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Brain Lehrer: It's The Brian Lehrer Show on WNYC. Good morning again, everyone. How many of us love someone with a developmental disability? I assume many of you listening have a clear picture of a person in your family, maybe your child who you love deeply despite the extra care they require to move about in this world. Can you imagine your life without them? Can you picture your family tree without their presence? Well, for much of the previous century, families across the United States did live in such a way. Per doctor's orders, in many cases, children possessing certain disabilities were sent away to institutions, effectively disappeared from society, and delineated from their family trees. Now, we bring you a story of a family that endured the lasting consequences of this practice and the implications for today.

Joining us now is Jennifer Senior, staff writer at The Atlantic and author of the book, On Grief: Love, Loss, Memory, published this year. An excerpt from that book won the Pulitzer Prize in 2022 when it was published as a magazine article in The Atlantic. Her latest Atlantic article is called The Ones We Sent Away: I Thought My Mother Was an Only Child. Jennifer, always good to have you. Welcome back to WNYC.

Jennifer Senior: Oh, I'm always so excited to be here. Thanks for having me.

Brain Lehrer: Originally, you believed your mother to be an only child, as the subtitle of the article says. How did you discover that your mother had a sister?

Jennifer Senior: I was 12, and it was an idle conversation. It wasn't idle, I shouldn't say that. It was a serious conversation. It was late at night, we were sitting in the kitchen and conjecture, I just asked aloud. I said, "Gee--" We must have been discussing a friend's child. I said, "I wonder what I would do if I had a child who had a disability." My mother took this as an opening, and looked at me and said, "There's something you should know, I have a sister." Until that moment, I had thought she was an only. She had been spoken of as an only, my grandparents lived not even 10 minutes away from us, and were central to raising me and my brother and never once had they said a word about another child, and that's how I found out

Brain Lehrer: Until you were 12 years old. I see the story in part is that your grandparents brought your aunt, Adele, to an institution when she was 21 months old, in March of 1953. Tell us that story.

Jennifer Senior: Yes. My grandmother, at first, was told over and over again that my aunt was neurotypical, that there was-- The second Adele was born in 1951, my grandmother, as she later told my mother, was convinced that something was different about her, that her cry sounded different. There was something instinctively that she knew. Adele was inconsolable and it was distinguishable from colic. She seemed to be in some kind of pain. My grandmother couldn't figure it out but here she was, this working-class woman, no college education, talking to her pediatrician, and the doctor poopooed it and said, "Nonsense, nonsense. Everything is fine." Then one day she went to the Catskills over the summer. Adele was about one.

My grandmother had a sore throat and thought she was going to see the doctor for herself. Instead, the doctor didn't look at her, looked at her daughter who was sitting on her knee, and said, "Is that child getting the care she needs?" My grandmother said, "What do you mean?" The doctor said, "Mam, that child is a microcephalic idiot," which at the time was a proper medical descriptor. Idiot, imbecile, all these words were textbook words on hospital charts. Microcephaly is indeed what my aunt had, no one could say what, but her brain had stopped developing, the suture-- Her skull plates admitted up. From that point forward, my grandparents went on a frantic circuit of New York City specialists trying to figure out what to do.

To a person, every specialist said, "For the good of Adele, for the good of your family, and for the good of her sister," my mom, who was six and a half when Adele got sent away, "You must send her away." It was for her good as well as the family's good. This was the belief at the time.

Brain Lehrer: As far as the pediatrician was concerned.

Jennifer Senior: Yes, and the specialists. Yes.

Brain Lehrer: This was called Coffin-Siris syndrome-12, it's not something I've personally ever heard of before.

Jennifer Senior: This would be skipping ahead quite a bit. Eventually, when I reconnected with my aunt, finally, I had her genetically tested. At the time, no one knew what. The way she was described to me, and again, this was a proper medical descriptor, not a term we would ever dream of using today, but I was told by my mother when I was 12 that my aunt was profoundly retarded. She was sent away because of that. The belief was that she was never going to outgrow her diapers, she was never going to speak, she was never going to walk, and of course, she can do all of those things. She has something called Coffin-Siris syndrome, which is itself already a rare genetic condition. In 2020, they found a very specific variant that my aunt has. If I had tried to genetically test her in 2019, I wouldn't have actually had a clue what she had. It was in a weird way very lucky that I waited this long. Yes, at the time, they just came up with this catch-all description of her.

Brain Lehrer: Listeners, does anybody else have a story like this from your family, from maybe those days? This was in 1953 when Jennifer Senior's aunt was a baby and they sent her to Willowbrook, as it turns out, that institution on Staten Island. Has anybody else learned not at the time, but later on, as Jennifer learned when she was 12 years old, that you had somebody in the family who was sent away, and so, who you never met, or what about these days if you have a child with a developmental disability that maybe is as severe as Jennifer's and Adele's was, is the practice different than it was in those days? What do you think the moral questions are here and has the moral answer changed? 212-433-WNYC, 212-433-9692, for Jennifer Senior, staff writer for The Atlantic, whose latest piece is called The Ones We Sent Away: I Thought My Mother Was an Only Child. What was Adele's life like at the Willowbrook State School on Staten Island?

Jennifer Senior: It's a very good question. In a weird way, I wish I knew the answer. I both do and I don't. What I do know I wish I didn't know. To clarify that extreme-- Sorry, that was a grammatically gnarly sentence and opaque. Here's what we know about Willowbrook Institution. Senator Kennedy, RFK, visited it in 1965 and declared it a hellhole. In 1972, a young and at the time, unknown reporter, named Geraldo Rivera, busted into the joint, a whistleblower gave him the keys so that he could show up unannounced and film what he saw. It was this Gothic palace of horrors. It was like some kind of Renaissance depiction of hell. It had lots of rocking, and unclothed children and adults wailing on the floor. The smell of feces and urine was profound. Some of them were rotting in their own diapers.

They were criminally not only neglected but under-stimulated. This place called itself a school but there was no school, there was no anything, there were no games. Geraldo has this extremely poignant and just spooky, awful chilling moment where one of the whistleblowing doctors there says that if somebody happened to drop a piece of paper on the floor, there would be a mad scramble to pick it up and play with it just to turn it into a ball so that they had something to do. There were probably two attendance per 80 people. People got about 2.5 minutes to eat their food, they were just force-fed. That was where my aunt spent her formative years, under-loved, under-stimulated, if not abused, we don't really know. My aunt didn't have the vocabulary or the means to convey what happens there.

She was transferred to a different state institution that was no better. Geraldo just happened to get access to that one, but they were all uniformly pretty horrible. She lived in that kind of environment until she was almost 30.

Brain Lehrer: Yes. That's what first put Geraldo Rivera on the map as a well-known journalist. He discovered the conditions at Willowbrook and did this big expose on television, and then he was Geraldo Rivera. You share that you've met your aunt Adele a number of times. First, in the 90s, so she would've been in her 40s by then. Then you and your mother reconnected with her in recent years. What was she like when you first met her, and how would you say she's changed over these several decades?

Jennifer Senior: Oh, my goodness. When we first met her-- Here's the thing, you move out of institutional life and into these home settings, and they are better, but it's still a roll of the dice. There are plenty of indifferent caretakers out there. My sense is that her arrangement, the first time around because she was a ward of the state, she was put in a home care setting where they were fine and they weren't great. When we went to visit her, we were steered into a living room and told, "Okay, you're visiting, go," and they left. We had no sense of who Adele was. There was absolutely no context for her. What does she like? What doesn't she like? What are her preferences? What makes her smile? Just making small talk with a relation that you've had no previous relationship with and who we had no context for was really hard. It was awkward.

In spite of that, my mother was still very tender toward her, was obviously very ambivalent, but very excited. We didn't really know how to connect. We noticed that when we were finally sent to her bedroom that Adele liked to needlepoint. Lo and behold, so did my mother, she was at the exact same moment undertaking these comically ambitious needlepoint projects like the Chagall windows or whatever. There was Adele doing her own crude needlepoints. The other thing that we noticed about Adele is that she really liked to sing and she could sing on key. If you just tried to talk to her, she would only use the words yes and no interchangeably. She didn't even seem to understand them, but when she sang, she had hundreds of words at her disposal because she was taken to church every Sunday because that's what they did.

Suddenly there she was singing these lovely church hymns, these beautiful hymns. We had some sense of her talents, of her gifts. It was an upsetting visit. It felt like there was just more there to know. The second visit was very different. I don't know whether or not people are calling in because people are going to. They're going to have these stories. It's chilling how often they come up.

Brain Lehrer: Oh, our lines are entirely full.

Jennifer Senior: Yes. I figured there were--

Brain Lehrer: No surprise there. Actually, before we go to some stories, I want to ask you what might be the central moral question here? Is it ever, or under what circumstances, is it morally acceptable or preferable to institutionalize somebody, and I don't know what's the other half of that equation, not have to live with the burden? Have you grappled with that explicitly like that because that's what a lot of families would actually have to ask themselves, right?

Jennifer Senior: Right. I am very careful in this piece not to judge anyone from back then, and not to judge anyone now. Back then, I think almost to a person, almost to a parent, people were told to institutionalize their children, and the infrastructure to take care of children who were neurodiverse was so anemic back then. There was almost an anti-infrastructure in place. Schools would not accommodate them. Churches and religious organizations often believe that children like these were the products of sin. They weren't helping out. They weren't stepping up. Right now, in almost every state, or in every state, I believe, you get free occupational therapy and physical therapy, and speech therapy. Public schools are obliged to develop individualized educational plans for kids who are different.

There are way more plans in place. My grandparents were barely working class. They couldn't have taken care of Adele given her custodial needs. The alternatives were nightmarish and I cannot judge my grandparents who had fallen in love with their baby and were told to give their baby away. It destroyed their lives. In some ways destroyed my mother's. It was a trauma in some sense, an enduring trauma. My grandparents, unlike other parents, were engaged. They visited her every weekend. Now, there are far more options, there's more infrastructure, but there are still going to be children who might pose harm to themselves, pose harm to their siblings, pose harm to their parents, who just prove to be too challenging to care for where parents are not going to have the money.

I'm not going to sit here and say that parents should be saints. I think they have a lot more options now. No one would dream, for instance now. I think if a child has Down syndrome it's now customary you keep children with Down syndrome in your house. There's so many resources available for this kind of thing-- I'm sorry for this particular form of neurodiversity, but if somebody is-- I can't step in and judge, all I can say is that we have far better resources now and that the calculations parents make are very different.

Brain Lehrer: Arlene in Glen Ridge, you're on WNYC. Hi Arlene. Thanks for calling in.

Arlene: Yes, good morning. I just wanted to share from my own family history, and I have to preface this by saying I was born in 1952, so I'm 71 now. At the time growing up, my mother had explained to me she was one of eight children, six of which were girls, two boys, and my grandparents had a daughter my mother's sister, who was-- as my mother would tell me that my aunt became difficult to have at home. That her behavior was such as she became a young woman, uncontrollable, and they were concerned for her safety. She was placed into a state institution home. My family were always in touch with her. Every month, one of my aunt's, families, or my uncles would go and visit. Always on her birthday for sure, but every month somebody would go. Even though she was separate from my basic family gatherings I certainly know who she was.

I remember going to visit her as a child. She was in Vineland, New Jersey. We grew up in northern New Jersey. It was a bit of a ride for our family. Of course, we made the trip. I remember her and I remember this somewhat of the situation that she lived in, and because she was a functioning adult she was able to be given responsibilities. She was in charge of the younger children. I remember being out on what was a playground where kids were on swings and she would be there to make sure that no one got hurt. I do have a memory and it's not one that's super negative. One, my grandparents were immigrants. My grandfather was a carpenter. My grandmother took in laundry. They did not have the financial or any other kinds of means to be able to care for her properly in their home. I just wanted to share that experience. She did live to be a very ripe age into her late 80s, perhaps even early 90s. I have to check. She outlived several of the siblings.

Brain Lehrer: With quality of life?

Arlene: Had a quality of life, yes. Of course, my last memory unfortunately was at her funeral, but all of us were there. The family kept that bond. That was my experience. The other experience that I had, I'll be very brief, was my best girlfriend growing up in grammar school had a brother who was deemed to be, and I'll use that term, mentally retarded, fairly severely. Their mom was a nurse--

Brain Lehrer: Because that's what they called it then.

Arlene: Yes, exactly. She didn't work outside of the home, but she cared for the boy and I remember her saying he wasn't verbal, he couldn't speak. He had behaviors that were concerning because of course he could hurt himself. He always had to be monitored. My friend and I, we were older and so we would babysit a lot. That experience was having not sent the child to an institution, this child who was severely, perhaps disabled, but keeping that child at home and keeping it within the family unit. I had two experience that were--

Brain Lehrer: Two different kinds of experiences, but both that you conclude were supportive from the family perspective.

Arlene: Yes.

Brain Lehrer: Arlene, thank you very much for that. Let me go to Erica in Plainview. You're on WNYC with Jennifer Senior from The Atlantic. Hi Erica.

Erica: Hi, thanks for taking my call. Big fan of the show. Jennifer, I heard you a couple of days ago on Fresh Air which was a really fascinating interview. Thank you for sharing your family's story. I wanted to speak from my family's experience. Right now I have four boys. My oldest and youngest both have autism and my middle two are neurotypical, as we say. My oldest is much more severely affected with autism. He is barely verbal and started going to a private school lout of-- He lives with us. He started going to, at around age 9 or 10, a private school because our district could no longer handle his needs. Once my middle two started getting older and as he went through puberty and became much more difficult to take care of, we made the decision to move them to a group home that was attached to the school.

I wanted to share that point. It wasn't an easy decision, but it was one we had to make. It was having a negative effect on our marriage. He was having a negative impact on my middle two children's development, their ability to concentrate, do their homework, have friends over practice musical instruments, for us to go out to dinner. Very basic things that other families don't really consider. I wanted to share that point of view, and I was really grateful that we had the resources and that we were able to move him to a place that has provided the kind of support that he needed and that we need. How much things have changed? Some parents have to make that decision when their kids are very young. He's had eight-year-old and nine-year-old residents, I've known families that moved a son out when he was seven. He was posing physical risks to the siblings in the family.

I just wanted to present that point of view, and I'm really glad that things have changed so much over the decades.

Brain Lehrer: Jennifer, do you want to talk to Erica? She seems like the kind of parent you might have interviewed for your article if you ran across her.

Jennifer Senior: Yes. I'm curious about your younger one and what the plans are. I really appreciate your honesty. I think that it sounds like you found a great place for your son and that he will thrive there and get the kind of care he needs. It's really important that the family-- He still sounds integrated into your family. You still see him and [crosstalk].

Erica: Correct. He's nearby.

Jennifer Senior: I am guessing that also if you live in New York state, New York will pay for private schooling for [crosstalk]

Erica: Correct. The school district pays.

Jennifer Senior: Yes. I'm sorry, the school district will pay. If you're at the point where even that's not enough, it's a hard point for a family. There's pressures from fellow parents who have neurodiverse kids, "Why are you doing this?" You've got to sit there and you feel like you have to defend yourself, and you're trying to balance all of these things. I'm very moved that you share this story. I think it's really important for people to hear it. I'm curious just about your younger one. Oh, if I can also just say something about Arlene's story, what's fascinating to me is that this relation who lived to be into her 80s or 90s, as an adult with--

Brain Lehrer: The previous caller.

Jennifer Senior: Yes. The previous caller, was taking care of the younger kids in that institution. That woman had so much untapped potential. She never would've been sent to an institution today. You could just hear, there would've been plenty of supports in place and infrastructure galore for a person who already was able to take care of other kids. Goodness, that broke my heart, actually. Anyway, I'm curious about Erica's youngest or younger child.

Erica: My younger one is almost 12 and he's higher functioning, but because of prior experience and I am also a special education teacher, so I come with a lot of background and my father was a specialist in the field, I see where he's going to be. I know that he will be in a group home eventually. I know what needs to happen between now and then. Right now he's in the public schools where we live, where his brothers went. It's fine for now, and that fine I'm assuming is going to end when he gets a little bigger and a little older. I see the same path, maybe a different school and a different home run-- The out-of-district schools, so to speak, often have residents with it, residential housing for youth, and sometimes adults. My hope is that he is somewhere else maybe, he's higher functioning, and there are group homes and schools designed for kids that are more like him.

We are already seeing signs of things that we will not be able to handle as he gets bigger. Right now he is with us, and we will keep him with us as long as we feel like we can parent him and be the type of parents. I know that we won't always be able to do it by ourselves and we're going to probably need a similar housing situation.

Brain Lehrer: Erica, thank you so much for your call, and your candor and complexity as Jennifer was thanking you for before. Jennifer, before you go, I think maybe your conversations with the callers have answered the question of how children with more recent severe developmental disability diagnoses are treated today compared to your aunt who was born in the 1950s. Is there anything else you would like to add?

Jennifer Senior: Just that I think there's still work to be done. There's more infrastructure that can be built. The United States is terrible at taking care of everyone, whether it's the elderly or whether it's children. We don't have paid maternity leave, we don't have subsidized childcare, and it varies state by state, but we don't have great support still more than we did, and we still deserve more. I think we could do better. One quick thing, if I could just say, my book is actually exactly what my story was. My piece in The Atlantic was not an excerpt. The book and the story are identical just for people to know because you'd said that it was an excerpt and it wasn't.

Brain Lehrer: Sorry.

Jennifer Senior: No, no, no, it's fine. I just want people to know if they buy the book, they're buying the story.

Brain Lehrer: They're buying the story. I'm still thinking about Arlene's call and your reaction to it. For a closing thought, you argue that it's not just the people who are institutionalized who pay a price, but society as a whole. Can you make that case in our last half-minute or so?

Jennifer Senior: Yes, because here's the point. If neurodiverse people were more visible to us, then think about how different the experience would be of going to a restaurant we wouldn't find it strange if we saw a child with autism stemming or singing to them or talking. The beautiful range of human behaviors would all be in public parks and out among us, and everybody would be on our family tree. If we gave birth to a child who was different, we'd know that, oh, yes, they're all over our family. They're in everyone's family. It's part of the great range of human experience. That's what I'd say.

Brain Lehrer: Jennifer Senior's article in The Atlantic is called, The Ones We Sent Away. I thought my mother was an only child. The book is called On Grief: Love, Loss, Memory. Jennifer, thank you so much.

Jennifer Senior: Thank you so much.

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