Same here, actually.

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.

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.

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.

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.

Nice to see you here again.

The Integral

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.

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.