working together?
This is a post by Mary Schweitzer Ph.D. reposted in full with permission. I don't recall that this vital subject has come up here. There are several pages on the cfsknowledgecenter on the same subject as this thread in reverse chronological order. This post is a couple pages back.
Cort, about your last post there; all those ideas are new and yours?
Roy
http://cfsknowledgecenter.ning.com/profiles/blogs/cfids-association-what-do-you
Mary wrote "Cort - that's exactly the answer Kim gave me in 1996. It would be too hard; it would be too expensive for the National in Charlotte to start up a whole bunch of locals.
No! That's not what I suggested then and it's not what I'm suggesting now!
Sorry to get emotional, but there it is - the stone wall - the "you can't fix anything" response. "La la la la; I can't hear you."
I never suggested the CFIDS Association of America should "build local groups." I suggested that the CFIDS Association of America needs to work with existing state and regional organizations who themselves are already working with local groups.
The National doesn't generally do that much directly with locals. The National works with the State and Regional associations. The State and Regional organizations work with the locals. You're missing the most important step.
If the CAA responds by saying it would be too difficult to "build" state and regional groups, I'd be back beating my head on the floor again. They're already there.. We already have very good state and regional groups who are already work with local groups. You don't have to create them - in fact, you shouldn't create them. You need to work with them.
What's missing is the outreach - and what's missing is the willingness to let go of power.
Recently the traveling picture show of people with CFS came to a state that has a very well-run, large, longstanding organization. The president of the organization learned the show was in her state when she happened to go to a shopping mall and saw it there - with nobody to answer questions, with nobody to hand out pamphlets. Just a lot of pictures in a vacuum.
She was very frustrated - had she only been given a week's notice she could have had people there manning the show the whole time. She had pamphlets that could have been distributed.
I am presuming the CAA never notified her because (heaven forbid) Kim could not control the outcome if she allowed a state organization to take over some of the burden. And that's why the CAA isn't working.
To repeat:
National <-----> State/Regionals <-----> Locals
By the way - I didn't just pull this out of a hat. When I was a working professor, I had a colleague, a sociology professor at the University of Delaware, who had written a book about how successful NPOs work. I had just been to a national conference in New Orleans where she was the keynote speaker (I had responsibilities there left over from 1994, before my total collapse with the disease). This was 1996. Her speech was (unsurprisingly) about her latest book - she talked about the elements of a successful non-profit in the United States.
I flew from New Orleans to San Francisco, where the AACFS was meeting, with my notes from the talk in my Lands End briefcase, and asked Kim if I could spend a little time talking to her about organizational issues. She was very polite. She listened. And then she said it was impossible.
So here we had free advice - and could get more - from a nationally recognized expert in the organization of NPOs. And the response was ... just like yours. Kim didn't hear a word I was saying.
It's hard enough to live with an invisible disease without also being invisible to the people who speak for you as advocates. And the sad part is it's not necessary.
This is the point where I beg state organizations to come together - happy to come with you - and create a national organization that truly represents the population of patients with ME/CFS in the United States.
It was done before, you know - 1787. And they didn't even have a model to work with.
Mary Schweitzer