sea star partially submerged

To: <no-list@yahoogroups.com>

From: "Bonnie Schell"

Date: Sat, 1 Nov 2003 09:10:27 -0800

Subject: RE: [no-list] Re: belonging conundrum

This conversation, which would only reduce our numbers, makes me wonder if NAMI asks if the family member was a step-father, a half sister, actually a foster parent, never at home, the third wife, therefore mother, present for only a month but who said in two minutes: This family would be just fine and have no problems if they didn't have to always take care of YOU. You are no good, a disappointment to all humanity." Does NAMI ask for DNA? From what does our obsession with truth/purity (real mad client) stem?

Shall we throw out those who didn't qualify or who didn't want Supplemental Social Security Income? Or who said NO Thank You to SSDI?

Are we going to reduce ourselves to a pity contest of "My Treatment has been more degrading than your treatment?" or "I get a taller Survivor Crown because I escaped?"

People at the bottom tend to want to create stratification in their low ranks so some can feel higher (better) than others.

I beg you to drop this pursuit. My editing rule sometimes is is if you can't decide on a piece of language, perhaps the sentence is best left out altogether.

We do not live in the Middle Ages or even the early 20th century where the skilled and best learned can debate endlessly on the perfect phrase that no one will be around to read in their life time. We live in an age of mass communication by the second.To be more than a footnote in some unread treatise on the mental patients' movement we will have to have better public relations about ourselves, some simple, memorable sound bites, short talking points. How can we have a grassroots groundswell if we can't explain ourselves before the listener or reader's face and brain cloud over?

I read Marty's post from TAC with some admiration because if you compared it with typical NAMI communications of ten years ago you would see a lot of change. They celebrate victories--yes, with some hype. Why else do people buy Durocell Batteries rather than the one on sale?

We do have a product - acting in a way that will elicit more meaningful, respectful dialogue and along the way creating (dialogues) processes that engender that.

Our goal is not the bottom line ($$$), except in number of participants counted, who will hear that they are prized human beings and who can be called on for letter writing and meetings to create a crowd.

I think we are trying to improve the way people labeled with (real or supposed) mental disorders are treated, talked to, legislated in behalf of.

While we went around for 20 years feeling good because the Center for Mental Health Services funded what was called an Alternatives conference and at the same time was laying down approved services that were in fact not alternatives, except acupuncture in CA, we believed our own story. We thought someone loved us; the someones were simply trying to keep their jobs and it was politically correct to talk about consumer-run, then empowerment, now recovery, now faith-based lifting up the socio-economic ladder. Some really believed; then they retired to assisted living and writing to their grandchildren.

Government workers, even if everyone from the Feds down to the lowly paid social worker understood where we are coming from, do not shape society. They follow regulations. In our present period of history, corporations shape our country, what we consume, what our options are. It is not that people think we don't need hospitalization. There is simply more profit in pills than in running hospitals. Today it is almost impossible to seek Asylum in a hospital if you want it or to have a head injury or broken leg fixed in an emergency room. [The media is now creating a backlash against the indigent and homeless for using the ER and Depriving the Better people of care because it is costing them Money to take care of a country with high unemployment and a huge unhoused population.]

In the present economy, there is something pitiable about our wearing a sign that says I Deserve Respect. It is a cartoon. You cannot legislate Respect. Americans basically believe that Respect is Earned, a la Ralph W. Emerson.

Respect is based on the Americana Premise that All Men are created Equal, endowed by the Creator with.... MOUTH magazine (disability movement) had a cartoon in the last issue of a gent in full 18th c. wig saying All Men are Created Different. The words and image stuck in my mind.

I want to live in a world (want my grandson to live in it because I know I won't) where children are taught how to communicate with a person who doesn't have sight, or hearing or expected social skills or a way to process incoming sensory data or facts, or someone who thinks on 3 tracks at once, or someone who was beaten or shamed growing up or sniffed glue or took LSD too many times. Taught to communicate with all people because out of the masses are people who will be worth it to know, people who will be treasures to know, people who will be witty, who think out of the box, who work like a slave for the good of others. Each with his/her particular strength and funny, understandable, okay weaknesses (even being boring and tedious and long-winded).

Joe R. operates at the level where I knew he would be able to get us an office if it were possible. I celebrate that. I celebrate Marty being skilled enough to run a piece of the national NAMI organization. I celebrate everyone on this list who was able to get a computer and screen of their own, possibly a printer, and BE HERE. I celebrate anyone who can find a library or drop-in center or community college lab and log on. The Grassroots will grow out of an attitude of Celebration, of Ability, of powerful Empathy. We are capable of having a ground swell of people e-mailing and faxing and writing the message that a particular Public Policy is Wrong and Hurtful. [But I don't think we have an idea of what Public Policies we would put in place instead.]

Grass will not grow with fault-finding, nit-picking, re-labeling ourselves as not fit for participation. This is what society does to us to keep us out of mainstream participation where we would have a chance to influence the direction of things. We learned the lesson well; we turn around and practice this insidious art.

I am a Marxist of the Groucho school. I think there is great wisdom in his question or quip "Why would I join a club that would have me as a member?" It has to do with how you define yourself and the club, doesn't it?

I digressed, as usual.

We are people who have behavioral and cognitive differences [for many reasons] with which the ordinary person is not comfortable. Our country is no longer a great country because too ordinary people are in charge of it.

I spent five years as part of a radical activist organization carrying signs, being threatening, acting out, making demands-- to no avail. The Mental Health System and the way we were thought of only solidified. I have spent the last 12 years making the Ordinary persons (with power to approve and disapprove and dispense or not dispense funding) comfortable because I saw that as a strategy for getting to the table. I learned apology, compromise, and feigned gratitude, and a great deal of insight into why things happen the way they do. I have helped people play the Trump Card of Victim and Injury to get money and attention, and learned that Charity and Pity have a Price. I have participated in Andrew's dialogic models of interaction and other's events of Apprecciative Inquiry which I see a valuable tools to reduce power differentials and enable people to see one another as people with stories that drive their intent and actions.

There has to be more than this tool. Can we be as powerful as TAC and hope to change anything at all in some other way that has more integrity? Can we get researchers to be working on our hypotheses? Can we shape the messages of Pharma companies? Can we define the president's construct of faith-based initiatives? Can we influence the curriculum in primary and secondary schools? Can we prevent future marginalization of some people?

Santa Cruz, CA