Autism

Community Options to Meet Support Needs

Published March 05, 2009 @ 10:08AM PT

five hands with their fingers out to form a five-pointed star, photographed from below against a blue skyService and support from the government or other formal institutions is a critical need, and the path to survival for many of us. However, there may be other paths to meet those same needs that work too, perhaps even better in some cases, like community.

The definition of community in the U.S. these post-modern days is strange--highways dice up neighborhoods, information technology redefines the meaning of location, and "leaving the family" at majority never to cohabitate with the rest of the family again even in old age is the social norm. But community does yet exist, and community can be the path to survival for many of us.

The film The Key of G documents one way that community support can look, particularly when the community is defined by shared interests--in this case the arts. This documentary is one I've always longed to see, because support from an arts-based outsider community is largely how I managed to survive my early adulthood. From the film's site:

THE KEY OF G is an award-winning feature documentary about disability, caregiving and interdependence. The film follows Gannet, a charismatic 22-year-old with physical and developmental disabilities, as he leaves his mother's home to share an apartment with a close-knit group of artists and musicians who support him, not only as paid caregivers, but also as friends. Together they create a uniquely successful model of supported living, and a compelling alternative to institutionalized care.

A different sort of intentional community is the international community L'Arche, which has been functioning since the early 1960's. L'Arche's sense of community comes more from shared spirituality. From the page A L'Arche community is...,

...mutual relationships: At the heart of L'Arche communities are relationships between people with and without intellectual disabilities. A respectful relationship between people who treat each other as of equal value provides security, allowing for growth, personal development and freedom to become more fully the people we want to be. Most importantly, mutual relationships foster the acceptance of each person as a unique and valuable individual, whatever his or her abilities or disabilities.

One potential criticizm to community support is that without externally imposed standards of quality or state-mandated watch-dog systems, abuse or poor quality of services might be more likely to occur. But then again, state funded or large institutionally run programs can also be horrific beyond measure, so simply having state watch-dogs doesn't necessarily negate the problem. A community that has true caring for the welfare of its constituents, as well as true inclusion of all constituents in decision making, may be ultimately less prone to those sorts of issues.

"Community" may be evolving into new formats in this 21st century world, but it has not vanished all together. Community by definition includes the notion of interdependence in an ecological sense. Interdependence is how we all survive.

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Comments (6)

  1. B B

    Thanks for this article.
    First of all, the graphic you put up is beautiful.
    Secend, I visited a L'Arche home. It was very nice... and they said that autistic people are not wanted in L'Arche homes. I don't blame them. A lot of well meaning people can't understand or don't know how to learn to understand autistic personalities so it could mess up everyone.
    Third, that story about Key of G sounds beautiful. I've seen music bringing together communties of care givers, autistic people and just people who like the ambience of it all. I wish there were more of that but we all in intentionally seperated lifestyles to insure maximum consumption of goods and services.
    I wanted to get something started when more of us can start doing things together. My first upcoming meeting I just called A Community of Care Givers. I hope that some good people show up and, maybe it will lead to bigger and better things.
    And if it doesn't turn out as well as I hoped, I have the rest of my life to get it right and I can say, at least, I tried.

    Posted by B B on 03/05/2009 @ 12:59PM PT

  2. Dora Raymaker

    " autistic people are not wanted in L'Arche homes."

    Really?  Could you send me the link to the page that said that if you have time to do so?  I know some people involved with L'Arche and they never said anything like that to me--I'm surprised and kind of horrified and would like to bring it up to those people.

    Posted by Dora Raymaker on 03/05/2009 @ 01:21PM PT

  3. Reply to thread
  4. B B

    I never saw it written down. I was when we visited two L'Arche homes, we were told this in person. I'll see if there's anything written down or you could ask whomever you talk to if this is the case.

    Posted by B B on 03/05/2009 @ 01:36PM PT

  5. Dora Raymaker

    Ah!  I understand now, thanks for the clarification.  I am definitely going to follow up on this with the people I know.

    Posted by Dora Raymaker on 03/05/2009 @ 01:44PM PT

  6. Reply to thread
  7. B B

    It's been a few years since I visited the L'Arche homes. Autism is on everyone's radar lately so they might have changed.

    Posted by B B on 03/05/2009 @ 01:40PM PT

  8. Dora Raymaker

    I heard back from my friend who essentially said the following: 1) Autistic people do live in some L'Arche communities and she has several autistic friends who live in L'Arche communities; 2) Each L'Arche community is semi-autonomous, so some may be more interested in accepting autistic community members than others; 3) L'Arche is somewhat focused on folks with ID, so if a person is labeled autistic but not als labeled as ID, that could be a reason why L'Arche would not be interested in accepting the person (not necessarily but possible).  My friend was NOT speaking in any sort of capacity as an official  representative of L'Arche, just giving her thoughts based on her own experiences.

    Posted by Dora Raymaker on 03/06/2009 @ 11:08AM PT

  9. Reply to thread

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Dora Raymaker

Dora is committed to improving quality of life for individuals on the autistic spectrum--including herself! She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network's Board of Directors.

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