Advocates for patients buried at mental institutions push for the release of names

In a grove of evergreens on the western fringe of an old insane asylum's grounds, are the bodies of 1,000 people who were once called inmates.

They died at the Hastings Regional Center from 1888 to 1959, and a small gray stone marks each grave. There are no names, birth dates, or death dates. Just patient numbers.

The cemetery typifies how state mental institutions across the country once buried their dead during an era when the stigma associated with mental illness was so strong that the afflicted often were dropped off quietly at the institution, never to hear from their families again.

Now, mental-health advocates, historians and others are trying to get states to make the names public.

"These people are being denied the fact that they lived and died, and it's disgraceful," said Catherine Renschler, executive director of the Adams County Historical Society, who is pushing Nebraska to make public the identity of the people buried in the Hastings cemetery.

On Monday, advocates for the release were handed a blow when they learned that the state attorney general backed a policy by the state Health and Human Services not to divulge the identities, citing statutes protecting patient privacy.

Renschler's attorney, Thomas Burke, said he would continue to fight. "If I don't win in court, I'll get it going in the Legislature. I'm not exactly someone who goes away," he said.

The number of patients buried at mental institutions across the nation runs into the hundreds of thousands, said clinical psychologist Pat Deegan of Byfield, Mass., who advocates getting states to release the names.

Deegan, institutionalized for schizophrenia as a teen, has worked on restoration projects at institutional cemeteries in 22 states.

"This, for us, is about dignity and respect and combatting stigma," Deegan said. "We're not going to hide in the shadows any longer. We're not going to hide behind these anonymous numbers. We're taking our place as citizens and demand to be respected."

No comprehensive list of states that have made the names public is available, but Texas, Massachusetts, Minnesota, Washington, South Carolina, Maine and Wisconsin have done so.

Next month, a coalition of mental health advocacy groups will complete plans for a memorial garden at St. Elizabeth's Hospital in Washington, D.C., that will honor the nation's anonymous dead.

States will be represented by stones bearing the name of institutions with cemeteries, said project coordinator Larry Fricks of Atlanta, board member of Mental Health America. The number of dead will also be listed.

"It's for anyone buried and forgotten at these places," Fricks said.

Laws and policies on making the names public vary from state-to-state. Some states withhold names of the buried, some will release names if ordered by a court, and some have open records, Fricks said.

Fricks, who led an effort to restore the cemetery at Milledgeville, Ga. _ once considered the world's largest insane asylum _ said it is a "weak argument" for states to use privacy as a reason for withholding burial records.

"It's a new day," Fricks said. "These people, if their families love them and want to find them, we need to help them. People who are buried have a right to have their name and a right to respect."

Renschler said she receives several inquiries a month from families interested in tracing their genealogy, and some suspect an ancestor might be buried in Hastings.

"It's frustrating for people who are searching for lost family members," she said. "Some know their relative was sent to the regional center, and they don't know what happened to them. Some are told their relative died in Hastings, and they don't know why they were in Hastings. They don't realize there is a mental institution here."

Nancy Kinyoun, the regional center's health information manager, said families can find burial information on death certificates, which are public records. She said families also can obtain patient records by court order on a "need-to-know" basis.

"I've never known anyone to be denied," she said.

But Renschler said families sometimes don't have enough information about a relative, such as formal name and birth date, to gain access to a death certificate. And many, she said, can't afford the expense of hiring an attorney to press the issue.

"We are not asking for medical records," Renschler said. "All we're looking for is the name and dates of their death or burial."

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On the Net:

Mental Health America: http://www.nmha.org/