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Consumers Gather In Plymouth To Hear Pat Deegan

As reported by Nan Donald in this edition of the Nutshell, the fledgling organization C.H.A.N.G.E. is sponsoring gatherings of consumer/survivors in different regions of the state. Andrew Palmer and Linda Stein both worked at the Southeast Regional Gathering as volunteers. Together in this article they bring you a detailed account of the April 10th happening.

April 10th 2001 Plymouth—The first in a series of 3 planned regional gatherings for consumer/ survivors in Massachusetts was held at the Plymouth Public Library. The gatherings are being organized under the auspices of Consumers/survivors Helping, Advocating, and Networking for Growth and Empowerment (C.H.A.N.G.E) with support from M-POWER, federal and national grants, and DMH’s Office of Consumer and Ex-patient Relations (OCER). 

Steve Holochuck Director of DMH’s Office of Consumer and Ex-patient Relations was the emcee. He welcomed the audience and before introducing Keynote speaker Pat Deegan he talked of his debt to Pat for his own recovery. Many years ago he’d read some of her published work on recovery and been inspired by it. Steve became an active leader in the Boston Chapter of M-POWER and later was hired as the OCER Director. 

Pat is a consumer/survivor who has experienced the despair of institutionalization and the struggle of recovery. She has traveled the path to wellness from the back wards, to the halls of academia, to a prominent position of leadership in the movement for psychiatric patients’ rights. For many years Dr. Deegan has written and taught and fought for empowerment and recovery oriented consciousness in society at large and from the mental health system in particular.

Pat’s presentation on the history of the consumer/survivor movement was fascinating. She began her presentation with some words for the audience about the movement. She then moved to a slide presentation on specific examples of consumers in the 19th century who bravely defied psychiatric oppression alone. Pat also showed slides of the first organized efforts by consumer activist groups from the 1970’s. One slide in particular was uplifting to see. It showed a group of c/s/x from the Mental Patient’s Liberation Front (MPLF) that had chained themselves to the entrance of a psychiatric institution which was violating consumer’s human rights with excessive use of electric shock “therapy”.

 However, the most poignant moment in Pat’s presentation occurred when she showed us a photograph of a woman’s seclusion blanket. This "schizophrenic" woman had been held in isolation at a state hospital for an interminable length of time. The woman’s providers had little contact or conversation with her because they saw her as an out-of-touch hopelessly psychotic patient. Over the years the woman covered her blanket with hand embroidered messages which at first glance appear cluttered, incoherent and chaotic. Her keepers-- seeing through the lens of the psychiatric labeling process--assumed these messages merely reflected the inner chaos of a delusional mind. Yet, Pat took the time to closely examine the messages embroidered through the years all over that blanket. What she found were coherent messages which express the perfectly human need and longing for nurturing and love. Messages such as “To have to hold and to love.” "Wait for me, are you coming? I love you, Christmas I’m lonely"; and chillingly “rape” are all over this blanket. (to see a photo of the blanket go online and check this url at the National Empowerment Center’s website) 

This image was one of many examples used to illustrate the major point Pat wanted to leave the attendees with. As she said: "you are more than your diagnosis/label, You are not a ‘schizophrenic’ or a ‘manic depressive’ you are first and foremost a person, a human being. If you accept this idea as your basis for thinking about yourself then you have already joined me in this movement for human rights." 

After the slide show Pat engaged the audience in a dialogue about important issues in the lives of c/s/x. Rather than control or guide the conversation; Pat threw the floor open as she facilitated a rap session in which many consumers felt free to vent their anger and frustration about stigma, the use of restraint and other issues. The room came to life with more people speaking out after one consumer expressed the opinion that at times restraint is inevitable and necessary. In keeping with her style of nonjudgmental facilitation Pat graciously thanked the pro-restraint attendee for her opinion and for “bringing the room alive’. Pat then used this moment as an opportunity to call on the newly roused voices in the audience who now clamored to be heard

During our debriefing after the event the planning team discussed that one area of this gathering which may need to be improved at future gatherings is retaining participants after the keynote speech. It seems that many attendees were drawn to the gathering because Pat is well known and highly regarded, and then about 1/2 our total attendance left the gathering after the keynote presentation. In the second half of the program we divided the audience into small discussion groups. This is where we planned for the up-close and personal organizing phase of the event to occur. 

We asked that people that did not identify themselves as c/s/x’s attend a separate group facilitated by Nan Donald. Despite the number of people that chose to leave, the groups we did hold with those in attendence were fun, informative, and friendly. They helped us to make new connections with people from the Southeast area. Most of these individuals who (like the 19th century c/s/x rebels Pat described in her presentation as heroically struggling on their own) have been doing advocacy and recovery work without the support of an organized entity like M-POWER and C.H.A.N.G.E. Our goal is to assist these consumers in making connections with other like-minded consumers in their area and with being connected to C.H.A.N.G.E through the work of a regional C.H.A.N.G. E. organizer. Eventually we would like to have a C.H.A.N.G. E organizer in each of the six DMH regions throughout the state. The c/s/x’s in each region would decide on which local issues they might need mutual support or want to take action on. In return, belonging to a unified network, we envision our grass roots will be strong enough to stand together when statewide issues which affect our lives are in the balance.