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Getting Started

The best way to get started doing state hospital cemetery restoration is to get out there with a camera, find the cemeteries, photograph them and get a group of ex-patients together to decide what should be done. It's not an overnight project and emphasis should be as much on how the project is done as on the end product. It might be easier for state hospital staff to restore the cemeteries, but then an important opportunity for ex-patients to learn leadership skills is lost.

We feel that ex-patient leadership is essential to this project. The perspective of ex-patients is valuable and is not necessarily the same as the perspective of family members or staff. Ex-patient leadership in state hospital cemetery restoration challenges stigma and the stereotypes of "dangerous deviants".
It gives the public a new view of us as civic leaders. This work is empowerment-in-action. It involves, not just individual recovery from the alienation and pain that some experienced in state hospitals, but also collective recovery. Collective recovery happens as our historically devalued group says, "Give us back our names!" and then works to replace numbered markers with proper headstones.

Pat Deegan has been helping groups of ex-patients begin cemetery restoration in a number of states and has some suggestions regarding frequently asked questions.

"I've looked all over the property but can't find a cemetery at this state hospital. What should I do?"

"What's the best way to get ex-patients involved in state hospital cemetery restoration?"

"What about confidentiality laws?"

Answers to Frequently asked questions:

1. "I've looked all over the property but can't find a cemetery at this state hospital. What should I do?"

As incredible as this may sound, cemeteries containing hundreds and even thousands of graves of former patients at state hospitals have been "lost". If you can't find the cemetery at a state hospital then you must begin some detective work and search for clues. Here are some things to consider:

  • How old is the state hospital? If you are working with a state hospital established in the 1800's, then there is almost certainly a cemetery on the grounds of the hospital. I have only seen two exceptions to this general rule.
  • All state hospitals had/have a board of trustees or some other governing body. The board of trustees usually write an annual report about the hospital. Especially for older hospitals, these annual reports are rich in details about life at the institution. For instance, when I could not locate the cemeteries at Danvers State Hospital, I went to the local library archives and found the annual reports of Danvers State Hospital dating back to the year it opened in 1878. I read through the first report and it said that five people had been buried on the grounds of the hospital that year. Thus I knew for sure that there was at least one cemetery to look for. At other institutions I found that some annual reports mention male patients making caskets in the woodworking shop or women patients making burial gowns or burial pillows. Sometimes you will find mention of burial costs in the accounting ledger, and so on. These are the types of clues that will help you establish if there is a cemetery.
  • Talk with ex-patients of the institution. Sometimes ex-patients know the grounds of the state hospital very well and can tell you if they ever saw a cemetery. Older employees can also be helpful in this regard. I know of one situation in which the cemetery at the state hospital in Maine had been "lost" and it was a former employee who directed activists to it.
  • Look for burial records, autopsy records and "death books" among the old documents from the institution. If you find any of these, you may find the clues you are looking for.
  • Talk with local undertakers and funeral home directors, especially the older businesses that are located near the state hospital. Often state hospitals would contract with a local undertaker to bury former patients.
  • Talk w/ local clergy, especially former chaplains. In one case I was able to find a priest who told me about a forgotten cemetery from the time he was a chaplain. In another instance the burial book for a state hospital was kept in the chapel of a facility that was still in operation.
  • Sometimes state hospitals made arrangements with local churches, synagogues and/or the local town to have former patients buried in "pauper fields". For instance, I could not find cemeteries at one state hospital and worked with activists to locate the Catholic cemetery in the local town. The cemetery keepers were able to identify that former patients of the state hospital were buried with numbered markers in a paupers field at the back of the cemetery.
  • Remember that some institutions cremated the remains of former patients and therefore no formal burial ground was erected. For instance, at NAPA state hospital in California, former patients were buried for a number of years, and then the policy changed and they were cremated. After a few decades the policy changed again, and former patients were again buried but this time at local cemeteries.

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2."What's the best way to get ex-patients involved in state hospital cemetery restoration?"

My experience, and that of Larry Fricks in Georgia, is that the best way to get ex-patients involved in state hospital cemetery restoration is to organize a slide show about the forgotten cemeteries and/or arrange for a field trip so that they can experience the cemeteries first hand. Ex-patients need a chance to see and experience the indignity of these burial sites. Often they get angry and this anger is a powerful motivating force that they can use to fuel their activism. To keep ex-patients involved it is necessary to have regular monthly meetings, to celebrate every achievement on the long road to restoration, and to solicit their direction, help and talents at every step of the journey. Do not censor the feelings or thoughts of ex-patient activists. Restoring the cemeteries has a different significance for ex-patients than it does for people who have not been in institutions. The range of feelings runs from gratitude and a feeling of joy at being a part of the restoration effort, to feelings of anger and rage at the abuses suffered in institutions. Often people want to talk about getting a formal apology from the state as part of the restoration effort. See the home page of this website for a link to the formal apology that consumer activists in Georgia received from the Department of Mental Health's Medical Director, Tom Hester MD.

Working with a smaller steering committee of 10-12 ex-patient activists is a good way to use the talents of the people who are most committed to the cause of restoration. Keep a mailing list of the larger group of ex-patients and allies who are less intensely involved but will turn out for events such as rallies, dedications, fundraising, etc. Be sure to update your mailing list often and always circulate a sign-in sheet at rallies and so on. This way your mailing list will grow and the number of people available to turnout for events will increase.

To read more about how we specifically recruited and maintained the membership of ex-patients in the Danvers State Memorial Committee, see the section of this website titled, "Our Work".

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3. "What about confidentiality laws?"

I have found that there is enormous variation about how confidentiality laws are interpreted in relation to state hospital cemetery restoration work. Two issues seem to come up. The first issue is that some state hospital or state mental health authorities seem to think it is a breach of confidentiality to put names on grave markers. The second issue is that some of these people object to sharing lists of names of former patients buried at state hospitals. Here are my thoughts and observations in regards to these objections:

  • It's a breach of confidentiality to put the names of former patients on grave markers - My first approach is to say that this is not issue of confidentiality but an issue of shame and stigma. Why would mental health authorities buy into the shame and stigma associated with a diagnosis of mental illness? Aren't state mental health authorities fighting such stigma? Replacing numbers with proper names is a respectful act that fights stigma. State hospital patients were not asked if they wanted to be buried with a number. My hunch is that they would have wanted to buried like other citizens - with dignity.
  • My second approach is to research if other state hospitals and state schools for the retarded in the same state exclusively use numbers. My experience is that in some states, the state schools tend to be more progressive and have properly memorialized former patients with names on their gravestones. My research in Massachusetts showed that Wrentham State School and Belchertown State School had restored and properly memorialized their cemeteries with names. If it can happen in Department of Mental Retardation facilities, why not in Department of Mental Health cemeteries?
  • My third approach to challenging confidentiality rulings is to look at what is being done in other states. For instance in Columbia South Carolina, beginning in 1988, the DMH commissioner just began having former patients buried with their proper names. If DMH will do it in South Carolina, why not in our state? Or take, for example, the experience of consumer activist Jim Fox in Connecticut. Jim organized with local clergy and other ex-patients and said, "Give people back their names!" Eventually the Connecticut Attorney General ruled that the confidentiality law did not apply to the people buried at Connecticut Valley Hospital in Middletown. If the Attorney General in Connecticut makes such a ruling, why not in our state? Learn more about the Connecticut story in the Technical Assistance Manual that you will find on the home page of this website.
  • It's a breach of confidentiality to share the list of names of those buried in a state hospital cemetery. My first approach to this objection is to reason with the state hospital or state mental health authorities. I feel that if a credible group of ex-patient activists and allies have a coherent plan, timeline and funds to restore a state hospital cemetery and replace numbers with names, then the list of names should be released to the group. This has been the position of DMH Commissioner Sudders in Massachusetts and seems reasonable. If that approach does not work, there are ways around it. For instance, many towns in which state hospitals were located had to keep their own set of death records. These are public records and are not protected by confidentiality rules. Thus, at Danvers State Hospital the state had lost the record of who was buried there. We had to reconstruct that record. We began by looking at the death registers at Danver's Town Hall. We found that (for 125 years) the town clerk went up to the state hospital once a month and recorded all the deaths at the hospital for that month. The clerk also recorded where the individual was buried, including if they were buried at the state hospital cemetery. In this way we were able to reconstruct the record. We also found death certificates at the state Bureau of Vital Statistics. These records were also open to the public.

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