A Day at Willard Cemetery 5.18.2013

On Saturday, May 18, 2013, I visited the Willard Cemetery for a second time. This was the day of the annual Willard Tour that benefits a day care center on the old Willard property. Hundreds of people attended the tour and a good crowd gathered at the cemetery. Quite a bit has changed since my first visit on May 14, 2011, when the grass was up to my knees and no one was there but me, my husband, and two of our friends. It was a very sad place. The Willard Cemetery Memorial Project was formed by Colleen Kelly Spellecy in 2011. She has done a fabulous job organizing the group, having a sign installed at the entrance, raising awareness about the project, getting the cemetery lawn mowed, and collecting donations. I was happy to see so many concerned people at the cemetery.

Now there is hope, not only for the Willard Cemetery but for all state hospital and custodial institution cemeteries across the State of New York. A bill was introduced to the NYS Legislature in March 2012 and was re-introduced on January 18, 2013 as S2514-2013. If this bill becomes law, then the names of our forgotten ancestors will be released. They will finally be honored and remembered with dignity. This bill specifically addresses the “burial records” issue. Although HIPAA has stepped out of the way to allow individual states to release “medical records” 50 years after a patient has died, I am not sure if this issue was specifically addressed in this bill. Let’s take one step at a time and be grateful for what is in the works right now! Anyone who has ever dealt with the New York State Office of Mental Health in trying to obtain any type of information on an ancestor, whether it concerns asking where they are buried or obtaining a medical record, knows how arrogant and non-responsive they are unless you have a Ph.D. after your name. This needs to change.

Another fact that people don’t realize is that the great majority, if not all, of these historical cemeteries are “inactive” which means no one else will be buried there. I hope that ALL names are released including more recent burials. For example, when Willard closed in 1995, a gentleman was transferred to another facility. When he died in 2000, he asked to be buried in the Willard Cemetery because this was his home. Who will be here in 2050 to add this man’s name to a headstone or memorial? Who allowed these cemeteries to become forgotten?

Who was sent to Willard? Anyone who was not considered “normal” including the elderly with Dementia and Alzheimer’s Disease. Remember, there really were no nursing homes until the 1950s. Others were Hearing Impaired, had Developmental Disabilities, were Trauma Victims including Victims of Domestic Violence and Rape (back then they called it “Seducer’s Victim”), had PTSD (Soldier’s Heart & Shell Shock), Menopausal Women, Depression, Anxiety Disorders, Brain Injuries, Stroke Victims, Epilepsy, Neurological Disorders, Psychiatric Disorders, and some were locked up because of their sexual orientation, personal beliefs, and religious beliefs. These people, their families, and descendants, have nothing to be ashamed of. That would be like being ashamed of heart disease or diabetes. Putting names on a memorial, headstone, or list, should not be offensive to anyone.

Also attending the tour on this day was Seth Voorhees, Senior Reporter for the Time Warner Cable news channel YNN that serves Rochester and the Finger Lakes. Mr. Voorhees was genuinely interested in my mission to get this law passed in New York and offered me the opportunity of an interview. Although I am not a public speaker, I jumped at the chance to get the word out to a larger audience. I can’t thank him enough for all the time he spent putting this video report together. This piece aired on YNN, Saturday, May 25, 2013. I also need to thank Senator Joseph E. Robach for drafting and introducing the bill to the New York State Legislature. I hope this piece will raise awareness about the anonymous graves issue as this was never about patient confidentiality, it’s about respect.

CLICK HERE TO VIEW THE VIDEO They’re Buried Where? by Seth Voorhees.
Not Forgotten by Colleen Spellecy.

The list of these former New York State Hospitals includes but is not limited to: BinghamtonBuffaloCentral IslipDannemoraEdgewoodGowandaHudson RiverKings ParkLong IslandManhattanMatteawanMiddletownMohansicPilgrimRochesterSt. LawrenceSyracuseUtica, and Willard.

The Feeble-Minded and Epileptic Custodial Institutions of New York includes but is not limited to: Craig Colony for EpilepticsLetchworth Village for Epileptics & Developmentally DisabledNewark State School for Developmentally Disabled WomenRome State School for Developmentally Disabled Adults & Children, and Syracuse State School for Developmentally Disabled Children. There may be more.

Seth Voorhees & Lin Stuhler 5.18.2013

Seth Voorhees & Lin Stuhler 5.18.2013

Roger Luther from nysAsylum.com & Lin Stuhler 5.18.2013

Roger Luther from nysAsylum.com & Lin Stuhler 5.18.2013

Colleen Spellecy, Craig Williams, Lin Stuhler 5.18.2013

Colleen Spellecy, Craig Williams, Lin Stuhler 5.18.2013

Willard Cemetery Sign 5.18.2013

Willard Cemetery Sign 5.18.2013

Willard Cemetery Memorial Project 5.18.2013

Willard Cemetery Memorial Project 5.18.2013

Willard Cemetery 5.18.2013

Willard Cemetery 5.18.2013

Old Metal Marker 5.18.2013

Old Metal Marker 5.18.2013

Willard Cemetery 5.18.2013

Willard Cemetery 5.18.2013

This photo is of the Civil War Veterans Section of the cemetery. They were provided with clearly inscribed headstones from the government. Colleen discovered that a few of them were not “inmates” of Willard but were residents of the town. I wonder how many other United States Veterans who served their country with honor but ended up at Willard are buried here among the 5,776 in anonymous graves?

Notes & Insights from Craig Williams – Willard Cemetery

Here are some wonderful notes, used with permission, from Craig Williams, Curator of History at the New York State Museum at Albany, concerning the burial ledgers of the Willard State Hospital Cemetery, and Ovid Union Cemetery. Mr. Williams is an expert on the history of the Willard Asylum and has always been more than willing to share his vast knowledge on the subject. He has provided me with maps, old photographs, answered my numerous questions, and filled in the gaps with insight that only comes from years of experience. I would like to take this opportunity to recognize and thank Mr. Williams for all the help he has given to me!

NYS Museum Albany album b 154-2 Old Cemetery

NYS Museum Albany album b 154-2 Old Cemetery

“As you know, those records are now among the sealed materials…. sad, since back when they were at Willard, the staff were only to willing to help locate “lost” relatives by using those records… Often overlooked is the section of the Union Cemetery dedicated to Willard. I have a memory of being told that there were over two hundred burials there. I’ve always meant to check with the Cemetery to learn if they have a log of burials. In the inside cover of Willard’s first burial ledger, there is the handwritten note stating – “January 17th, 1876 – Trustees of Union Cemetery at Ovid, N.Y. made deed of lot 161 to Willard Asylum for the Insane. Deed deposited with J. B. Thomas, Treasurer, Consideration, $25. // Ganett W. Freligh, Pred’d’t // John C. Meddick, Treas.” The Willard burials that I know of at Union are along the east center edge, by the main road. The few formally marked (you can see many more depressions) date from the 1980s plus or minus. Could that location be Lot 161? Is there another section at Union where there are older Willard burials? There must have been a period in the 1980s when people were being buried at both cemeteries. I wonder how that was decided?”

“One of the things I noted in the burial ledgers were the fair number of people later removed by family or for other reasons (move to a Catholic cemetery, for instance), maybe a couple dozen over the hundred plus years? The Stock memo says 5,757 burials and there were several burials after that date. The last “regular” burial was on November 18, 1991 (not counting the 2000 burial). As you know, at the very end, there were two burials of lab specimens (including one fetus). From the four manuscript ledgers, I get 5,249 burials (not counting the two above) in the main (“Protestant”) section. The Soldiers Cemetery account shows 106 burials. A few of those (half dozen) may have been counted among the 5,249, being reinterred when that section was set up in April 1885. The last burial there seems to have been done on December 10, 1926. The Jewish cemetery (old and new), first used in January 1932, appears to have 202 burials. The old portion is where the monument now stands. The new is in the far northeast section of the cemetery. Catholic (old and new), first used in January 1959, seems to have 327 (including the 2000 burial of M). Added together, I get 5,884. I did not deduct the burials that were later removed…”

“That first burial ledger has a number of interesting clues. It lists the first burial as being done on 5 January 1870, not long after the Asylum’s opening. This cemetery was (I think) immediately north of the Branch (Grandview)… maybe in what is now parking lot or closer (under?) the current building?… By December 1873 there was already some confusion over the number of burials (85 by that time). In March 1875 a 71-year-old woman was buried, with a place of birth being listed as “Africa.” I note that since in some Upstate cemeteries separate sections were made for African-Americans…never the case at Willard.

The first burial at the new cemetery (on “Risings Hill”) was on July 3, 1875. She is listed as burial 123. On October 16, 1875, the ledger notes that “This day, John Hanlon (Sexton), finished transferring bodies from the old “Cemetery” to the new, on “Risings Hill.” He reports he had removed 119 bodies, and that bodies corresponding to Nos. 7, 27, 64 and 70 had been disinterred. // Alexander Nellis, Jr., Assistant Physician.” That comment on “disinterred” doesn’t actually match the records. They were all placed in “Form 1” (Row 1?)…The July 3rd burial is the first one in Form 2 (Row 2?). Those rows were just north of Mocha’s shed. An implication of the removal to the new cemetery is that the old one had grave markers. Apparently, some things were overlooked. In the third cemetery ledger, in November 1898, there is the note of “Bones taken from new Branch” were put at the west end of Form 2. In 1897 and 1898 there was substantial regrading around the Branch. That work probably exposed the overlooked burial(s?).

The annual report for 1874 discusses the reasoning for the new cemetery. “Experience has demonstrated, that the present location of the cemetery is a bad one, though the most appropriate one on the asylum farm. It is inconvenient because of its distance (remember, the Asylum was still just Chapin Hall), from the nature of the soil, and it also interferes with the enlargement of the upper reservoir, which is indispensably necessary. We therefore desire to change the location. Twenty-five acres of land can be purchased a short distance north…”

“Obviously, the cemetery in the 19th-century only took up a small portion of the hill, the rest was probably used for farm purposes. The first engravings of that north edge of the Asylum land show what might be a bridge going across the ravine, the original entrance not being the current one. The Stock memo states “the current entrance was cut in and established because new more modern day vehicles could not cross the small culvert bridge. The story goes that the village mayor wanted the fire truck to be able to go in a parade down Main Street of Willard and enter the cemetery for ceremonies at the old Civil War cemetery site but could not because the bridge was too narrow. The new entrance was established. While doing this, some landscaping was required and the sharp embankment needed to be made more gradual. In that process, some heavy equipment was used and they proceeded to taper the hillside but had to stop when they began to strike some old grave sites.” The old entrance shows on the facility maps.

Just a couple other items from my notes from the cemetery ledgers. A note was made to the entry for a July 5, 1886, that a glass bottle with a person’s name was placed in the burial alongside the one whose name was so enclosed…. confusing, but implying that such identification practices happened early on. There are at least three references to infants being buried. One was from September 1896 and mentions a “Form A” location at the west end of Form (Row?) 1. Alongside a November 1880 burial entry is the note that the daughter was present at the burial of her mother. In the last ledger, especially from the 1940s on, there are frequent references to amputated limbs being buried in unrelated graves.”

1917 Willard Maps

Many months ago, Mr. Craig Williams, Curator of History at the New York State Museum at Albany, sent me copies of two Willard State Hospital Maps from 1917: Willard West and East. I finally had a chance to work on them. As you can see, the complex was quite large, about 1,000 acres. The Branch (Grand View – Old State Agricultural College) is on the Willard East Map located at the bottom of the page. Click on the maps to enlarge. Willard Map Index

Willard Map 1917

Willard Map West 1917

I cropped the map so that you would be able to see the layout of each building. Chapin House is the Main Building. As far as I can tell, Willard was NOT a Kirkbride Building. The Maples was one of the cottages (detached buildings or blocks), that was built differently than the other three cottages.

97 Chapin House (Main Building)

97 Chapin House (Main Building)

63 The Maples (DB1)

63 The Maples (DB1)

105 The Pines (DB2)

105 The Pines (DB2)

44 Sunnycroft (DB3)

44 Sunnycroft (DB3)

107 Edgemere (DB4)

107 Edgemere (DB4)

Willard Map East 1917

Willard Map East 1917

Willard Map East - Grand View (The Branch)

15 Grand View (The Branch)

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