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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to questions
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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