October 2007 – Behavioral HealthCare

Advocacy

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A PLAN FOR A NATIONAL CONSUMER MEMORIAL

It will rise on the grounds of Saint Elizabeths in Washington, D.C.

by LARRY FRICKS

“Rows upon rows of numbered, small, rusted markers as far as you cansee. No names, just numbers. It must be the most gruesome sight inGeorgia. Unknown humans, shunned when living, deprived of their verynames in death—and known only to God.”
    —the late Joe Ingram

Ingram was describing the graves of some 25,000 patients buried at Central State Hospital in Milledgeville, Georgia, where he worked for 50 years. These and hundreds of thousands of shunned “unknown humans” interred nationwide, however, finally are receiving some of the respect they deserve. Across the country, advocates are working to restore grave sites at state hospitals, and fund-raising for a national consumer memorial in Washington, D.C., has begun.

Under the proposed design, peaceful gardens, reflective of the moral treatment model brought to the United States by English Quakers in the 1800s, will be the focus of the national memorial, which will be at Saint Elizabeths Hospital in Washington, D.C. The site will be easily accessible from a subway station near the memorial’s entrance gate.

“You’ll wind through gardens with rock markers from all 50 states listing numbers buried and at which institutions,” says Dr. Pat Deegan, technical advisor to the national memorial, “and then exit through the gate back into the community, with a takeaway message of ‘a life in the community for all.’”

District of Columbia Department of Mental Health Director Stephen T. Baron and his staff have led the efforts to identify land for the memorial and secure a local engineering firm to donate an architectural rendering of the memorial. The initial design, expected this fall, will help determine the projected cost, now anticipated to exceed $1 million. A three-year formal fund-raising drive is being planned, although donations already are being received.

“It is fitting that this memorial be located at Saint Elizabeths, given its history as a leader in moral treatment,” says Baron. “We are excited to participate in this national project and are committed to moving it ahead as quickly as possible.”

Moral Treatment

Opened in 1855, Saint Elizabeths was the first and only federally funded asylum and originally was called the National Asylum for the Veterans of the Army and Navy and Residents of the District of Columbia. Overlooking the Anacostia and Potomac Rivers, Saint Elizabeths was designed to be a model moral treatment asylum with peaceful gardens. It was a pet project of reformer Dorothea Dix, who had experienced a “breakdown” as a young woman.

Dix’s recovery benefited by spending more than a year in Liverpool, England, resting in the home of the grandson of William Tuke. Tuke, a Quaker merchant and doctor from York, England, founded a retreat asylum in 1792, modeling it after a simple family farm. Tuke’s asylum rejected harsh “treatments” such as mechanical restraints (e.g., chains and straightjackets). Believing patients were inherently good regardless of their behavior, Tuke focused on emotional and spiritual recovery—being “moral”—rather than on restraints and punishment. The Quakers practiced gentleness and respect attuned to the needs of the ill, offering an inclusive, homelike setting that included garden walks, nourishing food, recreation, reading, and sewing.

The original goal of moral treatment asylums was humane treatment, but by the late 1800s medically focused state institutions began to replace Quaker asylums in the United States. Moral treatment practices gradually were eroded as state institutions became overcrowded.

The Georgia State Lunatic Asylum, opened in 1842 in Milledgeville, originally promoted moral treatment. The institution went from a place where the superintendent and his family shared meals with patients to a small city of 3,000 acres and a patient population that swelled to more than 12,000 in the late 1950s and early 1960s. In fact, it was once known as the “world’s largest insane asylum.”

Many people sent to the Milledgeville institution after the moral treatment era were subject to abuse and neglect, forced lobotomies, dangerous experimentation without consent, electric shock treatment used as punishment, and over medication. Most never returned home, and up to 25,000 died there and were buried in graves marked only with numbers on the grounds. It’s reputed that no other state facility in the nation has more patient graves.

Across the country, Eva York’s remains aren’t even buried, but rather are in a corroding canister on a pine shelf in the 122-year-old Oregon State Hospital in Salem (where One Flew Over the Cuckoo’s Nest was filmed). Her urn is one of 5,000 in the hospital’s “Cremains Room.” In 1896, York died in a bathtub at the hospital, then known as the Oregon Asylum for the Insane. An inquest absolved the hospital staff, but no one claimed her corpse. She was buried in the asylum cemetery but exhumed and cremated 18 years later. York’s story finally was told in a series of Pulitzer prize winning editorials in The Oregonian.

Memorial Momentum

Motivated by these tragic stories, advocates are working to restore grave sites and create better conditions for current patients. For example, in 1997 advocates began restoring the Georgia Central State Hospital cemetery to honor the 25,000 patients buried there. In the process, they found thousands of displaced markers, which during the late 1960s and early ’70s had been removed or pushed into the ground to make mowing the grass easier. Those markers became the part of the memorial shown in the figure.

Don Schanche, formerly a reporter for the Macon Telegraph who wrote numerous stories about the cemetery restoration in Milledgeville, says mental health consumers are leading the way to memorialize those who went before them to challenge stigma and old beliefs.

“There is something compelling whenever people without a voice are given the chance to speak,” explains Schanche, who now writes for the Associated Press. “And if the voiceless people happen to be speaking from the grave—and if they are given a voice by living people who have suffered and been voiceless themselves—there is no way to ignore the story.”

Rick Attig and Doug Bates, associate editors of The Oregonian, agree. Their paper’s editorials prompted the state to address deplorable conditions at Oregon State Hospital. The governor and legislature subsequently appropriated millions of dollars to replace the facility.

These state-based efforts eventually coalesced in the national memorial project. Joe Swinford, a past-president of the National Association of Consumer/Survivor Mental Health Administrators (NAC/SMHA), whose members make up the office of consumer affairs (OCA) in most states, traces the national memorial project to his organization’s August 2004 meeting in Washington, D.C. During that meeting Nebraska OCA Director Dan Powers envisioned a memorial honoring those buried on the grounds of state hospitals. After a series of meetings and calls, the NAC/SMHA and National Association of State Mental Health Program Directors (NASMHPD) were onboard.

The Memorial Steering Committee’s Advisory Council includes the following national organizations:

• Depression and Bipolar Support Alliance (DBSA)
• Mental Health America (MHA)
• NAC/SMHA
• NASMHPD
• National Alliance on Mental Illness (NAMI) Consumer Council
• National Coalition of Mental Health Consumer/Survivor Organizations (NCMHCSO)
• U.S. Psychiatric Rehabilitation Association (USPRA)

The Advisory Council is advised on local consumer grassroots support for the memorial by the following consumer organizations:

• Consumer Action Network of D.C. (CAN-DC)
• Georgia Mental Health Consumer Network (GMHCN)
• Mental Health Empowerment Project (MHEP)

Supporting organizations and individuals are sharing resources to help build the memorial. The MHA Board voted to be the fiscal agent and has created a tax-exempt fund already banking donations. The DBSA Board voted to provide funding for a traveling memorial. Local consumer organizations can request the traveling memorial to help generate funds for the national memorial and also cemetery restoration projects in their states. National consumer leaders are signing up to provide pro bono presentations to raise money. Organizations outside mental healthcare also are stepping forward to support the memorial; the University of Georgia School of Environmental Design has agreed to provide consultation and student support.

“We hope that every consumer can visit the Washington, D.C., memorial and come away inspired and empowered to work for a full life in the community for their peers,” says DBSA President Sue Bergeson. “We also want to bring the experience to them through our 1,000 support groups across the country and the traveling memorial.”

USPRA has donated funds and was the first national organization to promote the memorial on its Web site’s home page. Visitors to http://www.uspra.org (click on “Support the National Consumer Memorial”) can view a ten-minute film called Recovered Dignity donated by Dr. Tom Vendetti of Hawaii, who has produced PBS documentaries. Recovered Dignity features Rosalynn Carter and others, who share the story of cemetery restorations led by consumers. The film also includes a “truth and reconciliation” apology by Dr. Tom Hester, chief of Hawaii’s Adult Mental Health Division, for segregation, abuse, neglect, and the desecration of graves in Georgia, where he previously was the medical director and oversaw the state hospitals.

When a group of oppressed people can not only recover, but recover to the point at which they document past discrimination and then organize memorials and reconciliation, dignity is restored, hope flourishes, and personal potential is called forth. The greatest potential for recovery transformation is not in mental health systems—it’s within the individual.

Larry Fricks is Chair of the national consumer memorial project. He is the Director of Appalachian Consulting Group and Vice-President of Peer Services for the Depression and Bipolar Support Alliance. Fricks is on the Board of Directors of Mental Health America (MHA) and on the Advisory Board for The Carter Center Mental Health Journalism Fellowships.

For 13 years Fricks was the Director of the Office of Consumer Relations and Recovery in Georgia’s Division of Mental Health, Developmental Disabilities and Addictive Diseases. He is a founder of the Georgia Mental Health Consumer Network, Georgia Consumer Council, Georgia’s peer specialist training and certification, and Georgia Peer Support Institute.

Fricks is the 1995 recipient of MHA’s Clifford W. Beers Award and the 2001 recipient of the American Association for World Health Award for significant contributions to improving community mental health. In 2004 he received the Recovery Award from the International Association of Psychosocial Rehabilitation Services.

Tax-exempt donations for the national memorial can be sent to: Consumer Memorial Fund, c/o Mental Health America, 2000 North Beauregard St., 6th Floor, Alexandria, VA 22311.