A writer pieces together the story of a family secret: An aunt who was sent away

TONYA MOSLEY, HOST:

This is FRESH AIR. I’m Tonya Mosley. When Pulitzer Prize-winning writer Jennifer Senior was 12 years old, she learned a startling detail about her family. Her mother was not the only child of her grandparents, as she’d grown up to believe. She had a younger sister named Adele, who had been institutionalized in the 1950s when she was just 21 months old.

Adele was born with a developmental and intellectual disability, and her parents were told she’d never know her family members’ names or be able to function in society. Basically, she’d never live a normal life. Many families of the time were advised the same thing – to send their children away for the sake of the child and the family. Jennifer Senior writes about her aunt Adele in the September issue of The Atlantic, titled “The Ones We Sent Away.” In the piece, Senior gets to know the aunt she never knew she had and tries to restore her aunt’s humanity and place in the family unit.

Jennifer Senior is a staff writer at The Atlantic and winner of the 2022 Pulitzer Prize for feature writing for her piece “What Bobby McIlvaine Left Behind.” It’s a portrait of a family’s grief and the search for meaning after losing their son and brother on September 11. The article is now published as a book under the title “On Grief.” Jennifer Senior writes about her aunt Adele in the September issue of The Atlantic, titled “The Ones We Sent Away.” Jennifer Senior, welcome back to FRESH AIR.

JENNIFER SENIOR: Oh, thank you so much for having me here.

MOSLEY: Thank you for this moving piece, Jennifer. I mean, having to institutionalize loved ones is such a source of shame for so many families. And through your writing, you’ve created this space to acknowledge really the grief that comes with this choice. You learned about your Aunt Adele when you were 12 years old, and up until that time you actually thought your mother was the only child.

SENIOR: Yeah, I was dumbstruck – thunderstruck. I write in the piece that it was both shocking, but also made this spooky kind of sense, because suddenly I had this understanding of these invisible forces that were slowly and subtly rearranging all the family dynamics, that this would explain why my grandfather was a volunteer at the Westchester Association for Retarded Citizens – which is what they called it in those days. There had been no language revolution back then – and why my grandmother every Christmas would frantically and sort of anxiously go Christmas shopping. And we were Jewish, so I didn’t know why, but it was because she had a daughter who was in a home where they were taken to church every Sunday. So yeah, and I remember also being rather upset on sort of everyone’s behalf that, like, wow, my mom had this sister she hadn’t seen, and my grandparents had to give, like, a baby away. I mean, the whole thing just sort of blew my 12-year-old mind, you know.

MOSLEY: Things about your family – the pieces of the puzzle, in a way – started to come together. Things that didn’t make sense, as you mentioned, started to make sense. Your mom, at the time that your aunt was institutionalized, was 6 years old. And your aunt, as we mentioned, was just 21 months old. I didn’t know they institutionalized babies.

SENIOR: Me neither. And yet, if you look at the archival photos from Willowbrook and all kinds of state institutions – not just Willowbrook alone, which was the most famous palace – gothic palace of horrors – you will see six and seven kids in a crib waiting to – you know, for supposedly some kind of therapy. I mean, there’s, like, an iconic shot that I think we run in the Atlantic of just this thing. There were children who were born in hospitals who were just left at the hospital. You know…

MOSLEY: Wow.

SENIOR: …The mothers were instructed not to even look at the baby, as if the sight of a baby who was different could be so monstrous.

MOSLEY: Yes. So you knew about your aunt when you were 12. But I mean, it kind of – this is the kind of detail, I guess, that lives in those closed doors of our psyche because at 12 years old, what were you going to do about it? What actions would you have taken at that time? So you had all but forgotten about your aunt until your husband had you look at a viral tweet thread. What was the tweet?

SENIOR: Oh, yes. OK. So to clarify one thing – and I love that you said the closed doors of your psyche. That is sort of how I think of it, as sort of nailing things under the floorboard, you know, and then every once in a while you’ll hear this thing scratching underneath the floorboard – you know, the floorboards and wonder what it is. I had actually visited my aunt once when I was 28, so I had not completely forgotten about her. I had expressed an interest, but that visit had been awkward.

So how many years went by? I mean, was I 50? Was I 51? I guess – I mean, I can’t do the exact timing, but two years ago, two summers ago, my husband – I must have been 51. My husband pointed me, as you said, to a tweet that was whipping around Twitter. It had gone unexpectedly viral because it was not a political tweet. It was not an outraged tweet. It was not the kind of tweet that tends to get viral traction on Twitter. It was a feel-good tweet that the tweeter, the author, had not meant, I think, in any sense to go viral. It was very heartfelt and sentimental. A British theater director had tweeted a picture of his 25-year-old son and said, Joey turns 25 today. He is nonverbal. He’s never spoken a word in his life. But he has taught me more than anyone, or – I don’t remember how he put it. But, you know, he was his greatest teacher, was the point.

And my husband said, have you seen this? And I said, no. So he said, you ought to look at it, and you ought to bring a box of Kleenex. And I said, OK. And I looked at it. And the reason that he directed me to it was because of all the replies – just kajillions of them, just hundreds of pictures of children who are nonverbal or minimally verbal. Some were young. Some were old. Some were really old. And they had been taken, maybe by their siblings or by their, you know, parents in their ’80s, doing joyous things, doing serious things, doing goofy things – gorgeous shots, all of them – stunning range, all pulsingly alive, these people, these kids or adults. And I swear I must have been scrolling for a half an hour before I went, oh, my God. I have someone like this in my family. It’s my aunt.

MOSLEY: It almost is like – right. It’s like it offered a portal – that tweet – for people to be able to express, to show a family member that perhaps had been a source of shame for families or who had not even had that type of spotlight in the family dynamic to be able to be seen. And I see that people are now responding to your tweets about this story, telling their own stories about disabled family members.

SENIOR: It’s amazing. And I wish I had more picture tweets. Somebody sent me a beautiful tweet saying, she proms – you know, they made prom a verb – and it was this beautiful girl in a prom dress. You know, I don’t remember if the mother identified what her particular disability was, but it was – just, it delighted me. She was all decked out and looked fabulous. But that was what was – I think, isolated exactly what was so remarkable about that cascade, that downrush of replies from two years ago – there was this pent-up demand to share these pictures of these kids.

MOSLEY: So when you saw these tweets, and it unlocked in your brain that, like, I am these people who are talking about their loved ones and expressing that they have a loved one who is developmentally disabled. Was that the impetus for you to go and visit her? How did it come to be that you and your mother then started visiting?

SENIOR: That was the impetus. I talked about it with my husband. I mean, he has been saying forever, you should go see your aunt. She’s still alive. I mean, this is – I think you would find it a rewarding thing to do with your mom. I think you guys would – you know, he’s always been very intrigued by this. And I was surprised. I raised it…

MOSLEY: Did your mom seem OK with it?

SENIOR: Yeah, well, this was the thing, right? Because you don’t want to feel like you’re sort of exploiting your own mom, you know? And my mom really insisted, like, no, no, no, let’s do it. Really, let’s do it. Because I said – I was very careful. I said, I really want to go see Adele. Just – if you want to just give me her address, I totally understand because this was so traumatic for her that she really had in some ways, I think, made a decision that she didn’t want to bust open an ancient wound and go see her. So I was prepared to go on my own. And my mom really surprised me by saying, no, no, no, I haven’t been to this new family setting. She’s been there for years. Let’s go. Let’s do it. I was surprised. It was almost like she wanted an opening or something.

MOSLEY: She was ready. Yeah.

SENIOR: She was ready. She was ready. Yeah.

MOSLEY: You all were told, as you mentioned, that Adele doesn’t know the name of anyone. She wouldn’t recognize you, really. But some of those first visits – like, she would wait for you at the door. And you all had a relationship. You were able to build something that felt familial. Can you share what it was like to spend time with her – slow time with her?

SENIOR: Oh, my God. Yes. It was wonderful, really. First of all, she was very eager. I mean, she had been told ahead of time that she was going to have visitors, and she was standing there at the door when we arrived at the very first visit. And when we left, she was almost like an airplane controller, you know, sort of directing us out of the driveway, you know, and that sort of thing. She likes to do that. Again, it’s how she asserts control. But it’s also a form of, I think, play for her, you know – directing cars in and out of the driveway.

But she had been told by Carmen to say, hello, Rona. I love you. And my mother was really moved and startled. I mean, whole sentences – right? – coming out of her sister’s mouth. We didn’t know she could do whole sentences. When we saw her when I was 28, she said yes and no, and that was it, interchangeably. Like, that was all we had. So that was already a surprise. She started singing Christmas carols for us because it was close to Christmastime. My mother was singing “Silent Night,” and my mother still has this beautiful voice. And it was really lulling Adele into this blissed-out state that first visit. When she…

MOSLEY: What a moment.

SENIOR: …Curled up on my – yeah – on my mom’s shoulder, I thought, well, that’ll be a sweet moment. And I got to get out my phone and quickly snap a picture because this will go away. Nope. She kept her head on my mom’s shoulder and just kind of stayed there, and – I don’t know. You know, I’m probably, like, assigning something to that moment that wasn’t there. But I would swear that she sensed something about my mom on some whispering inchoate level, like, in some echoing back cavern of her mind, she knew…

MOSLEY: This was her sister.

SENIOR: …That this was flesh and blood. Yeah, something – I – maybe I’m dreaming. But, like – I don’t know – to show that kind of affection that quickly and just relax into her that quickly – I don’t know. I just thought something very special evolved awfully quickly between the two of them.

MOSLEY: The photos that are in the article – I had been waiting to see them. And when I finally – I saw Adele’s face. She’s with your grandparents. So growing up, you had never seen those photos?

SENIOR: Oh, no. And in fact, my mother did not think that she had any pictures of Adele, full stop – not with my grandparents, not alone, nothing. And then she found that one photo, and it just took my breath away, not least because my grandmother got all dressed up to go see her. She’s really looking very fine. She’s got a hat on. She’s got her pantyhose and her heels, and she’s – and her lipstick and her hair done. And it was Christmastime. It was clearly right after Adele had moved finally out of institutional life and into residential care. But, I mean, when my grandparents died, and they died – I mean, my grandmother was 91, I think, or close to it – there was, like, almost nothing, I mean, or only that one photo. That’s it.

MOSLEY: Jennifer, let’s take a short break. If you’re just joining us, I’m talking with Pulitzer Prize-winning writer Jennifer Senior. She’s written a new piece for The Atlantic called “The Ones We Sent Away,” the story of Senior’s developmentally disabled Aunt Adele, who was institutionalized beginning at 21 months old. We’ll continue our conversation after a short break. This is FRESH AIR.

(SOUNDBITE OF RED HEART THE TICKER’S “SLIGHTLY UNDER WATER”)

MOSLEY: This is FRESH AIR. Today we’re talking to Jennifer Senior, a staff writer at The Atlantic and winner of the 2022 Pulitzer Prize for feature writing. She’s written a new piece called “The Ones We Sent Away.” It is a personal portrait of grief, with Senior learning about the life of her developmentally disabled Aunt Adele, who spent most of her life in an institution.

It sounds like your grandparents’ lives were – as children do, like – children offer the roadmap for parents’ lives because, you know, you’re – often your life revolves around them. But in this case, it was secret. It was covert. Folks didn’t know that that is why your grandparents’ lives were the way that they were, in a complete way and being able to see the big picture.

SENIOR: Well, you sparked a thought, which is – what’s so interesting is all of the psychological lives of our parents and everyone around us, for that matter, is somewhat inaccessible. But when I think about how much of my grandparents’ psychological lives were dominated by this and the ways that they were sublimating, with my grandfather doing all of this volunteer work and so forth, like, it’s really interesting to think about all the ways that their lives were organized around the daughter they did not have living under their roof. But they were still doing things nonetheless, you know? I mean, and I think that was what was so revealing when my mother first told me about it. I went, oh, yeah, yeah, that scans.

MOSLEY: When your grandmother…

SENIOR: Anyway, I’m sorry to have interrupted you.

MOSLEY: Yeah. No, no. This is so important, what you’re saying. When your grandmother had Adele, she knew that something was different. But the doctor was saying, your baby is OK. But then a doctor later told your grandmother the best thing to do would be to institutionalize Adele. But even before that recommendation – it wasn’t even a pediatrician who told her that, it was your grandmother’s doctor who noticed something different about Adele during your grandmother’s visit to the doctor.

SENIOR: Yes. And this was so traumatic, according to my mother, my grandmother did not tell her this full story until – God, my grandmother must have been in her 70s or in her 60s. So for the first year, my grandmother kept saying, I think Adele is in pain. She’s crying all the time. Her cry doesn’t sound like Rona’s did – that’s my mom. But, you know, it doesn’t – her cry doesn’t sound like other babies. She was convinced something was the matter, but she was this working-class woman from Flatbush in Brooklyn who – I don’t know if she was working in a deli at that point. She didn’t go to college. You know, nobody was taking her seriously.

You know, they kept blowing her off, telling her that the baby was fine, everything was fine, she was worrying too much, you know, doing that trivializing thing that doctors sometimes do – often did and still do – to women. And then my grandmother was up in the Catskills and went to see a local doctor because my grandmother had, like – I don’t know – a persistent sore throat. And because Adele was always crying, she took Adele with her. And the doctor did not look at my grandmother at all even though that was the purpose of her visit.

The doctor looked at Adele and said, again, using the actual terms of the day, this is – this was in medical textbooks – looked at my grandmother and said, is that baby getting the attention that she requires? And my grandmother said, what do you mean? And the doctor said, that child is a microcephalic idiot, which must have been – I can’t even really imagine the devastation, right? And so there was nothing to do. And that was when my grandparents were being aggressively told that the best thing for Adele, for the family and for my mother was to send Adele away – best for all three, best choice. And what did my grandparents know? How could they stand up to all these granite-faced authoritative men in their white coats? I mean, what were they supposed to do? They didn’t know what to do.

MOSLEY: I’m also just thinking that, as hard as it is to say, I mean, it might have been the best course of action at the time, because I’m just thinking about how society wasn’t set up to accommodate and, to a certain degree, still isn’t set up with the support to allow a family to care for a family member who may need around-the-clock care services. I mean, of course that doesn’t take away the guilt or the grief that more could have happened, but I’m thinking about the 1950s.

SENIOR: You are so right. And it’s a very generous response. It is utterly correct. My grandparents certainly didn’t have the means for the kind of round-the-clock custodial care that Adele would have required. The state provided nothing. Now if you have a child with an intellectual or physical disability, you get free or close to free occupational therapy, physical therapy, speech therapy, all kinds of things. Schools are almost unfailingly obliged to mainstream them, to provide IEPs for them – individualized education plans for them. There was nothing available back then.

As you say, it was the 1950s. And some women were home, but others, like my grandmother, were working. She worked for most of her life to make ends meet with my grandfather. And so the infrastructure was missing. And as you say, it’s still kind of missing, even with all these things in place. There is still a giant lacuna in the United States, far more than any other developed nation, for taking care of children, the elderly, you name it, even if they are, you know, able-bodied. I mean, it’s a massive problem, so yes.

MOSLEY: Our guest today is Jennifer Senior, Pulitzer Prize-winning writer with The Atlantic. We’re talking about her new piece, “The Ones We Sent Away.” We’ll be right back after this break. I’m Tonya Mosley and this is FRESH AIR.

(SOUNDBITE OF BRAD MEHLDAU’S “BLACKBIRD”)

MOSLEY: This is FRESH AIR. I’m Tonya Mosley and we’re talking with Pulitzer Prize-winning writer with The Atlantic, Jennifer Senior. Senior has written a new piece titled “The Ones We Sent Away” where she chronicles the life of her aunt, Adele, who was institutionalized beginning at 21 months old.

Your grandparents sent Adele to Willowbrook State School on Staten Island, as you mentioned. And for those who don’t know, Willowbrook would later become this poster child for this mistreatment of developmentally disabled people in these institutions. Geraldo Rivera made a documentary about this 50 years ago for WABC called “The Last Great Disgrace.” And I want to play a clip from this doc. I want to note that Geraldo uses the term retarded, which we don’t use anymore. Let’s listen.

(SOUNDBITE OF DOCUMENTARY, “WILLOWBROOK: THE LAST GREAT DISGRACE”)

GERALDO RIVERA: There was one attendant for perhaps 50 severely and profoundly retarded children. Lying on the floor naked and smeared with their own feces, they were making a pitiful sound, a kind of mournful wail that it’s impossible for me to forget. This is what it looked like. This is what it sounded like. But how can I tell you about the way it smelled? It smelled of filth. It smelled of disease. And it smelled of death.

MOSLEY: That was a clip from the 1972 documentary “The Last Great Disgrace,” which exposed the horrific conditions at Willowbrook State School where, Jennifer, your aunt lived for the first years of her life. She left about eight years before this documentary was made. But have you been able to piece together what her existence maybe her day-to-day life there was like?

SENIOR: I wish. There are projects in New York that are semi-dedicated or maybe wholly dedicated, trying to preserve whatever archival material there is from Willowbrook. I phoned every possible state agency and all the dedicated phone numbers for this, and they claimed to have no record at all of my aunt. So yeah, it was infuriating because, I mean, she was there for the formative period – you know, from the time she was 21 months until she was – I don’t know – probably 12, 13, something.

MOSLEY: Those records that you were able to get, the limited records, what did you discover in those records? Because, I mean, it sounds like you were able to get an inkling of, maybe, her mental state, really what sounds like a deterioration of her mental state.

SENIOR: Yep. And while she was at Willowbrook – I found this so interesting. She came in, and they described a 21-month-old girl who had microcephaly but could sit on her own, could feed herself with a bottle, could say mama and had an IQ of 52. And they didn’t IQ test her. I mean, and you can raise all sorts of questions about whether or not IQ tests are even…

MOSLEY: Right, yeah.

SENIOR: …Accurate, right. I mean, this is also – but here is what I found fascinating. They didn’t test her again in any kind of way, do any other evaluation of her, until she was about 8 1/2. And her IQ had dropped to 27. And they said that they were surprised by the drop, that she really didn’t seem to have any awareness of her surroundings.

MOSLEY: That’s such a big drop in IQ.

SENIOR: It’s almost in half, right? And they talked about her not having – that objects confused her, that she really seemed almost – not vegetative, but something near that. What I thought, though, was so interesting is that embedded in this note was a tone of surprise, that even by the compromised standards that she had sort of presented, you know, even by her own standards, she had really rapidly deteriorated and that they were shocked. And all I could think in hindsight is, they were shocked? How could they be shocked?

These are people who were – as Geraldo had said, were naked and rotting in their own feces or their own diapers and under-stimulated all day long with nothing to play with, no one to interact with, no toys. There’s another part of that documentary that talks about all of the residents sort of desperate to get just – like, if a piece of paper fell on the floor, they would want to play with that. They were – I mean, it was like – it was as if – I mean, the only modern-day equivalent we have are the Romanian orphanages – right? – where kids were just criminally under-loved and under-stimulated.

MOSLEY: How would you describe how you felt reading that and also, by this time, having forged somewhat of a relationship or regularly seeing her, to just imagine what she might have gone through?

SENIOR: I mean, I felt ill. The other thing that immediately came to mind is that Adele wouldn’t have had any way ever to convey what happened to her…

MOSLEY: She couldn’t tell you, yeah.

SENIOR: …What those years were like, because she was only minimally verbal. She didn’t have full sentences. There are all kinds of notes in her case file that sort of talk about her having auditory hallucinations and shouting stop that, you’re hurting me. And they attributed this to psychosis. But when you read that, you think, is it psychosis or is it PTSD? She could just be this Russian nesting doll of hidden trauma, for all we know, where there could just be layers of things or sensations or sounds or whatever that could surface unbidden in her head that she can’t describe, right? I mean, it could be a perfectly reasonable response to a memory, for all we know, to be shouting stop hurting me.

MOSLEY: I want to talk a little bit about where your aunt Adele went after Willowbrook. After living in various homes, she then moved into a group home with a caretaker named Carmen. And that’s where, as an adult with your mother, you would visit her. What were some things that stood out to you about her life there?

SENIOR: We were given to believe that Adele couldn’t retain names, couldn’t remember faces, didn’t know who anyone was. As it turns out, Adele had a comprehensive, almost freakishly encyclopedic memory or kind of knowledge of everybody in Carmen and Juan’s – those are her caretakers – family. So all the grandkids – and it was a blended family because Carmen, the primary caretaker, met her husband, Juan, 42 years ago or something. You know, knew all of these names of grandchildren and friends and people who’d come through, so that was the first thing. She had all these hobbies and passions. My mother is going through this kind of crazy necklace-making stage. She’s buying all these beautiful beads and making necklaces and selling them for charity. And we show up two years ago, and my mother is wearing a bright red sweater and a chunky necklace that she’s made. And Adele is wearing a bright red sweater and a chunky necklace that she’s made.

MOSLEY: They’re alike. Yes.

SENIOR: They’re alike. And by the way, when we visited when I was 28 years old – so that would have been, I guess, 23 years prior to this first visit – we show up. My mother was in this avid needlepointing phase where she was taking on these ridiculously ambitious projects. Like, I’m going to make all of the Chagall windows, you know, and they will take up the entire – I mean, it was crazy. You know, Adele was also making needlepoints. I mean, it’s like these twin studies that you read about where twins are reunited after 40 years and they both have first wives named Gail and they’re both wearing yellow shirts or whatever. It was something like that. It was really nice.

But the other thing that I noticed about Adele was she has all these tics like my mom. She’s super – she’s a neatnik like my mom. She’s fastidious like my mom. She doesn’t let anybody organize the kitchen, like my mom. I mean – and, I mean, this person who I had been led to believe kind of didn’t have anything like a personality – I mean, they had all of these delightful in-jokes with Adele. So Juan would look at her and say, hey, Adele. Who’s the turkey head? And she would say, Daddy. She called him Daddy. Daddy is the turkey head. And then she would cackle. You know, they’d worked out a routine, you know, a kind of vaudevillian back-and-forth.

MOSLEY: Let’s take a short break. If you’re just joining us, I’m talking with Pulitzer Prize-winning writer Jennifer Senior. She’s written a new piece for The Atlantic called “The Ones We Sent Away,” the story of Senior’s developmentally disabled Aunt Adele, who was institutionalized beginning at 21 months old. We’ll continue our conversation after a short break. This is FRESH AIR.

(SOUNDBITE OF THE BAND SONG, “CHEST FEVER”)

MOSLEY: This is FRESH AIR. Today we’re talking to Jennifer Senior, who’s a staff writer at The Atlantic and winner of the 2022 Pulitzer Prize feature for writing. She’s written a new piece called “The Ones We Sent Away,” which is a personal portrait of grief, with Senior learning about the life of her developmentally disabled Aunt Adele, who spent most of her life in an institution.

You were actually able to do genetic testing to find a more specific diagnosis for Adele’s condition. You – the family had received this kind of general description of what her developmental disability was, but there is actually a name for her condition that you found.

SENIOR: Coffin-Siris syndrome no. 12 – and if I had had her genetically tested as recently as four years ago, I wouldn’t have known that. They just found this particular variant.

MOSLEY: It’s a recent – really?

SENIOR: Yeah. Yeah. It’s that recent. Coffin-Siris syndrome they’ve known about for a while. It’s been around. It was given its name, I believe, in the 1970s. There were certain gene mutations associated with it. But this particular gene mutation, this variant, was not discovered until 2020. And at the time that the researchers found this variant, there were only 12 cases in the world. By now, I think there are probably anywhere between 30 to 50. So with my aunt that would make it, like, 31 to 51, you know. And my aunt has to have been, like, the oldest person in that group, right? I mean, it’s just – when I went on a Coffin-Siris Facebook page and I wrote that my aunt – at the time I joined, I guess my aunt must have been 70, or maybe she was 71 – they all were so excited about her age and had a million questions for me. It was something…

MOSLEY: Right, because all of them had children. These were all parents…

SENIOR: Exactly.

MOSLEY: …In this Facebook group.

SENIOR: Yeah.

MOSLEY: It gave you a lens, though, into other ways your aunt might have been able to live if she were born at this time.

SENIOR: Oh, boy, did it ever. And it’s the reason I had her genetically tested in the first place. What I was really interested in was creating – and it was going to be artificial, but some kind of counterfactual. What if she had been born much more recently? What kind of life could she have possibly had? Look. There, as I said, are barely any people on the planet who have this variant. But it just so happened there were, like, 50 people on this paper that discovered the gene mutation. I just started systematically calling all of them – right? – like, one after the other, and emailing them. And I finally found a woman who had this – it was such curious good luck. There happened to have been four kids in her database in the middle of the country, all in the Kansas City area. Two of them had microcephaly like my aunt. And one was 7, the other one was 3. And I wanted to see the 7-year-old because then you could see, kind of further on down the line…

MOSLEY: Right.

SENIOR: …What this looks like, you know, in – when did I visit her? This year, 2023. Yeah. So I found her. I found, like…

MOSLEY: And did you find – yeah, you found her. And what was she like?

SENIOR: Oh, God. So I have to start with a very broad disclaimer. Look. No two people – even if they’ve got the same gene mutation, the same variant, they are not going to express…

MOSLEY: The same.

SENIOR: …In the same way. No.

MOSLEY: Sure.

SENIOR: This said, she started out very similarly, but had all this aggressive intervention. So, got PT – you know, physical therapy, speech therapy, occupational therapy, has this unbelievably dedicated mom, just this force to be reckoned with. I think I said that she had the kind of the concentrated energy of a honeybee. Her name was Grace Feist. That’s the mother of this little girl named Emma – who reads every book on emotional self-regulation, on how to teach math, on how to teach reading, homeschools her. She happens to be part of this…

MOSLEY: She’s devoted her life to her. Yeah. She’s devoted her life to the kid.

SENIOR: Devoted her every waking minute. So with the right kind of intervention, aggressive intervention, when the brain is still super plastic and forming all of these important connections, you can do an awful lot, an awful lot more. And we don’t know what my aunt at 2, 3, 4, 5, 6, 7, 13, 17 would have been capable of. We don’t know. All I can tell you is this. She went off of a very narcotizing antipsychotic that wasn’t doing a darn thing for her, right? I mean, they were narcotizing everybody within an inch of their lives, just sedating them lazily way back in the day. When they finally took her off that useless antipsychotic in the ’90s and put her on something else, my aunt’s vocabulary suddenly exploded, and that was when she was in her 40s.

MOSLEY: I’m wondering. You know, the practice of institutionalization seemed to be so painfully common for a period in our nation’s history, as you write. I mean, we’re talking whole generations. Were you able to get a lens or a scope of the magnitude, based on your reporting, how common this narrative is?

SENIOR: Very. And because it was such a stigma, because it was such a dark secret in families, only when I started just rooting around did I learn Arthur Miller had a son with Down syndrome whom he sent away, I think when the – I think his name was Daniel – when he was 4. Erick Erickson, one of the most storied developmental psychologists of the 20th century, had a child whom he sent away. Pearl Buck, Nobel Prize winner, sent her daughter away. She wrote a memoir about it and was very open about it, which was very – it was really progressive. It was very sophisticated and very brave in the – in 1950 to write a memoir about this.

So it used to be that kids were just swept into their communities. If this – if you had a kid who was developmentally or intellectually disabled, they were a part of your world. And they played with the other kids, and that was that. But there were dedicated schools for them starting, like, in the early 1800s and right through the Progressive Era where there was this notion. Oh, with the right kind of asylums, with the right kind of schools, we can cure – that was really how they thought about it – cure these people.

MOSLEY: Wow.

SENIOR: Yeah. And when it became clear that deafness couldn’t be cured, that mental illness couldn’t be, quote-unquote, “cured,” you know, these places became de facto warehouses and jails. And you know what happened once the eugenics movement captured the public imagination.

MOSLEY: Yes.

SENIOR: It was just – I mean, the poor souls in these institutions were doomed. And also, anyone who was born with an intellectual or physical disability were consigned to a diminished life inside these horrible places. They were sent away. So it was really – it was a stain on our nation for so long, until the ’80s, really.

MOSLEY: Jennifer Senior, thank you so much for this article, for illuminating something so personal for the benefit of all of us. I really appreciate this conversation, and I appreciate this article.

SENIOR: Thank you for giving me a chance to talk about it and actually really making me think about this. You know, I thought I would have thought about this in every way, and, of course, I haven’t. So thank you for really pushing me to think about it in brand-new ones.

MOSLEY: Jennifer Senior is a Pulitzer Prize-winning writer for The Atlantic. Her latest piece in the September issue is titled “The Ones We Sent Away.” Coming up, David Bianculli reviews the new season of “Only Murders In The Building.” This is FRESH AIR.

(SOUNDBITE OF THE BAND SONG, “OPHELIA”)

Copyright © 2023 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.