your still being around in the blogosphere, as i had got worried that you had disappeared – you’re probably the writer i most admire in the whole online-disability-dialogue world. Not that if you stopped blogging your existing writings would cease to exist, of course, but, you know. I always eagerly anticipate anything new from you. :)

  4. 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.

  5. 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.

  6. The way it maps in my head is a pale-colored sweet-smelling cloud, or a glossy smooth surface — deceptive to people who assume that certain signals (whether light color, smoothness, a sweet smell, or the actual real signals that are in there) == good, and with the potential underneath it to do actual real harm.

    But that’s some kind of cognitive synaesthesia, it’s not an explanation. :-/

  7. 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

  8. 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.

  9. Hi Amanda,

    Good to see you’re still around. And I’m glad you dropped into that blog and commented. I’d seen the posting but it didn’t really register what it was about.

  10. 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.

  11. “built from the bottom up…….”
    Well, we could have a powerful ally in President Obama, or part of his administration, because he has said umpteen times that things work better started from the bottom up.

    Nice to see you here again.

    The Integral

  12. 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.

  13. A community can only be intentional if people are offered a *meaningful* choice.
    If it is a choice between going there and various other institutions, that’s not a real choice.
    If it is a choice between going there and being homeless, that’s not a real choice.
    If it is a choice between going there and living independantly, but without sufficient personal care support to survive, that’s not a real choice.
    If a person is offered the choice between living in their own home with adequate personal care and support, or living in one of these communities, that is a choice.
    They also have to know that they can choose to leave at any point AND that if they *do* choose to leave they will have their own home and whatever support they need.
    They also have to live in an environment where they are treated as worthwhile people. I think maybe what you’re trying to describe is a system where people are told again and again that they can’t make their own decisions, and the way they are treated re-enforces this message, and they get to the point where they’ve forgotten how to *want* autonomy, because they’ve been taught they can’t handle it.

  14. 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.

  15. I don’t know much about intentional communities in general, but I can give an opinion on why I didn’t like the one in particular that your post was talking about.

    To me, it is about the lack of choice that an individual has. If someone stops working, they get redirected. The staff sees that as the individual just got distracted, even though that may not be the case. The person may not be enjoying what they’re doing, or they may have a pain somewhere in their body that is bothering them to the point that they want to stop working, or any number of other things could be going on. It really gets under my skin when everyone just assumes that an autistic (especially the nonverbal ones) makes a decision and instead of everyone around them seeing it as a willful decision, it gets seen as defiance, or even confusion. If anyone else was working, and wanted to take a break, it would be seen as that. No one would come up to a nondisabled adult, and hand over hand redirect them back to the task. Non-disabled adults don’t have their life micro-managed like that. Autistic adults shouldn’t, either. I see this sort of thing happening to children a lot in school, and it’s caused quite a bit of friction between my sons’ teachers, and I. Instead of looking at what they might like, want, or be able to do as individuals the teachers try to force-fit them into what they think they ought to be doing, without taking into account what my sons might be trying to tell them with their so called ‘defiant’ behavior. I can feel that kind of oppressive atmosphere as soon as I step into it. Even in the nicest of classrooms I’ve had that fear in the pit of my stomach that made me want to instinctively run. it wasn’t anything that I could immediately put my finger on, so it really makes it hard to explain it to someone else as to why I don’t want my son(s) in that classroom. I think it’s also hard for someone to understand if they’ve never themselves been in a situation to where they’ve had their life micro-managed to the point that they had no power to make any decision on their own.

  16. 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.

  17. I was a ‘co-worker’ on one of these intentional communities a few years back. When I visited the ethos of ‘co-worker’ (ie. “equal”) and the general principles of the community were great. In fact, I can remember reading something about ‘sugar coated prisons’ and thinking how unfair that was.

    The reality was that this community, with all it’s hippy ideals and rules, was far more restrictive, limiting and patronising than anywhere else I have worked. Adults with autism and learning difficulties were treated as giant children, only fit to do gardening and pottery. Issues like whether people wanted sexual relationships or marriage, could use mobile phones, could learn to drive, were avoided or ignored. It might suit a whole bunch of people to eat organic and work to a tight schedule on a farm, but it doesn’t suit everyone. Residents were compelled to follow this hippy lifetyle when many of them would rather have lived in other ways. No attempt was made to accommodate a desire for an alternative lifestyle to what the community offered. But if people really rebelled against the lifestyle then their parents/social workers were asked to place them elsewhere – meaning they lost their home, their friends, everything they knew.

    There was no attempt beyond very cursory “what shall we plant here?!” to involve residents in the decisions made about the community. They had no understanding whatsoever of UK mental capacity act legislation. At times their behaviours ammounted to false imprisonment or treatment without consent – and yet when I contacted social services about this they were so taken in by the organic-bloody-vegetables they couldn’t see what was happening there.

  18. “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 ”

    Same here, actually.

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