The Ones We Sent Away

Photographs by Yoshiyuki Matsumura

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This story starts, of all things, with a viral tweet. It’s the summer of 2021. My husband wanders into the kitchen and asks whether I’ve seen the post from the English theater director that has been whipping around Twitter, the one featuring a photograph of his nonverbal son. I have not. I head up the stairs to my computer. “How will I find it?” I shout.

“You’ll find it,” he tells me.

I do, within a matter of seconds: a picture of Joey Unwin, smiling gently for the camera, his bare calves and sandaled toes a few steps from an inlet by the sea. Perhaps you, too, have seen this photo? His father, Stephen, surely did not intend it to become the sensation it did—he wasn’t being political, wasn’t playing to the groundlings. “Joey is 25 today,” he wrote. “He’s never said a word in his life, but has taught me so much more than I’ve ever taught him.”

That this earnest, heartfelt tweet has been liked some 80,000 times and retweeted more than 2,600 is already striking. But even more so is the cascade of replies: scores of photographs from parents of non- and minimally verbal children from all over the world. Some of the kids are young and some are old; some hold pets and some sit on swings; some grin broadly and some affect a more serious, thoughtful air. One is proudly holding a tray of Yorkshire pudding he’s baked. Another is spooning his mom on a picnic blanket.

I spend nearly an hour, just scrolling. I am only partway through when I realize my husband hasn’t steered me toward this outpouring simply because it’s an atypical Twitter moment, suffused with the sincere and the personal. It’s because he recognizes that to me, the tweet and downrush of replies are personal.

He knows that I have an aunt whom no one speaks about and who herself barely speaks. She is, at the time of this tweet, 70 years old and living in a group home in upstate New York. I have met her just once. Before this very moment, in fact, I have forgotten she exists at all.

It is extraordinary what we hide from ourselves—and even more extraordinary that we once hid her, my mother’s sister, and so many like her from everyone. Here are all these pictures of nonverbal children, so pulsingly alive—their parents describing their pleasures, their passions, their strengths and styles and tastes—while I know nothing, absolutely nothing, of my aunt’s life at all. She is a thinning shadow, an aging ghost.

When I first discovered that my mother had a younger sister, I reacted as if I’d been told about the existence of a new planet. This fact at once astonished me and made an eerie kind of sense, suddenly explaining the gravitational force that had invisibly arranged my family’s movements and behaviors for years. Now I understood why my grandfather spent so many hours in retirement as a volunteer at the Westchester Association for Retarded Citizens. Now I understood my grandmother’s annual trips to the local department store to buy Christmas presents, although we were Jewish. (At the time, my aunt lived in a group home where the residents were taken to church every Sunday.)

I now even understood, perhaps, the flickers of melancholy I would see in my grandmother, an otherwise buoyant and intrepid personality, charming and sly and full of wit.

And my mom: Where do you start with my mom? For almost two years, she had a sister. Then, at the age of 6 and a half, she watched as her only sibling, almost five years younger, was spirited away. It would be 40 years before she saw her again.

Strange how seldom we think about who our parents were as people before we made their acquaintance—all the dynamics and influences that shaped them, the defining traumas and triumphs of their early lives. Yet how are we to know them, really, if we don’t? And show them compassion and understanding as they age?

I was 12 when I learned. My mother and I were sitting at the kitchen table when I wondered aloud what I’d do if I ever had a disabled child. This provided her with an opening.

Her name is Adele.

She had red hair, I was told. Weird: Who in our family had red hair? (Actually, my great-grandmother, but I knew her only as a white-haired battle-ax dedicated in equal measure to her soap operas and cigarettes.) She is profoundly retarded, my mother explained. There had been no language revolution back then. This was the proper descriptor, found in textbooks and doctors’ charts. My mother elaborated that the bones in Adele’s head had knitted together far too early when she was a baby. So, a smaller brain. It was only when I met her 16 years later that I understood the physical implications of this: a markedly smaller head.

It was staggering to meet someone who looked just like my mother, but with red hair and a much smaller head.

My grandmother told my mother that she instantly knew something was different when Adele was born. Her cry wasn’t like other babies’. She was inconsolable, had to be carried everywhere. Her family doctor said nonsense, Adele was fine. For an entire year, he maintained that she was fine, even though, at the age of 1, she couldn’t hold a bottle and didn’t respond to the stimuli that other toddlers do. I can’t imagine what this casual brush-off must have done to my grandmother, who knew, in some back cavern of her heart, that her daughter was not the same as other children. But it was 1952, the summer that Adele turned 1. What male doctor took a working-class woman without a college education seriously in 1952?

Only when my mother and her family went to the Catskills that same summer did a doctor finally offer a very different diagnosis. My grandmother had gone to see this local fellow not because Adele was sick, but because she was; Adele had merely come along. But whatever ailed my grandmother didn’t capture this man’s attention. Her daughter did. He took one look at her and demanded to know whether my aunt was getting the care she required.

What did he mean?

“That child is a microcephalic idiot.”

My grandmother told this story to my mother, word for word, more than four decades later.

In March of 1953, my grandparents took Adele, all of 21 months, to Willowbrook State School. It would be many years before I learned exactly what that name meant, years before I learned what kind of gothic mansion of horrors it was. And my mother, who didn’t know how to explain what on earth had happened, began telling people that she was an only child.

It is the fall of 2021. My aunt lives in a uniquely unlovely part of upstate New York, a dreary grayscape of strip malls and Pizza Huts and liquor stores. But her group home is a snuggery of overstuffed furniture, flowers, family photos; the outside is framed by an actual white picket fence. It is precisely the kind of home you would hope that your aunt, abandoned to an institution through a cruel accident of timing and gravely misplaced ideas, would find herself in as she ages. When my mother and I arrive to see her, she is waiting for us at the door.

The drive to this house was 90 minutes from where my folks live in northern Westchester.