Hi

on 5/21/03 12:49 AM, Ddd wrote:

I just cut and pasted the N.O. list description from the Yahoo home page:

N.O. Organizing List is a discussion group for advancing the issues and mechanics related to creating a National Organization (NO) of mental health clients.

What ideologies does the NO represent of mental health clients?

All? 100% inclusionary

Or some other formula

Ddd,

Have you looked at the archives? Start with the APBOR and read some old postings.

I am a NAMI AK BOD member, Consumer Council alternate for NAMI and have worked well in/with the old guard NAMI in Alaska. I am pleased with the new words about ‘consumer directed’ and hope to be around to see changes in NAMI. Many folks within NAMI have a heightened awareness of the changes in the system and thinking about “mental illnesses.” I believe it is due to many contributing factors in Americas’ culture. Educational Institutions, books, TV and internet. People.

I also appreciate that a goodly number of people who have been net-working for at least 25 years (each) are coming together to raise the standard of inclusion, respect and communication. How to speak for all of us who experience life with (use your own word here ..) psychiatric barriers is a good question and we’ve had long discussions on it. It may be time to go over everything, again ..

My take is that (25 yrs ago) there was no “‘consumer friendly’ organization” and the folks who are now ‘leaders’ were ‘elevated’ to the ‘position’ because they felt they could and they wanted life to be better for others, like themselves. Real people, who spoke up and out. Some against what ‘was’ and they all dream of the day when all people, are living well in the least restrictive manner with the supports they need to be ‘productive members’ of their communities. A specific focus is on how to do it and why we chose to do it, to live well with madness is what I am referring to.

When I came to NAMI, I felt I had found the answer to my needs/mental health. I found a group involved in a statewide org, run by consumers, with consumer BOD members and consumers as state MH Board members and it all tied into a National org that said it was for us. Now I see ONLY in the past 5 years a great change has been happening at the National level to be inclusive — now trying to get the ‘old’ guard to let go and trust consumers is expected. How will we/they do it? NOT OVERNIGHT ..

So when I attended 2001 Alternatives Conference (try to go to one ..) I was a proud NAMI-ite. Was I surprised to learn that not all NAMI affiliates, State org were not like Alaska, indeed it was mentioned that I might not wear my membership badge so boldly, if I wanted to be heard. I took heed, did not hide my affiliation, but participated as myself in the conference event. Since then I have participated in this list from, I think, the beginning and continue to share info about the ‘work’ of NO as I go about my work in Alaska.

This is not an overnight happening. Many of these valuable souls have had to hang in there on sheer frustration, recently they came together — and I think 1999 has an important meaning — at the summit in Portland Ore where a concept was put in place to start building a National Organization, a Voice for persons experiencing (again, use your own word) mental illness. The voice is from those who have lived well, despite any of the possible kinds of traumatic experiences relating to MI who want to go the next step and represent the ‘consumers’ of America. I believe there are many in NAMI’s ‘consumer’ movement who would appreciate this (and do it daily in their communities — hopefully NOT despite their old guard NAMI folk).

I tried for a while to figure out how to be involved in both and make it work within NAMI, as they are an organized group. I do not think this will work yet, for me. Certainly being supportive of changes from the perceived old NAMI to the new NAMI are good but seeing is believing. Many here, have a bad taste and have experienced very negative stuff — in the name of NAMI.

This is, again, my take. I can’t go out and read all the deep thinkers referred to here, I can read some of them. I can’t make it all right, but I can work to carry the message of hope. And for those interested I encourage them to listen in and take what you need. It is hard to organize a room full of people, much less a diverse membership of all who want to join. This is a fairly sophisticated ‘revolution’.

Whew, it is amazing to particpate in discourse with people who are sharing the commonality of MI, who live all over the country, who survive in so many ways.

Again thanks for the time you give. You make me think.

Susan

Juneau, AK