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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.
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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. Yet the car ride yielded just 29 minutes and 15 seconds of recorded conversation with my mother. This could partly be explained by the unfamiliar directions in her GPS, but still: Here she was, visiting the sister she hadn’t seen since 1998—and then only twice before that, in 1993, shortly after her father died—and she had almost nothing to say about where we were headed or what the weather was like inside her head. She seemed far more interested in telling me about the necklaces she was making and selling to support Hadassah, one of her favorite charities. Whether this was out of anxiety or enthusiasm, I didn’t know.
“Are you feeling nervous about seeing her?” I finally asked.
“No.”
“Really? Why not? I’m nervous.”
“Why are you nervous?”
“Why are you not nervous?”
“Because I made peace with my separation from her many, many years ago.”
My grandparents, for their part, had visited my aunt almost every week, at least when she was young. Even after my grandmother moved to Florida, she made an effort to visit once a year. When I was in my late teens or early 20s, I remember my mother telling me that Adele never knew or understood who my grandmother was, not ever. This fact stuck with me—and hit me especially hard when I became a mother myself. As we were humming along the Taconic State Parkway, I reconfirmed: Adele didn’t recognize her own mother?
“No,” she said. “She didn’t know her. She didn’t understand the concept of a mother.”
But when my mother last saw her sister, in 1998, it wasn’t my grandmother who accompanied her. It was me. The whole trip had been at my instigation, just like this one. I’d mentioned that I was interested in meeting my aunt, and my mother had stunned me then, just as she’d stunned me now, by saying, “Why don’t we go together?”
And what do I remember of that singular day? How uncharacteristically animated and affectionate my mother was when she saw Adele, for one thing. You could almost discern the outlines of the little girl she’d been, the one who would circle Adele’s crib and play a made-up game she called “Here, Baby.” Also, how petite my aunt was—4 foot 8, dumpling-shaped—and how slack the musculature was around her jaw, which may have had something to do with the fact that my aunt had no teeth. She had supposedly taken a medication that had made them decay, though there’s really no way to know.
But what stayed with me most from that day—what I thought about for years afterward—were the needlepoint canvases marching along the walls in Adele’s bedroom. My mother and I both gasped when we saw them. My mother, too, was an avid needlepointer in those years, undertaking almost comically ambitious projects—the Chagall windows, the Unicorn Tapestries. Adele’s handiwork was simpler, cruder, but there it was, betokening the same passion, the same obsession.
One other thing: My mother and I discovered that day that Adele could carry a tune—and when she sang, she suddenly had hundreds of words at her disposal, not just yes and no, the only two words we heard her speak. Again, we were amazed. For years, my mother was a pianist and studied opera; her technical skills were impeccable, her sight-reading was impeccable, her ear was impeccable. She could pick up the telephone and tell you that the dial tone was a major third.
My mother couldn’t get over it—the needlepoints, the singing.
I felt like I was staring at some kind of photonegative of a twin study.
So here we are, 23 years later, and Adele is greeting us at the door. She is wearing a bright-red sweater. There is my mother at the door. She, too, is wearing a bright-red sweater. Adele is wearing a long, chunky beaded necklace she has recently made at her day program. And my mother, like her sister, is wearing a long, chunky beaded necklace she has recently made—not at a day program, obviously, but for Hadassah. It turns out that Adele loves making necklaces and has whole drawers of them. As, lately, does my mother.
I have a picture of the two of them standing side by side that day. I cannot stop looking at it.
Carmen Ayala, Adele’s extraordinary 79-year-old caretaker, has instructed Adele to say “Hello, Rona, I love you” to my mother, a gesture that’s both sweet and awkward—Adele doesn’t know my mother by sight, much less by name. Still, it catches my mother by surprise, not least because it suggests that her sister’s vocabulary has expanded considerably since we last saw her, when she was living in a different group home. They embrace and take seats on the couch in the living room. We try, for a time, to ask Adele basic questions about her day, without much success, though when we ask if she knows any Christmas carols—the holiday is coming up—she sings “Santa Claus Is Coming to Town” for us, and my mother replies in kind with “Silent Night.” Then Adele zones out, staring at her hands. She can spend hours staring at her hands.
My mother and I start to ask Carmen and her youngest child, Evelyn—she lives nearby and knows well all three residents in her parents’ home—the customary questions: How did Carmen get into this line of work? What is Adele’s routine? How did Adele handle the transition to Carmen’s house 22 years ago, after her previous caretaker retired? And although I’m interested in the answers, I find myself growing restless, thoughts of that Twitter thread plucking at my consciousness. I finally blurt out: What is my aunt like?
Evelyn replies first. “Very meticulous,” she says. “She needs things a certain way, and she will correct you the minute you do something wrong.”
I stare at my mother, who says nothing. I turn back to Evelyn and Carmen and prompt them. Such as?
Her clothes have to match, they say, down to the underwear. She keeps her bed pin-neat.
“She knows where everything is at,” Evelyn continues. “If we”—meaning her or any of her family members—“come here and we are washing a dish and we put it in the wrong place, she will tell us, Nope.”
I stare at my mother expectantly. Still nothing.
“Like, That doesn’t go there,” Evelyn explains.
At this point, my mother pipes up. “I don’t let anyone else load the dishwasher.”
Finally.
“That’s Adele,” Evelyn says.
Arthur Miller’s youngest son, Daniel, was institutionalized. He was born with Down syndrome in 1966 and sent to Southbury Training School, in Connecticut, when he was about 4 years old. Miller never once mentioned him in his memoir Timebends, and Miller’s New York Times obituary said not one word about him, naming three children, rather than four.
Erik Erikson, the storied developmental psychologist, also put his son with Down syndrome in an institution. He and his wife, Joan, told their other three children that their brother died shortly after he was born in 1944. They eventually told all three the truth, but not at the same time. Their oldest son learned first. That must have been quite a secret to keep.
Pearl S. Buck, the Nobel Prize winner for literature and author of The Good Earth, institutionalized her 9-year-old daughter, Carol, likely in 1929. But Buck was different: She regularly visited her daughter, and 21 years later had the courage to write about her experience in The Child Who Never Grew.
It is remarkable how many Americans have relations who were, at some point during the past century, sequestered from public view. They were warehoused, disappeared, roughly shorn from the family tree. “Delineated” is how the Georgetown disability-studies scholar Jennifer Natalya Fink puts it, meaning denied their proper place in their ancestral lineage.
With time, we would learn the terrible toll that institutionalization took on those individuals. But they weren’t the only ones who paid a price, Fink argues. So did their parents, their siblings, future generations. In hiding our disabled relations, she writes in her book All Our Families, we as a culture came to view disability “as an individual trauma to a singular family, rather than a common, collective, and normal experience of all families.”
This is precisely what happened to Fink. When her daughter was diagnosed with autism at 2 and a half, Fink was devastated, despite her liberal politics and enlightened attitude toward neurodiversity. Then she realized that the only disabled person she knew about in her family was a relative who’d been institutionalized in the early ’70s. This sent her on a journey to learn more about him—and in so doing, she discovered yet another disabled family member, in Scotland. Had she known far more about them—had they been an integral part of family discussions and photo albums (and, in the case of the American relative, family events)—she would have had a far richer, more expansive understanding of her ancestry; her own child’s disability would have seemed like “part of the warp and woof of our lineage,” as she writes, rather than an exception.
It occurred to me that this may have been one of my unconscious motives in trying to get to know Adele at such a late stage of my own life, in addition to simple curiosity about a lost relative. It would be a minor act of restitution, of relineation. Without any malevolent intent, we’d all colluded in one woman’s erasure. And our entire family had been the poorer for it.
Mass institutionalization wasn’t always the norm in the United States. During the colonial era, people with developmental and intellectual disabilities were integrated into most communities; in the early 1800s, with the advent of asylums and special schools, American educators hoped some could be cured and quickly returned to mainstream society.
But by the late 19th century, it became clear that intellectual disabilities couldn’t be vanquished simply by sending people to the right schools or asylums, and once the eugenics movement captured the public’s imagination, the fate of the country’s intellectually and developmentally disabled was sealed. “Undesirables” and “defectives” weren’t just institutionalized; they became the involuntary subjects of medical experiments, waking from mysterious surgeries to discover that they could no longer have children.
Cue the line from Buck v. Bell, the infamous 1927 Supreme Court case that upheld a Virginia statute permitting the sterilization of the so-called intellectually unfit: “Three generations of imbeciles are enough.”
Then the postwar era came along, with its apron-clad mothers and gray-flanneled fathers and all-around emphasis on a certain species of Americanness, a certain norm. “I’m speaking in huge generalities here,” says Kim E. Nielsen, the author of A Disability History of the United States, “but I think that push for social conformity exacerbated the incredible shame folks had about family members with intellectual and physical disabilities.” Institutionalizing such family members often became the most attractive—or viable—option. The stigma associated with having a different sort of child was too great; too often, schools wouldn’t have them, state-subsidized therapies weren’t available to them, and churches wouldn’t come to their aid. “There were no support structures at all,” Nielsen told me. “It was almost the opposite. There were anti-support structures.”
My aunt was born in that postwar period. But I don’t think my grandparents were capitulating to social pressure when they institutionalized Adele. They were simply listening to the advice of their doctors, authoritative men with white coats and granite faces who told them there was no point in keeping their daughter at home. According to my mother, my grandparents ferried Adele from one specialist to another, each declaring that she would never walk, never talk, never outgrow her diapers.
Which raised a question, on further reflection: Did my aunt’s condition have a name? As we were driving along, my mother told me she didn’t know; Adele had never had genetic testing.
Really? I asked. Even now? In the 2020s?
Really.
My grandparents are no longer with us. I know little of what they were told or how they felt when they were advised to send their second child away. But I imagine the script sounded similar to what a physician told Pearl S. Buck when she took Carol to the Mayo Clinic. “This child will be a burden on you all your life,” he said, according to Buck’s memoir. “Do not let her absorb you. Find a place where she can be happy and leave her there and live your own life.” She did as she was told. But it violated every ounce of her maternal intuition. “Perhaps the best way to put it,” she wrote, “is that I felt as though I were bleeding inwardly and desperately.”
“The parents who institutionalized their children—they too are survivors of institutionalization and victims of it,” Fink told me. “They were broken by this. It was not presented as a choice, for the most part. And even when it was, the medical establishment made it seem like institutionalization was the best choice.”
That applied to my grandmother, a tower of resilience, a woman who survived her father’s suicide, a brutal knife attack by a madman in a public restroom, and breast cancer at a relatively young age. She, like Buck, bled inwardly and desperately, in the most literal sense, developing an ulcer when my mom was 11 or 12. “Before Grandma died, she started talking about Adele, and for the first time that I can remember, she admitted that she felt terrible institutionalizing her,” my mother told me as we drove. “When I reminded her that if she had not institutionalized her, nobody in the family would’ve had a normal life, she said, ‘Yes, but she would’ve been with people who loved her.’ ”
One of the beneficiaries of that so-called normal life was, ostensibly, my mother. In his magisterial Far From the Tree, the writer Andrew Solomon notes that the most commonly cited rationale for institutionalization in those years was that neurotypical siblings would suffer—from shame, from attention starvation—if their disabled siblings were kept at home.
But it’s more complicated than that, isn’t it? My mother has never in her life uttered a cross word about her parents’ decision, and she’s hardly the sort to play the victim—she may have been trained as an opera singer, but she’s the least divalike person I know. Yet when I asked her what it was like when Adele left the house, she reflexively confirmed Fink’s hypothesis: She suffered. “It was like I lost an arm or a leg,” she said.
In his second memoir, Twin, the composer and pianist Allen Shawn writes about the trauma of losing his twin sister, Mary, to an institution when they were 8 years old. He describes her absence as “an unmourned death,” which closely matches my mother’s experience; he writes, too, that when she was sent away, it felt to him like a form of punishment, “an expulsion, an exile,” which my mother has also recounted in melancholy detail.
But what most captured my attention was Shawn’s analysis of how his sister affected his personality. “From an early age,” he writes, “I intuited that there were tensions surrounding Mary and instinctively took it upon myself to continue to be the easier child and avoid worrying my parents.”
That was my mother: the peerless good girl. High-achieving, rule-abiding, perfection-seeking. She skipped a grade. Until junior high, she chose practicing piano over playing with friends. In high school, she sang with the all-city chorus at Carnegie Hall.
Did she ever rebel? I asked her.
“Nah,” she said. “I was a goody-goody.”
To this day, my mother is the good girl. Buttoned-up, always reasonable, always in control. When hotter tempers flare around her, she defaults to a cool 66 degrees.
My mother was thrilled when her parents brought her newborn sister home. She remembers Adele scooching to different corners of her playpen to follow her as she ran in circles around it. She remembers sitting on the kitchen counter and watching my grandmother prepare bottles. She remembers my grandmother asking her to go on tiptoe into my grandparents’ room to see if Adele was asleep in her crib or still fussing. When my grandmother and grandfather began their frantic circuit of New York City’s specialists, wondering what could be done to help Adele, my mother had no clue that anything was the matter. Why would she? She was 6 years old. She’d always wanted a sibling and now she’d been gifted one. Adele was marvelous. Adele was perfect. Adele was her sister.
When my grandparents left to take Adele to Willowbrook in March of 1953, they had no idea what to tell my mother, settling eventually on the story that they were taking her sister to “walking school.” My mom thought little of it. But for weeks, months, years, she kept expecting Adele to return. When is she coming back? she would regularly ask. We don’t know, my grandparents would reply.
At 8, my mother one day had a sudden meltdown—became unstrung, hysterical—and demanded much more loudly to know when Adele would be returning, pointing out that it was taking her an awfully long time to learn how to walk. That was the first time she saw my grandmother cry.
I don’t know, she still answered.
That same year, my great-grandmother, recently widowed, moved in with my grandparents. More specifically, she moved into my mother’s room, into the twin bed that Adele was supposed to occupy. My mother was furious about having to move her things, furious that she was losing her privacy, furious that her grandmother was moving into Adele’s bed. (Now she modified the question she regularly asked her parents: Where will Adele sleep when she comes home? And they would always reply: We’ll figure it out when the time comes.) Adele never did come home, and my grandparents would never try to have another child to fill that bed. My great-grandmother was there to stay.
My great-grandmother: Lord. She meant well, I suppose. But she had only a grade-school education and all the subtlety of a flyswatter. When my mother was 13, my great-grandmother told her that she had to be good enough for two children, smart enough for two children. “She kept emphasizing that my parents had lost a child,” my mother said. The pressure was awful.
By 13, of course, my mother had already figured out that something was different about her sister—and that Adele was never coming home. She’d heard the neighborhood kids whisper. One cruelly declared she’d heard Adele was in reform school. Consciously or unconsciously, my mother began handling the situation in her own way, volunteering in classrooms for kids with intellectual disabilities. Two liked her so much that she started tutoring them privately.
Yet throughout my mother’s childhood, my grandparents never once invited her to come with them to visit Adele. At first she was told no children were allowed; by the time her parents did ask her to join them, my mother, at that point an adult with children of her own, said no. She felt too raw, too tender about it. She didn’t want to unloose a current of ancient hurts. My grandparents never raised it again.
I asked if she ever sat around and just thought about Adele. “Oh, sure,” she told me. “I wonder what she would’ve been like if she weren’t disabled. I wonder what kind of relationship we would’ve had. I wonder whether I would’ve had nieces and nephews. Whether she would’ve had a husband, whether she would’ve had a good marriage, whether we would’ve been close, whether we would’ve lived near each other …”
And what ran through her mind, I asked, when she set eyes on Adele for the first time in 40 years, back in 1993? “I got deprived of having a real sibling,” she said.
For weeks afterward, I thought long and hard about this particular regret. Because my aunt was a real sibling. But no one of my mother’s generation was told to think this way. The disabled were dramatically underestimated and therefore criminally undercultivated: hidden in institutions, treated interchangeably, decanted of all humanity—spectral figures at best, relegated to the margins of society and memory. Even their closest family members were trained to forget them. After my mother came home from that visit, she scribbled six pages of impressions titled “I Have a Sister.” As if she were finally allowing it to register. To acknowledge this clandestine part of herself.
It is painful, almost too painful, to think about how differently my mother might have felt—how different her life and my aunt’s might have been—if they had been born today.
It’s June of 2022. I’ve just asked Adele how many pictures are sitting in front of me. My mother is skeptical. I ask again. “How many pictures? One …”
“One,” she repeats.
“Two …” I say.
“Two, three,” she finishes.
I look triumphantly at my mother.
My mother is now somewhere between skeptical and delighted. She tries herself. “How many fingers?” she asks, holding up her hand.
“Five.”
There are five.
“She understands,” I tell my mother.
“Well, either that or she memorized it.”
I show Adele two fingers and ask how many.
“Two.”
There’s a reason my mother is surprised. When we visited Adele in 1998, she barely spoke at all, much less showed that she had a notional sense of quantity. (She will today show us that she can count to 12 before she starts skipping around.) She wasn’t agitated back then when we saw her, not exactly. But she wasn’t relaxed. A transfixing report about Adele, sent to my mother not that long ago, suggests that one of the reasons she may be more alert now—and possesses a larger vocabulary—is because she’s on a better, less sedating regimen of medications.
But there’s another reason, I think, for my mother’s skepticism. Her whole life, she’d been given to understand that Adele’s condition was fixed—that her sister was consigned to a life without any deepening or growth. As she put it to me during that first car ride: “There would be no reason for her to get any more cognizant or any smarter.” That’s how everyone thought about disability back in my mother’s day. It’s my own generation—and the ones following—that came to see the brain as a miracle of plasticity, teachable and retrainable right into old age.
Yet Adele exceeded the expectations of all the specialists who gave dire predictions to my grandparents. She did learn to talk. She did become toilet-trained. Not only can she walk, but she dances a mean salsa, which she shows us now—and where she gets her sense of rhythm, I don’t know, but it’s great. (I personally dance like Elaine on Seinfeld.) Carmen and her husband, Juan, both from Puerto Rico, often play Latin music, and Adele jumps right in, with one hand on her belly and the other high and outward-facing, as if on the shoulder of an imaginary partner, all while shaking her hips and waggling her rear. Juan, whom she calls “Daddy,” often joins her.
I ask Carmen (whom she calls “Mommy”) whether Adele knows any Spanish, given that she and Juan speak it around the house. She says yes.
“¡Mamá! ” Carmen calls to Adele.
“What?”
“¿Tú quieres a papi? ” Do you love Daddy?
“What?”
“¿Tú quieres mucho a papi? ” Do you love Daddy a lot?
Adele nods emphatically.
“How much?” Carmen asks, switching to English. “How much you love Daddy? Let me see how much.”
“Four dollars.”
“Four dollars!” Carmen exclaims. “Oh my God.” Juan cracks up.
This kind of confusion is also typical of what we see in Adele throughout this, our second visit to the Ayala home. The report sent to my mother, which contains assessments of the institutions she’s inhabited and the day programs she’s attended throughout her life, continually notes that she has trouble grasping concepts—that she “can name various objects, but become[s] confused when long sentences are used.” It adds that she “often mumbles and is difficult to understand. If she does not understand what is being said to her, she simply says, ‘Yeah.’ ”
And we do have a hard time understanding her, and she does say “Yeah” to a number of our basic questions about her day, which can make getting to know her frustrating. But not when she becomes animated about things she likes. Summer is approaching, for instance, which means Adele will shortly be going to camp. She adores camp. I ask what she does there. “A game! And color.” Coloring, she means.
Other things Adele loves: Care Bears, stuffed animals, blingy baseball hats, shopping at Walmart, wearing perfume, preparing Juan’s nightclothes, tucking in her roommate each night.
Camp is the only time Carmen truly gets a break from caring for Adele and her two housemates—“I don’t like to leave them with nobody,” she explains to me—and even when she does go out, she generally doesn’t travel very far.
I stare at Carmen, now 80, and realize I already live in fear of the moment when she won’t be able to look after my aunt anymore. She has pulmonary hypertension and requires oxygen every night, and sometimes during the day. Yet she still cares for her three charges, whose pictures populate her photo albums right alongside those of her biological kids and grandkids. (My favorite: Adele standing next to a life-size Angry Bird.) Every day, she helps bathe them; makes their beds; shops for them; manages their various doctor appointments; takes them on outings; and, with Juan, prepares their breakfast, lunch, and dinner. Five out of seven days, this means rising at 5 a.m. In my aunt’s specific case, it means doing her hair each morning just the way she likes, putting in her earrings, and pureeing her food—Adele refuses to wear her dentures.
“When I was raising my kids, you know—it’s something that you miss,” Carmen explains.
Adele’s transition to the Ayala home wasn’t easy. Change is hard for her; she likes order. And when she arrived at Carmen’s house 23 years ago, she had scabies, which—in addition to raising questions about how well cared for she’d been in her previous home—meant that Carmen had to throw out everything she owned: her beloved stuffed animals, her clothes, her sheets. The adjustment became that much more traumatic; now my aunt truly had nothing. She threw tantrums. She once called Carmen “the B-word” (as Carmen puts it). Carmen phoned the home liaison. “And she says, ‘Carmen, easy. She’s a very good lady.’ ”
I ask how she earned my aunt’s trust. “I used to sit down with her and, you know, I used to talk to her a lot,” she says. “Talking, talking, talking to her. I’m telling her, ‘Come here, help me with this’ or ‘Help me with that.’ ”
Now, Carmen says, Adele can recite all of her grandchildren’s names and knows them by sight. She demonstrates, asking Adele to name everyone in her son Edgar’s family. “J.J., Lucas, Janet, Jessica …” Adele says. Neither of her housemates can do this. “It doesn’t matter how long she hasn’t seen them,” Evelyn, Carmen’s daughter, later tells me. “She knows who they are. She has a memory that she’ll meet somebody and she’ll remember their name. That’s her gift.”
Her gift? I am incredulous when I hear this. I keep thinking about what I’ve been told my whole adult life: that Adele never even recognized her own mother, at least as far as my mom understood it. Was this some kind of misapprehension? Maybe Adele had known my grandmother? Or maybe she hadn’t, but only because she’d been so aggressively narcotized?
As Carmen is talking with us, Adele gently rests her head on my mother’s shoulder and keeps it there. My mother, ordinarily a coil of discipline and control (always correct, always the good girl), looks so blissed out, so happy. When our visit is over, she tells me that this was her favorite part, Adele burrowing into her—and that she’s already thinking about when she can next see her again.
November 22, 1977: On medication due to head banging behaviors … She stares off into space, fixates on her hands, or hair and has the compulsion to smell people’s hair (Wassaic State School, Amenia, New York).
This is from the report sent to my mother, the one containing assessments of Adele from the different institutions she’s lived in and day programs she’s been a part of. I had a closer look at it maybe a week or two after our second visit.
February 11, 1986: (Psychotropic) Meds originally prescribed for screaming, hitting others, hitting self, extreme irritability (case-worker report from a day-treatment program, Ulster County, New York). It is noted that she is taking 150 milligrams daily of Mellaril, a first-generation antipsychotic.
October 1991: Outbursts look like psychosis … yell[s] out statements such as “Adele. Stop that!” or … “Leave me alone!” (summary of a report from a day program, Kingston, New York).
Late 2006: Psychiatry providers now recognize that there is psychosis present and Zyprexa is effectively treating this (summary of various evaluations).
The report is eight pages long. But you get the idea. The dear woman who nestled into my mother’s shoulder, waved at us until our car pulled out of sight, and recently wandered into Carmen’s room when she intuited that something was the matter (Carmen was unwell) also had an unremitting history, until not that long ago, of violent outbursts, self-harm, and psychosis.
Far be it from me to quarrel with those who evaluated her, including the esteemed men in white coats. But “psychosis” seemed, when I read this report, like an incomplete story, carrying with it the stench of laziness and One Flew Over the Cuckoo’s Nest reductivism—This person is difficult; let’s sedate her.
I could have been totally wrong. Based on this report, Adele certainly seemed, at times, to pose a danger to herself and others. But I found it curious that nowhere in this document did it say anything about a behavior that even my untrained eye detected immediately during our visits: My aunt does tons of harmless stimming, the repetitive motions frequently associated with autism. (She is especially fond of wiggling her fingers in front of her eyes.) In all the years of observational data about her—at least from what I saw here—there wasn’t a word about this, or the word autism itself. And autistic individuals, when frustrated or confronted with change or responding to excessive stimuli, can sometimes behave aggressively—or in ways that could be misread as psychotic.
And so, for that matter, can traumatized people.
It is December of 2022. A visiting nurse, Emane, whom Adele calls Batman, is swabbing Adele’s cheek. My aunt is being sweet and obedient; Emane, tender yet efficient. The sample will go to a lab in Marshfield, Wisconsin, that will sequence Adele’s genes.
Wendy Chung, the Boston Children’s Hospital geneticist with whom my mother and I are working, has warned us that there is only a one-in-three chance that Adele’s genetic test will come back with a condition or syndrome that has an actual name. But Chung has told me, as have a number of other experts, that there’s no other way to know for sure what Adele has. Dozens of things can cause microcephaly.
“But if you can find out exactly what she has,” Chung says, “then you can find a family—”
“—with a child who has it now,” I say.
Exactly, she says. And then I can compare how children with this syndrome fare today, versus how they fared in the 1950s.
My mother, Adele’s medical proxy, had to sign the forms to do this genetic test. My aunt was incapable of giving her own consent. And it occurs to me, as I sit here watching her so docilely allow Emane to rake her cheek with a Q-tip, that Adele has never been able to give her consent for anything, good or bad, her whole life. Not for the medications she has taken, which may or may not have helped her; not for mammograms, which, given our family history, are indisputably a good idea. Not for any of the things that were done to her while she was institutionalized until the age of 28; not for a trip to the mall to get ice cream.
She cannot consent to this profile, I suddenly realize with some alarm.
I spend quite a few weeks fretting about this. Only after speaking with Rosemarie Garland-Thomson, a renowned bioethicist and disability scholar, do I understand exactly why this is so. The last thing I want to do is hurt Adele. So not writing about her would be consistent with this wish, in keeping with the benevolent spirit of the Hippocratic oath: I’d be doing no harm. Whereas I am trying to do good, a much riskier proposition. “The problem with trying to do good,” she tells me, “is you don’t know how it’s going to come out.”
“I don’t have a legal right to know anything about my relatives who were disappeared,” says Jennifer Natalya Fink, who faced a similar ethical predicament when she wrote All Our Families. “But I have a moral right. And it’s a moral wrong, what was done to them. For us not to keep perpetuating those wrongs, we have to integrate knowledge of our disabled forebears.”
There remains a school of thought that privileges the privacy of people with intellectual disabilities above all else, particularly when it comes to something as delicate as divulging their medical history. And this argument may be right. I don’t know. But I ultimately decide, in the weeks after that swab, that integrating Adele means saying her name, and that understanding Adele—and her needs, and her potential, and whether she’s been treated with the appropriate care and dignity her whole life—means knowing and naming whatever syndrome she has. To refrain from doing so would simply mean more erasure. Worse: It would imply that her condition is shameful, and there’s been more than enough of that in my family.
To hell with shame.
I don’t know why this is, but I keep coming back to my mother’s deep desire for order. I had always assumed, I suppose, that it was a response to early trauma—a natural reaction to helplessly watching her sister get shipped away. But then I spent time with Adele and discovered that she shared the same trait, as if it were inscribed in the family genes.
I mention this one day to Evelyn, Carmen’s daughter, on the phone. She mulls it over. “But maybe it comes from the same place in Adele,” she says. “She was taken from her mother. She’s been controlled her whole life. You don’t know what she’s gone through, where she’s been.”
I sit in chastened silence for several seconds. She is absolutely right. Of course it could come from the same place. Adele no doubt also experienced savage trauma in her life. It was just less legible, because she had no clear way to convey it. For all I know, my aunt is a matryoshka doll of buried pain.
In January of 1972, Michael Wilkins met in a Staten Island diner with a young television journalist named Geraldo Rivera and discreetly handed him a key. It opened the doors to Building No. 6 at Willowbrook State School, from which Wilkins, a doctor, had recently been fired. He’d been encouraging the parents of the children in that ward—and others, from the sound of it—to organize for better living conditions. The administration didn’t like that very much.
In February of that year, Rivera’s half-hour exposé, “Willowbrook: The Last Great Disgrace,” aired on WABC-TV. It was sickening. To this day, it remains one of the most powerful testaments to the horrors and moral degeneracy of institutionalization. You can easily find it on YouTube.
Rivera was by no means the first to visit Willowbrook. Robert F. Kennedy had toured the place in 1965 and called it “a snake pit.” But because Rivera suddenly had access to one of the ghastliest dorms on campus, he and his camera crew could storm the premises unannounced. What he found—and what his viewers saw—was the kind of suffering one associates with early-Renaissance depictions of hell. The room was dark and bare. The children were naked, wailing, and rocking on the floor. Some were caked in their own feces. “How can I tell you about the way it smelled?” Rivera asked. “It smelled of filth, it smelled of disease, and it smelled of death.” He went on to interview Wilkins, who made it clear that Willowbrook wasn’t a “school” at all. “Their life is just hours and hours of endless nothing to do,” he said of the patients, adding that 100 percent of them contracted hepatitis within the first six months of moving in.
Actually, doctors were deliberately giving some of those children hepatitis. Even into the 1970s, the intellectually disabled were the subjects of government-funded medical experiments.
therapy, at Willowbrook State School, Staten Island, New York, January 1972 (Bill Pierce / Life Picture Collection / Shutterstock)
“Trauma is severe,” Wilkins told Rivera, “because these patients are left together on a ward—70 retarded people, basically unattended, fighting for a small scrap of paper on the floor to play with, fighting for the attention of the attendants.”
“Can the children be trained?” Rivera asked at one point.
“Yes,” the doctor said. “Every child can be trained. There’s no effort. We don’t know what these kids are capable of doing.”
This was where my aunt spent the formative period of her youth, from the time she was a toddler until she was 12 or 13 years old. Though she left eight years before Rivera and his crew arrived, it’s hard to imagine that the conditions were any better in her day. As Kim E. Nielsen writes in A Disability History of the United States, World War II was devastating for these institutions, which were hardly exemplary to begin with. The young men who worked there were shipped off to war, and most of the other employees found better-paying jobs and superior conditions in defense plants. These state facilities remained dreadfully poor-paying and understaffed from then on, their budgets forever in governors’ crosshairs.
“It was horrible,” Diana McCourt told me. She placed her daughter, Nina, born with severe autism, in Willowbrook in 1971. “She always smelled of urine. Everything smelled of urine. It’s like it was in the bricks and mortar.”
Diana and her husband, Malachy McCourt—the memoirist, actor, radio host, and famous New York pub owner—soon became outspoken activists and got involved in a class-action lawsuit against the institution. “I can’t quite tell you how much they didn’t want us to witness what was going on inside,” Malachy told me. When children were presented to their parents, they were taken to the entranceway of their dorm after being hastily dressed by attendants. “The clothes were never her clothes,” Diana said. “She was wearing whatever they could find in the pile.”
But most chilling of all was an offhand comment Diana made about the reports she received about her daughter. They were vague, she said, or demonstrably untrue, or maddeningly pedestrian—that she’d just gone to see the dentist, for instance. “The dentist,” Diana said, “was notorious for pulling people’s teeth.”
Wait, I said. Repeat that?
“Instead of dental care, they pulled the teeth out.”
Is that how my aunt lost her teeth?
Rivera noted in his special that the wards contained no toothbrushes that he could see.
I’d like to think that Adele’s life improved when she went to Wassaic State School in 1964. But New York produced, at that moment in time, nothing but hellholes. (Rivera also visited Letchworth Village in his documentary, an institution so awful that the McCourts steered clear of it, opting for Willowbrook instead.) Wassaic, too, had a reputation for being grim. At least one note from the report sent to my mother indicated that my aunt was very keen on leaving it. The date was January 18, 1980. Adele was by then 28 years old and had enough of a vocabulary to get her point across. “Clothes and suitcase?” she asked one of the clinicians.
Even when my aunt finally transferred to residential care, living in private homes and attending local programs in upstate New York, her treatment, until the ’90s, seemed less than ideal. In March of 1980, my aunt attended a day facility in an old factory that still had very loud electric and pneumatic machines, and the result was disastrous—“agitated, violent outbursts.” She was frequently taken to the “Quiet Room,” quilted with actual padded walls, where the staff would physically restrain her. This practice, the report notes, is no longer used in New York.
It took seven years and nine months before her team realized that the industrial cacophony was causing a good deal of the problem.
It is mid-December 2022. Adele’s genetic test has come back.
Her disorder does indeed have a name. Remarkably, it would not have had a name if we’d tested her just four years ago. But in 2020, a group of 50-plus researchers announced their discovery of Coffin-Siris syndrome 12, the “12” signifying a rare subtype within an already rare disorder. At the time they made this discovery, they could identify just 12 people in the world whose intellectual disability was caused by a mutation in this particular gene. Since then, says Scott Barish, the lead author of the paper announcing the finding, the number has climbed to somewhere between 30 and 50. So now, with my aunt, it’s that number plus one.
I immediately join a Facebook group for people with Coffin-Siris syndrome. I find only a few parents with children who have the same subtype as Adele. One couple lives in Moscow; another, Italy. But as soon as I post something about my aunt, there’s a flurry of replies from mothers and fathers of kids across the Coffin-Siris spectrum, most of them focused on the same thing: Adele’s age. Seventy-one! How thrilling that someone with Coffin-Siris syndrome could live that long! They want to know all about her, and what kind of health she is in. (Robust, I reply.)
Because Coffin-Siris syndrome, first described in 1970, can be caused by mutations in any one of a variety of genes, its manifestations vary. As a rule, though, the disorder involves some level of intellectual disability and developmental delays. Many people with Coffin-Siris syndrome also have “coarse facial features,” a phrase I’ve come to absolutely loathe; trouble with different organ systems; and underdeveloped pinkie fingers or toes (which is how, before genetic testing came along, a specialist might suspect a patient had it). Some, though by no means all, have microcephaly.
As far as I know, my aunt’s fingers and toes are all fully developed—Coffin-Siris syndrome 12 doesn’t seem to affect pinkies as much—and she doesn’t appear to have any organ trouble. She does, however, have microcephaly, as did four of the 12 subjects in the breakthrough paper about her specific subtype. But what really stood out to me in that study—and I mean really shone in a hue all its own—was this: Five of the dozen subjects displayed autistic traits.
In fact, the sparse literature on this subject suggests that a substantial portion of people with Coffin-Siris syndrome, no matter what genetic variant they’ve got, have a diagnosis of autism spectrum disorder as well.
Which is what I’ve suspected my aunt has had all along.
Knowing what I now do, I’m that much keener to find a family with a child who has Coffin-Siris syndrome 12 that would be willing to welcome me into their home. I call Barish, the lead author of the breakthrough paper, who heroically refers me to two. But one suddenly becomes shy and the other lives in Ireland. I start making my way through the other 50 co–first authors, co–corresponding authors, and just plain co-authors listed in the study. For a long while, I get nothing—turns out I’m talking to lab people, mostly—though I learn a lot about protein complexes and gene expression.
Then I reach Isabelle Thiffault, a molecular geneticist at Children’s Mercy Kansas City. By some extraordinary fluke, she has, in her database, four children with my aunt’s subtype. Two have microcephaly. One of those two is a 7-year-old girl named Emma, who lives in the Kansas City area.
I call her mom, Grace Feist. Would she mind if I paid a visit? She would not.
Grace and her husband, Jerry, took Emma in at seven months old and adopted her at a year and a half, knowing she had significant intellectual and developmental delays. They were prepared. They had fallen in love.
They also had ample state resources at their disposal, heavily subsidized or even free. More still: They had a rich universe of support groups to draw from, a sophisticated public school in their backyard, and the benefit of a culture that’s come a long way toward appreciating neurodiversity.
They were able to actively choose Emma. Whereas my grandparents—pressured by doctors, stamped by stigma, broken by exhaustion and confusion and pain—felt like they had no choice but to give their daughter away.
“So this is the best thing, because it will keep your hair nice and neat, and it doesn’t have any tingles.”
Tingles? I ask. It’s late February of 2023. We’re sitting in Emma’s bedroom in Lee’s Summit, Missouri, and she’s waving a new silk pillowcase at me.
“They’re like big stuff in your hair.” She gestures at her thick brown ponytail.
Tingles … oh, tangles!
She nods. “Guess what? Tangles will get in your hair. If Mommy’s brushing, I will be so mad.”
A few feet from her is a mounted poster that says For like Ever. As in: We’ve embraced this little girl for life—for, like, ever. Grace got it at T.J. Maxx shortly after Emma’s adoption became official.
Every time I hear Emma speak, I find it hard to believe that she and my aunt have a mutation in the same gene. She chatters merrily in full sentences, talks about her friends, and can express how she feels, often in ways that are surprising or quite poignant.
“Emma, are you the same as other kids or different?” Grace asks when we pick her up at school the next day.
“Different.”
“Why?” she asks.
“Because I’m the only one doing coloring. Not the other kids.”
“Do you like being different?” I ask her.
“No.”
“Why?” I ask.
“Because I want to be like other people.”
But what I’m stuck on is all the ways that Emma started out like my aunt. When Grace and Jerry (a very involved father, just shy around reporters) first took her in at seven months to foster her, “she just lay there like a two-month-old baby,” Grace says. “We thought she was blind.” She didn’t make eye contact; she couldn’t roll. But in Bismarck, North Dakota, where Grace and Jerry were living at the time, Emma was entitled to all kinds of state-funded early intervention, as she is in Missouri. By nine months old, she was sitting unsupported, thanks to hours spent in a special tube swing to help her develop her core muscles.
Emma wasn’t as late to walk as Adele, but she didn’t take her first wobbly step until 16 months, and because it was 2016, rather than the early 1950s, physical therapists again intervened, having her toddle on uneven surfaces—pillows, cushions—to bolster muscle tone. She developed a smoother gait at about 2, but it took a couple more years for her to have the balance and coordination to walk normally, or to climb the stairs without help.
And speech! A huge surprise. Emma may be a bubbly ingenue, telling me all about indoor recess and her BFFs at school, but that’s hardly how she started. When she was 4 years old, she had only 100 words in her vocabulary, and that’s a generous estimate. “The way it was described was: She’s not deaf, but it’s almost the speech of someone who can’t hear,” Grace says. But Emma was working with state-funded speech therapists at the time, and they determined that she had auditory-processing disorder. When she got to her public school in Lee’s Summit—which gives extra speech and occupational therapy to those who need it, plus additional reading and math instruction—her vocabulary started to grow, slowly at first, and then in a rush. “I don’t know what it was,” Grace says.
Well. I have some idea. It was having a supportive school. It was having several hours a week of occupational, physical, and speech therapy from the time Emma was an infant. And it was Grace herself.
If you’re going to have an intellectual disability, who you really want as your mother is Grace Feist. Thirty-three, forever in flip-flops, and brimming with opinions—she has the concentrated energy of a honeybee—Grace has gone to exceptional lengths to tend to Emma’s education and psychological well-being. She’s decorated the basement playroom in pastels and muted colors. (“With visual-processing disorder, which Emma has, it’s not as overwhelming,” Grace explains.) Once a week, she takes Emma to vision therapy; she picks Emma up at school early every day to focus even more on her reading and math at home, without distraction. Grace is the queen of resourcefulness when it comes to all things pedagogical.
“I had a developmental pediatrician tell me: ‘There is no rock you haven’t looked under. This is what you have, and that’s okay,’ ” she says. “And he came from the best of intentions. But let me tell you, there were, like, 50 rocks I hadn’t looked under.”
As Grace and Emma give me a tour of Emma’s in-home classroom, all I can think is, My God, the effort. It contains a bucket of at least 80 fidget toys, many of them simple household items repurposed for anxious hands (silicone sink scrubbers, sewing bobbins). Emma sits on a purple wobble disk—it looks like a whoopee cushion the size of a satellite dish—to continue developing her core muscles. The walls are lined with giant flash cards from Secret Stories, a phonics-based reading program that makes intuitive sense and seems kind of fun, which is a good thing, because almost nothing demoralizes Emma more than trying to read. She can barely do it, though she’s trying.
“How does reading feel?” Grace asks.
“Mad,” Emma says. She’s wearing a resplendent lavender shirt with daisies on it. “Because if Mommy say, ‘Read this now,’ I would be super grumpy. Because they have hard words.” She’s pointing to a rudimentary book she’s been struggling with. “But some people say, ‘This is easy!’ ”
“How does that make you feel?” Grace asks.
“Mad. Sad.”
We move on to look at the shelves on the wall. They’re stocked with tactile learning tools: numbers made of sandpaper. Montessori cubes showing multiples of 10. Wax Wikki Stix to make letter shapes.
“If you change the approach to everything being multisensory—you see it, you hear it, you taste it, you touch it, you smell it—then you learn it,” Grace says. “Because you’re using all these neural pathways for the same information. Then everyone can learn.”
Perhaps I shouldn’t be surprised by Grace’s tenacity. She was raised in Florida, near Orlando, and had her first daughter, Chloe, at 16. She joined the Navy as a reservist in 2010 and worked for a time as a military police officer; then she worked security in an oil field in North Dakota, where she made great money and got to see the northern lights, as long as she was willing to put up with temperatures 20 degrees below zero. She met Jerry, then an information technologist, on the website Plenty of Fish. Today, he’s a professional YouTuber, with an inspirational-Christian channel that has 2.6 million subscribers. On December 28, 2016, they adopted Emma. In 2018, Grace gave birth to another daughter, Anna.
“Having Anna was the best thing for Emma,” Grace says, “because it really taught her how to play—with other kids, even with toys. That mimicking, that seeing what to do. Because when you would buy Emma toys, she would just line them up.”
Grace and Jerry have made enormous sacrifices on Emma’s behalf. The whole family has. They don’t travel, because Emma needs structure and control. They seldom go to restaurants, but when they do, they bring along her purple noise-canceling headphones—shooting earmuffs, purchased at Walmart—in case the sound overwhelms her; she needs to leave the restaurant several times a meal in any event, just to ground herself. “That’s how we live our life,” Grace says.
Their life used to be even more difficult. When she was younger, Emma, like my aunt, was inclined toward self-harm. When I first mention to Grace that Adele has no teeth—and that I fear they were removed at Willowbrook or Wassaic—Grace cuts me off: “Because she would bite herself until she bled?”
Sweet Jesus. I hadn’t even thought of that.
“Because Emma did,” Grace says. “I have pictures of it.”
She doesn’t show me those pictures. But she does show me a picture of 4-year-old Emma with a giant green-and-purple Frankenstein bruise bulging from her forehead. “She’d hit herself in the face,” Grace says. “She would bang her head on the floor, like, hard.”
And why does she think Emma did that? “She’s trapped in this mind where she knows what she wants, she knows what she needs, but you don’t know, and she doesn’t know how to tell you,” Grace says. “Is she aggressive? Yeah. I would be pissed too.”
I haven’t noticed any aggression in Emma—just a lot of sass, a gal who wants to show off her dance moves and introduce me to her stuffies. But again, this may be in part due to early-childhood interventions: Armies of occupational and speech therapists taught her how to be gentle, demonstrating how to talk kindly to dolls, and they encouraged Grace to teach Emma sign language, which she did, so that Emma could better express her wishes. As Emma got older, Grace read tons of books about emotional self-regulation, teaching her daughter to externalize her frustration. “We’d be in the middle of Walmart and she’d be stomping her feet,” Grace says. “But you know what? She wasn’t punching herself in the head.”
Today, Emma is flourishing. She may not yet know her phone number or address. She may not be able to tell you the names of the months or all the days of the week. But she’s making great strides, especially now that she’s learning at home. When I left her house in late February, she could count to 12; four months later, she was adding and subtracting. “Emma is going to thrive in her life,” Grace says. “Is she going to work at McDonald’s? Maybe. Is she gonna bag groceries? Maybe. But she’s gonna be okay.” Grace’s goal, she says, is to make sure that Emma’s mental health always comes first. “I have never met anyone more resilient or determined,” she adds.
As I prepare to leave, Grace gives me two gifts she’s purchased for my aunt. They’re things Emma likes: a lavender-scented unicorn Warmie (a stuffed animal you can safely heat in the microwave) and Pinch Me therapy dough that smells like oranges. “Anything scented is always really calming for Emma,” she explains.
Then Emma hands me a picture she’s drawn of me and Adele. Grace asks if she remembers why she drew it. “Yeah!” Emma says. “Because she has a hard time going to school.”
“Like you,” Grace says. Then: “You know what her aunt has?”
I assume she is going to say something about Coffin-Siris syndrome 12, but in a way that’s comprehensible to a child who has it too. But that isn’t where Grace is headed. “She has a woman who loves her and takes care of her because her mommy wasn’t able to. Just like you. Did you know that?”
Emma shakes her head.
I thank Grace and Emma for the gifts and head out to my rental car. I last maybe 30 seconds before losing it.
Is it a fair or genuine comparison, lining up my aunt and Emma side by side? Using Emma’s life story thus far as some kind of counterfactual history? To ask What if?
Yes and no, obviously.
There’s variability in all genetic disorders, including Coffin-Siris syndrome, even among those with mutations in the same gene. The original paper looking at my aunt’s specific subtype found that four out of the 12 individuals had microcephaly, for example, but one had macrocephaly; go figure. My aunt and Emma, though they both have subtype 12, clearly have different manifestations of it, a phenomenon one can observe just from looking at them: Emma is big for her age while my aunt is tiny; my aunt’s microcephaly is unignorable, because her sutures—the flexible material between a baby’s skull bones—closed prematurely, while Emma’s didn’t, making her microcephaly harder to detect. Her doctor says it may be easier to see as she gets older, though.
“If your aunt had had the treatments available today, I suspect her life would be very different,” says Bonnie Sullivan, the clinical geneticist at Children’s Mercy Kansas City who treats Emma. We’re speaking just days after I return home. She has looked at both Adele’s and Emma’s specific gene mutations. “She may not have been as high-functioning as Emma, but she could have maximized her potential, and her quality of life would’ve been a lot better.”
It seems impossible to quarrel with this assessment. The literature on disability is bursting with stories—heartening or depressing, depending on your point of view—about the advances made by people with intellectual disabilities once they were liberated from the medieval torments of their institutions. Studies as far back as the 1960s showed that children with Down syndrome begin to speak earlier and have higher IQs if they’re kept in home settings rather than institutional ones. Judith Scott, warehoused with Down syndrome in 1950 at the age of 7, famously became an artist once her twin sister established herself as her legal guardian 35 years later; her handsome fiber-art sculptures are now part of the permanent collections of the Museum of Modern Art and the Centre Pompidou.
But perhaps the best-known example of what happens to underloved, understimulated children are the orphans from Nicolae Ceauşescu’s Romania, where “child gulags” warehoused some 170,000 kids in appalling conditions. These children became tragic, unwilling conscripts in an inadvertent mass experiment in institutional neglect. When, 11 years after Ceauşescu’s execution, American researchers finally began to study 136 of them, putting half in foster settings and monitoring their development, the findings were bleak. Only 18 percent of those still in orphanages showed secure attachments by age 3 and a half, versus almost 50 percent of those who’d been transferred to family settings. By the time the kids still in orphanages had reached 16, more than 60 percent suffered from a psychiatric condition.
Which brings me back to my aunt’s repeated diagnoses, over the years, of psychosis. Maybe the condition was inevitable; maybe my aunt would have been psychotic no matter what kind of life she’d led. But when I watched those gruesome spools of footage from Willowbrook, all I could think was: Who wouldn’t be driven mad by such a place? After she left Willowbrook, Adele would abruptly shout “Stop hurting me!” for no apparent reason. Her care team assumed she was having hallucinations, a plausible postulate. But isn’t it equally plausible to theorize that she was reliving some unspeakable abuse from her past? Or, as the Georgetown philosopher and disability-studies professor Joel Michael Reynolds puts it (speaking my thoughts aloud): “Why isn’t that a completely reasonable response to PTSD?”
I’ll never know how Adele’s life could have turned out if she’d been born in 2015, as Emma was. All I have is a plague of questions.
What if a task force of occupational, speech, and physical therapists had shown up at my grandparents’ home each week, teaching Adele to walk, talk, and gently play with dolls?
What if she had spent her formative years not rotting in her own diapers or staring at the walls, but engaging in organized play, attending school, and basking in the company of adults who loved her?
What if she’d had caretakers who inhaled book after book about emotional self-regulation and encouraged her to stomp her feet in department stores, rather than hit herself in the head?
And what if—what if—Adele had had a sister to play with?
It’s possible that all the interventions in the world would have done nothing, or next to it. Sullivan says she’s seen families recruit every imaginable expert and pour their energies into every conceivable intervention, yet with depressingly little to show for it. “There are some individuals with such severe manifestations of certain disorders that aggressive interventions don’t seem to change the outcome very much,” she says. “And it kills me. I truly grieve that result. Because the parents are trying everything.”
Similarly, there are children who wind up in residential care in spite of their parents’ best and most valiant efforts, because their risk of self-harm or of harming others remains too great. Parents are not, nor should they be expected to be, saints.
But my mind keeps looping back to that eight-page report my mother was sent about Adele’s history. The notes from Willowbrook, what few there are, tell a story all their own.
March 19, 1953: 21-month-old girl, quite small for her age … able to sit without support, to imitate movements, and is reported to be able to say “mama.” Adele’s IQ is measured at 52.
February 1, 1960: Microcephalic child of 8 ½ years with limited speech and partial echolalia. She is disoriented, and her acquaintance with simple objects in her surroundings is rather poor even for her overall mental level … Rate of development has markedly slowed down since the last evaluation 7 years ago. The consequent drop in IQ is considerable. This time it is measured at 27.
In her seven years of staring at those walls and rocking naked on the floor and never once, I assume, being shown a particle of love apart from those brief visits from my grandparents, Adele’s IQ dropped by almost half, startling even those who evaluated her. And yes, maybe this was destined to happen; maybe her smaller brain had less noticeable consequences in a toddler than in an 8-year-old.
But if my aunt could expand her vocabulary simply by going off a useless antipsychotic and onto Zyprexa—in middle age!—imagine what else she might have been capable of over the course of her life, if only she’d been given a half, a quarter, a hundredth of a chance.
It’s A sunny day in May of this year. I’m working on the back deck, nearing the end of writing this story. My cellphone rings. It’s Evelyn, Carmen’s daughter. She apologizes for calling me on a Sunday, but something serious has happened. Adele has collapsed; she’s in the hospital; it’s looking bad. Can I please locate my mom?
I leave messages everywhere and call Adele’s nurse, Emane, who I’ve been told is in the hospital with her. Emane is upset. No one will tell her anything. She’s been banished to the waiting room. They really need my mother, my aunt’s medical proxy.
A few minutes later, my mother phones them. A few minutes after that, my father conveys the news to me: Adele has died.
A heart attack, apparently. Just after breakfast.
I call Evelyn. She is crying. I stammer my way through this conversation, also crying, but mainly because we barely got to know my aunt, because this was supposed to be the beginning of something and not the end, because I know the grief I feel in no way matches Evelyn’s or Carmen’s or Juan’s. I am fluttering with an awkward mixture of shame, regret, sadness. “She was loved,” Evelyn keeps saying, over and over.
I know, I say. I just wish more by us.
“You came at exactly the right time,” Evelyn assures me. “I truly believe that.”
I hang up. God, they’re so gracious, this family. “We don’t judge,” Evelyn told us the first time we went up to see Adele at the Ayalas’. She meant it.
I phone my mother. She has lurched into administrative mode, planning the funeral. This is peak Mom, organizing things, surmounting the tough stuff by finding footholds in the small details. I wait a bit and call Carmen, though with some trepidation. My mother says she was unhelmed—bawling—when they first spoke. Carmen, calmer but still sobbing throughout our talk, tells me it’s true. “I broke down. I didn’t expect it to happen like that.”
We bury Adele three days later. It’s a gorgeous afternoon, perfect really, but the incongruities and dissonances of the hour are hard to ignore. Here we are, having a Jewish funeral for a woman who was never exposed to the Jewish tradition her whole life, while those whose lives have been most brutally upended—those who have spent the past 24 years loving and caring for Adele—are Catholics. My aunt will be buried next to her mother, forever reunited, while the woman whom she called “Mommy”—who just four nights ago rubbed Vicks VapoRub on her back and brought her tea because she had a cough—will go back to a house with an empty twin bed.
I’d like to think that in the afterlife, my grandmother’s heart will mend. That she will never again be told to send Adele away, that God will say to her: It’s okay, she’s lovely as she is; she’s my child too.
Problem is, I’m not much of a believer. I wish I was.
But the rabbi, Lisa Rubin, is brilliant, making something seamless out of the chaotic threads of my aunt’s life and the untidy grief of this motley group, managing to acknowledge the trauma of my mother, the trauma of my aunt, and the trauma of my grandparents, showing them the compassion they deserved their whole lives but probably never got and certainly never gave to themselves. And she honors the Ayala family in the most beautiful way, invoking the Jewish legend of the Lamed Vavniks, or 36 individuals in every generation who are the most righteous of all humanity. “They’re often called the hidden saints among us,” she says. “The people who do God’s work faithfully and humbly and whose virtue keeps the world spinning. They pour compassion and love on those around them with no desire for recognition.” To my family, she says, Carmen, Juan, and Evelyn are the Lamed Vavniks—“the hidden saints of Adele’s life.”
The Ayalas are all discreetly weeping. Carmen will later tell me: I will miss Adele so much.
My mother is invited to speak next. Evelyn will speak after her, then one of Adele’s housemates, then Adele’s psychologist, then her case manager—it’s wonderful that they’ve turned up.
But my mother … I’m not quite prepared. She starts with a version of something I’ve heard before—that losing Adele was a trauma that took decades to heal. But then she elaborates in a way she hasn’t even in our most intimate discussions: The three times she saw Adele back in the ’90s, she still felt disconnected from her. Adele’s previous caretakers had left my mom and my grandmother (and in one case, my mom and me) all alone with my aunt in their living room; they hadn’t said a thing about who Adele was or what her place was in their home. That changed, my mother says, when she saw Adele at the Ayalas’, discovering the charming, idiosyncratic character of her baby sister—and how very much she was loved, how she fit into a family.
“Those visits changed everything for me,” she says. “I opened my heart to Adele after shutting her out for nearly 70 years, and I found myself loving her again the same way I did as a 6-year-old child.” I hear a catch in her voice. She pauses, then regains her composure. “Now,” she continues, “I’ve lost Adele for the second time. And it hurts in a way I never expected. But I would not trade those visits for anything, because my life is so much richer. Adele has taught me to love in a whole new way.”
She finishes. And then, without warning, she rushes into the arms of my dad and starts crying in deep, seismic sobs. “I lost all those years,” she says into his shirt. I can barely make it out.
I’ve never seen her sense of control desert her in this way.
My mind wanders back to the last time I saw Adele. It was December, when Emane swabbed her cheek. I was alone then, just me and my recording device; my mother was in Florida. Carmen reminded Adele that I was her niece, her sister’s daughter. “Do you remember Rona?” she asked. “Yeah,” Adele said, but it wasn’t a convincing “yeah”—more like one of the blank ones she uttered when she didn’t understand.
We collected Adele’s DNA, and then I stuck around, curious to see how my aunt passed her afternoons and evenings. Spending that brief stretch with her meant experiencing time in a sensual way, almost, just feeling the thickness of the hours as they passed. We sat for a while together in the kitchen. Then we went upstairs to her bedroom, a warm, delightful space, her dresser tumbling with stuffed animals and her bed popping with a pink Disney-princess blanket. Adele carefully selected her outfit for the next day, matching every item of clothing, down to her socks.
There are many different shades of periwinkle blue. I had no idea.
Then she undressed, put on a plush lavender bathrobe, and headed into the shower to slowly bathe herself and wash her hair. Carmen supervised, but left her alone. After she’d dried herself off, Adele headed back into her room, closed all of the blinds (“for night”), and settled into her rocking chair. She spent the next half an hour, at least, just rocking. She often wiggled her fingers in front of her eyes. Occasionally she broke into a smile or chanted the same words to herself (“paint, pepper”) or gave a little laugh. She seemed content.
But in the shower—and I’ll never forget this, not for as long as my battered memory is intact—she babbled much more coherently. “Sister. Rona. Janet. Mirna. Rrrrrrrona”—she rolled the R—“A doll. A teddy bear.”
I’ve listened to that wisp of audio dozens of times, just to make sure I didn’t wish those words into existence.
Sister. Rona. She was already committing my mother’s name to memory, and to her own family tree, along with Carmen’s daughter and daughter-in-law, Mirna and Janet. Her ability to sweep in such things was, as Evelyn said, her gift. And now, we in our family will finally be committing her name to ours, which for so long—so pointlessly long—had a phantom bough.
Adele Halperin. Daughter, sister, aunt. June 30, 1951–May 7, 2023.
This article appears in the September 2023 print edition with the headline “The Ones We Sent Away.” When you buy a book using a link on this page, we receive a commission. Thank you for supporting The Atlantic.