The Ramblings of a Mad Woman

Posted on April 1, 2014 by lsstuhler

When I first started this blog, I did it in order to help other people find their forgotten ancestors. I persuaded my State Senator, Joe Robach, to draft legislation in 2011 that would allow for the release of patient names, dates of death, and location of graves to the public, which he introduced to the New York State Legislature. It first appeared on March 23, 2012 as S6805-2011. On January 8, 2014, it was reintroduced as S2514-2013.

There are at least 17 former New York State Hospitals / Insane Asylums that have been renamed, closed, demolished, or turned into New York State Prisons. The cemeteries located on former NYS Hospitals are filled with anonymous, unmarked graves. Willard alone has close to 6,000. Some of these former State Hospitals, such as Buffalo and Rochester, used city or county cemeteries and they are filled with the nameless as well. How many? I do not know. How long will it take to give these people the dignity in death that they deserve? When will they be allowed to rest in peace? When will they be remembered as fellow human beings who were on the same earthly path as everyone else before their lives and their freedom were taken from them? What else do I have to do to get the attention of the Governor and Assembly members to release the names of former patients who lived and died in these warehouses? The Department of Health and Human Services declared last March that patient medical records may be released to the public after 50 years of a patient’s death. Now we have to ask for another bill to be drafted and introduced to the Senate again in order to allow New York State to release medical records. After seven years on this journey, I am tired and just don’t have the desire to fight anymore.

Before I began my research on Willard and the other New York State Hospitals and Custodial Institutions, I considered myself to be normal, whatever that means. All kinds of interesting things happened to me and I wondered, why? I lost my job, went through menopause, osteoarthritis, and a neurological problem that I have always had, had become progressively worse. Depression is one of those “Mental Illnesses” that I never thought of as a “Mental Illness.” I thought that depression was a normal human emotion that one experiences when subjected to trauma or pain in any of its various forms. I would not have believed that I was “Mentally Ill,” until my neurologist, who I no longer go to, informed me that I have delusional thinking and I’m paranoid because I believe that I can no longer protect myself if I needed too like being able to run from a dangerous situation. This came from a 30 something year old man in perfect health who stands over 6 feet tall. I’m 57 years old, stand 5 feet 2 inches tall, and have Familial or Essential Tremors in my head and my right hand. My thinking is based on facts, not delusions. I thought that doctors were above this archaic type of thinking but I was wrong. Many men, even doctors, still don’t get it.

The reason why I am relating my story is that I am sure that had I lived one hundred years ago with these same progressive diseases, I would have been locked up! I would not have believed that a doctor would ever say such things to me and I can only imagine what must have happened to my great-grandmother, Maggie, who died at Willard State Hospital 86 years ago. If you wonder why people do not seek help, my little story is why they don’t. Am I labeled? I don’t know. It is frightening when you realize that you’re not feeling like your normal self, and seek help, and this is what a doctor says to you. Maybe we all need to be a little more aware of who is crazy and who is normal and realize that the people buried in those anonymous, unmarked graves were human beings like me, and you, just trying to make their way in life. Please write or call your New York State Senator so that this bill will become a law. Thank you!

THEY’RE BURIED WHERE? by Seth Voorhees

UPDATE Craig Colony Cemetery

Posted on June 27, 2013 by lsstuhler

The volunteers of People Inc. and the Museum of disABILITY History will be cleaning up the Craig Colony for Epileptics Cemetery and the white marble engraved headstones this summer as part of the nationwide movement Operation Dignity to restore local institutional cemeteries. The fact that there are headstones and that they are engraved with the patients’ name is rare. The names of the 2,274 people buried in this cemetery can be found at Find A Grave. The following photographs were taken and sent to me by David Mack-Hardiman, Director of Training, People Inc. To volunteer, please contact David Mack-Hardiman at: dmack@people-inc.org.

We still need this bill to pass! Please call or write a letter to your state senator and tell them that you support this bill! S2514-2013 – NY Senate Open Legislation – Relates to patients interred at state mental health hospital cemeteries – New York State Senate.

Craig Colony 1 – 6.2013

Craig Colony 2 – 6.2013

Craig Colony 3 – 6.2013

Craig Colony 4 – 6.2013

Craig Colony 5 – 6.2013

Craig Colony 6 – 6.2013

Craig Colony 7 – 6.2013

Craig Colony 8 – 6.2013

A Day at Willard Cemetery 5.18.2013

Posted on May 26, 2013 by lsstuhler

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: Binghamton, Buffalo, Central Islip, Dannemora, Edgewood, Gowanda, Hudson River, Kings Park, Long Island, Manhattan, Matteawan, Middletown, Mohansic, Pilgrim, Rochester, St. Lawrence, Syracuse, Utica, and Willard.

The Feeble-Minded and Epileptic Custodial Institutions of New York includes but is not limited to: Craig Colony for Epileptics, Letchworth Village for Epileptics & Developmentally Disabled, Newark State School for Developmentally Disabled Women, Rome 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

Roger Luther from nysAsylum.com & Lin Stuhler 5.18.2013

Colleen Spellecy, Craig Williams, Lin Stuhler 5.18.2013

Willard Cemetery Sign 5.18.2013

Willard Cemetery Memorial Project 5.18.2013

Willard Cemetery 5.18.2013

Old Metal Marker 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?

S2514-2013 – NY Senate Open Legislation – Relates to patients interred at state mental health hospital cemeteries – New York State Senate

Posted on March 1, 2013 by lsstuhler

S2514-2013 – NY Senate Open Legislation – Relates to patients interred at state mental health hospital cemeteries – New York State Senate.

NEW HIPAA UPDATE March 2013!

Well, the bill has a new number but it’s not dead! Yay! Special thanks to Senator Joseph Robach and Tim Ragazzo!

On March 1, 2013, Tim Ragazzo, Director of Operations & Legislation from Senator Joe Robach‘s office, called me to let me know that the bill was re-introduced (with a new number), to the NYS Senate and has been referred to the finance committee. This is great news because it means the bill is not dead! Now it has to pass in the Assembly. Hopefully, the bill will become law before it expires at the end of 2014.
-L.S. Stuhler at lsstuhler@gmail.com

Willard Cemetery Disk by Roger Luther at nysAsylum.com

NAMES INSTEAD OF NUMBERS!

Willard Cemetery 2 by Roger Luther at nysAsylum.com

For more information about these long-closed New York State Hospitals, check out the “Interesting Articles & Documents” page.

LIST OF STATE HOSPITALS

By 1901, there were thirteen state hospitals for the insane in the State of New York. All these hospitals buried their dead in anonymous, unmarked graves. Some had their own cemetery like Willard State Hospital; others used city and county cemeteries like Rochester State Hospital. Most of these state hospital cemeteries are unmarked, unkempt, and forgotten. None of the thousands of former psychiatric patients’ names have been released to the public. Considering that in 1870, the first patient was buried in the Willard Cemetery, which in the year 2012 covers a span of five or six generations, these people have waited long enough to be remembered. When you release the names, you remove the stigma. The following is a list of most of these long-closed state hospitals; there are more.

1. Utica State Hospital – Counties of Fulton, Hamilton, Herkimer, Montgomery, Oneida, Saratoga, Schenectady and Warren.

2. Hudson River State Hospital – Counties of Albany, Columbia, Dutchess, Greene, Putnam, Richmond, Rensselaer, Washington and Westchester.

3. Middletown State Hospital – Counties of Orange, Rockland, Sullivan and Ulster.

4. Buffalo State Hospital – Counties of Erie and Niagara.

5. Willard State Hospital – Counties of Allegany, Cayuga, Genesee, Ontario, Orleans, Schuyler, Seneca, Steuben, Tompkins, Wayne and Yates.

6. Binghamton State Hospital – Counties of Broome, Chemung, Chenango, Cortland, Delaware, Madison, Otsego, Schoharie and Tioga.

7. St. Lawrence State Hospital – Counties of Clinton, Essex, Franklin, Jefferson, Lewis, Onondaga,Oswego and St. Lawrence.

8. Rochester State Hospital – Counties of Monroe and Livingston.

9, 10. Long Island State Hospital – (Kings Park and Flatbush, Brooklyn) – Counties of Kings, Queens, Nassau and Suffolk.

11, 12. Manhattan State Hospital – (Manhattan and Central Islip) – Counties of New York and Richmond.

13. Gowanda State Homoeopathic Hospital (Collin’s Farm) – Counties of Cattaraugus, Chautauqua and Wyoming.

Additional State Hospitals:

14. Pilgrim State Hospital – Brentwood, Suffolk County, New York

15. Mohansic State Hospital – Yorktown, Westchester County, New York

State Hospitals for the Criminally Insane:

16, 17. Mattaewan and Dannemora State Hospitals

S6805-2011 – S2514-2013 – NY Senate Open Legislation – Relates to patients interred at state mental health hospital cemeteries – New York State Senate

Posted on March 27, 2012 by lsstuhler

NEW! UPDATED BILL: S2514-2013 – NY Senate Open Legislation – Relates to patients interred at state mental health hospital cemeteries – New York State Senate.

S6805-2011 – NY Senate Open Legislation – Relates to patients interred at state mental health hospital cemeteries – New York State Senate.

A10636-2011 – NY Assembly Open Legislation – Relates to patients interred at state mental health hospital cemeteries – New York State Assembly.

Imagine not being remembered in death because in life you were diagnosed with diabetes, heart disease or cancer. Most people would find this kind of treatment cruel and inhumane but it exists to this day for people who were diagnosed with a mental illness or developmental disability during the nineteenth and early twentieth centuries. This bill is important and necessary in order to restore the dignity and personhood of the thousands of people who were incarcerated and died at former New York State Insane Asylums and Custodial Institutions. When the bodies of the inmates were not claimed by family members, they were buried in anonymous, unmarked graves. They deserve to have their names remembered and available to the public in a searchable database.

The list of these former New York State Hospitals includes but is not limited to: Binghamton, Buffalo, Central Islip, Creedmoor, Dannemora, Edgewood, Gowanda, Hudson River, Kings Park, Long Island, Manhattan, Matteawan, Middletown, Mohansic, Pilgrim, Rochester, St. Lawrence, Syracuse, Utica, and Willard.

The Feeble-Minded (Intellectual Disabilities) and Epileptic Custodial Institutions of New York includes but is not limited to: Craig Colony for Epileptics, Letchworth Village for Epileptics & Intellectually Disabled, Newark State School for Intellectually Disabled Women, Rome State School for Intellectually Disabled Adults & Children, and Syracuse State School for Intellectually Disabled Children. There may be more.

There is no good reason why these long deceased souls need to be punished and stigmatized in death for an illness or disability that they lived with in life. The great majority of these former state hospitals closed in favor of smaller group home settings or changed their names to Psychiatric Centers about 1974. The cemeteries that belonged to these institutions are inactive. I do not understand why anyone would need to have their name withheld from any list until 50 years had passed after their death. This requirement in the bill only serves to feed the stigma. Let’s hope that even with this flaw, it becomes law.

Photo by Roger Luther at www.nysAsylum.com

Photo by Roger Luther at http://www.nysAsylum.com

Veteran’s Graves 5.14.2011

Willard Cemetery 5.14.2011

Anonymous Graves In New York

Posted on November 5, 2011 by lsstuhler

It is indeed unfortunate that thousands of poor “sane” men, women, and children who lived and died in the county poor houses and other charitable institutions of our country were buried in unmarked, anonymous graves, but their final resting places can be marked with an engraved headstone. The same rule does not apply for those who were labeled “insane.” It is frustrating for family researchers who are interested in obtaining information about their ancestors who were incarcerated at one of these long closed insane asylums because of the federal HIPAA Law which states, “The Office for Civil Rights enforces the HIPAA Privacy Rule, which protects the privacy of individually identifiable health information; the HIPAA Security Rule, which sets national standards for the security of electronic protected health information; and the confidentiality provisions of the Patient Safety Rule, which protect identifiable information being used to analyze patient safety events and improve patient safety.” Everyone has been forced to sign HIPAA documents at their doctor’s office. Most people interpret this law as one that applies to living individuals, not to people who have been dead for over one hundred years. What is even more confusing is that a few states have interpreted the law differently than New York State. NEW HIPAA Update 2013.

The Inmates of Willard, as well as all former inmates of New York State Hospitals, deserve a cemetery that is clearly marked with a dignified, cemetery appropriate sign. It should be well maintained and treated with respect like any other cemetery as a place where descendants and friends gather to pay respects, lay flowers, or meditate in silence. Some states have released the names of former patients buried in anonymous graves at these long-closed, state owned mental institutions, and they have allowed engraved headstones to be placed on the graves. In some cases, these states have provided funding for the headstones. It is my hope that the names of the patients buried in anonymous graves in cemeteries owned or formerly owned by the State of New York will be made available to the public in a unified, searchable, digital database. If these current laws are not modified, these people will forever remain forgotten and anonymous. After 143 years, the time has come to accept the mistakes of the past and turn a wrong into a right by releasing the names of the people buried at the Willard State Hospital Cemetery and all people buried anonymously in state mental institution cemeteries across America. They have waited long enough.

Thousands of people were incarcerated in state insane asylums during the nineteenth and early twentieth centuries. Anonymous burials are common for state mental institutions across New York State and the country. People genuinely do care and are interested in the way their ancestors were treated, how they died, and where they were buried.

Hopefully bill S2514-2013 will soon become a law and will include provisions for a searchable database available to the public. Interested people need to contact their New York State Senators and Assembly Persons to let them know that this bill needs to become a law so that these forgotten, anonymous souls will finally be remembered.

The Inmates of Willard 1870 to 1900 / A Genealogy Resource

Tag Archives: S2514-2013

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this: