A Voice Behind The Wall--A Look at Life Inside Willowbrook

When I was a little girl, I asked my mother about where she grew up. Willowbrook State School,” she said. That was the first time I had heard its name.

At the time my mother didn’t divulge a lot of details. I sensed the sadness that loomed over the mention of it. I wanted to know something about her biological parents and grandparents and how she became an orphan.

Built in the 1930's, the Willowbrook State School did not open its doors to the mentally retarded and developmentally disabled until the early 1950's.

For more than 40 years, Willowbrook attempted to serve the disabled community. However, with its gross overcrowding (beds for only 4,000 residents but housed well over 6,000) and lack of staff (ratios between aids and residents where often as high as 1:70 or more) and proper funding, it has since been established that institutional style care does not allow individuals to flourish.

As mentioned in an open letter to The Banner (published by students of The College of Staten Island, SI, NY), printed Jan. 30, 2006, by staff and students, it is essential that the truths about Willowbrook be spoken of and remembered. In their letter, they proposed that an adequate memorial be established on CSI's campus. In Professor's Goode's Feb. 06 interview with The Banner, he stated that many of the issues relevant to understanding Willowbrook are relevant to a range of disciplines represented on our campus and therefore "if it is forgotten, it is the best way to assure that Willowbrook will happen again."

Willowbrook was an amazing place, none like it before and hopefully, nothing like it ever again. Fortunately, voices from former residents can still be heard. Voices, like my mother’s, to tell us what it was like, what it did right and where it went wrong. They remind us that everybody has value and feelings, even if they can’t articulate words, read, spell their name or have no parents to love them.

The following is a creative non-fiction piece based on numerous interviews with my mother and my personal research.

The story takes place on a Sunday in 1964 in Building 21--30 years later, it became building 2S at the College of Staten Island. At this time, my mother was 11, and had been a resident the Willowbrook State School for almost 10 years.

This is where my mom grew up.

Get up,” the attendants shouted. “Get out of bed.” They switched on the lights awakening us from sleep, from dreams. Our sweet dreams—our only chance to experience a different life from what we knew at the Institution.

An attendant stood over my bed wearing a white dress, white hospital shoes, and a white cloth hat. “Get up,” she shouted. Her keys dangled.

When attendants told me to get up, I got up. Sometimes they’d blow a whistle in my face and flip my mattress if they thought I wasn’t moving fast enough.

I rubbed the crust from my eyes and got up. Most days I had nothing to look forward to, just another day, waking to the same routine. Not today. One day a week, one chance, one opportunity for something different to happen.

I waited in line with the rest of the girls from my ward all of us wearing long white nightgowns. We each had one pair of clothes and shoes in small cubbies in a different room.

I was eleven years old and owned nothing. I had no perfume, dolls, toys or self confidence. I didn’t have photos of my family, a favorite blanket or a stick of deodorant.

I was three when my parents left me at Willowbrook. My father later explained that he and my mother took me to a doctor because I wasn’t developing normally. I was two and could not walk or talk.

“There’s no hope for her,” the doctor said. “She is not going to progress any further. I’m sorry Mr. and Mrs. Bernard but your daughter will not amount to anything. It would be better to put her away.” Then my parents moved back to Oklahoma. My mother’s bad heart. I never saw my mother again.

It was Sunday, visiting day, the one day Willowbrook opened its doors to the public. Since there were no telephones for the residents to use, the only advance notice of a visitor would be a promise from the previous visit, or perhaps a letter by mail.

The last letter I received was from my Grandmother who lived in Oklahoma. An attendant read it to me because I didn’t know how to read. Her letter didn’t say anything about a visit but that didn’t mean she wasn’t coming—she never did announce her visits. She’d just send a letter, ask how I was doing, to let me know she hadn’t forgotten me. Along with the letter came a bag of M&M’s.

Candy was rare. Ms. Jones, the skinny morning attendant, would give candy to some of the girls. It wasn’t much, just some hard candy in shiny gold, green or red wrappers. We’d beg the other girls to share.

Lillian, the monitor at the front of the line, looked for our names on one of the cubbies.

“Name,” said Lillian.

“Joan Bernard,” I said.

Ms. Jones had made Lillian the clothes monitor. She was considered a smart kid because she didn’t rock, bang her head, or drool. She spoke coherently, wasn’t afraid to be pushy and had matching outfits. Ms. Jones gave her candy.

Lillian handed me my clothes.

“Next,” she said.

I went back to the dorm where 70 of us slept. I walked down the long row of metal framed beds, each touching the other, counting them, until I found mine. Number 27, near the window. I sat on the bed carefully scanning the room to make sure I wasn’t being watched as I slipped into my brown plaids pants.

The room brimmed with naked and half naked girls. Some fat with drooping breasts, pudgy knees and curly pubic hair. Blood stained maxi pads tossed on the floor. Others had no fat, hair, breasts or fear. I looked down. I was somewhere in the middle. I pulled off my nightgown and held it over my bare chest. I grabbed my brown blouse and slid my arm through it, then the other. Two buttons were missing. I folded my nightgown and examined the stiff fabric—the letters B-L-D-G 21, W-A-R-D B stamped across it. The nightgowns all looked alike, couldn’t tell one from the other and whether we got the same one back the following night, we’d never know.

Inside my sneaker was a pair of white socks. After I put them on, I folded each one down so they wouldn’t sag. I stuffed my foot into the black lace-ups that came above my ankles.

Keys clacked in the hallway. An attendant stood in the doorway. Her fat body and straight, pursed lips intimidated me. Her name was Ms. O’Reilly.

“Breakfast,” she said. “Line up.” Her voice echoed through the hall as she rounded up the other girls. I tied my laces and tucked them in my shoes. We walked to the mess hall, a large rectangular room, walls white and bare. Not a single picture or painting hung. We lined up.

I could sit anywhere among the rows of tables and backless benches. There was an empty space between Alice and Rita. Rita had kissed James Gambarelli a few times. Rita said she liked James because he didn’t have rotten teeth or bad breath and knew how to kiss. He did something with his tongue. Later, Rita got in a fight with Lillian because Lillian claimed James kissed her too. Rita slapped her. Lillian backed down. Since it was Sunday, no one was talking about boys.

As soon as each girl was seated, the two attendants handed out the food trays.

Sometimes we had toast for breakfast, which was the only thing that tasted good. Eggs, which we got occasionally, were watery. We never had pancakes or waffles.

“What’s this?” Alice asked. I swirled my spoon in the heap of brown mush, bringing it to my mouth. I closed my eyes as I felt the lumpy mush slide down. I’ve had worse.

The room was quiet. The attendants slowly paced. Rows of girls eating fast. Some with spoons, others with their hands. Talking would only slow us down.

“Quickly,” the attendant said. “Eat quickly girls.”

Jennifer Baker sat across from me. Her boney body rocking back and forth. Her hands twitched as she fed herself with her fingers.

“Gotta eat,” she said. “Gotta eat…Gotta eat…”

Ms. O’Reilley paced the walkways, examining our plates. She nodded as she passed by. Ms. O’Reilley stood over Jennifer and stopped.

“What’s this?” she said. “Why aren’t you eating?”

“Gotta eat…gotta eat,” Jennifer said. Her body swayed harder. I shoveled more mush in my mouth.

“Well, this won’t do,” Ms. O’Reilley said, stroking Jennifer’s head. “You’re going to have to learn to eat faster.” I looked at Rita, her body stiff as her eyes looked down at her plate.

Then Ms. O’Reilley pushed her fat hand against the back of Jennifer’s head into the plate of mush.

The room was silent. Mary Thomas, who sat next to Jennifer, wiped the mush from Jennifer’s face with her dress. Jennifer grabbed a handful of mush and stuffed it in her mouth.

“Gotta eat,” she said.

“Time’s up,” Ms. O’Reilley said.

Some hid leftover food in napkins, others in pockets. We piled the empty trays on our way to the day room, where Ms. Jones was reading the newspaper.

We didn’t have any toys, books, paper and pencils to draw. To draw a dog, my father’s house, my mother. Things I dreamt.

We did have a deck of cards. Some started to play. I was bored.

We didn’t get to see boys often. Once a month, we were escorted to building 3. Not everyone could go. The attendants picked who was allowed to attend. Only those who didn’t rock, shake, bang their heads on walls and could talk in sentences.

Music was played, rock and roll. Slow songs too. Willowbrook’s American Bandstand.

I looked forward to going. To wear a blue dress, to wear my hair loose, to listen to music, to be noticed. I didn’t have a boyfriend, although there were some boys that would ask me to dance. Steven Jacobs asked me once. He was considered boyfriend worthy because he combed his hair, buttoned his shirt straight, and didn’t smell like he peed on himself. I hoped I would see him again and that he would remember me and we’d dance again. I wanted to feel his warm body and touch his black hair, as we danced to Elvis Presley.

Since it was Sunday, no one talked about any of that. Everyone was preoccupied with whether or not they were going to get a visitor. Some girls had visitors every week—mothers, fathers, brothers, sisters, grandparents bringing clothes or candy.

“Hey Joanie. Think you’ll get a visitor today?” Rita’s twin sister, Hilda, asked. She had long hair, braided into two parts, and wore a brown pair of pants and a stained green blouse. Rita shuffled the cards.

“Joan?” Lillian said. “Joan?” I looked at Lillian, looking nasty. Her head cocked. “No one comes to visit her.”

“That’s not true.” I said. I wanted to smack her. “My grandmother came a couple of times. And so did my father.”

“Really?” asked Rita. “What was he like?”

“Handsome,” I said. He had come to New York just to see me.

“When he visited, he took me to the commissary and bought me candy,” I said. More candy than I could eat. And soda.”

Rita leaned in closer, her eyes following my lips. Lillian stood back with her hand on her hip.

“Joan’s making it up,” Lillian said. “She don’t have no family.”

“Who you think sends me that candy you beg for?”

An attendant I didn’t know entered the day room. She was young, maybe twenty-five. She walked over to Ms. Jones and handed her a piece of paper. Ms. Jones stood and walked to the center of the room. Everyone looked at Ms. Jones.

“Veronica Potter, Mary Thomas” Ms. Jones said. We looked at Lillian. Her face pale. “and Lillian Smith.” Lillian smiled at the three of us and walked away.

The girls went to the dormitory to change their clothes. The other attendant came to escort them to another building—one that didn’t reek with the smell of feces and urine.

The next time I looked out the window I saw Lillian, Veronica and Mary in pink dresses and shiny black shoes. Their sleeves had lace trim and bows tied around their waists. They looked so beautiful. They smiled. Their mothers had come to visit them.

My father visited me once. I was nine and I hoped he would take me home. I asked him about home, what it was like.

“Darling,” he said, “It’s pretty where I live. The sky is blue and there are trees around the house. Like here.” He took my hand and held it as we walked on the lawn.

“I have a nice house,” he said. “It’s yellow with a big porch.” I could see myself there. Waking up to the sound of my father’s voice. Eating cereal for breakfast, like a normal kid. It was where I belonged.

“Your Grandma and Grandpa don’t live far either,” Dad told me. “When you come live with me, you could visit them and play with their puppy.” I didn’t want him to stop talking.

The room got silent. Ms. Jones had stood up again. She was about to call another name. I knew it was my Dad. He was back. He was going to take me home. I saw him standing in the grass. He smiled at me.

“Jennifer Baker,” said Ms. Jones. “Jennifer Baker, you have visitors.” Everyone looked at Jennifer.

“Me?” she said, hand on her chest. Her foot, tangled in the chair as she stood up and she fell.

I went to the window and sat in one of the bulky green chairs. I rested my head on the sill. The wind blew as red, orange and yellow leaves fell to the ground and I wanted to touch them and smell the dandelions and put them in my hair.

“I’ll be back for you darling,” my father said. “You just wait,” he said. He stroked my hair and kissed me goodbye.

I sat back in my chair and looked at the other patients playing with their mothers and fathers on the grass, eating candy, drinking soda.

“Joan…Joanie,” said Hilda.

“Yeah,” I said.

“Wanna play cards?”

This article was previously published in the April 10, 2006 issue of The Banner. This work is property of Vanessa Leigh DeBello and is protected by copyright law. No material within this publication may be reprinted in whole or in part, an any form, without the permission of the author. Please contact VL DeBello at ava6205@yahoo.com.