In this bonus episode, Dani sits down with Pulitzer Prize Winning Writer Jennifer Senior about her latest cover story in The Atlantic - ‘Those We Sent Away’ - which explores her own family secret.
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It is extraordinary what we hide from ourselves, and even more extraordinary that we once had 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. Well, I know nothing, absolutely nothing of my aunt's life at all. She is a thinning shadow, an aging ghost. Strange hosell them. We think about who our parents were as people before we made their acquaintance, all the dynamics and influences that shape them, the defining traumas and triumphs of their early lives, and show them compassion and understanding as they age. I was twelve when I learned. My mother and I were sitting at the kitchen table when I wondered aloud what I would do if I'd ever had a desild. This provided her with an opening. Her name is Adele.
That's Jennifer, senior staff writer at the Atlantic. Listeners of this podcast might remember her from a previous Bonus episode, in which we discussed her remarkable Atlantic cover story. What Bobby mcelvain Left Behind, for which she won the twenty twenty two Pulitzer Prize for Feature Writing. Now she's back to talk about her latest Atlantic cover story, in which she excavates her own family secret in a piece called Those We Sent Away. Jennifer had an aunt, her mother's younger sister, who was sent away to a mental institution as a young child. This is a story that many families share, one of hiddenness, shame, and silence that casts an invisible net over generations. I'm Danny Shapiro and this is a special bonus episode of family secrets, the secrets that are kept from us, the secrets we keep from others, and the secrets we keep from ourselves. My first question is you were twelve when you learned, But if you look back, was there anything that you felt was there sort of hovering in the air in your family's home, or anything that you know, obviously supplying retrospect and knowledge to this, but still where you would say there was a sense that there was something that you didn't know.
I have thought about this, and like you said, there is this huge temptation to sort of assign and reprospect, like, oh, yes, of course, I was aware of this, and now it all makes sense. But there are two things that I wrote about that did, of course lead lock into place, which was that my grandfather volunteered at the Westchester Association for Retarded Citizens. They use the word retarded anymore, we should not, but that's what it was called at the time. And oh, of course he was trying to parent in a daily way indirectly. This is all he did every day of his retirement because his daughter was not living with him, So that made sense. My grandmother running off to the local department store and buying Christmas presents when we were Jewish suddenly made sense because my aunt was taken to church and every Sunday and only understood Christmas. I think something else that may have locked into place was, oh, so my grandparents did want more kids. I knew there was something sort of unusual about my mom being the one and only, like there was never any good explanation for it's very rare to comfort across only baby boomers, right, like, that's not a thing. And my grandparents were young when they had her. I guess in Hinze. One thing I will say is that my mother's perfectionism and her control and I read about this, but it had some other explanation, right, that maybe she really did feel this immense pressure to be good enough for two because her own grandmother very artlessly said to her one day, you have to be good enough for two your parents lost a child.
I was very struck by that detail. Your great grandmother, who you referred to as you know, she meant well, I suppose, and had all the subtlety of a light swatter. And you know, your mother's thirteen years old, and your great grandmother tells her that she had to be good enough for two children, smart enough for two children. And your great grandmother is, on the one hand, telling your mother something right, which.
Was a gift because my mother was in the dark. My great grandmother was truly the first person to explain to her what had happened. Like that was, in some weird way, its own perverse gift. It wasn't perverse. My great grandmother leveled with her, and she was the first person to say, this is what happened. You know, you have an profoundly retarded sister. That was the terminology of the day she was institutionalized. It was a family of secrets. No one came through the front door and said this, and then she laid this immense burden on her right and.
Also the burden, I mean, your mother was told that her sister had gone away first to quote unquote walking school because she was severely delayed in terms of her ability to walk. And then you know, when is she coming back? We don't know. And this is very much something that happened in that time, and you know, you write about that so beautifully in your story, but writing about medical professionals saying it's better if people don't know, the instinct to protect the family, the child from knowledge, but in fact it's there. Your mother was working over time to try to figure out where her sister had gone, what was the age difference between them.
Born after years, I mean nearly five, so.
Your mom was a five year old. There's a baby sister. That's the most wonderful thing in the whole world. And as far as your mother was concerned, this was her sister who she adored and could do no wrong. It was perfect and there was no reason to think anything otherwise, because whatever your grandparents were going through was being done quietly and a kind of you know, keeping it from keeping it from your mother. You know, keeping it from the child, which was what happened across the board in those days, but it will leaves the child in that situation is not knowing what's up, what's going on, and sort of attempting to put together pieces of a puzzle.
Yes, I mean, And the question is whether it was even that active. What I wonder about, like, how hard was she actively trying to piece this together or was it more like that she walked around in something between a fog of bewilderment punctuated by stretches of overwhelming pain. You know, she would sort of because at first, as you point out, and as I say, you know, she didn't have any inkling that anything was different about her sister.
How could she?
A five year old knows nothing. And for the first year of my aunt's life, the doctors were insisting, the pediatrician insisted that nothing was different about her. So it took an outside pediatrician to even look at my aunt and bluntly declared to my grandmother that she was and this is a direct quote, a microcephalitic idiot. Right, My aunt had just turned about one, and from that moment on, my grandparents were doing a frantic circuit of all of the cities specialists trying to figure out what could be done. But my mother was kept out of this. And all my mother knew was that there was adorable baby girl in the playpen in the living room or in the crib in her parents' bedroom, and that she had special responsibilities visa her little baby sister. She had to go in and see if she was napping. She wasn't. She'd keep my grandmother company as she was making bottles. She invented games to play with her while she was in her crib. I mean, what five and a half year old or six year old or six and a half year old is going to have any understanding of developmental milestones.
In a child?
Like they're just not. So this all caught her totally by surprise when one day my grandparents said, we're taking Adele toa walking school. But I think for she just went, oh, okay, walking school.
I guess that's the thing.
But you know, as a month's drag by, and she keeps saying well when she's coming home, and then as the years dragged by, and she one day got hysterical and said, how long can it possibly take for Adele to learn? How to walk. This was about a year and a half in and my grandparents, I mean, there were no books to consult, there was no language for them to recruit from to explain to my poor mother what was going on. I didn't look at my mother and say, how actively were you trying to piece this together? Like how aggressive were you in your slothing. You know, my mother every time she mentions it, first of all, it's very pained, and second of all, there's so much confusion in her voice when she relives it for me that it just sounds to me, frankly, like it was very, very over whelming. And also that she sensed on some level that asking the question was causing her parents' pain. And I think she intuited early on that this is a painful subject and I am going to be a good kid. I'm not going to create any trouble. I am going to behave impeccably. And even before my great great grandmother very clumsily said to her, you have to be good enough for.
Two, you have to be perfect for two. I think even before.
That my mother probably had some sense that she was going to stand sideways and get.
Out of the way.
Well, I mean, it's fascinating. First of all, what children are capable of absorbing without necessarily knowing or consciously knowing, or certainly intellectually knowing. You know, we talk a lot on this podcast about the phrase psychoanalytic phrase, the unthought known. You know that with is so dangerous to think that you never actually think it, but on some deep level you know it. And you know, you used a phrase a little while ago, the fog of bewilderment, And you know, that makes so much sense to me, that fog, and that's what you're describing in a way. You know, I don't know, but I would doubt that your mother ever sort of sat down and had a little talk with herself at age nine or ten or seven of you know, I'm going to be a good girl, but she internalized that memo.
I think that's right, and I think if you want to go to the unsought known, the question is like, Okay, this is my grandparents felt like what they had to do because it's a source of shame to have a child like this. Right, it means that either there's something wrong with your genes, it's some kind of religious punishment, right, whatever it is, for whatever reasons, and I'll you know, it's the nineteen fifties. There's some imperative to assimilate. Among Jews, there was probably a double imperative to assimilate. My guess is that, like, what did they do? They nailed this beneath the floorboards, right, So for my own mom, what was scratching underneath the floorboards of her consciousness? Right? Like what unthought known was there?
Right? Like she probably on some level knew something she had to.
I mean, she did have other families to compare her own to. And I just found out from my mother's first cousin that somebody else in their family was pregnant and at around the same time as my grandmother. I wish i'd known this before I wrote the story. It kind of kills me that I didn't. But someone else in my family was pregnant at the same time, and they gave birth the practically at the same time, and that little girl was born and grew up in a perfectly kind of typical trajectory, right, hitting all the milestones and all the beat's never left house. My mother must have put something together. And at some point the kids in the neighborhood were gossiping and being cruel and saying I heard that your sister was at reform school, right, like, so who knows what kind of I didn't ask her about the unthought known either. It's funny I was getting my own cues from my mother about what was safe to ask.
Truly.
It's not that I'm not a thorough going, you know, interlocutor or you know. I asked a lot of questions, but like I obviously was like being very delicate with my own mom when I was talking to her.
Well, it makes perfect sense. I mean, it struck me that there's, first of all, a really kind of uncanny parallel age wise from when she found out, you know, and then what I found out and when you yes, yeah, I mean you were twelve when you learned and you asked the right question, I mean, or you it wasn't really a question. You were musing about what you would ever do if you were to have a disabled child, and it was like a seam opened, you know, within your mother at that particular moment, and she just said it. And that's somewhat different from whatever damn burst in your great grandmother to have said that to your mother. But you do find that out at the same age. And there also is I think that feeling of where there's great pain in a family, or a child senses that about a parent, including a grown child sensing that about a parent. There's this delicacy or this feeling of I love you and I don't want to cause you pain, so I'm not going to go there. So, for instance, when you go with your mother to visit Adele, I don't think it was the first time that you went, but the more recent time, because you the more recent time you were going both as a daughter and a niece and a reporter. The first time you were that's right, you were a daughter and a niece and just wanted to see for yourself what was you.
Know, right, I was only twenty eight, right.
So but this time you had your recorder on and one of the things that you note in your piece is how much silence there was in the car.
Yep, so much.
Silence and also so much I mean I would have said, like not denial, but God, what would be the right word deflection? Maybe that's the very various two things to pull me in on. And it's like the perfect transition because exactly there I am. We have a ninety minute car ride, and my mother at any point can be like, wow, I wonder what this is going to be. Like, I have not seen her in twenty one years, and I've only seen her three times ever in my adult life. You know, my mom went forty years with not seeing her sister again. She went from age six to age forty six and then saw her only three times, not particularly successfully. You know, the visits were awkward. My Anna was living in a different group home at the time, so this is a brand new group home, and she's not wondering a lot about In fact, not only she not wondering a lot about this, she is talking about something else entirely. She is telling me all about the new necklace making project that she is embarked on. And I am kind of sitting there in disbelief, like, and my tape recorder is running, and it's not a lot of like I eventually like turn it off because it's just like stuff about necklaces.
Right.
It was crazy.
I only had about fifteen minutes conversation.
With her about this, right, and so I have always known and I was very nervous about as seking my mom whether to do this. Right, Like I said to her, you don't have to come with me. I just truly want to meet her. I really want to see her. I want to write about her. I hope this is okay. Please don't feel like this because I want to go. It means that you have to go. I understand that you have all of these reasons that you have decided that you are going to. You know, I don't judge at all, like the kind of decisions you've made around this. This is like a defining trauma for you as a kid. But you know, and she's surprised me by being very open to it and saying, no, let's go, let's go together, you know, almost like some part of her I thought wanted it, But then when we got in the car, I thought, no part of her wants this. I think she was just this portrait of ambivalence, right, And it made it made the reporting really us, you know, and really hard. And I think it's one of the reasons that like I did it as a reporter, because I felt emboldened to ask slightly more challenging questions.
We'll be right back.
You know.
It strikes me that your mother, once she knew as a thirteen year old, and also once the sort of whisper campaign that must have always been there, that game of telephone that happens in suburban neighborhoods or all neighborhoods or among all people.
This is Flatbush.
We're talking about a serious city neighborhood.
Yeah, yeah, you know. So eventually the kids are cruel and your mother begins to say to tell people that she's an only child. And it just strikes me that the work emotionally and psychologically that had to go into, you know, like the heartbreak of that this is what I'm going to say, and this is how I'm going to live. It is how I'm going to live my life moving forward, because there didn't really seem to be any other option. And so then all of these years later, there she is, you know, in the car driving with you, and yeah, she's talking about necklaces because it's it's like the thirteen year old saying I'm an only child. The degree to which we have to work over time to put something that won't be easily boxed up in a box or under the floorboards, as you say, and the courage that it takes to confront it, which it struck me reading your piece, and the sort of trajectory emotionally that your mother goes through. Over the course of the story, it reaches a point where it is no longer in any way Adele is not in a box for her anymore. Adele is not a person with a diagnosis, a person who was sent away and who isn't able to recognize her own parents, her own sister. It becomes something else entirely.
Well, my mother said something very interesting to me at one point, which is that she was led to believe that Adele was so intellectually compromised that she was essentially a vegetable. That's almost verbatim what my mother said to me, and.
So I think.
It was almost giving her permission to say, I don't have a sister. My sister is not sentient, you know, in the way that you can like make the decision, Oh, if somebody's a vegetable, you know, like end of life care, Like, why would we want to, you know, sustain some I mean I really think on some level, that is the way my mother was trying to think about her, even though what's fascinating is that she had plenty of evidence to the contrary. She saw this little girl who was scooching or out in her own platepen following her when my mother, you know, well, as my mother shouted here, baby Adele would scooch to different corners of the crib and smile or acknowledge her. So Adele was plenty interactive, or certainly interactive enough, but yet at some point she allowed that story, a different story to kind of become the story. And my god, I don't think she was a thirteen year old.
When she told people she was an only child.
I think it was starting from the time she was like six and a half or seven, her her sister gets sent away, and I having being completely bewildered by it when people started asking, she just said, I'm an only child because no one else was in the house.
And my suspicion is.
That my grandparents encouraged her to say it. You know, the only question if somebody asked me this recently, and I was embarrassed to not know the answer, it was a great question. I can't believe I didn't think to ask my mother. In my grandmother's obituary, how many kids says it say she has? And my grandmother was not a person of any note.
I'm sure the.
Obituary that ran was the little squib that you paid for right in the New York Times or in the local paper. And I'm sure my mom paid for the squib, and it would have been my mom who was in charge.
And the question is what decision would my mom would have made? Would have made?
Would She has said that my grandmother had one kid or two And I sat there, like completely unable to answer that question. For the life of me, I could not tell you. Years ago when she saw her sister with her mother when she was already in her forties, and it was like the first time she saw her sister as an adult. Forty years later, she came home and she wrote like this little mini essay for herself, was saying, I have a sister. And I asked her, why did you write that?
Was it?
Because it was almost like this sense of unreality and you just wanted to make it real. And she said, I wanted to admit it to myself. This is some secret that I had been hiding for all these years. She used the word admit, which I think is so fascinating, you know, like it was a confession of some kind.
To herself in a way. I mean the tagline for this show is the secrets we keep, the secrets sircut from us, and the secrets we keep from ourselves. And I always find the most fascinating, strange, uncanny, resonant kind of secrets, the ones that we are somehow able to keep from ourselves until we no longer can.
That was what she did. I mean, she had this clan DestinE sibling, you know, and it was she she was keeping this knowledge from herself.
I think on some.
Level in order to function. I mean, I think it must have been too hard to process otherwise. But she told me something very interesting that I had for a long time in my story and then ultimately cut because she was so ambivalent about it. But for your show, and for you, just because you're so psychoanalytically inclined, you'll find this whole internal debate that she had about it fascinating. She said to me that when she was in psychoanalysis in her early twenties, my mom, her psychoanalyst, said to her, do you think that as a child you walked around in terror that if you did anything wrong you would also be sent away, that you would also be sent to the equivalent of walking school. If your grades weren't good enough, or if you didn't hit a particular milestone, if you were clumsy in sports, if you were this for you or that, you know, would you have been sent away? And I grew up with my mother telling me that she believed this, that she thought and like if she wasn't good enough, she'd be sent away. That she labored under this misapprehension. And I brought this up with her in the car and she said, oh, you know what, I think. I think my shrink was wrong about that. I think my psychoanalyst is wrong. I don't really think so. I don't think I was a perfectionist for that reason. It probably had much more to do with like what nanny said to me. You know that she told me that I'd be good enough for two But I don't think I ever really feared that I'd be sent away. But maybe her psychoanalyst was right. I mean, I don't know. You know, my mother is clearly not sure. At some point when I was younger, that was the story I was told by her, but she recantidate when I, you know, asked her in the car. She had that she thought that her psychoanalyst's hypothesis was right, and she didn't even present it to me was when I was a young woman as her psychoanalyst's hypothesis. She said, so, you know, I had this sister who was sent away, and so I was definitely afraid when I was a kid that if I did anything wrong, I would be sent away. And when I brought this up there in the car, she said, well, I'm not sure that's true. It was my psychoanalyst who came up with this as an idea, and I think you just put it in my head and it sounded very tidy, and it sounded very plausible. But you want to know what, I'm not sure it's right.
I mean, in the absence of, you know, actual fact checkable knowledge, these are narratives that we can supply right. So for a period of time in her life, that was the narrative she supplied correct, and then later in her life it became no, I don't think. I don't think that was it, which seems very right to me in terms of the way that our stories and our memories and our relationship to whatever the you know, to whatever is at hand shifts and changes over the course of our lives. Absolutely This was, from the standpoint of what we understand today, just shockingly common in the nineteen forties, prop nineteen fifties, nineteen sixties if a family had a child who was severely disabled intellectually, you know, and or physically, that they would be sent away and there were and never spoken of again and erased. And there were famous examples of people who did this, ranging from the Kennedys to Arthur Miller and pearlss Buck. This was what was considered the thing that you did. And some families dealt with that as a secret differently than others, or the secret sort of comes out in certain I mean Miller never wanted to write about it, would never wanted to talk about it.
It was never visited.
And never visited. And pearlss Buck ends up writing about it in her memoir. She writes, I felt as though I were bleeding inwardly and desperately. So Buck faces head on at a certain point, just the absolute agony of you know, what it is to institutionalize a child, and so it ranges. But I think what all of the families of that time of sort of post war America, and as you say, the shame of having a child who is severely disabled. There's just this feeling that this is what you do, and the doctors and their white coats and their certainty, and the way that doctors were seen at that time as being god like. So one of the things that I'm wondering about your piece begins with your husband telling you to read this tweet that went viral. And the tweet is by someone who he writes about his son, who is his twenty fifth birthday. He's never said a word in his life, but has taught me so much more than I've ever taught him. And this tweet goes viral and your husband points out to you, and you're scrolling through and you're reading some stuff, but it doesn't occur to you right away why you're going down the rabbit hole other than wow, this is really interesting that this tweet went viral. And I find that so fascinating that it took you a bit right to realize why your husband had pointed out that tweet to you and why you were immersed in the story.
So one important thing to point out the reason that went viral is because there was a lot to read in response to the tweet. What happened was that tweet unleashed this outpouring from parents all over the world of pictures of their own nonverbal or minimally verbal children, so that what I was scrolling through was picture after picture after picture of these beautiful kids, some young, some old, some full fledged adults, whether much older parents or their siblings. And some were joyous and some were goofy, and some were silly, and some were serious, and some were bad as I mean.
It really ranged these pictures, but.
What they all had in common is that, like, the kids were all super characterful, right, they were all just these pulsingly alive portraits. And yeah, it is weird because, like everyone in my family, I had been trained to sort of not think about this. It took me about a half an hour of scrolling before I went, oh, my god, there is somebody in my family who meets this exact description. And the difference is that I don't know her, and I don't have a single picture of her nothing, and there's been no pictures that I've ever seen for her. And in fact, when we had to find art for this story, you know, the art department was saying, do you have any pictures of her from when she was a baby? Or anything. My mother didn't think she had a single picture of Adele and lo and behold there was one of my grandparents and her, and it's in the story.
It's the only thing there.
Yeah, I've been staring. I've been staring at it while we're talking.
Yeah, yeah, I mean it's and like, what's so interesting about it is like my grandmother looks so impeccably turned out. She's got her you know, her Sunday best on. I mean, she's got the hat and the nylons and the lipstick, you know, and my my and her and my grandfather was very happy and relaxed with you know, Adele in the middle. And uh, what you were saying.
Too about that wide range.
I mean my grandparents visited her every weekend. They they didn't just sort of send her away. My my grandparents had fallen in love with their child and were shattered to be told that the best thing for her was to be put, you know, in an institution that was and and the justification was always it's not just that it wasn't just that it was best for your family, that it was best for the remaining sibling, which looking at my mother, I mean it would have been very hard to have somebody like a Dell around. But I don't know whether it was best for her. I think an open question. There certainly wasn't the infrastructure to sort of take care of Adele. Would have taken a lot of work on the part of the family, and they didn't have any money. They couldn't have had sourced this but her care. You know, they couldn't have had Brown Mclock custodial care, which Adele may have needed. But they also said that it was best for Adele, which it most certainly was not. This was this like gothic mansion of horrors. I mean, it was terrible Willowbrook where she was ultimately institutionalized. But if you're going to look at the broad spectrum of like people in denial, you know, who never saw their kids and never talked about them, like Arthur Miller, to people like Pearls Buck, who very bravely wrote about their children. And by the way, her memoir, she wrote a whole memoir that was just about that. It wasn't a memoir about her life. She wrote a memoir only about having a child. It was about that called the child who Never grew, and it was about the pain of institutionalizing her, which and she waited until she was nine nine, and when she was in Japan, everybody thought, like, what, you're gonna put her in an institution. Nobody there did that. Americans did that. Americans did that.
That's interesting. Yeah, yeah, that's a whole other subject. I mean that makes me wonder about the nature of how we how we think of family, or how we think of generations.
And we'll we do it with very elderly, right, I mean, we do it with it. I mean it's terrible.
We'll be back in a moment with more family secrets. There's a wonderful photograph in your piece, just amazing, of your mother and Adele on the day of that visit, not the nineteen ninety three visit, but the visit when you're starting to report this piece in.
Twenty twenty one.
Your mother has she has an n ninety five mask that she's pulled down so that you can see her face, and she and Adele are standing together, and on the one hand, they couldn't look more different. Adella is much smaller, and your mother looks like she could walk, you know, out the door and straight into you know, lunch at you know, a lovely restaurant and Adele doesn't. But they're both wearing red sweaters, and they're both wearing the aforementioned beaded necklaces because each of them has gotten into beating.
At the exact same time, Yeah, at the.
Exact same time in their lives. And there also are so many other similarities between them. They both needle point, they both are neat freaks, they're both musical, and all of this kind of keeps on merging. What did that feel like for you during that visit? You know, on the one hand, you have your your reporter's hat on, and at the same time you are a daughter and a niece and a member of a family who is experiencing this kind of amazing moment.
Yeah, I nearly died. I mean, do you remember that very famous New Yorker story about twins and they were looking for the first time. I think it's the Minnesota Twins study where they were looking at trying to string a part nature and nurture and looking at twins who'd been separated, and there were all these stories of like, you know, brothers who hadn't seen each other for forty years, and identical twins and they'd meet up and they would both be wearing yellow eyes odd shirts, and they both had ex wives named Gail. And you know, I mean, I'm making this up, but you know, nutty stuff like that. I felt a little bit like I was looking at that. Also that those darn necklaces, which were like the bane of my car ride, Like moms stopped talking about the necklaces suddenly, that it becomes like the most salient thing because there is Adele wearing a necklace that she's made, while my mother has a necklace.
That she's made.
And the first thing that we get, we're shown in her bedroom is like the drawer full of all the necklaces she's recently been making, you know, and that's a photo illustration in the magazine. I mean, it kind of blew my doors off, you know. I couldn't believe what I was staring at, and that they both were wearing these this bright red The thing that really killed me though, was that they're both musical, Like it would be okay, you know, my grandfather was in the Greek Club. There's a story about him, like having been in the same Greek club as like Frank Sinatra, you know, like okay, so they're musical, right, Like, maybe that's in the family. Maybe there's like some kind of constellation of jeans that coach for that sort of thing, even like being you know, fuxing with your hands, needle pointing and making necklaces. Even that I kind of grock. But the fact that they are neat freaks. Like, on the one hand, I was like, Okay, So I always assume that my mom was highly controlled because she had been traumatized and as a consequence, you know, she deeply traumatized.
As a kid, her sister gets.
Spirited away, no explanation, it's not discussed, and my mother makes some unconscious decision for the rest of her life that she is going to control everything within her power. Right, And then they meet Adele, and Adele wants to control everything within her power. And not only that, but they are controlling everything in the exact same way. It all revolves around the kitchen. If you get up to try and clear the dishes and bring them into the kitchen, my mother will like rush you out of the kitchen because she is the only one who knows how to load the dishwasher, and she is the only one who knows where things go. If you try and make a salad, she will start instructing you about the oward away to cut cherry tomatoes. My mother has like really fixed ideas about cherry tomatoes, you know, like she's got a cherry tomato philosophy. And you know, I mean so and that is Adele. You know, like glasses have to face a certain way, right, like just everything nothing can be out of place. She gets very agitated things are like not just so. And I thought, what is there like a protein coating for this, Like what is going on? And I thought, Okay, it must just be like it must just run in the family, right, even though I don't remember my grandmother or my grandfather particularly being this way. And then the daughter of the woman who was like the mama bear in the house where Adele lived. And so the daughter says to me one day, she knows Adele very well, right, she knows all the residents of the house very well, she says to me, because I'm telling her, like it's so weird that they're both me pretty excited to assume that my mom was like a need free because she was born of trauma. This is a trauma related trait. And the daughter says to me, well, how do you know that Adele wasn't traumatized? Maybe it's born of the exact same thing. And I sat there in Chasten's silence for like eight seconds. You can just hear eight seconds of nothing on my table order, right, like just me going oh yeah, oh my god. You know, because of course I am sure that all of those years of living in these hellish institutions, right, I mean, she lived in Willowbrook, which was exposed by Heraldo Rivera in They're in nineteen seventy two as being just and RFK visited it in sixty five and called it a hell hole. It was just this horrible place, people walking and wailing, naked on the floor, all everybody understimulated. It's reeked of urine and feces. Not only unhygienic, there was just it wasn't a school. It was built as a school, it wasn't a school. There was nothing there and nothing for the reason it's to play with, nothing for them to do all day and only two you know attendants per you know floor for like you know, one person for eighty people or fifty people. You know, they were force fed quickly. I mean it was just there was ghastly, ghastly, and then my aunt was moved from there to a different institution and it was just as bad and just as grim And that's where my aunt lived. And I don't know what I mean. In addition to just being underloved and underprotected and understimulated, she may have been physically abused. She may have been sexually abused.
I mean, we don't know.
We know nothing. She can't explain it or convey it. All we know is that every so often my aunt would say stop that you're hurting me. She would scream it. And they thought all the doctors were training her thought, well, she must be psychotic, this is some kind of auditory hallucination. But why wasn't that just PDSD. Why wasn't she just re experiencing trauma? You know, who knows. I mean, maybe she was just having like a horrific memory.
When she shouted stuff like that.
These similarities between my mom, like the meat nick stuff, the control stuff, it might just be trauma related stuff. I mean, you know, I'm not a need nick. I mean, you know, I'm like the Oscar Madison to my mother's Felix. And by the way, just talking about the generational stuff people were sent away.
Right through the.
Seventies, this continued, This just kept on going. It really wasn't until the eighties that people would even countenance the idea of keeping neurodiverse kids at home, and that the infrastructure first kind of became available where you know, day programs were available and where I don't know. I think it was probably in the nineties that kids were mainstreamed into public schools. The public schools started taking them. I don't know when, but at some point the states started providing free occupational therapy and physical therapy and speak therapy. It took a long time for you know, anything like the infrastructure.
To be born.
No, it's one of the ways I can count on one hand one of the ways that our world has improved.
Now.
I really want people to read your piece and not to tell the whole story of it. But there were no diagnoses. There was no sense that there could be or should be diagnoses. It was like one big basket of a catch all for beyond hope, beyond redemption or difficult right.
Yeah, like like you know, filled with some kind of panic or anger that can't be expressed right, something.
Right, and that needs to be managed by sedation and by sort of these extreme measures that make any kind of real developmental progress absolutely impossible. You know, And a really moving part of your story is that it occurs to you that you might be able to get an answer to what in fact was responsible, what mutation, what genetic mutation, what condition was responsible for Adele's being, you know, as as developmentally impaired as she was. You do find out that she has a very very rare genetic mutation. And at the time you discover this, there are only twelve people on record who have been diagnosed with this, and then you know, over the course of even just your reporting this piece, there start to be more people diagnosed with it. The condition is called Coffin Cyrus syndrome twelve. And then you do something that I found so moving and so fascinating, which is you want to meet a kid, you know, someone growing up today, someone being raised in a very very as different from the way that Adele spent her life as is imaginable, and just see what the difference might be if a child is raised with all of the possible interventions and therapies at her disposal.
That's right, and it was positively bittersweet.
Yeah, well that's the thing, Jen, I mean, there was this moment that was just like guided me, which was after you've met this girl and her family, her mother. There's this line in your piece, which is I thank Grace and Emma for the gifts and head out to my rental car. I'd last maybe thirty seconds before losing it.
This little girl was just outside Kansas City and her parents adopted her. They had fostered her originally and then decided to adopt her. They'd fallen in love. My grandparents had fallen in love and done the opposite. They'd given their little girl away. And what is amazing is they hand me these presents and then Emma gives me a picture for me to give to my aunt and her mother, who's just this force of nature, looks at Emma and says, do you remember why you drew this picture for Jennifer?
Do you remember why you drew a picture for her aunt?
And Emma, who, of course, because she's benefited from all of these early interventions, can speak in full sentences unlike my aunt. And she says, oh, yes, it's because her her aunt has trouble in school like me and her mother says, that's right, and she says, do you know what your what her aunt has? And what I thought she was going to say was she has coffin cyrus syndrome twelve, just like you. And that's not what her mother said. What her mother said was she also has parents who couldn't take care of her, but found to her a place where someone else can take care of her, just like you. And I just thought, but my grandparents could have taken care of her if they had all the same resources at their disposal. Not only could they have, they would have desperately wanted to, because they, like pearl as Buck, were waiting inwardly and desperately. But they had no choice. They had to give her away. And they were being told to for the good of the baby, for the good of my mother, for the good of the whole family, by all of these authoritative, granite fased doctors. And here is my grandma, a working class woman, no college education, who just swallows hard and says, okay, I mean it just killed me. It just it broke me into a thousand pieces. I mean I just sat in the car and started the ball, you know, I mean it was so hard, I mean and too. It's credit, you know. I told my editor about it. I told him about the moment, and he cut me off before I even finished it, and he said, how long did you last before you burst into tears? How unfair is all of this?
You know?
You just you weep for everyone involved, for my aunt, for my mom, for my grandparents. We are no longer year.
Jen, thanks so much. This has been a really remarkable and powerful conversation.
I feel the same way.
I just feel so lucky to have somebody like you asking me questions. This kind of conversation is just so different from me any kind of conversation I have had or will have with anyone else. So just thanks for this project.
I feel like it's a gift.
You know, it's a big g.
This was a special bonus episode of Family Secrets. As we work on the next season, which will drop in early November, keep an eye and an ear out for more special bonus content. Thanks for listening.
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