My cousin said that there was something wrong with Joseph—he did not know what, but thought that he might have been retarded—and that he had been placed in an institution.

When I was 49 years old, an older cousin who was helping me with family research told me that I had an uncle of whose existence I had been unaware. My uncle’s name was Joseph, and he was the younger brother of my mother and my aunt Sylvia. My cousin said that there was something wrong with Joseph—he did not know what, but thought that he might have been retarded—and that he had been placed in an institution. This had happened before my cousin was born, and he did not know what had become of Joseph. It has been 20 years since I received this unsettling information, during which time I have been trying to learn the fate of my uncle, Joseph Trost. This is the story of my effort to discover the course of his sad journey through life.

Initially, both my mother and my aunt denied any memory of the events related by my cousin. Within a few days, they both called me back to say that they had been thinking about it, and it was true; they had had a little brother. There was something wrong with him—neither of them could remember what—and he had been institutionalized. My aunt thought she recalled that he was slow to learn to walk and that he walked with a limp. Neither had any idea of what had happened to him, although my aunt thought that he might have died in his late teens. Clearly, the story about a lost brother was true, and I was certain that neither my mother nor my aunt had been dissembling when they said initially that they did not recall him. Rather, it seemed to me that the memory of him was so painful that they had locked it away in some remote corner of their minds and could only retrieve it again with great difficulty.

This is what they remembered. Joseph was born on March 9, 1918, the third child of my grandparents, Herman and Lena Trost.¹ My mother and aunt were three and five years old respectively when he was born. Lena’s labor with Joseph was long and difficult, so long that the doctor who had come to their apartment on Avenue D on Manhattan’s Lower East Side to assist with the birth actually left to deliver another child while Lena was in labor. When he finally returned, it was clear that the baby was not going to be delivered naturally, so he used some type of instrument to finally bring him into the world.

Perhaps immediately, but certainly soon after the birth, it became apparent that something was wrong with Joseph. How people knew this is not clear. Neither my mother nor my aunt could remember what he looked like, only a comment from their uncle that he was “a beautiful child with dark eyes.” At any rate, my grandparents were coping with the situation until October 1918, when disaster struck. In that month, the influenza pandemic of 1918 reached its peak in New York. My grandfather was stricken, and he recovered. A few days later, my grandmother was stricken, and within 48 hours she was dead, at the age of 27.

For a while my grandfather paid a neighbor to look after Joseph, while my mother and aunt were cared for by my grandfather’s sister. The neighbor soon found the job of infant care too demanding, and my grandfather’s sister had a new baby of her own and could not take on any more responsibility. My grandfather could not quit his job, so I imagine there seemed no choice but to place Joseph in an institution.

Search for Joseph

Armed with the information that Joseph had been institutionalized, my sister Edie was able to find out that there had been a hospital for handicapped children on Welfare Island, in the East River. It had closed decades earlier, but she was able to trace the transferred records to a hospital in Queens, only to be informed that they had been destroyed many years earlier. She then scoured the death records in the New York City Municipal Archives, but none was discovered for Joseph Trost. Calls to all the Jewish cemeteries in and around New York City did not yield a burial record for him. I contacted the American Jewish Historical Society, but they had nothing on him, either. We spoke to all of our older relatives, but no one knew a thing. We had run up against a wall. I was haunted by the thought that Joseph might still be alive languishing in an institution somewhere, but there was no way to find out. We were stuck with our frustration and our pain.

Fifteen years passed and still we were stuck. During that time, two important events had occurred. The Internet had become available as a major research tool, and I had learned that the name Trost was often mistakenly transcribed as Frost or Trust in official records. In 2005, my wife and I joined Ancestry.com, and we decided to search their census data for Joseph. A search under Trost yielded nothing, but when we looked under Joseph Frost, we found what we were looking for in the 1920 federal census: a two-year-old child from New York, whose parents were born in Austria, was a patient on Blackwell’s Island, in the East River, at a place called Metropolitan Hospital. Except for the surname, the data was an exact match.

A search on the Internet quickly revealed that Blackwell’s Island was the original name for what is now called Roosevelt Island, but which from 1921 until 1972 was known as Welfare Island. The building that would become Metropolitan Hospital was erected in 1839 and functioned as the “New York Lunatic Asylum.” It became Metropolitan Hospital in 1895 and, among other things, had a wing that held 460 children. It was painful to think about two- year-old Joseph in this institution, separated from his family. What must he have felt? I was beginning to understand why my mother and aunt, dealing with profound losses of their own, might have needed not to remember him.

In 1955, Metropolitan Hospital moved to First Avenue and 97th Street. I called, but their records from the old hospital did not go back to 1920. I searched the Internet for Frost and Trost, substituting the other four vowels for the letter “o,” but there was nothing. Our exciting discovery had only led us to another blank wall.

Searching the 1930 Census

The matter rested there until the spring of 2008 when my wife, Ellen, had the idea of doing a first name search of the 1930 census. It seemed futile to me. Joseph is an extremely common name, and we might get thousands of false hits. Ellen, a medical librarian and more skilled at Internet searches than I, noted that we could narrow our search significantly in several ways, thereby dramatically reducing the number of false hits. Specifically, we knew my uncle’s date and place of birth, and that would limit the search to Josephs born in New York in 1918. In addition, we could search by categories, one of which was “Relationship to Head of Household.” Ellen reasoned that, since Joseph was probably still in an institution in 1930, the institution would be the head-of-household. That would make Joseph’s relationship to the head-of-household “patient,” rather than “son” or “daughter.” So we entered the word “patient,” an uncommon search term, thereby further restricting the number of hits to “patients named Joseph who were born in New York in 1918.” It was a long shot, but there was nothing to lose.

To my utter astonishment, we found a listing for a person named Joseph Fross, who was a patient at Children’s Hospital on Randall’s Island in the East River in 1930. He was 12 years old, born in New York, and his parents had both been born in Austria. Looking at the copy of the actual census sheet, it was immediately obvious that the name was incorrectly transcribed, probably because the final “t” was uncrossed. Everything matched: this Joseph Fross was actually Joseph Frost (who was really, we hoped, Joseph Trost). My uncle had still been alive in 1930!

I “Googled” Children’s Hospital of New York and struck gold—and more sadness. Children’s Hospital had been a hospital and school for the “feeble minded” and for those “thought to be feeble minded” due to other conditions, such as seizures. In 1931, a new school, the Wassaic State School in Dutchess County, New York, had opened, and many patients from Children’s Hospital had been transferred to it. Another institution, the Letchworth State School in Rockland County, also began to accept “feeble minded and epileptic” children around this time. Could Joseph have been sent to one of these schools? Suddenly, and for the first time, there were multiple leads to track down, and I began to feel hopeful that I might actually learn what had become of my uncle.

Next, I searched the Internet for Wassaic—and hit the mother lode. I found a 2005 article titled “Remembering the Forgotten” from a publication called New York Nonprofit Press. The article explained how institutions like Wassaic had been self-contained communities with their own doctors, hospitals, morgues, cemeteries, and systems for vital statistics, such as death certificates. When a resident died and was not claimed by the family, the burial took place either on the grounds of the institution, in its cemetery, or in a section of the town cemetery rented by the institution for its residents. No tombstones were erected. Instead, a metal plate with a number on it was placed flush with the ground over the grave. Over time, many of these plates were covered by the soil, so that no trace remained of the person’s resting place—not a name and not a number. It was as if they had never existed.

Starting in about 2002, a number of groups had begun an effort to restore the identity of the deceased residents by locating all of the metal grave markers, determining the name that went with the number on each marker, and erecting a monument to everyone buried in each cemetery. The goal was (and is) to do this at every New York state institution that buried its residents in this way. Significantly, this movement had the backing of the state Office of Mental Retardation and Developmental Disabilities (OMRDD). Most significantly for me, the article provided the names and phone numbers of several of the groups—both state and private—that were working on this project. My lonely search was over—after 20 years of futility, I would have help in finding my uncle Joseph.

Joseph’s History

A call to Tom McCluskey at New Horizons Resources, one of the advocacy groups listed in the article, brought quick results. He contacted someone at OMRDD about my quest, and in a few weeks time, I received an e-mail that contained the long sought after information. First, it stated Joseph’s date of birth as March 9, 1918, and the names of his parents as Herman and Lena. At long last, here was documentary proof that Joseph Frost was indeed Joseph Trost—my uncle.

The e-mail went on to say that Joseph was severely retarded. He was admitted to the Wassaic State School (I’m guessing that he was transferred directly from New York City Children’s Hospital) in 1934. In 1937, he was transferred from Wassaic to the Newark State School in upstate New York, where he died on November 13, 1941. He is buried in the East Newark Cemetery in Newark, New York. The telephone number of the cemetery was included, in case I wanted further information about the gravesite.²

What a conflicting set of emotions I felt as I read and reread this e-mail. Elation mixed with disbelief that my quest to learn the fate of my uncle had succeeded. Both emotions were mixed with a profound sadness at the thought of his lonely life, so far from his family. I also felt sad that my mother and aunt, who had died just a few years earlier, would never know what had become of their baby brother. Yet at the same time, I thought that perhaps they would not have wanted this painful knowledge.

In genealogy, every answer raises more questions, and this situation was no exception to that rule. I wondered whether some physical condition, e.g., cerebral palsy or Down Syndrome, accompanied Joseph’s intellectual limitation. In addition, I was curious to know what had led to his death at the age of 23. Finally, I wanted to know the exact location of his grave, so we could go there to pay our respects. I thought that having Joseph’s death certificate should answer the first two questions. I spoke to a number of people and learned that his death certificate had been issued by Newark State School and was in the possession of OMRDD, not the State of New York. Truly, these institutions had been a state within the state. As they had been throughout this process, the state employees I encountered were caring, compassionate, and helpful,³ and in a few weeks, I had Joseph’s death certificate. It said that he died of “Multiple abscesses in lungs—Lipoid Pneumonia,” a condition he had had for “over two years.” Under “Other Conditions,” there was just one word: “Idiocy.”

My wife noted that lipoid pneumonia was a somewhat unusual diagnosis. It is neither bacterial nor viral. Instead, it refers to an accumulation of fat in the lungs, which gradually forms fibroids that interfere with—and ultimately prevent—breathing. An Internet search revealed that it is most often caused by absorption into the lungs of mineral oil, and it is most commonly encountered in older people or infants who are constipated and/or have a swallowing disorder secondary to a neurological disorder. Joseph was neither elderly nor an infant, but he could well have had some or all of these difficulties and been receiving mineral oil over a prolonged period of time. It appears that mineral oil, once absorbed into the lungs, cannot be cleared from the lungs by the body. It just accumulates over time, causing lipoid pneumonia. Treatments that would be used today, such as antibiotics and corticosteroids, did not exist in 1941.

I am still curious about whether Joseph had a co-existing physical condition, and I’m hoping that that information might be in his medical record, if it still exists. Getting a copy of it will be difficult because of federal privacy regulations, but I’ve come too far to quit now, so I will try. In particular, I would like to know if his condition was the result of a birth injury (caused by lack of oxygen perhaps, and/or by the instrument delivery) or whether there was a genetic component to his intellectual limitation.

Finally, I called the East Newark Cemetery in order to locate an exact gravesite, but they had no record of his burial. They referred me to a former supervisor of the cemetery and to a local funeral director, in the hope that they might know something. They were all extremely kind and helpful, and they confirmed that a resident of the school who died in 1941 would be buried in the East Newark Cemetery. I also learned that about 600 former residents of the Newark State School are buried in a special section of the cemetery, in five rows, the individual graves marked by numbered metal plates. I then turned to a self advocacy group that is working with OMRDD, and Steve Holmes of that group contacted Kathie Gruszka of OMRDD. On January 15, 2009, Kathie sent me an e-mail containing the long awaited news—she had discovered a file that listed my uncle’s grave marker as #542.

My plan is to go to the East Newark cemetery this summer to try to locate the exact site of grave marker #542. Even if we cannot locate it, we will arrange to erect a tombstone in the Newark State School section of the cemetery, so that our uncle, forgotten in life, will at least be remembered in death. I’m thinking that the stone will say the following:

Forever In Our Hearts

JOSEPH TROST

Josef ben Chaim v’Leah

Beloved Son, Brother and Uncle

March 9, 1918

November 13, 1941

Newark State School #542

Notes

1. As she began to recall these events, my aunt remembered that she had a scrap of paper on which were written the names of all of my grandparents’ children, the dates and times at which they were born, and the address at which they were born. This information enabled me to obtain Joseph’s birth certificate.
2. The question naturally arises as to why my grandfather did not arrange for Joseph to be buried near his mother, who died in 1918. I have two theories about that. My grandfather was a loyal and loving man. My aunt, when she began to remember Joseph, recalled my grandfather and grandmother (his second wife) going to visit him (while he was still in New York City). But my grandfather had a son, my wonderful Uncle Milt, with his second wife, and Milt, now 20 years old, knew nothing of Joseph. I think that my grandfather would have wanted to spare everyone the pain of this revelation. The other theory is that Joseph was a ward of the state, and they buried him where they wanted to.
3. In fact, this was true of everyone, whether a state employee or part of a private group, who helped me in my quest during the spring of 2008. They shattered the stereotypical image of the faceless bureaucracy.
   • Saul Lindenbaum is a clinical psychologist in private practice in Phoenix, Maryland. He has been researching his family history for more than 30 years. In 2004, he wrote and published a family history, The Well of the Past, which he distributed to dozens of his relatives.

¹