Still Standing

After over fifty years, Warren and I began corresponding—a term I use loosely, as Warren does not write. He does not speak. His IQ hovers below 20, and he does not know who I am. This is an excuse I saw my parents embrace most of their lives to alleviate the guilt of no contact, of giving up their parenthood, when it came to their fourth child and firstborn son.

Warren was about two years old when it became increasingly evident that something was wrong. He would spend hours sitting on the floor, with his head against the wall, rocking back and forth as if keeping time with the ticking of a metronome only he could hear. His hair had worn a little bald patch in the spot where it met the plaster. Words were not spoken; words were echoed, much like a parrot mimicking what it heard. No words came out of their own accord. No babbling two-year-old banter, the type we parents sometimes complain about. I’m sure there was no complaining by my parents. Only worry. Enough worry to make appointment after appointment with specialist after specialist. Diagnosis: Severe Mental Retardation. Age three.

~

“The Benches” was the place all the mothers of the building would meet with their toddlers and strollers to socialize and gossip. It was a long strip of a park adjacent to Henry Hudson Parkway with benches extending a city block. I remember playing there as a child with dozens of other kids from the building. I have very few memories of my childhood, but “The Benches” I always remember as a safe place. I have had recurring dreams in my adult life of various scenarios where someone is chasing me, trying to kill me, etc. I always knew that if I could just get back to “The Benches” and lay down on the concrete, I would always wake up in my bed. I would be safe.

Mom was embarrassed to have the other moms see her son, who was not quite the average child. So, instead of her usual routine with the older children, of going to The Benches with the other mothers, she would take Warren in the stroller and walk for hours, she told me, so her baby would not be seen, and apparently, she would not be embarrassed. It was the 1950s, but it is still hard for me to fathom.

The doctors, the specialists, and even the Catholic priests would all weigh in. It was decided that the best thing for all would be to place Warren in a home for the mentally ill. The decision was made that Warren, not yet four years old, would be sent to one of the best private institutions in the Greater New York area. I remember driving north, up the tree-lined Saw Mill River Parkway every Sunday afternoon to visit Warren. I was eight.

We would go to the Carvel ice cream stand down the road. Sad but true, this is the only concrete memory I have of my brother. Carvel on Sundays.

To be fair to my parents, it is what you did in the 1950s. Your pediatrician suggested it, and all the specialists recommended it. Many families faced these same choices. For some, it was a deep, dark family secret, not even knowing that their sibling or relative even existed. For others, there would be weekly visits. I know it was not easy for any of them.

My father was manic-depressive in the days before lithium. With three children of my own (all born within twenty-seven months of each other), I have often wondered, what would I have done? There are those who say that the parents were ashamed. Others say they just threw their children away and forgot about them. I do not pretend to know the answer. Unfortunately, what goes up must come down. The mania of my father, along with his record-breaking sales performance, came crashing down. When my father was in a manic stage, he could sell ice to the Eskimos. He was hospitalized, and the income dried up. The private institution had to give way to a state mental hospital, maybe the three most dreaded words in the English language.

Warren was transferred to Willowbrook State Hospital on Staten Island. It was actually called a school, and it was the largest institution for the developmentally disabled in the world at the time (and that was not a good thing).

~

 My brother spent about fifteen years of his life at Willowbrook, the place that Robert F. Kennedy called “a snake pit” in 1965. When Kennedy visited the site, he was horrified by what he saw and stated that “individuals in the overcrowded facility were living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo.”

A combination of budget cuts by Governor Nelson Rockefeller and more demand for placements coupled with indifference led to most of Willowbrook’s problems. Some quote a ratio of seventy patients to two or three caregivers. I wonder how those caregivers could keep clothes on the backs of children with mental disabilities as severe as most residents, who would disrobe as fast as staff could dress them. How could they keep the feces and urine cleaned up when there were seventy other children to look after?

I visited Willowbrook once. It may have been more than once, but the first visit is all I can remember. It was the Fall of 1970. I was twenty years old. I had been visiting my brother from the time I was eight years old. My two sisters, ages 4 and 9, and I, would pack into my parent’s car and drive the half hour or so up the tree-lined highway to Ferncliff Manor in Yonkers. It was a beautiful place with acres of grass. We would lay a blanket out and have a picnic with our brother. We would run around and play, especially my younger sister, as they were the closest, only about a year and a half apart in age. She missed her baby brother.

Willowbrook, on the other hand, was far from the pretty, peaceful picnic grounds of Ferncliff. The antithesis. When I first entered Willowbrook in 1970, I was with my father. My mother would not or could not return. My senses were bombarded. The scent was sharp. A mixture of bleach and feces. The air was still. The halls were dimly lit so as not to see the chaos or the peeling paint. The sounds I could not quite place: murmurs, distant cries, quiet humming, the shuffle of feet. There was a sense of stillness that felt anything but peaceful. I had not prepared myself for what I saw that day, but even then, I had the sense this place was failing the very people it was meant to be helping. A kind of numbness settled in—not because I didn’t feel it, but because I felt too much and didn’t know where to put it.

Dunham as a child with her mother and siblings, photographed by Burton H. Halper

It wasn’t chaos. It was something softer and harder to bear—indifference. Neglect masked by the very rhythms of daily life.

That day left a lasting mark. It didn’t just shape my view of institutions—it asked me who we become when we are unseen. Does Warren know he has a family? A majority of the residents there have no visitors at all. Unfortunately, I did not pursue those questions or those feelings I had that day, for many years. I buried them with all the rest.

It breaks my heart when I look at this photo taken when Warren was just a few weeks old because I see such hope. Children with such great prospects, immense potential. A future not yet marred by illness and tragedy. We were all unaware of what lay ahead.

It saddens me now because I know the outcome. I lived through it. The memories feel like a slow echo that never quite fades. There would be two more children to come, and the youngest would, in essence, never have the opportunity to know two of her siblings pictured here. In fact, she was not even told of their existence for years.

Lorraine, my older sister on the right would become affected by schizophrenia in her teenage years and commit suicide in 1967. Warren, the newborn in momma’s lap, would be institutionalized by the age of three, and dad, the photographer, unbeknownst to me at the time, would suffer from Manic Depression/Bi-Polar I for the rest of his life. I was sixteen years old when lithium became FDA approved for his type of mental illness. I didn’t fully recognize my family situation for many years. Like all small children, I perceived my life as typical. Of course, it was the only family life I had known. I used to think I had a perfectly normal childhood growing up in an upper-middle-class family in a particularly good neighborhood of the Northwest Bronx. Still, all is not always as it seems.

So, it has been fifty years since that day at Willowbrook. Fifty years of distance is not just a timeline; it’s a slow layering of choices, silences, rationalizations, and even regret. I had always blamed or perhaps rationalized my parents’ behavior for not visiting and for moving 2500 miles away. But what about myself? Was it guilt for not challenging the patterns my parents set? Was the guilt shaped by family dynamics and motional survival?

When you believe someone doesn’t recognize you, especially someone you’re biologically and emotionally tied to, it can feel like the connection was broken before it even had a chance to be made. “What’s the point? He wouldn’t understand. He wouldn’t know me.” But underneath that logic is a powerful current of loss—not just of a relationship, but of significance, visibility, and possibly identity.

Saying “He didn’t know who I was” may have been a way to protect us all from pain. There’s grief for what never existed: no history, shared memories or stories passed between siblings. And that grief is quiet. It just lives silently under decades of rationalization.

~

Since 1985, at the age of thirty, my brother has been living in a group home in upstate New York. The Consumer Advisory Board (CAB) monitors his wellbeing, which provides necessary and appropriate representation and advocacy services on an individual basis for all Willowbrook Class members as long as they live.

Warren has been well taken care of for the past thirty-eight years of his life. He has his own advocate who makes sure that all the stipulations of the Willowbrook Decree of 1975 are being followed when it comes to someone from the Willowbrook Class, as is my brother. But I often wonder, what about the trauma of the past? What does he comprehend of the horrors of growing up in an institution such as Willowbrook?

I am in contact with his advocate as well as his local case worker. They say he seems happy but does tend to withdraw and isolate himself. He doesn’t trust people very much. I suppose I can’t blame him. He is electively mute. Not to mention that Warren is missing the tops of at least six fingers, and, sometime in the past, his nose has been broken. Warren also has no teeth. I read an account of a Willowbrook parent stating that the Willowbrook dentist was notorious for pulling teeth. Her child had no teeth because she would bite herself until she bled. Whether this is connected to Warren’s missing fingers or missing teeth or is a result of abuse or self-mutilation remains a mystery.

 ~

 Warren loves classic rock—a man after my own heart. Music therapy is essential in the lives of the mentally disabled, probably because music is nonverbal. It transcends language. My brother is nonverbal, and I like to think that the music he listens to speaks to him in some way. I know that music calms anxieties and relaxes us when we are overstimulated. I’m told he can spend hours sitting in a rocking chair on the back porch of his group home in Plattsburgh listening to his CDs: He likes everything to be in its correct place, such as furniture being arranged in a particular way, or the house phone hung up in a certain direction. They say he can be quite helpful in clearing things away, such as mats after PT, arranging and clearing the living room after various activities. Sometimes, amusingly enough, his arranging can happen while the activities are still in progress!  This brings a smile to my face!

Warren has a personal savings account that cannot accumulate over $2,000. When the account gets up there, they go shopping to spend it down. His basic needs are taken care of, so he can shop for things he especially likes. His caregiver said Warren has the most expensive taste of any man she’s ever met. They will go to JCPenney, and he will go directly to the silk shirts or the most expensive items they sell. He is a very “interesting and complex” person, she says. It shows the respect that he garners as an individual, not simply someone or something to be taken care of. Not forgotten.

   ~

It had been fifty years since I saw my brother, The last time was that visit to Willowbrook in 1970. Not long after, I left New York for the west coast at about the same time my parents left New York. While my mother was alive, she would get annual reports on his health and progress and always shared them with me.

My youngest sister, Stacey, had never met Warren. He was institutionalized eight years before she was even born. She can’t quite remember when she was told that she had another brother. It was probably when she was about seven or eight years old.

When I brought up my plan, she was hesitant at first, but we finalized our trip and met in Montreal for a three-day visit before driving to Plattsburgh, New York, together in October 2023 to meet our brother. We had also arranged to meet both Warren’s care manager and his advocate from the New York State Office for People with Developmental Disabilities (OPWDD) for lunch in a nearby café.

I was heartened to learn of the care that the State of New York is giving to those with developmental disabilities and the extra care for the “Willowbrook Class.” Meeting these two women in that café was proof enough of the care and concern that my brother is getting. They spent two hours with my sister and me talking about Warren, listening to us recount our own family history, and answering any questions that they were able. They could not have been more caring and sincere. I am so grateful to have met them. Not only did they spend those two hours talking with us, but they also went with us to meet Warren. He was familiar with both, so they carved out even more of their busy days to come along.

We arrived at the house on Turner Road. It was out in the country among the trees. The feeling was peaceful and bucolic. His house manager greeted us and let us know that the other housemates had gone out so that we would have more privacy and less chaos.

There are four male house members. I believe at age sixty-eight, Warren is the oldest. Two of the men are more high functioning and a bit outspoken, while Warren is selectively mute and very low functioning. The fourth member falls somewhere in between, and it all works.

The house manager told us that Warren had just gone to his room to lie down. His advocate went and peeked her head in his room to say, “Warren, you have some company. Do you want to come out and say hello?” No response. His habit is to get into his bed with his legs crossed in a yoga position, then pull the blanket over his head and lie down. He looked like a not so little cocoon. I then said, “Hello Warren, I brought you a present,” and he immediately popped up from his bed and ran down the hall to the dining room table. He moves very quickly (and apparently even quicker when there is a present involved).

A bit later, we went out to his favorite spot on the porch where he sits in his lounge chair to rock and listen to music. We went through his box of vinyl albums sitting next to the record player. I was a bit surprised. I had to laugh and think, He’s a man after my own heart. There was Pink Floyd, Led Zeppelin, Fleetwood Mac, The Beatles (his favorite) and even AC/DC and Metallica!

So, Warren came out of his room to get his present. I brought him a Seattle Sweatshirt, as I know he loves sweatshirts. He went straight to the kitchen to get strawberry milk. The house manager poured his milk and then let him pour in the strawberry syrup and mix it up. They brought it to the table where he gulped it down as fast as he could and some of it spilled down the front of his shirt. All those years at Willowbrook ingrained in him that everyone would steal his food if they could, so eating or drinking as fast as he could was the only way to protect it. To this day, he must have someone watch him eat so the food doesn’t go down too fast and choke him. When a new member of the household is added, Warren will either bring his food to his room or else put his arm around the plate, protecting it from the would-be food thief. Once he is comfortable with the new house member, he will come back to the table for meals. It has been thirty-eight years since Warren left Willowbrook. Habits die hard. I only wish I knew what other horrible memories reside in his brain from spending his most formative years there.

He came to the dining room table and sat across from me.

We looked at each other. There was a connection of some sort. I asked if it was alright to take a picture. His advocate asked Warren if it would be ok, and he immediately jumped up from the table. I thought, oh no, he’s going to run back to his room, and turn back into a cocoon. To my surprise, however, he stood up, went to the middle of the room, and looked right at me, as if to say, “I’m ready for my picture now.” I thought I would quickly take advantage of the situation and handed my phone to Stacey and asked her to take a picture of both of us. I nonchalantly went over and stood next to Warren.

At one point Warren grabbed my arm and started pulling me towards the kitchen. I thought this was a real moment between us, but it turned out, he wanted more strawberry milk. When I realized, I just laughed and said, “Oh, he’s just using me.”

We had a total of twenty minutes or so until Warren decided to go back to his room, get in his bed, and pull the blanket back over his head. Stacey, for the most part, stayed in the background. But I know she was as moved as I was by the whole experience.

He reached out and touched my hand once. I really believe we did have a connection, my brother and I. I now have a new and wonderful memory that is gradually replacing the dark one that haunted me for fifty years.

This piece was featured in Volume 3, Issue 2. Click here to explore other pieces from this issue.