I feel the need to say something now that Senator Joseph Robach will not be seeking re-election as a state senator for my district. I believe he sincerely tried to pass a law that would have allowed the people of New York State to know when, where, and how their ancestors died and where they are buried. He is a good man and will be sorely missed! Sadly, the final law that was passed blocked all of us from knowing these facts. The law only helped The NYS Office of Mental Health to continue to keep the records and photographs of deceased patients away from public view. So why did this happen?
CLICK HERE TO VIEW THE VIDEO They’re Buried Where? by Seth Voorhees.
In my opinion, the staff person who originally wrote the bill never read any of the information that I had emailed to him thus creating a bill with multiple holes in it. Even though I kept telling him over the course of six years, while patiently waiting for the bill to pass, that this wasn’t what was wanted or needed, he kept saying, “Don’t worry, it is easier to correct and change it once it is passed.” Well, that’s total bullshit! Another problem was a young millennial lawyer who knew NOTHING about this issue, never read my book or blog, and refused to listen to what I had to say and insisted on speaking over me very loudly on the phone, which made me cry, I might add, was concerned that “…New York State could be sued.” He had NO concern for the poor souls who 150 years ago, were buried in anonymous graves in unmarked cemeteries, one of which is now a youth baseball field. So much for sacred ground or respect for the dead. I foolishly thought that these staffers were supposed to be working on behalf of the people of New York State not for the Office of Mental Health. I was wrong!
Then comes the matter of John Allen, the man who was in charge of public relations for the OMH. He was the guy that you had to go to in order to get any information about former DESEASED patients. I spoke to him once. He skirted around the issue the way all bureaucrats do. I was not impressed. Thank God that I never met the man in person to shake his hand. Eww! I have no idea what has happened in his criminal case.
Case on ex-state supervisor’s alleged diaper fetish reaching an end.
Former State Employee Pleads Guilty to Endangering the Welfare of a Child
According to one source, Mr. Allen had some 300 volunteers with taxpayer funded Ancestry.com accounts, looking up information on deceased patients from Willard State Hospital, trying to find their descendants, etc. That must have cost taxpayers quite a bit of money! I know that my Ancestry account costs one hundred dollars for six months of access and that’s half off because I’ve been a member! HOW STUPID IS NEW YORK STATE?!?! If they would have adopted and followed Federal Law, none of this would be happening as it ALLOWS FOR ANY MEDICAL INFORMATION TO BE RELEASED 50 YEARS AFTER A PATIENT’S DEATH. In my great-grandmother’s case, she’s been dead for 92 years. According to multiple sources on my blog, some of these good people with kind intentions have done the research and don’t know what to do with it because no one from the OMH has gotten in touch with them. Mr. Allen was in charge of this ridiculous plan. Does anyone wonder why I’m tired of banging my head against the wall? It’s because of unnecessary crap like this! Thank you to the volunteers who in good faith were trying to help these anonymous souls.
By adopting Federal Law which was passed in 2013, and including my suggestion as to how the law should read and what it should include, the NYS Office of Mental Health lost a golden opportunity to inform the public what mental illness is and where it lives. We are human, we are flawed, we are all wired differently. No one asks for Depression. No one wants to suffer with Anxiety. No one wants to cut themselves or have Trauma in their lives. No one asks to be born with Autism. No one wants to suffer with Dementia or Alzheimer’s. No woman wants to experience complications from Menopause. And for the millennial lawyer who thinks he knows everything about everything, half of all the women put in the Willard Asylum in 1880 were sent there because of menopause. It could have been YOUR great-great-grandmother! As you stated to me on the phone, “…the state could be sued.” When you stop and think that all I was asking for was WHO ARE THEY AND WHERE ARE THEY BURIED, and then to find out a few years later that a federal law had been passed to release their medical records, let me restate, TO RELEASE THEIR MEDICAL RECORDS, I thought for sure that the NYS Office of Mental Health would comply. I was wrong. I tried.
I cannot bang my head against the wall any longer. If someone else out there would like to pick up the torch and run with it, be my guest. I have written over 200 well researched blog posts over the past nine or ten years which you are welcome to use as long as you give me credit. I have written a book which I self-published with my own money to bring this issue to the public. (Thank you all for making me a hundred-aire!) I cannot do anymore and now that the good senator won’t be running for office again, I wouldn’t know who to speak with, and quite frankly, I just can’t deal with all the run arounds, the writing of letters, the waiting, and the denials coming from the OMH. They know what’s going on. Hundreds of years ago people with mental illness were thrown into filthy prisons, workhouses, and poor houses. Then in the 1800s New York State put them into asylums/state hospitals to try to help them, then in the 1970s they threw them out into the streets where they remain. The jails are FULL of people who are in need of help. They don’t care! Good Luck To You, My Friends! Sincerely, Lin Stuhler
The Inmates of Willard 1870 to 1900: A Genealogy Resource
The following passage was and is my proposal for a New York State law which probably will never be brought up again and will never pass. Rest In Peace Anonymous Souls!
“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, (later renamed State Hospitals), Feeble-Minded and Epileptic Custodial Institutions. When the bodies of the inmates were not claimed by family members, they were buried in anonymous, unmarked graves, or, their bodies and brains were given to medical colleges for research. These forgotten souls deserve to have their names remembered and available to the public by means of a searchable internet database. Some of these deceased patients were undoubtedly United States Veterans who served during the Civil War, WWI, WWII, Korea, and Viet Nam, who suffered from PTSD and Shell Shock. Their graves deserve to be marked with the American Flag and honored like any other veteran’s grave.
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, Marcy, 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 intellectual 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 in the early 1970s. This in turn led to many patients being thrown onto the streets to live in cardboard boxes, or thrown into jail with no psychiatric services, just as they did 150 years ago. I do not understand why anyone would need to have their name withheld from any cemetery list until 50 years had passed after their death. This requirement in the bill only serves to feed the stigma.”
If related to the deceased since when don’t you have the right to this information? This is messed up!
John Francis Fleming Died Sept 1920 at Central Islip State Hospital. World War I Draft registration states he was unfit for military service due to Insanity. Family believes he is buried in the grounds of the hospital, death certificate gives no clue. State of New York has blocked all efforts to find the place of his internment. State & Federal census records provide the only clues of his existence as an inmate.
My Great Grandfather was likely BiPolar based on family history. 99 years and the state of New York won’t admit to what they did with him!
Have you contacted the people at Reclaim the Records? I don’t know if they could help or not, but it might be worth trying.
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I wrote them to ask. They say they have them in their sights a little bit down the road. The more requests, the more likely they will pursuit them. I think we should just keep writing letters, and financially contributing to Free The Records.
The New York State Representatives site is so easy to access and send mail through. When I have time, I send an email or two, high lighting the issue, and how outdated and insulting it is for family members. You don’t have to be a New York resident to access the system and write. Yes, it carries more weight if you live in NY, but most responsible Reps have theirs mail boxes open to out of state comment and inquiry. What politician isn’t thinking of a national career, down the road? I just ask if they would possibly consider introducing a bill in support of family access rights, to See their loved one’s medical records, like every other New Yorker can, to normal time sensitive archival standards; and say that if a bill was introduced in the future, they with engender my full support in any national elections they ran in.
Had Lin, not had this site and written her book, I would never have become passionate about the issue. You can’t fight for something that you do not know exists.
Lin, I tend to believe th
Dear Doug, Please finish your thoughts!
Lin, your hard work and dedication will someday pay off. I’ll write a quick post on my wordjpress site and link to this. Thanks, Jon
Thanks as always, Jon!
Thank you so much for all your hard work. I’ve hit a brick wall with the State of New York as well. I also had miserable conversations with Mr. Allen during which I figured out that his job was to prevent lawsuits, nothing more. Any work being done to identify patients is or was, in my opinion, nothing but cover.
My great-grandfather was committed to the New York Asylum for the Insane in 1901, at the age of 41, and remained there until his death in 1944. I do not know the diagnosis, but since I am a retired clinical social worker, I know that the two major causes of admission were major depression and schizophrenia. His life was hard – he arrived in NYC in 1882 with his young wife, and worked as a cigar maker in Yorkville with poverty wages, and lived in a tenement there. There were at least five, possibly six children born, all of whom died except my grandmother. His first child, a son, died of septic appendicitis at age 13, not long before he was committed. This might help explain a diagnosis of major depression. However, there is also a family history of some particular psychological issues which seem to occur in families that have a person with schizophrenia. This might explain a diagnosis of schizophrenia.
I want to know his diagnosis, and what he died of. It’s takes looking at his medical records to find that information. His death certificate, which I got from the NYC Municipal Archives, only said “natural causes” and other information on it was literally blacked out. It would be extremely helpful to me if I knew, as it has genetic consequences for all the generations since then. Taking a gene test is only a snapshot; what is helpful is tracing the history over the generations, and identifying the triggers that caused a certain condition to arise. And the state is actively preventing me from doing that. It is entirely possible that he was lobotomized, and that would be the reason they are so desperate to keep it secret. However, I’m a big girl, I know that lobotomies were common, and at the time, without modern treatments, it seemed to be the only way to calm the very violent behavior than can happen with schizophrenics. I have no interest in suing; I only want to see his medical records. But the state cannot believe that someone could uncover their terrible secret, and NOT sue. So, like you and so many others, I must remain in the dark.
At least I had one sort of happy ending. My grandfather (son-in-law to my great grandfather) had my great-grandfather’s body interred with his wife and son in Linden Hill Cemetery in Queens, with a lovely headstone.
Maybe, after some time has passed, one or the other of us will pick up the sword again. Thank you again for all your efforts and your wonderful blog.
Dear Dale, Thank you so much for sharing your story. I have heard so many over these past ten years. It is actually quite depressing for me to read them all. The OMH is a joke and so was Mr. Allen. They continue to hide historical records even though federal law says otherwise. But what do we expect from New York State, they don’t follow a lot of federal laws and they don’t even ask for our opinions on major issues. Lawless New York. God Bless You! Please keep in touch! Sincerely, Lin Stuhler
Wow! All the work that you have done to offer those of us with ancestors who were institutionalized with information regarding their lives is outstanding! I was hoping my great grandfather was one of the suitcase holders and I would have released his information to the public through the disAbility Museum in Buffalo. I recognize that our understanding of mental health is evolving and I am sad that New York Office of Mental Health does not see the importance of releasing information to descendants. My great grandfather, Francie J. Heaney, was deemed insane by Doctors in Auburn, NY and he spent the rest of his life, from 1903 to 1942, at the Willard. I also have ancestors who worked in various positions in mental health facilities such as Bellevue and Rochester State Hospital. I will do all that I can do to support the effort to release information to descendants. Please let us know how we can help! (I will look into Reclaim the Records and Free the Records- are they the same or different?)
Lin, thank you for all you have done — you are an amazing person and I hope you have been the spark to move us to make an even louder sound to break down their selfish resistance!
Wow, thank you so much Kathleen! I live in a Rochester suburb and I know that the library at the U of R has thousands of records including photos that they absolutely will not release concerning Rochester State Hospital. It is a real shame that history itself has been hidden after over one hundred years. I did a FOIA request years ago but it is the NYS Office of Mental Health that refuses to follow Federal Law. I have tried for twelve years. I’m getting old here and I just don’t have the patience to deal with all their BS! Please pick up the torch. You can use anything on this blog or the book as long as you give me credit where it is due. Please keep in touch! Thank you again, Kathleen, and Good Luck to You!! Sincerely, Lin
I’m so sorry to hear that you’re so exasperated by people in government. You gave it your best, you did all you could. Maybe someone will pick up where you’re leaving off. Know, though, that your efforts are appreciated. It’s a good, rightful cause, and in the end RIGHT wins every time. It’s just a long, long road sometimes. Thanks for all you’ve done.
Thank You So Much!
Lin I have an ancestor burried in the civil war section there, Orrin Jenks B. 1818, died 27 Aug 1888. Orrin and his son William Jenks served in the 137th NYVI. The story my great grandma told my dad was two Jenks’ served in the Civil war and one was shot in the head and had to live in a convalescence home the rest of his life. The state civil war records show Orrin was discharged for disability on Aug 26th, 1864 at Convalescence Camp, Alexandria Virginia. My question if you happen to know is were the soldiers buried in the Civil War section patients of the hospital? The reason I ask is Orrin was from Kirkwood NY. His son William is buried near Binghamton, so if so it would confirm the story that has been handed down in the family. Also what resources would you suggest looking into to find out more about this.
Hi, I totally agree! NYS is holding all the names hostage. I just finished the Gowanda State Hospital Cemetery & Gowanda Psychiatric Center Memorial Cemetery. I just happen to find hand written copies from a source that wants to be anonymous. I have lied to & I have been threatened if I put them in Find a Grave, BUT I DID IT ANYWAY!!!! Now a mutual friend is going to take pictures to add to the Cemeteries & I am trying to find J N Adam Hospital records. I have had several families delighted to finally find their family & didn’t care that they were committed to the Hospitals. A couple of families thought that family members had died, yet they lived another 15-20 years. Thank you for all that you have done for the patients & families. My quote to people is”These. poor people had to endure their illness, the hospital conditions, only to be buried with no name and just a number for identification!” We will keep trying. Marta Cain
Dear Marta, Please send me the link and I will post it on the Gowanda page: https://inmatesofwillard.com/2013/05/24/gowanda-state-hospital-cemetery/
This law is so stupid! I can’t handle it anymore. If you look under the Tabs: State Hospitals on this blog, and click on Binghamton, those names have been in the public domain for years.
Marta. Could you please contact me directly at email@example.com? I would like to work with you on this and share thoughts/ideas. Jon. (willardsuitcases.com)
Sent from my phone, so pardon the brevity or lack of punctuation.
Jon Crispin PO Box 958 Amherst, MA 01004 413 237 4572
Hi Jon, The Gowanda State Hospital Cemetery on Find a grave is in Collins, Erie County, NY. I don’t know what I was thinking of. The Psyc Center is Gowanda, Erie Co., NY. Sorry.
Hi, I put all the info on Find a Grave on the Gowanda State Hospital Cemetery, Gowanda, Erie Co., NY and the latest burials in the Gowanda Psychiatric Center Memorial Cemetery, Gowanda, Erie Co., NY. The info I was given was copied off the death certificates & the person wants to remain unknown, but was happy I was putting the info in Find a Grave. I have a friend that has started to take pictures to add to the memorials. I have had many happy people that have finally found where their family members are. You have tried so hard to get the state to let loose of the names of patients across the state & I can sympathize. Hang in there, we are making progress!
Hi I sent you the wrong info, Gowanda State Hospital Cemetery is Collins, Erie Co., NY.. The Gowanda Psyc is correct. I take a shortcut to go in & rarely see the first page. Sorry!