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!
The Inmates of Willard 1870 to 1900 / A Genealogy Resource 
Oh my goodness, I was brought to tears with this story. It is me right now, even down to the twit of a neurologist I saw just a week ago. Thank you for your story it really helps me take a step back and trust “my” instincts.
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I’m glad it helped!!!!! Thanks for sharing and keep in touch!!!!!
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Dear Lin,
Thank you for your important work.
My grandmother spent over 18 years in the Rochester State Hospital. According to her death certificate which I was able to obtain from the city, and my own research, she most likely suffered and died from the side effects of the medications they would have given her in those days. She was autopsied, then buried in Mt Hope Cemetary with no marker or record of any kind. Sadly, her husband had a benign frontal lobe brain tumour that affected his judgement and behavior, and was most likely a factor in having his wife committed.
For your own health, I recommend genetic testing with Family Tree DNA, then downloading your raw data file and uploading it to sites like Promethease and Genetic Genie to find out what inherited tendencies you may have. I also highly recommend the books Why Isn’t My Brain Working? by Datis Kharrazian and The Paleo Approach by Sarah Ballantyne. It IS possible to feel much, much better. Health is not about doctors, it is about your own behaviors and determination to make and keep yourself well.
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Thanks for caring and sharing! I’m fine. To be honest, it was the medication that my neurologist was giving me for the essential tremors that was making me depressed. When you’re on certain medications, you don’t realize how depressed they have made you until you’re off of them. I would rather have my head shake (like Kathryn Hepburn), than to be that depressed. That was the worst two years of my life! Thanks again! -Lin
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I appreciate all of your hard work. My great-grandmother lived most of her life and died at Middleton State Psychiatric Hospital. Through years of hard work, I did receive her medical records and information about where she is buried on the hospital grounds. My family plans to place a marker on her grave, honoring her as an important person in our ancestry.
I, too, suffer from depression and in my many years of treatment, encountered one (male) doctor who treated me much like you describe your unbelievable experience.
Thank you for your many years of service to this cause, for persevering, and for fighting for the dignity of our ignored and forgotten relatives.
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Thank you for your kind words! How did you receive your great-grandmother’s medical records? -Lin
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I have enjoyed all your posts. I, like you, have had the same thought pass through my mind about if I lived back then, I probably would have been locked up too. Some doctors are so insensitive and have no “people skills” and lack concern for the mental state their patience are in. I hated it when I started through the “change” and one doctor said it was all in my head! Now really…makes me wonder how many women might have been locked away for just being “normal”. As one writer put it…”Normal is just a setting on the dryer”…what is normal for one might not be normal for another in certain circumstances. I use to handle things better and have a more calming spirit…but these days in my “older” golden years sometimes I don’t handle things as easily and react in ways that my mama taught me not to say or do.. The people under consideration in the homes needed to be treated as “normal” and not made to feel inferior or ashamed. Hang in there and keep the posts coming.
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Thanks for your kind words, Barbara! That’s a great line…”Normal is a setting on the dryer.”
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Dear Lin,
You just keep being yourself and hang on to the reality that the names will be released at some point. I went to Albany last week to lobby for the bills by talking with Senator Carlucci (head of the Mental Health Committee for Senate) and meeting at the office with Aileen Gunter who chairs the Assembly Mental Health Committee. and told them how MORE important it is now that these bills be brought to the floor since OMH is being so resistant to publishing even public domain information. ex. Lawrence Mocha is listed on the 1940 census, his SS# is on line along with his birth and death date. From oral interviews we know he dug at least 1500 graves. These are the facts that we wanted to put on the brass plaque for Lawrence. You have done a great deal to further this cause, Lin. I hope you will come to our memorial on June 14th. We are moving ahead with our plans despite the lack of permission because Senator Nozzolio and Darby Penney’s lawyer are advocating for us in hopes that OMH will be silent.
Colleen
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Thank you, Colleen, for your kind comment and for all your hard work! I hope that something happens soon, it’s been a long time! Can you imagine denying anyone from having a headstone and marking a grave? If I wasn’t involved in this, I wouldn’t have believed it. Keep me posted and thank you for inviting me to the ceremony. I would love to attend and will plan on being there!
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Oh, and btw, 100 years ago, you stood a very god chance of getting locked up for almost nothing. I’ve been researching 19th century asylum life for a novel and apparently, you could be locked up for crying in public, being depressed, all kinds of little things. If you found yourself in a police station for whatever reason and they thought there was something up with you that they didn’t want to mess with, off you would go! Over burdened poor houses even used to empty themselves out into the insane asylums. Talk about crazy…
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Hi Jane, I hope you read my book. It’s factual and begins with the county poor house system through the creation of insane asylums and state hospitals. Best of Luck! -Lin
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Yes, I believe I already have it on my wish list. I wasn’t sure if you were the same person I messaged before. I’ll be ordering it in the next day or so.
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A great post, and I absolutely agree with you. My great great great grandmother died at Willard in the 1880s. She was committed there when her youngest child was a baby, and I’m thinking it was probably post partum depression (though I’m making an educated guess there). When that same child was 12 years old, her mother died of TB in the asylum, so she was there for at least ten years. The family was fairly well off though, and they did transport her home to the family cemetery, at least. I was really disturbed while I was doing family history and found this information, that she had died in an asylum. I would love to get hold of her records.If they have nothing to hide, I can’t understand why anyone now would object to having that information released after such a very long time has passed. I don’t live in NY anymore, and so am not sure who I would contact, but I would be wiling to give it a shot.
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