Wednesday, August 27, 2008

Autism and Intentional Communities

These two posts at And Stimming With Rainbows of Every Design struck a chord with me. I actually panicked a bit reading the first one, since I am on the record praising rural intentional communities for their autistic-friendliness (or, rather, praising one particular community, The Farm, for its friendliness to one particular autist, me). I had to go and reread that particular post to make sure I had not inadvertently implied that rural community living as The One Answer for all autistic people, because that was not my intent.

Danechi raises an important question in the second post that I link, dealing with Bittersweet Farms. BSF, along with the community Danechi's parents are involved in planning, and along with these two other autism-centered communities I found here, appears to be less an intentional community of, by and for primarily autistic people and more a group home set in a rural environment. Danechi worries, rightly, that these communities simply represent the kinder, gentler face of institutionalization.

Of the three fully-established communities I listed above, it is Bittersweet Farms that looks most institution-like to me. It is overseen by the Ohio Department of Mental Retardation and Developmental Disabilities, with its membership coming from caseworker referrals. So, people do not come to BSF; they are placed there. The arrangement of government at BSF is also quite hierarchical: there is a Board of Directors, there are staff members and then there are the actual residents. There are treatment regimes, lots of structured activities, and training geared toward "develop[ing] skills of independent living."

Of the other two communities, I was not able to find much detail about The Brookwood Community, except that it is Christian-based and its citizens work at flower gardening and handicrafts, the products of which are sold online or at three stores. The other place, Farmsteads of New England, describes itself as "a human services agency that has developed an intentional farming community that caters to the needs of people who have autism or other developmental disabilities." It was founded by a special educator who wanted to create a good work environment for her son, whom she believed could not succeed in a conventional workplace, and whom she did not want to put in a sheltered workshop, where she believed the work would be repetitive and meaningless. Its website emphasizes principles of "least restrictive environment," "innate value and dignity" and "self-determination." Like BSF, FNE is essentially a cluster of rural group homes, with a high staff-to-resident ratio and various day programs in basic self-care, life skills and farm work.

I'm not knocking the educational or assisted-living services these places offer. People need those things, and many autistics have additional medical problems that require specialist oversight. Learning to take care of yourself is also one of the most empowering things you can do, and something many autistic people struggle to master. No, what bothers me about these communities is the apparent lack of participation by the autistic residents in the governance of their own communities and the shapes of their own lives. From reading the mission statements of BSF and FNE, it seems that the intentional community is formed of the parents and staff, with the autistic residents existing as the focus of the community but not having any say in that community, or even being members in their own right.

I did find one apparently self-governing, egalitarian community of autistics here, though.


Danechi said...

I only recently discovered this blog. Just wanted to correct that my parents are not in any way involved with the planning process. They just were on a mailing list that the notice got sent to, and wanted me to check it out.

Anonymous said...

Hi, have enjoyed your blog. I live in Lawrence, KS with my wife and our son Tait who is 11 and has autism. We are beginning to explore how to start a farm-based intentional community for families like ours, but one that would allow flexibility around age and family configuration. Your discussion here is helpful. Thanks/mark holter

Lindsay said...

Glad I could help, Mark!

I'm also in the process of figuring out how to start a farming community (with my romantic partner and several friends), and one book I can recommend is Diana Leafe Christian's Creating a Life Together. I haven't read it, yet, but I did learn a lot from her in person about forming communities and setting up transparent, democratic and accessible decision-making processes.

Anyway, good luck on your project.

Unknown said...

Lindsay, Thanks for the tip. I went to her site where there is now a free e-newsletter. I look forward to following your progress as you plan your community. I guess I'm assuming you'll post your experiences? /mark

Anonymous said...

huh. bookmarked post )