THE GOOD NEWS: One Man Is Remembered!

On Saturday, May 16, 2015, LAWRENCE MOCHA was honored and remembered as a living, breathing, contributing member of society, 47 years after his death, with a lovely service and memorial. LAWRENCE was a patient at The WILLARD STATE HOSPITAL and served, unpaid, until the age of 90, as the gravedigger for the institution for thirty years. He dug 1,500 graves for his fellow patients, all of whom, with the exception of one other man, remain in anonymity. As you will see in the video below, it was a beautiful celebration of life that not only remembered with dignity and grace MR. MOCHA but all of the nearly 6,000 patients buried in anonymous graves at the 30 acre, WILLARD STATE HOSPITAL CEMETERY.

Lawrence Mocha

Lawrence Mocha

I was honored to be invited to this special event but I was unable to attend. I did however view the entire 55 minute video. I was so happy to see that so many people attended the celebration! I understand that there was quite a traffic jam and the State Police had to be called to divert people away from the WILLARD CAMPUS that held their annual tour and fundraising event for the Day Care Center. I hope in some small way I was able to help get the word out with my book and this blog about the dehumanizing, anonymous graves in former NEW YORK STATE HOSPITAL and CUSTODIAL INSTITUTION CEMETERIES.

Lawrence Mocha's Marker

Lawrence Mocha’s Marker

After viewing the video, there are a few thoughts I would like to share:

  1. The anonymous graves at WILLARD would never have been brought to light, and the suitcases found in the attic would never have been saved and preserved without the tireless work of CRAIG WILLIAMS, Curator of History at The New York State Museum at Albany.
  2. The Lives They Left Behind, Suitcases From A State Hospital Attic” written by DARBY PENNEY and PETER STASTNY, opened the eyes of the public and made us aware of what it was like to be institutionalized. This book inspired so many people, including me, to try to correct the disgrace of anonymous burials in former New York State Hospitals and Custodial Institutions. It led me to ask my State Senator, Joe Robach, to draft a bill concerning the release of patient names, dates of birth and death, and location of grave. Written in 2011 and first introduced to the New York State Senate on March 23, 2012 as S6805-2011, on January 13, 2013 as S2514-2013, and on January 7, 2015 as S840A-2015. As of today, it has not passed into law.
  3. In 2011, The Willard Cemetery Memorial Project was formed. God Bless all the volunteers who made this celebration possible!
  4. JOHN ALLEN, Special Assistant to the Commissioner of the New York State Office of Mental Health (518-473-6579), verified in his statements on the video exactly what I have been stating for years! Thank you, Mr. Allen! He told the story about how difficult it was to match A NAME, ANY NAME, with the correct family especially after multiple generations have passed since the ancestor’s death. He spoke about how problematic it was to find a living relative of the deceased buried in a numbered grave (which is exactly why the Federal HIPPA Law changed in March 2013). I know I’m going to hell for saying this, but it gave me great pleasure watching MR. ALLEN getting choked up as he told his story. Hopefully, he now knows what it feels like to search, and search, and search for a “long, lost relative” and finally finding them. MR. ALLEN also had a photograph of MR. MOCHA which he could show to a long, lost family member. Most of us don’t have that luxury even though photographs were taken of each patient. I would love to have a photograph of my great-mother. It’s simply outrageous that one government agency has the right to withhold the names, dates of birth and death, and location of graves of THOUSANDS!!! We’re not talking about medical records here, only the most basic of information concerning the death and final resting place of our loved ones who happened to live and die in a NEW YORK STATE HOSPITAL or CUSTODIAL INSTITUTION.
Plaque Honoring Lawrence Mocha

Plaque Honoring Lawrence Mocha

A NAME IS JUST A NAME AND MEANS NOTHING TO ANYONE UNLESS YOU’RE THE ONE SEARCHING FOR THAT LOVED ONE! It’s just a name that many other people share, it’s just a birth date, it’s just a death date. NO FAMILY WILL BE STIGMATIZED unless they are like me and tell the world that their great-grandmother lived and died at a state hospital. Remember that when WILLARD opened in 1869, that people were really poor, something that we have a hard time understanding today. Some families did not have the money to ship their relatives’ remains home. To believe that none of these people were loved and or missed is incorrect. To think that no one ever attended their burial or said a prayer for them is simply not true.

VIDEO: A MEMORIAL CELEBRATION FOR ALL THOSE INTERED AT WILLARD CEMETERY.

In case you didn’t catch the fifty-one names, beginning at minute 45, here they are.
I apologize in advance if I misspelled your loved ones’ name.
Do these names mean anything to you?

Names Of The Dearly Departed That Were Read In Public And Recorded On Video At: The Willard Memorial Celebration Saturday, May 16, 2015

1889
June 3 – Hannah Thompson
August 14 – Eliza Delaney
October 16 – Ida Bartholomew

1890
September 9 – James Foster
September 15 – Patrick McNamara
October 31 – Mary Champlain

1891
April 26 – Sophia Anderson
May 26 – Mary Brown
June 23 – Katherine Davis
November 16 – Lavinia Hayes

1892
January 4 – Electa George
June 7 – John Van Horne
September 24 – Mary Church
October 20 – Sarah Scott

1893 January 20 – Susan Dugham
September 26 – John B. Kellogg
December 12 – Effie Risley

1894
January 1 – Syble Pollay
February 19 – Suzanne Klinkers Waldron
March 26 – Carolyn Gregory
June 23 – Elizabeth Weber
August 21 – Sarah Ann Baker
November 8 – Sarah Jane Hemstreet
December 30 – Willis Mathews

1895
February 2 – Sophia Podgka
July 21 – Elizabeth Dawson
November 26 – Parmelia Baldwin

1896
March 3 – Ann Dady

1897
April 27 – Miriam D. Bellamy

1898
August 10 – Julia Holden

1899
November 15 – Delia Richards
December 4 – Genevieve Murray

1900
February 3 – Ellen Jane Roe
May 14 – Honora Nugent
July 1 – Harriet Gray
October 12 – Lottie Sullivan

1901
September 19 – Rachel Tice

1902
August 24 – Emma P. Sandborn

1903
April 18 – Elizabeth Snell
December 3 – Nora Murphy

1904
February 20 – Catherine Walwrath
March 18 – Margaret McKay
April 27 – Ellen Horan
June 21 – Isabella Pemberton
October 29 – Mary J. Chapman
December 20 – Mita Mulholland

1905
August 4 – Susan Stortz
September 7 – Mary Gilmore
October 25 – Adele Monnier

1906
April 11 – Sarah Rooney

1968
October 26 – Lawrence Mocha

Restoring Lost Names, Recapturing Lost Dignity by Dan Barry – The New York Times

UPDATE 12.22.2014 – THE NEW YORK TIMES: No Longer Anonymous: Gravedigger Gets His Due at a Psychiatric Hospital by Dan Barry.

UPDATE 12.21.2014, From DARBY PENNEY: “A shout-out to the power of the press to shame government into doing the right thing, and the power of dogged activists to make change! Breaking news: Lawrence Mocha will be honored by name in the Willard Cemetery. Thanks to Dan Barry’s powerful 11/28/14 article in the NY Times, and years of hard work by Colleen Spellecy and the Willard Cemetery Memorial Committee, the New York State Office of Mental Health has changed their mind and will allow the plaque to be placed with his name and full information about him. They located a relative of Mr. Mocha who gave permission. In addition, according to Colleen Spellecy, “They also want to work with us on a general memorial honoring all of the individuals buried within Willard cemetery. After these memorials are installed they want to support a multi-denominational community service to re-consecrate the cemetery lands and dedicate the memorials. They will then invite the Mocha family to participate in this event and OMH will work with them to provide necessary travel arrangements.”

“OVID, N.Y. — For a half-century, a slight and precise man with an Old World mustache resided as a patient at the Willard State Psychiatric Hospital, here beside spectacular Seneca Lake. You are not supposed to know his name, but it was Lawrence Mocha. He was the gravedigger.

Using a pick, a shovel, and a rectangular wooden template, he carved from the upstate loam at least 1,500 graves, 60 to a row and six feet deep. At times he even lived in the cemetery, in a small shack with a stove, beside a towering poplar.

The meticulous Mr. Mocha dug until the very end, which came at the age of 90, in 1968. Then he, too, was buried among other patients in the serene field he had so carefully tended.

But you will not find the grave of Mr. Mocha, whose name you should not know, because he was buried under a numbered marker — as were nearly 5,800 other Willard patients — and the passing years have only secured his anonymity. The hospital closed, the cemetery became an afterthought, and those markers either disappeared or were swallowed into the earth.

Photo

A few original cast iron grave markers. Nearly 5,800 patients were buried under numbered markers to shield their names. Credit Ángel Franco/The New York Times

Now, though, this obscure gravedigger has come to represent the 55,000 other people buried on the grounds of old psychiatric hospitals across New York State — many of them identified, if that is the word for it, by numbers corresponding with names recorded in old books. This numerical system, used by other states as well, was apparently meant to spare the living and the dead from the shame of one’s surname etched in stone in a psychiatric hospital cemetery.

A retired schoolteacher, Colleen Spellecy, is seeking to end the anonymity, which she says only reinforces the prejudices surrounding mental illness. One way to do this, she says, is to place a plaque bearing Mr. Mocha’s name on the spot where his shack once stood.

“He’s a symbol for what we want to do with all the rest,” Ms. Spellecy said. “It’s almost like if we could just do something for one, we could do it for all.”

But the State Office of Mental Health, which oversees some two dozen hospital cemeteries tucked in upstate corners and along busy Long Island highways, has consistently denied her request. Its officials say that a generations-old state law protects the privacy of people who died in these institutions.

“Stigma and discrimination is alive and well, though I wish it were not,” said John Allen, special assistant to the commissioner of mental health. “Outing every family, whether they want to be outed or not, does not conform with the reality.”

But advocates say that other states have long since figured out how to return names to those buried under numbers — a process that the advocacy organization Mental Health America says would help to end prejudice and discrimination. In an email, its spokeswoman, Erin Wallace, wrote: “These people had names, and should never have been buried with us forgetting them.”

Larry Fricks, the chairman of the National Memorial of Recovered Dignity project, an effort to create a Washington tribute to all mental patients buried without names, agreed. He suggested that the cost of memorializing so many people could be a factor in a state’s reluctance — and some of those books with recorded names have been damaged and even lost over the many years. The issue is not trivial, Mr. Fricks said. “There is something embedded deep in our belief system that when people die, you show respect.”

In addition to his name and burial site, here is what else you are not supposed to know about Lawrence Mocha: Born poor in Austro-Hungarian Galicia in 1878. Hit in the head with a rock as a young man. Drank heavily, was briefly institutionalized, and served in the Army. Emigrated, and found work at Bellevue Hospital in New York City. Caused a ruckus one day and was sent to the psychiatric unit, where he talked of guilt and depression, of hearing God and seeing angels. Sent to Willard in 1918, never to leave. Kept to himself for years, but eventually took an interest in tending to the graveyard. Requested freedom in 1945, but was ignored. Made an extra dollar here and there by preparing bodies for burial. Stopped having episodes, if that was what they were. Dug, and dug, and dug.

Gunter Minges, 73, the last grounds superintendent at Willard, sat on his pickup’s tailgate at the cemetery’s edge and recalled Mr. Mocha in his last decade. A reclusive man, he said. Had special kitchen privileges. Smoked a pipe. Wore hip waders, because groundwater would fill his neat rectangular holes. “He dug until he died,” Mr. Minges said, and was rechristened with a number. Then, with a Catholic priest at graveside, the grounds crew used ropes to lowered Mr. Mocha’s coffin into a hole dug by someone else. “But where it is,” Mr. Minges said, “I don’t know.”

Many of the numbered metal markers, forged by hospital patients and spiked into the ground, vanished over the years, sold for scrap or tossed into a nearby gully as impediments to mowing. In the early 1990s, groundskeepers began affixing numbered plaques flat onto the ground, but the job was left incomplete when the hospital shut down in 1995. In a last-minute search of Willard’s buildings for items worthy of posterity, state workers opened an attic door to find 427 musty suitcases. Among them: a brown leather case containing two shaving mugs, two shaving brushes, suspenders, and a pair of black dress shoes that a slight and precise immigrant hadn’t worn since World War I.

The discovery of the suitcases led to an exhibit at the New York State Museum in Albany, a traveling display, and a well-received book about forgotten patients called “The Lives They Left Behind: Suitcases From a State Hospital Attic.” Confidentiality laws forced its authors, Darby Penney and Peter Stastny, to reluctantly use pseudonyms; Lawrence Mocha, then, became Lawrence Marek.

Ms. Penney said that for the last several decades of his life, Mr. Mocha exhibited no signs of mental illness and was not on any medication. Her guess: “There were certain people who were kept there because they were decent workers.”

Photo

Lawrence Mocha Credit New York State Archives and New York State Museum

And Mr. Mocha was the meticulous gravedigger.

Ms. Spellecy read the book. She is a wife, a mother, and a retiree who lives in Waterloo, about a half-hour’s drive from Willard. Visiting the cemetery for the first time, she “sensed the injustice immediately,” she said, and quickly set about to forming the Willard Cemetery Memorial Project. Its mission: “To give these people a name and a remembrance.”

They have also engaged in a contentious back and forth with the Office of Mental Health over its refusal to grant names to the dead — beginning with a plaque on that boulder to honor Mr. Mocha, and then, perhaps, a central memorial that would feature the names of all those buried anonymously or beneath numbers.

“It’s as if they are saying that they own the cemetery and therefore they own the names,” Ms. Spellecy said. “In so owning the names, they are owning the person — as if these people continue to be wards of the state.”

State officials say that they are bound by state law to protect patient confidentiality, even after death, unless granted permission by a patient’s descendants to make the name public. They also say that attempts to change the law have failed, and that, even now, some descendants express concern about prejudice.

Mr. Allen said that the state had worked with communities throughout New York to restore these cemeteries as places of reverence and contemplation, and had assisted families in locating graves. In fact, he said, “We have helped a number of families place a marker at a number.”

But without some descendant’s consent, Willard’s dead will remain memorialized by a number, if at all.

State officials also say that at the request of the Willard Cemetery Memorial Project, they are searching for any relatives of a certain individual — they would not say “Lawrence Mocha” — who might grant permission for the public release of that individual’s name. This is highly unlikely, advocates say, given that this individual never married and left Europe a century ago.

But Ms. Spellecy will not give up. She and other volunteers are developing a list of the dead through census rolls and other records, and hope to secure permission from descendants to have those names made public, perhaps even in granite. When asked why she has committed herself to this uphill task, Ms. Spellecy paused to compose herself. With her eyes wet from tears, she said: “Every stage of life is very sacred. Life deserves to be remembered, and revered, and memorialized.”

A few weeks ago, Ms. Spellecy and some others bundled up and went out again to the 29 acres of stillness that is the Willard cemetery. They removed a little brush and cleaned a little dirt from a few of the numbers in the ground. The autumn winds carved whitecaps from the steel-gray lake below, while fallen leaves skittered across a field of anonymous graves, many of them dug by a man buried here too, whose name, Lawrence Mocha, you are not supposed to know.”

SOURCE: “Restoring Lost Names, Recapturing Lost Dignity” by Dan Barry – The New York Times. (A version of this article appears in print on November 28, 2014, on page A1 of the New York edition with the headline: Restoring Lost Names, Recapturing Lost Dignity.)

1. CLICK HERE TO VIEW THE VIDEO They’re Buried Where? by Seth Voorhees
2. Cemetery Information at the NYS Office of Mental Health
3. New York State Hospitals, Custodial Institutions & Cemetery Projects.
4. S2514-2013 – NY Senate Open Legislation – Relates to patients interred at state mental health hospital cemeteries – New York State Senate
5. NEW HIPAA UPDATE March 2013!

“Lost Luggage, Recovered Lives” by Peter Stastny, MD, and Darby Penney, MLS

The Lives They Left Behind Suitcases From A State Hospital Attic offered a ray of hope for people like me, who had discovered that an ancestor was a former patient who died at Willard State Hospital. I read the book in a day, not being able to put it down. I wanted to know more. I wondered what kind of treatment was given to my great-grandmother, and I wonder to this day. The significance of this book is that no others before Darby Penney and Peter Stastny had ever gone through the patient medical records and personal belongings in order to tell the patient’s side of the story. To learn more, please feel free to download, read, and share “Lost Luggage, Recovered Lives” by Peter Stastny, MD, and Darby Penney, MLS.  

Darby Penney is a leader in the human rights movement for people with psychiatric disabilities. Peter Stastny is a psychiatrist and documentary filmmaker. You may contact Ms. Penney to inquire about your ancestor’s suitcase at: community@capital.net. For more information visit The Lives They Left Behind Suitcases From A State Hospital Attic Website. 

The Lives They Left Behind by Darby Penney & Peter Stastny

The Lives They Left Behind by Darby Penney & Peter Stastny

Within the pages of this book is where I first learned about the anonymous graves at Willard State Hospital Cemetery. Further research led me to the discovery that burying former patients of New York State Hospitals and Custodial Institutions, in numbered, anonymous graves, was not the exception but the rule. As I have stated before, I am a Genealogy Geek who was inspired by Ms. Penney and her book, to get a law passed that will require the NYS Office of Mental Health to release the names; dates of birth and death; and the location of these historic graves, to the public so that these people may be honored and remembered with dignity. Even with the new HIPAA ruling that allows the release of medical records after 50 years from the time of the patient’s death, it appears that the OMH will not comply with the new ruling unless forced to do so. One wonders how and where they got the authority to classify the burial ledgers (cemetery records) in the same category as medical records? Why are the deaths of thousands of people being kept a secret?

Hopefully, the NYSOMH will release historic patient burial information and when they do, it will be a wonderful opportunity to educate the public about what mental illness is; to reassure people that they should not be ashamed; that help is available; and that no one needs to struggle alone. But as of today, they are sticking with “the very fact of one’s mental illness, and receiving professional help for such illness, can, if generally revealed, cause a person to be subjected to prejudice and stigma in one’s personal and professional life.” Does this statement really encourage people to seek help?

“The only exception would be if you believe a patient was buried in one of our cemeteries. If so, then with appropriate family linkage documentation, including birth and death certificates, we could provide you with information on the individual’s burial site.”

One of the first lessons that you learn when researching your family history is that people have common names. In other words, you are not the only person in the world who has your name. Lesson two is, anyone can claim to be anyone’s descendant in order to get a historic copy of a birth, marriage, or death certificate. The state does not know your genealogy, nor do they care because they’re making money on the deal. Note that after spending the money on this documentation, writing a letter, mailing it in, and waiting months for a response from the OMH, they state we could, instead of, we will, provide you with the information.

The following “Frequently Asked Questions” page is posted at NYS Office of Mental Health Last Modified: 11/15/2012.

“Q. Can I get a copy of a birth or death certificate for a family member that was a resident of one of the Office of Mental Health’s facilities?

A. Birth records, death records, and marriage records are considered Vital Records in New York State and generally can be accessed by the public. If you are interested in exploring this option, you can obtain more information on how to obtain these records on the New York State Department of Health’s vital Records website at www.nyhealth.gov

Q. I have been doing genealogy research and have discovered that one of my relatives was a resident at one of the Office of Mental Health facilities. I would like to find out any personal or medical information about them. Can I obtain a copy of these records?

A. The Office of Mental Health is dedicated to the maintenance of privacy and confidentiality of patient information. We feel this is especially true with regard to mental health treatment records. It has long been recognized that the very fact of one’s mental illness, and receiving professional help for such illness, can, if generally revealed, cause a person to be subjected to prejudice and stigma in one’s personal and professional life. We also recognize that effective and lasting psychiatric therapy can take place only in an environment of privacy and trust in which the patient knows that his/her statements will be held in confidence.

New federal regulations that govern the privacy of individually identifying health information, have underscored this requirement. While it has always been our position that a person’s right to confidentiality of clinical information does not change upon his or her death, federal regulations have given us some additional specific guidance on access to records of deceased patients. Therefore, we have recently modified our policy and procedures and require the following before we can provide any information from a deceased patient’s clinical record:

A. Birth records, death records, and marriage records are considered Vital Records in New York State and generally can be accessed by the public. If you are interested in exploring this option, you can obtain more information on how to obtain these records on the New York State Department of Health’s vital Records website at www.nyhealth.gov

B. If you are a family member of the deceased patient and the patient allowed our facility to share information with you while he or she was living, and it is reasonable to assume that the patient did not intend to revoke his or her permission to continue to communicate with you prior to his or her death, we may provide you with basic information about the patient’s condition and circumstances of his or her death, if appropriate.

C. If you are a family member of the deceased patient and the information from the patient’s record is relevant to your own health care, we can release the information to your physician, provided the physician submits a written request to us on your behalf.

D. If you are the executor of the deceased patient’s estate, or if you otherwise have legal authority to act on behalf of the patient or his/her estate, (e.g. you have letters testamentary issued by a court), we can release information to you upon your written request which documents and attests to your legal authority to act on behalf of the deceased patient. We can also release information to you if you obtain and provide us with the written consent from the executor or legal representative of the deceased patient.

E. In all of these cases, we are required to review the record prior to its release to ensure it does not infringe upon the privacy rights of any other individual who may be named in the record.

The only exception would be if you believe a patient was buried in one of our cemeteries. If so, then with appropriate family linkage documentation, including birth and death certificates, we could provide you with information on the individual’s burial site. Requests should be sent to John Allen, Consumer Affairs, NYS Office of Mental Health, 44 Holland Avenue, Albany, NY 12229.”

My Story by L.S. Stuhler – July 23, 2012

I include here my story about trying to obtain my great-grandmother’s medical records and photographs from the Willard State Hospital, along with asking for the release to the public of former patient names; dates of birth and death; and location of graves, in order that these forgotten people, of which there are thousands, may be honored and remembered with dignity. It all began on February 24, 2001, when I found my great-grandmother’s obituary: According to the “PennYan Democrat” newspaper dated August 17, 1928: “PUTNAM, At the State Hospital in Willard, Monday, August 13, 1928, Mrs. Margaret Putnam, aged 76 years. She is survived by one son, Jarvis Putnam, of PennYan. The funeral was held from the Thayer Funeral Home Wednesday afternoon, Rev. W.A. Hendricks officiating. Burial in Lake View cemetery.” 

It took a long time for me to figure out where I should be looking in order to obtain information about my great-grandmother. In 2001, I was unable to find anything on the internet pertaining to this issue which is the main reason I created this blog (July 10, 2011) and wrote the book The Inmates of Willard 1870 to 1900, A Genealogy Resource (December 17, 2011). In 2007, I came across an article about a new book written by Darby Penney, MLS, and Peter Stastney, M.D., entitled The Lives They Left Behind Suitcases From A State Hospital Attic. Wondering if my great-grandmother’s suitcase was among the 400 discovered in an attic of the Willard State Hospital, I contacted Ms. Penney. Unfortunately, it was not among the surviving suitcases. Ms. Penney’s book revealed the practice of burying “mental patients” in anonymous graves. I must admit that I had never heard of this practice before and thought it was extremely cruel. What amazed me most was that no one (that I knew of) had ever tried to rectify this sad, dehumanizing situation. What needs to be acknowledged is none of these well documented facts about the thousands of people buried in anonymous graves at Willard, and all former NYS Hospitals and Custodial Institutions, would ever have come to light without the tireless efforts of Ms. Penney, Dr. Stastney, and Mr. Craig Williams, Curator of History at the New York State Museum at Albany. I also need to thank Laurel Lemke, from the Grave Concerns Association, for sending me the law that she helped to pass in the State of Washington in 2004. Without her help in emailing me the bill, I never would have gotten the attention of Kate Munzinger, Senator Joseph Robach’s Chief of Staff. I met with Ms. Munzinger on August 22, 2011. Senator Robach introduced the bill to the New York State Senate in March 2012.

The following response letters, beginning in early 2008, are from everyone that I have contacted over the years. I have not included emails. Unless a modification is made to the present HIPAA Law and New York State Mental Hygiene Laws (See New HIPAA Update and S2514-2013), I and so many others like me, who want to know why our ancestor was committed to a state hospital, will never know the answer. My first response letter is dated April 16, 2008, in response to the original paperwork that my physician and I had sent in early September of 2007 (seven month wait). On August 13, 2008, I was denied a copy of my great-grandmother’s medical records and photographs from the Greater Binghamton Health Center. This three sentence response letter is the explanation given to me after waiting four months, taking the time and effort to speak with them on the phone, obtaining and filling out their required paper work with the help of my physician, and sending in the forms.

1- GBHC 04.16.2008

1- GBHC 04.16.2008

2 - GBHC 08.13.2008

2 – GBHC 08.13.2008

Besides writing a letter to former New York State Governor Patterson and present Governor Cuomo, both U.S. Senators from New York: Schumer and Gillibrand, State Senators, Congressmen, The Department of Correctional Services, The Commission on Quality of Care and Advocacy for Persons with Disabilities, The Office of Mental Health Counsel, and the State of New York Department of State Committee on Open Government (FOIL), I also wrote a letter to the doctor in charge of the Office of Mental Health Institutional Review Board asking permission to view, record, and publish the burial ledgers – names; dates of birth and death; and location of graves) located and stored at the NYS Archives. After waiting seven months for a response, I was told in an official letter, that my proposed study was not approved due to concerns about violating patient confidentiality. I was also told that I could take the New York State Office of Mental Health to court in order to get the names of former patients and the medical records of my great-grandmother, but seriously, who has the time and the money to go through all of that? Privacy ends at death but apparently patient confidentiality lasts forever.

I went through proper channels to obtain Maggie’s medical records and photographs. I filled out the paperwork, had my doctor and a witness sign the paperwork, and my doctor sent it in. I waited four months for a response and finally my doctor received a letter. I asked for the medical records and any photographs of my great-grandmother. When I received the response from the Greater Binghamton Health Center in August 2008, it stated the staff was unable to locate the requested file. Had I received my great-grandmother’s medical records, I would have been satisfied. Besides being genuinely interested in learning more about Willard, I created this blog for family genealogists like me, frustrated trying to find out if and when their ancestor was a Willard inmate, receiving the runaround obtaining their ancestor’s medical records and photos, and determining whether their ancestor is buried in the Willard Cemetery. The final answer came from the Commissioner of the NYS Office of Mental Health in responding to my inquiry by e-mail on October 25, 2010, which basically stated that publicly identifying former patients may be offensive to some families because of the stigma and repercussions that may follow, for example, in some small towns. I must say that I took offense to his statement because I live in a small town. What exactly was he trying to imply? It appears that we have not moved any further in our tolerance or understanding of people with problems and of people who live in small towns. I must say that my favorite letter is from the Commissioner, dated June 3, 2011, in which he reminds me “that the penalties for violations are very stiff – civil penalties under federal law can carry up to $10,000 per violation.”

Willard’s inmates who in life were incarcerated, forgotten, warehoused, and controlled by the state are once again controlled and intentionally forgotten in death by New York State, the New York State Office of Mental Health, or both. Perhaps they are interpreting the scope of the HIPAA Law incorrectly. The only logical assumption is the protection provided by these laws is not for long dead souls since U.S. Federal Censuses already reveal many of their names; it is for the protection of the descendants.

The responses from the Senators are interesting because they state that there is nothing they can do about the situation at Willard. They mention nothing about modifying the HIPAA Law which was one of the questions that I asked them to respond to. My understanding is that they are the only ones who can change or modify this federal law in order that descendants or anyone for that matter, would be allowed to have a copy of these historical medical records. When you’re dead, you’re dead. Who cares if someone looks at 80 year old medical records? The following letters were received by me from Senator Charles E. Schumer, dated January 9, 2012; and from Senator Kirsten E. Gillibrand, dated February 21, 2012. Perhaps this whole ridiculous situation of trying to uncover the identities and opening medical records of people who have been dead for one hundred years lies with the unique interpretation of the federal HIPAA Law by each individual state office of mental health.

Response Letter Senator Schumer 1.9.2012

Response Letter Senator Schumer 1.9.2012

Response Letter Senator Gillibrand 2.21.2012

Response Letter Senator Gillibrand 2.21.2012

14 - OMH 06.03.2011

14 – OMH 06.03.2011

13 - GBHC 09.07.2010

13 – GBHC 09.07.2010

11 - FOIL 06.04.2010-1

11 – FOIL 06.04.2010-1

12 - FOIL 06.04.2010-2

12 – FOIL 06.04.2010-2

10 - Correctional Services 01.15.2010

10 – Correctional Services 01.15.2010

7 - FOIL 12.10.2009-1

7 – FOIL 12.10.2009-1

8 - FOIL 12.10.2009-2

8 – FOIL 12.10.2009-2

9 - FOIL 12.10.2009-3

9 – FOIL 12.10.2009-3

5 - FOIL 09.25.2009-1

5 – FOIL 09.25.2009-1

6 - FOIL 09.25.2009-2

6 – FOIL 09.25.2009-2

4 - OMH Counsel 09.08.2009

4 – OMH Counsel 09.08.2009

3 - Quality Care Advocacy 09.01.2009

3 – Quality Care Advocacy 09.01.2009

Willard Suitcases – Darby Penney – Photos by Jon Crispin

Jon Crispin Suitcase 2 - http://joncrispin.wordpress.com/

Jon Crispin Suitcase 2 – http://joncrispin.wordpress.com/

Like so many others who have discovered that an ancestor was an inmate at Willard, I read the book The Lives They Left Behind Suitcases From A State Hospital Attic by Darby Penney and Peter Stastny in order to learn what life was like living inside the asylum. I contacted Ms. Penney to ask if my great-grandmother’s suitcase was found in the attic. It wasn’t. The authors were given permission to research the medical records of twelve patients and were allowed to use patient photographs in the book using factitious names. Since I am a descendent of a patient, I assumed that I would be able to receive a copy of my great-grandmother’s medical records and photographs. I was wrong. I learned that I have no right to this information unless my primary care physician needs the health records to diagnose or treat a condition. This explanation was given to me in a letter by the Commissioner of the New York State Office of Mental Health. It makes no sense to me considering that my great-grandmother has been dead for eighty-four years. I wonder if a diagnosis that was made eighty-four years ago would even be relevant today. My point is this: I want to know what happened to my great-grandmother. I want to learn her diagnosis and read about her experiences in a state hospital.

Jon Crispin Suitcase 6 - http://joncrispin.wordpress.com/

Jon Crispin Suitcase 6 – http://joncrispin.wordpress.com/

Ms. Penney is a national leader in the human rights movement for people with psychiatric disabilities. In an email I asked her, “When did the state hospitals go bad?” Her reply was, “It never went bad. Western society’s methods of dealing with people in mental and emotional distress have always been based on punishment and segregation. Anyone who is locked up against their will and kept in isolation is being treated poorly, to my mind.” Ms. Penney and the NYS Archives have the list of the former suitcase owners. Even though it is not a medical record it cannot be released to the public because it would identify former patients. You may contact Ms. Penney to inquire about your ancestor’s suitcase at: community@capital.net. For more information visit The Lives They Left Behind Suitcases From A State Hospital Attic Website. 

Jon Crispin Suitcase 10 - http://joncrispin.wordpress.com/

Jon Crispin Suitcase 10 – http://joncrispin.wordpress.com/

Willard Asylum Cemetery (Veterans Names) Military Section, Seneca County, NY:
http://www.newyorkroots.org/ontario/cems/SenecaCo/Willardceme.htm

Jon Crispin Suitcase 13 - http://joncrispin.wordpress.com/

Jon Crispin Suitcase 13 – http://joncrispin.wordpress.com/

Jon Crispin’s Notebook – Willard Suitcases:
http://joncrispin.wordpress.com/2011/03/18/willard-asylum-suitcase/

http://joncrispin.wordpress.com/2011/07/24/willard-asylum-suitcase-2/
http://joncrispin.wordpress.com/2011/10/04/willard-suitcase-3/
http://joncrispin.wordpress.com/2011/10/07/willard-suitcase-4/
http://joncrispin.wordpress.com/2011/10/16/willard-suitcase-5/
http://joncrispin.wordpress.com/2011/10/23/willard-suitcase-6/
http://joncrispin.wordpress.com/2011/10/31/willard-suitcase-7/
http://joncrispin.wordpress.com/2011/11/11/willard-suitcase-8/
http://joncrispin.wordpress.com/2011/12/05/willard-suitcase-9/
http://joncrispin.wordpress.com/2011/12/27/willard-suitcase-10/
http://joncrispin.wordpress.com/2012/01/13/willard-suitcase-11/
http://joncrispin.wordpress.com/2012/02/06/willard-suitcase-12/
http://joncrispin.wordpress.com/2012/03/03/willard-suitcase-13/

What’s In A Name?

I am not a certified genealogist, but I can share with you a basic understanding of what’s in a name from years of experience in searching for my ancestors. Genealogy is the study of family ancestries and history. If all you needed was your ancestor’s name in order to connect them to your family tree; genealogy would be easy. To understand how it works, I will use my grandfather, who was NOT a patient at a state hospital, as an example. CARL SCHULZ was born on January 29, 1878 in Ötisheim, Württemberg, Germany, and died on January 16, 1970, in Rochester, Monroe County, New York. If you enter his name on Google, over 22 million hits will pop up. I entered the name “Carl Schulz” on an ancestry website and narrowed the search to Rochester, New York,  District 10; over 167,000 hits appeared. To make matters worse, the surname Schulz, is also spelled: Schultz, Schulze, Schultze, and Shultz, to name a few. While searching for my grandfather on the U.S. Federal Census, his given or first name has been listed as: Carl, Karl, Charles and Kurt. Keep in mind that the enumerators were human and made mistakes in the spelling of names, recorded ages incorrectly, and some had illegible cursive handwriting. If you don’t enjoy solving a mystery, then you won’t enjoy searching for your ancestors.

Carl Gottlieb Schulz 1940s

Carl Gottlieb Schulz 1940s

It all begins with a name; but a name means nothing if you don’t have the basic background information such as: date of birth; city, county, state and country of birth; date and place of death; names of parents and siblings, etc. Twelve years ago, when I began investigating my grandfather, all I knew was his name and that he was born in Württemberg, Germany. Our ancestors didn’t have much of an imagination when naming their children. I never realized how common my grandfather’s name was until I began my search. It took me years to uncover the names of his parents, siblings, and the town in which he was born.

According to The Lives They Left Behind by Darby Penney and Peter Stastny: 8,000 people entered Willard between 1869 and 1900, 1,500 were released as recovered; 54,000 people were admitted during the 126 years of operation. (1) There is no way of knowing who remained, who was released, and who was buried on asylum property without the burial ledger, and even then, names mean nothing to the general public unless they are attached to a particular individual. An inscribed headstone would not identify a specific individual unless it stated what city, county, state, country of origin, parents, etc. And even then, you would have to claim that person as your ancestor and notify the media that he or she was diagnosed with a mental illness in order to be “stigmatized.” This is why the NYS Office of Mental Health’s classification of New York State Hospital burial ledgers as a medical records is ridiculous. Privacy ends at death but Confidentiality Of Medical Records apparently lasts forever.

If you believe that your ancestor may have been an patient at the Willard State Hospital, then you have come to the right place. The U.S. Federal Census is a great place to start your search, but you need so much more than a name in order to confirm that the individual listed on the census is indeed your ancestor. Good Luck!

(1. Penney, Darby & Stastny, Peter, The Lives They Left Behind, Suitcases From A State Hospital Attic, Photographs by Lisa Rinzler, Bellevue Literary Press, New York, 2008, Page 36)