Thoughts and illustrations on living on the autism spectrum.

Sunday, October 10, 2010

The Village of Disappearing Differences

Imagine, if you will, a residential home for autistic adults, but instead of an institutional building, a 400 acre farm. And instead of a paid staff of aides on rotating shifts, care is provided by fellow residents who live full time on site. And instead of sitting in a room in front of a large TV, the residents spend their days at work in the gardens, or baking bread, or weaving rugs, producing retail goods they sell for profit.

An idealistic pipe dream? Something out of fiction? Nope, it’s the real thing. I had occasion recently to learn about the Camphill movement. I found it compelling, curious, and inspiring, and I wanted to share with you what I learned.

Camphill villages are farming and handcrafting communities that include adults with developmental disabilities, such as autism and Down syndrome. The model was developed in 1939 by Karl Koenig, and today there are more than 100 communities worldwide. Central to the concept is anthroposophy, the idea of respect for the spiritual wholeness of each person and the human possibilities to evolve toward freedom and love.

Non-disabled resident volunteers live and work side by side with those with special needs. Some stay a year as part of an AmeriCorps-type program; others stay for years or a lifetime. They share meals and household responsibilities. The village sells its organic produce, baked goods, and crafts at a café open to the public, and at Whole Foods. They host concerts and festivals. There’s also the Waldorf school branch of Camphill, serving children with special needs. And, if that all wasn’t enough, all Camphill technology is green, from the sustainable agriculture to the construction of the residences.

Are you a bit awe-struck? I must say I am. Here's a relatively little-known organization with progressive solutions to many of our most challenging societal problems, all in one place. Perhaps most impressive is that the abled and disabled are treated as equals. We often say that’s what we most wish for, for autistic persons, the disappearance of different-ness. Camphill is a community in the realest sense. “I stopped seeing people with disabilities, and now I just see people,” commented one service volunteer in the recent Camphill publication, Lilipoh.

Why isn’t Camphill better known? It seems positively utopian in its outlook, and at the same time, somewhat radical. The villages are not licensed treatment facilities. They are supported by donations, grants, sales, and family support. They don’t collect detailed data on outcomes for residents and whether their lives improve. Despite the 70-year history of the movement, there seems to be no scientific comparison with traditional group homes. Indeed, little evidence suggests Camphill does a better job at caring for the disabled.

“The Camphill communities… are widely known of, but little known about; often lauded, sometimes condemned but rarely understood,” according to a review by Baron and Haldane (1991). A study of the 600 Waldorf schools worldwide found “there appears to be no research based evidence to its effectiveness for those with autism or other developmental disability.” (Roberts 2004) Most recently, a study in Ireland compared 29 residents of a Camphill community with 125 residents of a traditional group home. Camphill was found to have higher staff:resident ratios, more homely living areas, and less of an institutional feel, but was not found to be better on a range of other objective measures (Fahey et al. 2010).

So without scientific proof of effectiveness (or ineffectiveness), it seems that further comparative studies should be done. If the Camphill model could gain evidence-based status, then it could expand beyond its seven sites in the U.S. If it has weaknesses, then researchers could work toward improving the model. At a time when residential homes are needed, expensive, and challenging to operate, we should fully investigate promising alternative models.

Whether or not that happens, the Camphill movement remains fascinating. I plan to keep attuned to the goings-on at my local Camphill branch in Kimberton, PA, perhaps check out a musical performance or pick up some freshly baked cookies at the café. It might be nice to volunteer for a day, get a window into a different rhythm of life, where the food is slow, the workers are like family, and the boundaries between us disappear. If you have the chance to visit a village, I hope you will, too.

For more information, visit camphill.org.

Photo credits: Photo 1 - Wikimedia Commons. Photo 2 - Copyright Lizzie and licensed for reuse under this Creative Commons License

11 comments:

  1. Wonderful, wonderful!! <3

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  2. Fascinating. Thank you for this post.

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  3. Oh my goodness. That sounds just so awesome.

    Though I must say, I see it as less of "disappearance of differences" and more of "disappearance of disabilities". Cause it sure sounds like differences are quite encouraged and rewarded. Amazing nonetheless.

    Chris

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  4. I think the important part not addressed by these studies is quality of life.

    I would love an Aspie community where I didn't have to be worried about being who I am. My life would be improved 1000%. It's the NT's way of thinking that makes life so difficult for us. We flourish when allowed. That would automatically make it a superior place to be.

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  5. I think the important part not addressed by these studies is quality of life.

    I would love an Aspie community where I didn't have to be worried about being who I am. My life would be improved 1000%. It's the NT's way of thinking that makes life so difficult for us. We flourish when allowed. That would automatically make it a superior place to be.

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  6. Chris, you make a good point - I used differences in the sense that the differences are still there, but we see we are not as different as we thought.

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  7. Thanks for your post, Matt. We always appreciate new friends spreading the word about Camphill.

    There has been a recent study on quality of life issues - dated 1/20/2010.

    The University of Toronto’s Quality of Life Study, commissioned by the Camphill Association of North America, found the quality of
    life for people with disabilities in Kimberton Hills to be of a very high standard—and that people with disabilities here have a, “meaningful degree of control over their lives,” and many opportunities for making choices.

    The study showed that our community scored
    significantly higher than the University’s evaluations of four standard other options for people with disabilities: large and small
    congregate settings (institutions and group homes), independent living, and family living.

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  8. Bernadette, thank you for sharing these findings. Sounds very promising!

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  9. may i ask something? how does this work, is it a place where aspie families could live or is it for individuals (single people) only? is anything planned for kids, as in schools etc? now THAT would be awesome.

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  10. Actually, something in this vein is how I think EVERYONE should be living. Small communities where everyone is productive according to their ability, where mutual dignity is the objective instead of personal possession.... yes, I need to learn more about these communities! Thank you for this tip-off, it's going to have a huge impact on my ministry!

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