Tuesday, September 25, 2012

Communities and chronic illness

I recently received the following inquiry about what intentional communities might offer folks who struggle with chronic illness, from someone who had been tracking what I'd written about Ma'ikwe's ongoing battle with chronic Lyme disease:

With your brief glimpse into the disabled life (and with your familiarity with Lyme via people close to you) can you envision an intentional community that includes and is framed to support people with chronic health issues such as rheumatoid arthritis, Lyme, fibromyalgia, etc? This is a resource I've wished existed. I've looked into intentional communities in my region (northern California) but haven't found any that appear suitable for me (older, with Lyme and Babesia). How would such a group begin to create itself?

This is a great question.

My experience here—as someone who has been a community networker for 30+ years and visited perhaps 150 intentional communities—is that support for people with chronic health challenges sorts sharply into two different responses, depending mainly on whether the illness emerged before or after the person applied for membership. If the person joined in good health and the chronic issues emerged afterwards, communities will overwhelmingly rally around the person in struggle. While this result is even more certain if the person has been a member in good standing (as well as in good health) for a number of years before they are stricken, the key thing is that they have already passed the membership portal successfully. Once in the club, they can more or less count on community support, at least at a basic level.

On the other hand, if you apply as someone who is already in the throes of wrestling with a debilitating illness, membership is a questionable proposition, principally because the prospects for an equitable give and take (in terms what what the community will be expected to provide in relation to what they'll likely receive in return) is far more dubious, and the anticipated imbalance is somewhat odious. Even though intentional communities are especially well-suited to handle this kind of burden—because the support called for can be spread out over so many people, minimizing the inconvenience to any single individual—most times the group will balk at the prospect.

Ironically, one of the reasons groups are hesitant to swallow a projected trade deficit with a prospective member suffering from a chronic illness is that they'll want to protect their reserves against the possibility that a current member may become ill, and are not highly motivated to tax themselves at the rate needed to provide a more robust reserve. This is a tender example of the people in a stout lifeboat not wanting to pull half-drowned people in over the gunwales, for fear that there may not be enough food and water to accommodate those already in the boat. This is tough stuff.

And at the end of the day, it is much easier to say "no" to a stranger than to an established neighbor in their time of need.

All of that said, there are some communities who have developed an identity connected with service to people suffering from health challenges. There is Innisfree Village (Crozet VA) and the L'Arche communities (in several US locations and in Canada and Europe) that work with people with intellectual disabilities. The Camphill communities (in several locations in the US and Europe) work with the developmentally disabled. Gould Farm (Monterey MA) works with people suffering from mental illness. Unfortunately, I know of no community that offers analogous categorical support for people suffering from the debilitating effects of rheumatoid arthritis, Lyme disease, or fibromyalgia. 

Though it would be a godsend to those in need, that particular prayer has so far gone unanswered. To manifest an answer to this prayer would probably require a group that was willing to dedicate itself from the get-go to meeting this need, to accept this as part of its core identity. As the handful of established communities that I mentioned in the previous paragraph can attest, it is possible to do this, but the initiative on this will have to be undertaken by the healthy, not by those whose energy budgets have already been sharply compromised by their illness.


Anonymous said...

Laird - as the person who asked the question about chronic illness and ICs, I appreciated your willingness to take it up so fast. But sad that there are no magic answers or existing resources.

And yes the accepted member versus new member is the gateway I have assumed was most tricky.

What you write about establishing an IC for Lyme/fibro/etc people is also a truth I've grudgingly accepted: "this will have to be undertaken by the healthy, not by those whose energy budgets have already been sharply compromised by their illness."

I appreciate your naming some ICs that already exist to help a specific group of people. Perhaps if I learn more about how these ICs came to exist, I'll find a model for creating an IC that meets the needs of people with Lyme etc.

Or perhaps not. The ICs you list focus on health/ability issues that are already part of the social welfare network. Thus, they have social awareness of needs and some access to funding. Sadly, Lyme and others are not as well accepted.

Thanks for your thoughts!

Sara Hana Sternberg said...

I am also a person struggling with long term chronic condition of this nature and it is my passion and vision to help create a community for people like ourselves. Or to assist a conscious community to open to collaborating in this collaborative way in partnership with the Integrative health resources that would ideally be in the area and accessible. My background is in community building and holistic health and I’ve lived in intentional communities.
This is a topic that not only deserves and needs special attention but actual community and grassroots action as well as sponsorship by families and friends who understand how essential these communities are.
Many with Lyme are survivors of trauma and extreme isolation. Community is a huge factor for healing along with innovative treatments and frequency medicine .

I would love to connect with individuals and communities on this subject.

Let’s start a movement. ✨⭐️ This is the path. It just takes a “yes”.

Camphill is a great model an Gould Farm is a special place. However we need a community founded by the people affected by the condition and person centered, trauma sensitive, progressively conscious collective for this process.

Who is game?

Please contact me on Facebook with my full name (picture of an Owl).