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 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.
A poem inspired by the photos of Jon Crispin and the work of Lin Stuhler is located at http://peachfarmstudio.wordpress.com/2011/11/20/poem-signs-suitcases/
Please post your poem here so that people can read it. Thank you!
found in the attic
of an asylum
readied for the trip
satin shoes, dresses,
letters – never mailed
then, taken away
in an open field
– no stones
buildings torn down
– but for suitcases,
From “Talking to the Walls” a collection of prosetry. © 2011 Cheryl Itamura.
Available in limited edition letterpress broadside printed by Peach Farm Studio.
“Signs” is a poem inspired by the photography of Jon Crispin and the research work of Lin Stuhler. It can be found at http://peachfarmstudio.wordpress.com/2011/11/20/poem-signs-suitcases/
I’m really honored that my research inspired you. The book should be available in about two weeks on Amazon and I hope, by reading the book, you will be able to gain more insight as to what was going on with the “insane” during that time period. Thank you so much! -Lin
Would you kindly give me the title of your book, so that I may purchase it?
The name of the book is: The Inmates Of Willard 1870 to 1900 but give me another month, Dale. I have rewritten a few things and added more information. The revised version should be ready in a month. Thanks so much!!
Hello Dale, Any new developments? The Inmates of Willard 1870 to 1900, A Genealogy Resource – Second Edition – 218 Pages, is available at Amazon and CreateSpace. The links are on the cover page: https://inmatesofwillard.com/.
I am so grateful to have found this site. I learned through doing genealogical research that my great-grandfather was a patient at Manhattan State Hospital from between 1900- 1910 until he died in 1944. I just received a reply to my inquiry from what is now Manhattan Psychiatric, refusing to give me any information whatsoever, adding that they could not “confirm or deny” that he had been there. They cite HIPAA laws. This is an absurdity. There is important health history I am being refused knowledge of, as well as never knowing the whereabouts of his remains. Does anyone know if there is any chance of getting information through the Freedom of Information Act?
Hello Dale, I know your frustration. I was refused my great-grandmother’s medical records as well and she has been dead for 84 years. You can’t get the medical records through FOIL because of the HIPAA Law, prior to 1996 you could obtain a copy. I have written so many letters to senators, the Governor, the Office of Mental Health but nothing can be done unless the law is changed. I managed to get my State Senator, Joe Robach, to introduce a bill into the legislature to get the names, dates of birth and death released to the public. Those records were classified as medical records as well. If the bill becomes law, the names of former patients buried in anonymous, unmarked graves will be available to the public. Keep in touch! -Lin
I have really enjoyed your site. I am so fascinated by this era of mental health. I first learned of Willard through John’s Crispin’s wonderful pictures. Fascinating is all I can say and I am not sure why. I will check out your book!
Thank You! I enjoy reading your posts as well!