Searching for Uncle a Family Lost to Willowbrook
My father saw his older brother, David, only once in his life. He was 10 years old, and David, then 13, was living at the Willowbrook State School for the intellectually disabled in Staten Island. This brief visit occurred shortly before my grandfather’s military career took his family overseas for several years. Maybe the visit was a chance for my grandparents to introduce David to his brothers before they left Long Island. Or perhaps it was a rare opportunity for my grandmother to see her firstborn again, the child that she had agreed to send away to save her marriage.
My father told me about David, and the visit — the only time that the three brothers were together — when I was 11. He didn’t know exactly what was wrong with David, just that he had been in one facility after another for as long as my father could remember.
We never talked about David much after that initial conversation; rather, my father and I followed the lead of my grandparents, who for decades had lived as if they had only two sons. I thought about my uncle a lot, though, and the silence surrounding his circumstances only made him more intriguing. I knew that it was ridiculous to feel any responsibility for this state of affairs; after all, the decision to obscure David’s existence was made long before I was born. But I felt guilty that David never met my sister, my mother and me. As I got older, adhering to the apparent code of silence became more difficult.
On a visit to my grandparents’ house when I was in college, my grandfather and I went through his photo albums. Those thick books haphazardly depicted both his personal and professional life, including his time stationed in Germany and Korea. My father’s baby pictures were mixed in with shots of somber-looking Koreans.
On one page, there was a picture of my grandmother with a little boy. That’s David, my grandfather said, his voice steady and matter-of-fact. And that’s his birth announcement, he added, pointing to a yellow piece of paper. I hardly had time to read the words before he turned the page. When I told my parents, the name “David” catching in my throat, my father said he had never seen the birth announcement, either.
Seeing my grandparents’ small acknowledgment of their secret son was what made me decide to look for David. At one time he had been their firstborn, cherished and photographed and announced to the world. I knew that learning more about David would not change any of the facts of his present life, any more than it would undo the difficulties of the past. But he had been a part of my family once, and I hoped that finding out everything I could about him now could make him a part of the family again.
For all the determination I felt, however, reality soon intruded. The logical place to begin my search would have been with my grandparents, but seeing their son’s picture and name in an album was one thing; saying that name to them was quite another. I had seen them turn cold and condemning when my father did something that they disapproved of, and I didn’t want to experience that myself. I didn’t know how to broach the subject with my father without upsetting him, either.
And then, within the span of seven years, they all passed away — first my grandfather, then David, then my grandmother. My grandfather’s military service had earned him the right to be buried in Arlington National Cemetery, and he had arranged for his wife and oldest son to be buried there as well. I suspect that my grandparents saved this honored spot for David because they recognized that he would have no other family to make preparations for his death. At my grandmother’s funeral, I stared at the simple headstone that bore all three names and sets of dates. A Star of David was etched into the stone, and I wondered if David knew that he was Jewish.
After my grandmother died when I was 29, I told myself that my window of opportunity had slammed shut and it was best to forget about David. After all, what good would come of poking around the past now? I couldn’t change anything, couldn’t make David a part of our family anymore. I had waited too long, been too passive.
Yet I never stopped thinking of him, and regretting all that I had not done. Finally, two years ago, at the age of 33, I decided to pursue information about him; at the very least, it was a chance to assuage my guilt, as well as fulfill the nobler goal of sharing what I found with my father.
Since I live in Washington, D.C., I have an excellent research institution at my disposal — the Library of Congress. I began with the first place that David lived: the Willowbrook State School. My understanding was that David was sent there in the early 1950s, when he was 6 or 7, and stayed until the state shut down the facility in the 1980s. Willowbrook was famously described as a “snake pit” by Senator Robert F. Kennedy because of the overcrowding and mistreatment of patients. In the 1960s it housed some 6,000 children when it was built for just 4,000. There were numerous hepatitis outbreaks, and researchers used sick patients in controversial studies on the disease. Geraldo Rivera exposed the conditions at Willowbrook in a 1972 report for WABC-TV in New York City. The investigation garnered national attention, and helped lead to the school’s closure and the passage of federal protections for institutionalized people.
I pored over books about Willowbrook, not entirely sure what I was looking for but relieved to be finally doing something. I found a documentary about the facility; it featured black-and-white images of naked men huddled on the floor and vacant-eyed adults who stared as the camera swept over them. I wanted to freeze each frame and search for my uncle.
The patient records from Willowbrook burned in a fire decades ago, but I also had the name and address of the facility that David lived in at the time of his death. The staff was sympathetic, but not exactly encouraging. They didn’t keep patient records for more than a handful of years, so it was doubtful that any of my uncle’s medical information was still on file, they said.
Up to that point, I had kept quiet about my search. My sister and parents knew that I was interested in learning about David, but the years of silence had proved effective at keeping questions to a minimum. Now, though, it looked like I was going to have to reach out to the few relatives that knew about David to see if they could provide any help.
I called my great-aunt, who married my grandmother’s brother. She was just as gentle as I remembered from my few visits to her house when I was a child, where a massive family tree dominated one wall. The gold-and-brown tree had special notations for the family members who died in the Holocaust and those who served in the Israeli army. As we talked, I wondered if it had a leaf for David.
When I asked her what she knew about David, she said she never questioned the situation; she married my great- uncle four years after David was sent to Willowbrook, and since no one in the family talked about him — my great-uncle was just as close-mouthed as his sister — my great-aunt didn’t think that she should, either. In fact, she told me, she’d had the impression that David lived in a crib all his life, even as a grown man, though she knew that couldn’t be right.
My father’s cousin didn’t know much, either; she said that my grandmother, with whom she grew quite close late in life, never let on what had happened. But both she and my great-aunt offered some new information about what might have been wrong with David. My father always thought that his brother had suffered brain damage at birth because the umbilical cord had wrapped around his neck and deprived him of oxygen. But now I learned that David may had been dropped during delivery; or there was a genetic defect; or the doctor was drunk and made an awful mistake; or maybe it was the cord, after all. But amid the disparate speculations, there was one truth that my relatives repeated again and again: My grandmother wanted David to stay at home, but agreed to send him away to save her marriage.
This revelation about my grandparents’ marriage seemed out of character for them; the memories I have of my grandfather do not hint at a man that would make his wife choose between her husband and child. But maybe that explanation is too simple. Both of my grandparents placed a high premium on not only assimilating into, but also succeeding in, a society that viewed them with distrust because of their religion. How afraid they must have felt when they realized that their oldest son could never do that; and what impossible pressures they must have faced, a young couple without much money or family support.
Another regret to add to the list: that I never acknowledged how difficult their decision to put away David must have been. That I never told them I wished David’s life — all of their lives — could have been different.
And one more regret that only grows as the months pass: the trail to finding out what was wrong with David, why he had to be sent to Willowbrook, might not just be cold, it may not even exist. What my father told me all those years ago might be the beginning and end of the story.
Several months after I began my search in earnest, I became pregnant. Even though every test and exam yielded perfectly normal results, I was never able to fully let go of the fear that something horrible could happen. My mother supported my decision to forgo a baby shower, pointing out that in the Jewish faith — or at least the particular brand of Alabama Judaism that she was raised with — you don’t celebrate something that hasn’t yet happened. I found her reasoning surprisingly reassuring, as it so neatly lined up with my own outlook and anxieties.
The delivery was normal at first. But after five and a half hours of labor, the nurse looked at the fetal monitor and said that the baby was having trouble breathing. It looks like the cord is wrapped around her neck, the nurse said. One word flashed through my mind: David. The nurse put an oxygen mask over my mouth in an effort to increase the amount of air the baby was receiving, and the doctor said that the baby needed to be delivered immediately. All I could think about was my grandmother, how she must have thought her child was going to be perfectly healthy, until all of a sudden he wasn’t. How helpless she must have felt, how many unanswered questions haunted her from that moment forward.
The cord was wrapped around my daughter’s neck when she was born. The doctor instantly flipped her tiny body, freeing her to yell and cry and start her life as a healthy child.
She’ll know about her great-uncle; she’ll visit his grave, the same one where her great-grandparents lay. I might not be able to tell her anything more than I know right now, but that is the least I can do for her. And for David.
Sarah Erdreich is the author of “Generation Roe: Inside the Future of the Pro-Choice Movement” (Seven Stories Press, 2013). She lives in Washington, D.C. with her husband, daughter and dog.