WEBVTT 00:00:00.000 --> 00:00:01.000 [MUSIC FADES IN] 00:00:01.000 --> 00:00:02.000 This is "In Conversation" from Apple News. I'm Shumita Basu. Today, the dark history of institutionalizing people with disabilities. 00:00:02.000 --> 00:00:03.000 [MUSIC FADES OUT] 00:00:03.000 --> 00:00:04.000 [SOMBER MUSIC] 00:00:04.000 --> 00:00:05.000 When Jennifer Senior was 12 years old, her mom finally told her the truth about their family. Her mom wasn't, in fact, an only child. She had a sister, a younger sister, named Adele. 00:00:05.000 --> 00:00:06.000 I was overwhelmed. I mean, at one point I started crying because I think I also thought, in some way, "Wait, like, I have an aunt? Like, I want to know who my aunt is." 00:00:06.000 --> 00:00:07.000 Jennifer learned that her aunt Adele had been born in 1951 with an intellectual disability and had been institutionalized before her second birthday. She had lived almost her entire life separated from her family. 00:00:07.000 --> 00:00:08.000 I remember being made unbelievably sad by this fact and grasping immediately that this couldn't have been easy for my mother or my grandparents. 00:00:08.000 --> 00:00:09.000 Jennifer grew up not knowing much else about her aunt Adele, aside from a single visit she and her mom paid her in the '90s. But a few years ago, Jennifer decided she wanted to know more. She needed to know, to understand her aunt's life story. And what she learned helped piece together the picture of not just her family tree, but the broader history of institutionalizing people with disabilities and how it ultimately harmed so many families. 00:00:09.000 --> 00:00:10.000 Jennifer Senior is a Pulitzer Prize-winning journalist, and she wrote this story about her aunt's life for "The Atlantic." It's a deeply moving piece about regrets, reconnection and reimagining what Adele's life might've looked like if she'd been born today, under very different circumstances. I asked Jennifer to start by explaining how Adele was sent away in the first place. 00:00:10.000 --> 00:00:11.000 [MUSIC FADES OUT] 00:00:11.000 --> 00:00:12.000 What's so interesting is that it would depend entirely from whose perspective you're telling this story. If you ask my mother, she desperately wanted a sibling. When she's four and a half, her wish comes true. You know, her mother comes home one day with a baby girl. And by the way, people said so little in those days that my grandmother didn't even tell my mother that she was pregnant. She just said, "I've gotten really fat, haven't I?" 00:00:12.000 --> 00:00:13.000 Oh, wow. 00:00:13.000 --> 00:00:14.000 And my mother said, "Yes." I mean, yes, this is how little people discussed anything in those days. 00:00:14.000 --> 00:00:15.000 Yeah. So she really did just come home one day with a, with a baby. [CHUCKLES] 00:00:15.000 --> 00:00:16.000 Yes, with a baby. My mother was delighted. She had been gifted a baby sister. It was a girl. That was all she wanted. And my mother had all of these responsibilities. She, um, was the designated person who got to go into the bedroom where the crib was and see if Adele was asleep. And she made up a game that she played with Adele called "Here Baby," where she would run around the crib, you know, and having Adele sort of follow her with her eyes or scooching around if she could, I don't know. And she remembers my grandmother preparing bottles for Adele. 00:00:16.000 --> 00:00:17.000 And so, from my mother's perspective, she had this adorable little baby sister. From my grandparents' perspective, it was very different. The moment Adele was born, my grandmother swears Adele seemed like she was in pain. She was inconsolable. She kept crying in a cry that my grandmother found unusual, and maybe a little unnerving, a little peculiar, and it was relentless. And she kept going to the doctor and saying, "I think something is the matter here. I think something's different here." And her doctor kept saying, "Adele's fine. Nope, this is normal." 00:00:17.000 --> 00:00:18.000 And just to place us on the timeline a bit, this was in 1950s? Early '50s? 00:00:18.000 --> 00:00:19.000 Adele was born in 1951. 00:00:19.000 --> 00:00:20.000 Yeah. 00:00:20.000 --> 00:00:21.000 And in 1952, around Adele's first birthday, in the summer, my grandmother had a sore throat. She went to a local doctor, up in the Catskills where they were on vacation. So my grandmother shows up at this doctor, and the doctor, rather than inquiring about my grandmother, took one look at Adele and said, "Is that baby getting the care she needs?" And my grandmother said, "What are you talking about?" And the doctor said, "That child is a microcephalic idiot." Microcephaly is a condition meaning having a smaller head, but idiot was an actual term back then. 00:00:21.000 --> 00:00:22.000 Right. 00:00:22.000 --> 00:00:23.000 These were textbook descriptors, right? 00:00:23.000 --> 00:00:24.000 Right. 00:00:24.000 --> 00:00:25.000 And so, I think, at that point, they were advised by absolutely everyone, "She has no potential for growth. She is uncultivatable. She will never outgrow her diapers. She will never learn to walk and talk. She will give you no joy," which is ridiculous because she was already providing joy. But, you know, "The best thing you can do and the best thing for your daughter and the best thing for her, for her, is to put her in a school, in a dedicated institution that knows how to raise children like this." 00:00:25.000 --> 00:00:26.000 And that's what your grandparents ended up doing before your aunt Adele, even turned two years old. 00:00:26.000 --> 00:00:27.000 Yep. 21 months. 00:00:27.000 --> 00:00:28.000 They sent her to an institution called Willowbrook State. 00:00:28.000 --> 00:00:29.000 Yep. 00:00:29.000 --> 00:00:30.000 What have you been able to piece together about Willowbrook itself, but also your aunt Adele's experience there? 00:00:30.000 --> 00:00:31.000 Well, Willowbrook, if you say it to people of a certain generation in New York, they will just go, "Brrr, oh my god." You know, they will recoil. Because it became the signifier for everything that was wrong with the state institutions dedicated to the intellectually disabled and I'm guessing also the mentally ill. But Willowbrook was the subject of a very famous exposé by, of all people, Geraldo Rivera, who was, at the time, an unknown reporter, who did a 30-minute documentary for "ABC News." He went in unannounced. He got a key from a whistleblowing doctor who was appalled by the conditions there. 00:00:31.000 --> 00:00:32.000 [START ABC NEWS ARCHIVAL CLIP] 00:00:32.000 --> 00:00:33.000 The doctor had warned me that it would be bad. It was horrible. There was one attendant… [VOICE TRAILS OFF] 00:00:33.000 --> 00:00:34.000 [END ABC NEWS ARCHIVAL CLIP] 00:00:34.000 --> 00:00:35.000 And what he found were all of these just kids and some adults wailing and naked on the floor, rocking in their own urine and feces, with virtually no toys, no nothing, just linoleum. 00:00:35.000 --> 00:00:36.000 [START ABC NEWS ARCHIVAL CLIP] 00:00:36.000 --> 00:00:37.000 They were making a pitiful sound, a kind of mournful wail that it's impossible for me to forget. This is what it… [VOICE TRAILS OFF] 00:00:37.000 --> 00:00:38.000 [END ABC NEWS ARCHIVAL CLIP] 00:00:38.000 --> 00:00:39.000 It reeked. It really smelled of human excrement and waste. There were only two attendants per, let's say, 50 patients. The children there were each given about two and a half minutes to eat because they had so few attendants and these kids in the main could not feed themselves. So they would just be force fed gruel before moving on to the next patient. It was just a gothic palace of horrors. It was a nightmare. 00:00:39.000 --> 00:00:40.000 [START ABC NEWS ARCHIVAL CLIP] 00:00:40.000 --> 00:00:41.000 A real-life horror story of lack of attention, of filth, and of children living as animals live an uncivilized, inhuman existence. But our intention is not just to horrify, but also to demonstrate that it doesn't have to be that way. 00:00:41.000 --> 00:00:42.000 [END ABC NEWS ARCHIVAL CLIP] 00:00:42.000 --> 00:00:43.000 People knew this. Senator Kennedy, Robert Kennedy visited it in '65. But it wasn't until people actually saw it on TV that suddenly there was real political will to do something about it. 00:00:43.000 --> 00:00:44.000 Sure. And by the time that Rivera report came out, that was in the early 1970s. So that was a little while after your aunt Adele had first been sent there. 00:00:44.000 --> 00:00:45.000 She was no longer there. She'd been sent to another one because my grandparents had moved to a suburb, so they moved their daughter to an institution that was closer. But the bottom line is, I'm sure it was the same when Adele was there. I can't believe there was much of a difference between her formative years there. 00:00:45.000 --> 00:00:46.000 And what were you able to piece together from what it was like for your aunt when she was at Willowbrook? I mean, I, I understand that you got your hands on some number of assessments, like official assessments. 00:00:46.000 --> 00:00:47.000 Yeah, the documentation is actually really sparse. There was just a couple of paragraphs from there and a couple of paragraphs from the subsequent place that she spent time at, which was no better. But what the assessments said were indeed shocking. When she entered Willowbrook, they determined that her IQ was 52. And it said that she could sit on her own, that she could hold the bottle on her own, that she could say "mama." 00:00:47.000 --> 00:00:48.000 And then seven years later was the first time they re-evaluated her. And they said even by her own standards, she had significantly declined. Embedded in their assessment was like a tone of total shock that she really didn't have much of an awareness of what was going on around her, she couldn't really identify everyday objects, and her IQ had dropped to 27. It had nearly halved. 00:00:48.000 --> 00:00:49.000 You look at it and you go, "Well, yeah, no duh." She was criminally neglected. She was under-stimulated and under-loved. Is it any wonder that she didn't develop at all? I mean, there was a moment in the Geraldo Rivera documentary where they talk about the patients fighting for a scrap of paper if it falls on the floor, so that they could just turn it into an object to play with. I mean, she had nothing. 00:00:49.000 --> 00:00:50.000 Wow. How many years did your aunt Adele spend in that institution? 00:00:50.000 --> 00:00:51.000 She was at Willowbrook until she was probably 13 or so. And then she went to Wassaic and left when she was 29. She was in an institution for three decades, basically. Three decades of zero stimulation and not one molecule of love, except for the weekly visits from my grandparents. 00:00:51.000 --> 00:00:52.000 And I should say, I mean, you write about this in your piece, of course, but this is not an uncommon experience for its time. This is what many medical professionals were advising parents of children with intellectual disabilities. They would say, send them to an institution. It's for everyone's best interest. So, can you say a little bit more about what you've learned in your research about this practice that was really common at the time? 00:00:52.000 --> 00:00:53.000 Yes, and in fact, I would go even further. It wasn't many. I think it was almost all. Starting in the 1800s, early-1800s, different asylums and dedicated schools started popping up that tried to quote-unquote "cure physical disabilities and intellectual disabilities" and the quote-unquote "feeble minded." 00:00:53.000 --> 00:00:54.000 And then, the Progressive Era comes along, and it coincides with the Eugenics movement. The Eugenics movement sort of sealed the fate of anyone who was neurodiverse or who had a physical disability. They were sent away. This was just what was advised. And the conditions in these places only got worse after the Second World War. And yet, it was customary at that point to advise parents to send their kids there because the belief was that these kids were lost causes, that there was nothing to cultivate. 00:00:54.000 --> 00:00:55.000 [PENSIVE MUSIC PLAYS] 00:00:55.000 --> 00:00:56.000 By the time Jennifer first went with her mom, Rona, to meet Adele, in 1998, her aunt was no longer in an institution. She was living in a group home. This was only the third time the two sisters had seen each other since being separated. 00:00:56.000 --> 00:00:57.000 It was really intriguing to see my mother become almost girlish. My mother is very… She's this kind of fortress of strength and control. She's, you know, very disciplined, my mom. And she kind of dissolved into this, like, kind of girlish figure and was playing with Adele, and it was very, very sweet to see. 00:00:57.000 --> 00:00:58.000 [MUSIC FADES OUT] 00:00:58.000 --> 00:00:59.000 Even though they barely knew each other, there was this uncanny, undeniable bond between them. 00:00:59.000 --> 00:01:00.000 When we asked to see her bedroom, we were shocked because she had needle points marching along the walls. And my mother, at that point, was in an avid needle-pointing phase. Also, we did discover one crazy thing, which is that my mother was a very serious and gifted musician and had a beautiful voice and studied opera in college and taught music theory, and Adele could sing. On key. And when she sang, she had thousands of words at her disposal. She had no idea what they meant, but like, it was all these church hymns. Because she was taken to church every Sunday. So, I mean, that was bananas. 00:01:00.000 --> 00:01:01.000 Jennifer describes this meeting as a special moment of reconnection. But it was also challenging. Adele was still extremely limited in how much she could communicate. 00:01:01.000 --> 00:01:02.000 The only words that Adele had were yes and no, that we could tell. Those were the only ones she used. So we didn't know how to make conversation with her. 00:01:02.000 --> 00:01:03.000 The next time Jennifer and her mom saw Adele was 23 years later in 2021. Again, the similarities between Rona and Adele were striking. 00:01:03.000 --> 00:01:04.000 Both showed up at the door wearing fire-engine red sweaters and beaded necklaces, chunky beaded necklaces, that they had both made because they were both simultaneously going through a necklace-making kick. 00:01:04.000 --> 00:01:05.000 Adele was in a new group home this time, living with a nice couple of caretakers, the Ayala family. And Adele had changed in some pretty notable ways since Jennifer and her mom had last seen her. 00:01:05.000 --> 00:01:06.000 So different. Oh my God, she was so… She was truly, um… I mean, it broke my heart in a weird way because you could finally see when she was with the right family, if this had been happening to her all along, if she'd been with my grandparents all along, you could see that she was the person she was meant to be. A diminished version. She could have been so much more. 00:01:06.000 --> 00:01:07.000 But, what did I see? I saw somebody who immediately is greeting us at the door and has been instructed to say to my mother, "Hello Rona. I love you." Which totally took my mom by surprise because, first of all, it's two sentences, right? Like, which we hadn't gotten. She was cuddly. She nestled into my mom's shoulder when my mom sang to her. And I almost feel like she knew she was related. She could identify the colors on my shirt. She could count. She could tell us how many fingers we were holding up. She started regaling us with more songs and Christmas carols. 00:01:07.000 --> 00:01:08.000 And we learned about her personality. There were in-jokes. You know, like, the family would say things to her, like… You know, the father, his name was Juan, who ran the house, she called him Daddy. Juan would say, "Adele, who's the turkey head?" And she would say, "Daddy. Daddy's the turkey head." And then she would burst out laughing. 00:01:08.000 --> 00:01:09.000 In all of her years of institutionalization, Adele never received a formal diagnosis. So Jennifer arranged for her to have genetic testing done to see if Adele's condition had a name. The results came back: Coffin-Siris syndrome-12. An incredibly rare genetic disorder shared by a very small known number of people in the world. Jennifer decided to try to find someone with the same condition. And that's how she ended up traveling to Kansas City, to meet a seven-year-old girl named Emma and her family. 00:01:09.000 --> 00:01:10.000 Emma is this charming, bubbly ingenue of a child. And she's a chatterbox. She talks a lot. So, first of all, whoa. [CHUCKLES] She talks a lot. 00:01:10.000 --> 00:01:11.000 Mm. Mm-hmm. Mm-hmm. 00:01:11.000 --> 00:01:12.000 You know, I mean, my aunt's not a chatterbox, right? But I was struck when speaking to her mom, who is supermom and exactly the kind of mom you would want for a girl like Emma. She wants her to communicate as best as she can. She learned sign language for Emma, so that when Emma was a baby, she could communicate in sign. She got all of the state care that Emma was eligible for, all the occupational therapy and physical therapy and speech therapy that she could. And Emma can count and even do a little bit of adding and can read a teeny tiny bit and has friends and was telling me all about her stuffed animals and what she names them. 00:01:12.000 --> 00:01:13.000 But she started like my aunt. That's what's so interesting. She started out kind of inert. At seven months, it was like she was two months. She was just this like blob. And Grace, her mother - she adopted her - aggressively intervened, got her all these state services, and soon she was able to sit on her own. She walked very late and her balance was very poor, but they worked on it. They got physical therapy and developed her core muscles. All these things where she started like my aunt, but eventually… She had very little speech, and then suddenly, because she was mainstreamed rather than put in a, an impoverished environment like Willowbrook, she was put in a very stimulating environment, and suddenly she was talking in full sentences. 00:01:13.000 --> 00:01:14.000 Mm. Mm-hmm. Mm-hmm. You also describe how Grace was saying that when Emma was little, she would harm herself. You know, she would hit herself or bite herself. And that sounds like it was also similar to your aunt Adele, right? 00:01:14.000 --> 00:01:15.000 There's lots of stuff in my aunt's medical history about this very thing, and it's very troubling. This history of self-harm, which the doctors kept attributing to psychosis, and there were reasons for that, which is that she would say things like, "Stop it! You're hurting me." Things that they interpreted as auditory hallucinations and that may be the case that she was hearing those things. 00:01:15.000 --> 00:01:16.000 But what I want to know is, was she suffering from PTSD? Was she re-experiencing a memory from Willowbrook or Wassaic, and that was the only way that she could express it? I think my aunt probably had autistic behaviors. They are associated with the particular gene syndrome that she has. And that means that she would have had, possibly, an auditory processing disorder. So if she was shouting, "Stop it! You're hurting me," it could mean it was just hurting her ears, right? That, like, the noise was hurting her. 00:01:16.000 --> 00:01:17.000 Right. Right. 00:01:17.000 --> 00:01:18.000 And Emma had that. You know, she finds it hard to go to restaurants. She wears earmuffs when she goes to loud environments. 00:01:18.000 --> 00:01:19.000 You know, the way that you described the end of your visit with Emma and her family was just, was very touching. You said that Emma drew a picture for you of you and your aunt and gave it to you. And the last thing that her mom said to Emma was, "You know what Jennifer's aunt has? She has a woman who loves her and takes care of her because her mommy wasn't able to, just like you." And you write that you got outside to your car and just lost it. What was, what was running through your mind at the end of that visit? 00:01:19.000 --> 00:01:20.000 Well, [SIGHS] because here's the thing, Grace chose Emma. I mean, she chose to adopt her. Grace and her husband, Jerry, who's wonderful, [SIGHS] they wanted her, right? They took her in as a foster child and they fell in love with her and they had this both formal and informal infrastructure to help care for her. Whereas my grandmother, it wasn't that she couldn't have taken care of my aunt. I think she wanted to. She was told not to. 00:01:20.000 --> 00:01:21.000 Mm. Mm. 00:01:21.000 --> 00:01:22.000 And even if she'd wanted to, she had nothing to fall back on. Nobody understood how to take care of neurodiverse people back then, or very few people did. And I… To think now, in hindsight, my grandparents had spent 21 months bonding with Adele and falling absolutely in love with her, and then were told that the best thing that they could do, if they truly loved her, was to give her away. 00:01:22.000 --> 00:01:23.000 But it wasn't that they didn't want her. Of course they did. You know, I'm sure. And my grandmother admitted as much. She said that she felt terrible about giving her away and my mother tried to console her by saying, "Well, but then we wouldn't have had the same life we had." And my grandmother said, "Yes, but then she would have been with people who loved her." 00:01:23.000 --> 00:01:24.000 Yeah. 00:01:24.000 --> 00:01:25.000 Which is to say, my grandmother was saying, "I.e. me. I love her. I love her." She gave someone she loved away. 00:01:25.000 --> 00:01:26.000 Mm. And it sounds like your mom and you both got a glimpse of your aunt Adele living with and being integrated in this very loving family. That couple, the caretakers that you describe in your piece who were a little older than her, so they were quite old themselves, but who she called Mommy and Daddy and had a really fulfilling and, and loving daily life experience with. 00:01:26.000 --> 00:01:27.000 Yes, we blundered into extraordinarily good luck. That's really what happened. They're the Ayala family, Carmen and Juan Ayala. And to find a family like that, I mean, they are a rare element on the periodic tally table. God, the nurturing environment that they create for the people who live with them. It's just extraordinary. They have in-jokes. They do little games. They do little tricks. At some point, they taught my aunt how to salsa. Here is a woman who the doctor said would never get out of her diapers and learn to walk. And she can do a mean salsa, right? There was a looseness when I watched her dance to her body that I found kind of amazing and attributed to her environment. 00:01:27.000 --> 00:01:28.000 Yeah, it feels like reading your piece, you get the sense that you, as the writer, were really just following this trail of what-ifs. You just wanted to know what if, what if this had been different? And what if this had happened at this other point in your aunt's life? And what if she had had the experiences that Emma is having? 00:01:28.000 --> 00:01:29.000 And it seems that when people are institutionalized in the way that your aunt Adele was, there are just so many layers of impact and loss and what-ifs. So there's the individual person, there's the family, including future generations like yourself, and then there's the community, the society as a whole. And now that you've done this work of tracing your aunt's story, what is your understanding of how the institutionalization of people with disabilities has affected us and continues to affect us? 00:01:29.000 --> 00:01:30.000 That is a wonderful question. I mean, institutionalization victimized everybody. It victimized the people inside. It victimized the siblings, you know, the families, the parents. Everybody lost. These institutions may have started with lofty aims, but they very quickly deteriorated into despicable, disgraceful pits. And all of the people who lived in them became these individual case studies in lost potential. 00:01:30.000 --> 00:01:31.000 Mm. Mm-hmm. 00:01:31.000 --> 00:01:32.000 Also, they were erased from family memory. They were hidden in these institutions, sequestered away so that they were not accorded the proper place on family trees. So people don't even know about their neurodiverse relations, right? They don't even know about their aunt or cousin who had or has autism. Because these people were hidden. And if, in fact, they were not hidden, if they were swept into our daily lives and just a part of our daily lives and we got used to being on subways and buses and public and in public parks with people who are neurodivergent, who are different, we would not find it weird. We'd find it totally ordinary. 00:01:32.000 --> 00:01:33.000 Yeah. Yeah. 00:01:33.000 --> 00:01:34.000 The other thing I would say that's fascinating to contemplate and harder to trace is that trauma gets passed on through generations. You know, I mean, my great grandmother, who had all the delicacy of an anvil, you know, like basically said to my mom, "Your parents lost a child." That was how she put it. "And therefore, you have to be good enough and high achieving enough and perfect enough for two." So my poor mother became this maniacal, neurotic perfectionist. And what am I? A maniacal neurotic perfectionist. 00:01:34.000 --> 00:01:35.000 [BASU CHUCKLES] 00:01:35.000 --> 00:01:36.000 So, like, it's just, there are all these hidden inheritances, I think, that come along. 00:01:36.000 --> 00:01:37.000 Yeah. Yeah. What has this practice of going back and really trying to understand deeply what your aunt's life has looked like done for you? 00:01:37.000 --> 00:01:38.000 Gosh, well… That's a great question. I mean, it, it satisfied a deep childhood yearning to get to know this person, you know. And as I'm getting older and my family is getting smaller and smaller, it becomes more and more important to me to know who each and every person is in it. Right? So, it did that. 00:01:38.000 --> 00:01:39.000 I also felt like I played a small part in doing right by my aunt and restoring her to her proper place on the family tree because we had colluded in erasing her, right, in her erasure. But really, I think just also restoring her place to history, you know, our family history. Just naming names. It's very important in the Jewish tradition. You know, she has a name. Giving her her full humanity, her full due. That meant a lot to me. 00:01:39.000 --> 00:01:40.000 [MUSIC FADES IN] 00:01:40.000 --> 00:01:41.000 Well, it's a beautifully written piece, and I'm really glad that you came on to talk about it. Jennifer, thank you so much for your time. 00:01:41.000 --> 00:01:42.000 Thank you so much for having me. It was really, it was really rewarding. It was a wonderful conversation. Thanks. 00:01:42.000 --> 00:01:43.000 Jennifer Senior is a staff writer for "The Atlantic." Her article, "The Ones We Sent Away," is out now. I'd really recommend giving it a read to learn the rest of Adele's story. We'll link to it for you on our show notes page. And if you're enjoying this show, please follow "Apple News In Conversation" on Apple Podcasts and leave us a review. 00:01:43.000 --> 00:01:44.000 [MUSIC FADES OUT]