From Chapter 19
February 10, 1988
A former consumer of mental health services in the state of Oregon, I am currently involved in various activities directly involving the welfare of present and future consumers. I am presently on the Board of Directors of the Mental Health Association of Oregon, on the organizing committee for the 1988 ARPA national conference, involved in the review of a federal grant proposal, was part of a group that met with the new head of the State Department of Human Services plus miscellaneous activities and future commitments.
I welcome the beginning acknowledgment that consumers have the right to have a voice in their lives, a basic that too many have never had in the first place. From the above involvements, however, something is becoming very clear to me. With a planned agenda at all of these meetings, the parameters of discussion are well established which means the input of consumers is limited by decisions made before they got there. A basic philosophical position has been established FOR us; we have had no voice in that arbitrary decision and there has been no “appropriate” time or place for epistemological discussion.
Some of “us” are standing up in meetings with professionals saying, “We have found something that worked for us,” yet not one professional has approached us to ask, “What worked for you?” Nobody cares that I did NOT blow my brains out in front of Clackamas County Courthouse, that I did NOT burn my father’s flag on the steps of this nation’s capitol, that I did NOT cut my husband up into little bitty pieces! Some of “us” do adjust, get better and even recover – in spite of the odds. I propose a meeting in which “we” tell what works – WE establish the purpose of the meeting; we make an appropriate time and place.
In 1976 I wrote: “An outsider could not study my family, only an insider. An outsider would not know which questions to ask.” From Nobel winner Ilya Prigogine’s Order Out of Chaos:
“In hundreds of different ways, scientists have expressed their
amazement when, on determining the right question, they
discover they can see how the puzzle fits together.”