National Empowerment Center - Articles
In early October 1999, the National Empowerment Center Inc. received a grant supplement from the Center for Mental Health Services (CMHS) to begin an 18 month study into the history of consumer/survivors in U.S. mental health systems. Pat Deegan is the director of this exciting project. She notes that although there are many books about the history of psychiatry, none have direct quotes about the experiences of patients. This history project will begin to address that gap in the historical record. Below is a summary of the proposed work:
Many oppressed groups have found it necessary to discover and rewrite their history. African Americans found it unacceptable for white people to write the history of Black America. Women found it unacceptable for men to write the history of women in America. Gays and lesbians found it unacceptable for heterosexuals to write their history. In the same way, those of us who have been diagnosed with mental illness can begin to discover, recover and celebrate our history and in so doing define our pride, our power and our collective heritage.
The project we are proposing involves three interconnected parts: discovery, recovery and celebration of our collective history:
Discovery of our historyIn this part of the project we will go to libraries, archival collections and museums to learn more about the history of mental health care in the United States. We will pay special attention to first hand accounts written by former patients. Artifacts such as graffiti on seclusion room walls, patient art, patient diaries, correspondence and keys fashioned out of bits of tin and wire also tell a powerful story. Our job will not just be to study this information, but to organize it so that it can be shared with other consumer/survivors.
There is also another unwritten story in the chapter of American social policy on mental illness. That is the story of segregated care and lower standards of care for people of color. We propose hiring consultants from the African American community and the Native American Community to assist in discovering, recovering and celebrating this untold story. Of course, there are stories from other disenfranchised groups such as gays and lesbians, Hispanics, Asian Americans, women, immigrants, etc. These studies must wait until we find more funding.
In addition we propose to videotape interviews with elderly people who are "living historians". Our elders remember what it was like to live in mental institutions during the 1930s through the seventies. They are the only ones who can tell us what it felt like to have malarial fever treatments, to work on a hospital farm, to receive insulin coma therapy or what it was like when Thorazine was introduced. They are also the ones who can tell us how they survived with their humanity intact and who can share with us the "underworld" of the asylum where friendship, love and even romance between inmates did more to heal than any therapy. This is our heritage. As we approach the year 2,000 it is imperative we gather this heritage through the collective insights of our elders before it is lost forever.
Recovery of our historyBoth Larry Fricks of Georgia and Pat Deegan are currently working with groups of consumer/survivors to restore abandoned cemeteries at state hospitals. Larry Fricks and The Georgia Consumer Network have led the way with a campaign to restore the 30,000 abandoned and forgotten graves at the former Milledgeville State Hospital. After witnessing how deeply empowering this effort was for consumer-survivors in Georgia, Pat Deegan rallied consumer-survivors in Massachusetts to work for the restoration of forgotten cemeteries at the 10 State Hospitals.
We feel certain that other consumer-survivors around the country will feel equally passionate about restoring forgotten and neglected cemeteries in their states. We propose working with the National Association of Consumer/Survivor Mental Health Administrators to identify state hospital cemeteries that have been forgotten as well as consumer/survivor organizations that would like assistance in developing a cemetery restoration campaign. We propose writing a technical assistance manual for consumer-survivors to use in their efforts to restore cemeteries in their states.
Some people may wonder why we would be concerned with cemetery restoration (the past) when there are so many pressing issues (housing, etc.) in the present. Our experience has been that working on our collective past in this concrete way, empowers us in the present and helps us forge new alliances with other groups. There are many healing dimensions to this work that include:
Celebrating our historyIn this part of the project we will prepare a multimedia slide presentation about our history. It will be organized as a traveling exhibit that can also be used as a presentation or workshop. The exhibit/presentation will go on loan to consumer/survivor organizations that are sponsoring statewide, regional or national events. The exhibit and presentations will provide an opportunity for consumer/survivors to gather together to learn about our history, to share their own stories and to marvel at our legacy of strength and love through good times and bad.
Slide Show: Massachusetts Consumers/Survivors/Ex-patients
Copyright © 2013, National Empowerment Center, Inc. All rights reserved