National Empowerment Center - Articles

It's About Time: Discovering, Recovering and Celebrating Consumer/Survivor History

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.

1. Did you know that prior to 1960 it was common for physicians and psychologists at state hospitals to be assigned help-patients who acted as personal servants in charge of house cleaning, gardening, laundry, and cooking?
2. Did you know that in 1995-97 at least four major books on the history of mental health care in America have been written and not one contains first hand accounts from ex-patients?
3. Did you know that the federal government established the fully segregated Canton Indian Insane Asylum in South Dakota in 1902 and that the town of Canton has since built the Hiawatha Municipal Golf Course around the graves of 121 former inmates?
4. Did you know that only one type of mental illness was thought to exist in American slaves? It was called Drapetomania and was defined as the inexplicable urge of a slave to run away!
5. Did you know that there are people who still remember what it was like to be a patient at a state hospital in the 1930's? They remember working on the hospital farms, the experience of malarial treatments, wet packs, metrazol shock, insulin coma therapy and how (or if) things changed with the introduction of Thorazine in the 1950's. When our elders pass on their stories will be lost forever.
6. Did you know that Central State Hospital in Virginia was established in 1869 exclusively for "colored insane"?

The project we are proposing involves three interconnected parts: discovery, recovery and celebration of our collective history:

Discovery of our history

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 history

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:

1. Former state hospital patients having the chance to return, to make their grief tangible, and to work through that grief with others through cemetery restoration.
2. Consumer/survivors joining together on moral-high-ground and calling out to the state to recognize the humanity of those buried in state hospital cemeteries.
3. By telling the state that the graves of former patients must be restored and properly memorialized, we are saying in a loud and proud way, "We are people too!"
4. The project unifies groups around a common goal with consumer/survivors in leadership roles. Collaborating groups have included family members of the deceased, clergy and church groups, AMI groups, civic groups, former hospital employees, and state officials.
5. The press and media show remarkable interest in this issue as evidenced by newspaper and television reports. In turn, media publicity generates a new and respectful image of people with psychiatric histories as activists and community leaders.

Celebrating our history

Slide Show: Massachusetts Consumers/Survivors/Ex-patients
Campaign to Restore State Hospital Cemeteries

Click here to view Slide Show:

"To me, seeing these cemeteries is the worst thing I have ever seen happen at Danvers State Hospital." Jim Squeglia

"It has been said that no families have come forward to claim their relatives buried in these cemeteries. WE are their family." Mark Giles

"We are speaking for those who can no longer speak for themselves. We are the voices of those who are buried here. We are the echoes they left behind." Bill Capone

"We need to acknowledge these people in death but also how they suffered in life." Sandy Fallman

"The State owes us an apology. They should apologize!" Bill Capone

"They were humiliated and abandoned in life. The very least we can do is make sure these people get the dignity in death that they never got in life." Pat Deegan

"This is about respect. We have been neglected for too long. The rebirth of the cemetery is just a small step towards respect and dignity for us all." Mark Giles

"We have a vision. We see the cemeteries both as sacred ground and sanctuaries for both the living and the dead. We see places of Peace and Beauty. We see proper memorials, a quiet fountain, and the sound of birds." Judy Robbins

"Do the right thing. It's not about money. Restore these cemeteries. DO THE RIGHT THING!" Mark Giles

Copyright © 2009, National Empowerment Center, Inc. All rights reserved
599 Canal St., Lawrence, MA
800-power2u (800-769-3728), From outside the US: 978-685-1494
www.power2u.org - Site by Tom Rogers Web Design