It wasn’t uncommon for previous generations to hide away family with disabilities in institutions. Jennifer Senior is a staff writer at The Atlantic, and she joins host Krys Boyd to discuss the story of her aunt Adele, who was sent away at age 6 because of intellectual disabilities. Adele’s existence was hidden from Senior’s mother for years – a loss for each sister that advanced approaches to treatment often prevent today. Her article is “The Ones We Sent Away.”
This episode was originally published, September 18th, 2023.
- +
Transcript
Krys Boyd:
It’s usually a simple, almost banal question asking about whether a child has siblings, but a couple of generations ago it was an awkward one. For some families, the ones who may have followed doctor’s advice to place a special needs child in an institution and then carry on as if that child had never existed from KERA already in Dallas, this is Think I’m Krys Boyd.
Families may have returned to the rhythms of life with one fewer child, but that enforced absence likely did not lessen their grief and guilt. And for children with disabilities, institutional placement was a risky prospect at best, no matter what their parents were told, Atlantic Staff writer Jennifer Senior is here to talk about this. She’s been thinking a lot about her aunt. Her mother’s younger sister, who was placed in a home because of a condition that was not even fully diagnosed when she was a child, creating a kind of hole in the family that was never discussed but also never really went away. Her essay about this is called the ones we sent away. Jen, welcome back to think.
Jennifer Senior:
Thanks so much for having me back.
Krys Boyd:
You write that this story started with a tweet two years ago by a father who was just expressing love for his son as fathers do online these days. What made this particular post go viral?
Jennifer Senior:
Oh my gosh, well, so it’s an interesting question why this one caught fire. I would guess because you know the generally the kinds of tweets that go viral on Twitter are they’re political or they’re designed to gin up outrage. This was the opposite. It was heartfelt. It was super sweet and all he said was that. His son turned 25 that day and although he had never spoken a word, the father had learned so much more from him than from anyone else or something. Something along those lines. And what made it go viral, I think was. That. Someone got the ball rolling by replying with a picture of their nonverbal child. And the next thing you knew. There were just cascades that mean just this down, rush of replies from parents all over the world playing with pictures of their nonverbal or only minimally verbal child. And it was just beautiful to scroll and through and to behold just one photo after another. I mean I when I saw it, I was spellbound.
Krys Boyd:
How did you first learn that your mother had a younger sister?
Jennifer Senior:
How did I first learn I was 12? And. I was actually idly wondering aloud. How I would react if I had a disabled child, we we must have been talking about. You know, the work that my grandfather did volunteering with people with at well at the time it was called Westchester Association for ******** Citizens Award that no one uses. Now, but it was, you know, people with disability and intellectual disabilities. I think I must have. It must have been a response to that that I posed the question out loud said. I wonder how I’d what kind of parent I’d be, or how I’d react, or something innocuous. And my mother saw that opening in the conversation, and she dove through. It she told. Me that she had his sister. And I had had no idea I had grown up believing she was the only child in my whole life.
Krys Boyd:
Was your mother emotional as she told you that story? Or was she sort of just recounting the facts? What do you remember about the like, the feeling of that moment?
Jennifer Senior:
My mother has adjusted the facts, ma’am kind of approach to life. She’s she’s highly controlled under most circumstances. So I think this was I. Don’t remember it being fraught, other than her fearing how I’d react? I mean, I think she was trepidatious cause she thought ohh my goodness, I’m about to break some really serious news to my daughter who’s walk? Walked around in the world understanding X and now I’m going to tell her why, but I don’t think that she. She she certainly didn’t say this with, like, tears in her eyes or anything like that. She had the last time she had seen her sister was when she was six years old. So if we do the math on this, if I was 12, my mother would have been 35. You know, she hadn’t seen her at that point in 29 years, if I’m still doing the math correctly. So she. It’s it wasn’t going to. She had had to repress a whole lot to kind of hold her life together, right?
Krys Boyd:
It is really poignant though, you know, you mentioned that your grandfather was a lifelong or or for many decades, a volunteer working with people that have had cognitive disabilities. I mean, that might have just seemed like a nice thing for him to do. Surely there was context added to that decision that he made.
Jennifer Senior:
Absolutely. That is exactly it. I mean, do you remember the movie? The usual suspects. So at the end I can’t remember. Oh my God, the, the the name of the oh Chaz Pullman. Terry. He was the, you know, the the detective or the cop who’s giving Kevin Spacey all this grief and then he turns around and he looks at the, the, you know, the. Obligatory bulletin board Cork Bulletin board behind him with stuff up there and the second Kevin Spacey leaves his office, he looks at it completely differently. The whole thing rearranges in his head and suddenly. Everything kind of assumes a certain kind of salience that it hadn’t before. That is exactly what happened. Is all these different facts of my life, these different pieces of debris reemerged like drenched with new meaning. You know, like my father, as you said, my grandfather, as we’ve been talking about volunteering at. Warc suddenly I thought. Oh my God. That’s why he’s doing it. Ohh my. I might have even had. The 12 year olds version of a thought that was like he suddenly made it, you know, whatever my 12 year old version was and also my grandmother would make these absolutely frantic trips every Christmas to the local department store to buy presents. And I could never figure out why because we were Jewish. We didn’t selebrate Christmas. I didn’t like. Who would she have any? Who would she be? Giving a gift to? And it was my aunt because she lived in this group home where? The you know the people or the group home. I mean, it was a resident, it was residential care. They called. It was just one family that took care of her and they went to church every Sunday and they took all of the people who lived in the house. So my aunt. Unbeknownst to me was learning church hymns, you know, and like celebrating Christmas, unwrapping Christmas, Christmas presents. But yes, a whole bunch of other things made sense.
Krys Boyd:
So your aunt was just 21 months old when her parents were convinced to take her to a state school and leave her there. Your grandmother had recognized early on that there was something different about her second daughter. For a while, doctors dismissed her concerns. And then I guess they gave her just this completely hopeless prognosis.
Jennifer Senior:
Right. Every interaction she seemed to have with the doctor was awful in one way or another. When it came to my aunt. At first it was awful because she was being dismissed, right. My grandmother was this lovely and wonderful and very funny and very quick witted. Woman who lived in. Flatbush, you know, in Brooklyn, no college education, but smart as a whip. Really great. But how? She was this. Working class lady that this imperious Dr. didn’t take seriously for a whole year. She kept saying something is different about my daughter. My daughter seems to be in pain. She’s she’s inconsolable. She she doesn’t cry the same way other babies cry. She’s not meeting the milestones of other babies. The other babies meet at this age that her sister met at these age at this age, and the doctor kept dismissing her. Then she was up in the Catskills. It was about the time of my aunt’s first birthday, and she went to the doctor for herself. Just a local Catskills Dr. And she had some persistent sore throat or an infection of some kind, and the doctor, rather than paying attention to my grandmother, looked at my aunt, who had come along. With her, because she was always crying. And the grant and the doctor said. Is that baby getting the care she needs? And my grandmother said, what do you mean? And the doctor said that child is a microcephalic idiot. Technical term, idiot. Was in textbooks back then. It was a proper descriptor, and that was of course. So horrifying and alarming to hear for my grandmother, they immediately raised her to New York, and then they went from one specialist to another, who all told my grandparents the same thing, which was that. Adele was never going. That was. That was my aunt, was never going to outgrow her diapers. She was never going to be able to walk or talk or. Give my grandparents any kind of pleasure whatsoever and the best thing to do. For her and for my mother, who at the time was 6, and for the family, for my grandparents, even was to institutionalized her and walk away. Which is amazing because of course they had already fallen in love with their child. It is sort of mind blowing to me today. You would look at someone who’s holding their infant child and say the best thing for you to do is just deposit her somewhere and forget about her. I mean, everything that we’ve learned since about, like, the unbelievable. The you know the the neurochemical kind of just even the neurocircuitry associated with love and parent child bonding and just how utterly psychotically bonded you are to your kid. The idea that any doctor could look a woman in the eye and say just leave her at some doorstep somewhere. I mean, it just blows my mind.
Krys Boyd:
I mean, your essay was so interesting to me because. It. Made clear how seldom. Even now these stories get told. And I think part of the reason is that we’ve also stigmatized those parents who were pressured by doctors or told by doctors. This was the best thing to do the right thing to do. We’ve sort of written them off as if they all wrote their own children off your story. Demonstrates that’s not true. They didn’t forget her. They didn’t not care about her, but it’s sometimes, maybe easier to say only terrible people would do such a thing.
Jennifer Senior:
Right. And if you had true intestinal fortitude, you would you would withstand all of this advice from the medical establishment and just keep your child at home as if as if that were an option. I mean, there were. No, there was no infrastructure to take care of a special needs kid in those days. My, my grandparents had exactly $0.00 and 0. Events they were both working long, hard hours. Schools wouldn’t take my aunt religious institutions weren’t. Standing there with open arms in some, I don’t know what their synagogue thought of it, but I mean, certainly as far as most churches were concerned, this was the product of sin. These kinds of, you know, special needs children meant that they they were paying the price of the sins of their parents. And so. There was certainly no state interventions like we have today that are free. I had nothing but compassion for my grandparents. I mean it. It I think their hearts got broken and thank you for pointing out right that they they didn’t leave. I mean they went and visited her every weekend and something that I learned after my story went to press. And I’m so. Sad I learned about it. In fact, I learned about it after it published a sort of relation, and my mother called me up. Well, I should have had the sense to call, I think. I was just so overwhelmed. I had so many hours of tape from so many people as it was then. I thought this is going. To. Be hard, but she told me that my grandmother, she’s pretty sure my grandmother learned how to drive. Because she wanted to be able to go see my aunt, which is really amazing. If true. Now I have to go and Fact Check this with my with my mother but. Yes, that’s exactly right. My grandparents were anything with callous, unfeeling people. I mean, look at what my grandfather did later, I mean. He felt so guilty, obviously on some level, and my mother, my grandmother, was the family nurturer. She was the rock that everybody clung to. I mean, so there was no way Clang clung, clung, clung you, clang, clang. Anyway. I’ll never get that right.
Krys Boyd:
All of the above, yeah.
Jennifer Senior:
All of the above right, I mean congregate, cling. Yeah. Anyway, so I I don’t. Yeah. I certainly don’t in any way think less of them for having done this. I mean, I’m sure they were unusual people who kept their children. You know, but it would have been very hard to imagine a circumstance under which my grandparents would have felt like. They could have.
Krys Boyd:
Jen, your mother, by all accounts, adored having a baby sister adored being a big sister. She was what, six or seven when Adele was sent away? What was your mother told?
Jennifer Senior:
Yeah, whiz bang in the middle of 6 1/2. Exactly what was she told? What pains me is I am sure that my grandparents. Had no guidance. You know about what to tell my mother? They knew that they had to institutionalized her. They were ordered to do so by, I don’t know how many specialists, but I would sincerely doubt that any of them gave any advice about what to tell my mom and the excuse they cooked up was that my my aunt was going to walking school. And at first, my mother thought little of it because she fully expected her sister to come back. And as you point out, she was overjoyed when my grandmother came home with her. With the baby sister, this was all she wanted and she already had her own little vaudevillian routine with her baby sister. You know she would. She would shout here, baby and watch her sister as she either followed her with her eyes or tried to scooch over her in her playpen to follow her around the living room, you know, and look at her. So she she. Adored having this little kid around the house. You know, and as the months dragged on and my aunt didn’t come home, I think it became a source of increasing bewilderment and then anxiety. And my mother tells me the story about at one point when she was 8 years old, breaking down and trying to insist. On an answer because she would ask every so often. When is Adele coming home and they would always say we don’t know. They didn’t know how to say to her. The answer is no. Sure. She’s not coming home. And at some point, my grandma, my mother said, how long can it possibly take for a child to learn how to walk? And this is when she was 8. So it’s a year and a half in already. And she said it was the only time she ever saw my grandmother cry about this. Or anything else. Until my grandfather died, she said. Still, I don’t know. She still couldn’t bring herself. To answer honestly and to break her daughter’s heart, I mean, she was dealing with her own heartbreak, I’m sure. And I I I don’t know who would. Eyes to her that the best strategy was whether she just thought, or whether she couldn’t do it. I, who knows, but my poor mother walking around in this fog of confusion and and bewildering her whole childhood. Not it wasn’t until she was in her teens that I think she really understood the full score.
Krys Boyd:
So something like 40 years went by in which your mother did not see Adele. And then? In 1998, she arranged a visit and she took you with her on that trip. What are your memories of the reunion?
Jennifer Senior:
So a couple of things. First of all, my mother, who is usually really controlled and tough, she kind of dissolved into this puddle of girlishness. I was so stunned by that. She became six in a funny way. Very, very gentle and dear and tender with her sister. But it was hard. We had no. Context. It was like we were dropped into that House. We landed like in meteor, you know, just. Boom. In, we were placed alone with Adele in a sitting room of some kind. They didn’t tell us anything about what Adele liked or disliked, or how to. Kind of. How to find a way in with her how to engage her? So it was awkward in that sense, but. Two things that really do stand out. Number one, my mother study studied opera. She’s a beautiful voice. She is an extraordinary musician. So you can play the piano. She can hear something once and then play it back to you. Classically trained. Can pick up the phone and tell you the dial tone and what the dial tone is. It’s a major 3rd and. Adele also could sing on key, which was amazing because she the second she began singing, she had hundreds if not thousands of words at her disposal. Whereas when we tried talking to her, all she would say is yes, it were no, and she seemed to use them interchangeably. The other thing that was crazy is that my mother at that moment. And time was. Making. She was she just embarked on these crazy, ambitious needle pointing projects. Like all 12 of the Chagall windows. You know, I will make all 12 of them and they will be 4 by 6. And I mean, I don’t know what she did with all of them, you know, but we have them somewhere, right. And a couple of them are still around. This is what my mother did, and we walked into Adele’s room and there. Marching along her walls were these needlepoints, and obviously they were cruder. They were not. They should all windows, but she was going through the exact same phase at the exact same time. So I don’t know if you ever read years and years ago there was that famous New Yorker story about the twin studies center in Minnesota or whatever it was. Identical twins, they were looking at separated twins to see what was nature and what was nurture, and you would find all these funny coincidences, like two people, two men who had. Been together for 40 years, who hadn’t seen each other in 40 years, and they would show up in the exact same yellow polo shirt and discover that they had first ex wives named GAIL. I mean, it felt like that it felt exactly like that. It was so surreal and otherworldly. So that’s what I discovered. That’s what I remember most about that. Day.
Krys Boyd:
How much do you know about the institutions Adele was placed in before she ended up in the group home where you saw her and where she seemed to be thriving?
Jennifer Senior:
OK, so that was not the home where she was thriving. That woman retired, and then she moved to another one. And that’s where she really began to flourish. But what do I know about her institutional life preceding that New York State institutions for the intellectually disabled were grim. They were hell holes. They were unimaginably ghastly. She was first at Willowbrook, and if you say Willowbrook to anyone of a certain generation in new. York. They would just go. They know just what it is. Robert F Kennedy visited it in 1965 and deemed it a snake pit. That’s a quote and Geraldo Rivera. In 1972, a young unknown reporter full of beans and hustle, goes out and does an expose of the place. And he walked in unannounced. He stormed the place. A whistle blowing doctor had given him a key. And the footage he got is just so hard to watch. If you have any family connection to that place at all, it’s brutal. What he describes is a place that just reeked of urine and feces. Of people wailing and moaning naked on the floor. There was no stimulation for anybody who lived there. There were no toys, there were, there were no. There were no. Books. There were no toothbrushes. Hygiene was an issue. He would describe an attendant dropping a piece of paper and everybody fighting over it because it would be something to play with. There was probably 1 attendant per 40 or 50 people, which meant that everybody got only about 2 1/2 minutes to eat and many of the residents couldn’t feed themselves. So they would be force fed this rule. I mean the whole it was so nightmarish and so catastrophic. And that was where my aunt was in her formative years. She moved to another state institution in her teens, not because of the expose. She was moved before that expose. And I don’t even think because of anything my grandparents heard, it was simply because. My grandparents moved up to Westchester County to be closer to us. That’s a suburb of New York County, you know, near adjacent to New York City. And my grandparents wanted to be closer to her. And Willowbrook was. In. Staten Island, one of the five rows here. So they moved her to a place further upstate, and I think it had a reputation for being just as grim. I think Heraldo just happened to have the key to one of them, but. That they were all. Like a Hieronymus Bosch painting, you know, they were all just medieval scenes of torture.
Krys Boyd:
You had wondered the first time you met Adele. About the fact that she had no teeth. You mentioned that there were no toothbrushes given out at Willowbrook. That’s maybe like the most benign interpretation of what might have happened to her.
Jennifer Senior:
It certainly is, and it took a while for me to come up with more. Sinister and. You know, terrifying version. The more Gothic version I guess I should say. Here’s what. I I was told that she had no teeth originally when I went to see her in 1998, I was told that the reason was because she took a medication that her eroded her or made her teeth decay or something. I then got a hold of her medication list when I was doing this story. And there was nothing in her. In her medication history or her contemporary medications, nothing that could have possibly made a person lose their teeth. So. Hmm. Then I watched the Geraldo special and he remarked upon the fact that he couldn’t find any toothbrushes. Which suggested that everybody had really terrible oral hygiene, which meant that everybody probably had a lot of cavities. And then I spoke to a woman named Diana McCourt. Who her child was at will work and they became part of a class action lawsuit against Willowbrook, and she told me something shocking. Which was it? It was an aside in our conversation. This was purely a parenthetical. Well, she mentioned that she hated how vague the updates were that she got from Willowbrook, about her daughter, and that they would just be like 3 sentences and bloodless and very descriptive like that she went. Nina went to the dentist. And then she said to me parenthetically, and that dentist, by the way, was notorious for pulling people’s teeth. And I. Said wait, what? Well. What? And instead of dental dental care, that’s what they did. They just pulled people’s teeth. I and I just heard that and I. I practically started to cry. I mean, and the other possibility, of course, is that my aunt might. Bit herself or others. She had all these self harming behaviors. She had all sorts of behaviors reflecting, I think a certain level of frustration because she. Couldn’t she? You know she? Couldn’t she didn’t have language to recruit from to express herself fully. And so it’s conceivable that they removed her teeth. Not even because they were rotting, but because they didn’t want her biting herself or others. I mean, I just don’t know.
Krys Boyd:
So Jen, there was never an official diagnosis aside from this doctor and the Catskills that took one look at Adele and said her cognitive disabilities were caused by microcephaly. But that’s kind of a blanket term. What made you want to get an official diagnosis if one was available of the condition that had caused her disabilities?
Jennifer Senior:
So it’s a good question. I think partly I was just curious, I mean we know so much now and we’re we’re so much more enlightened and about neurodiversity and we now have the miracle of genetic testing and gene sequencing. In all these things, right? So. Initially I was calling microcephaly experts and saying how many different things can cause microcephaly and the answer I heard from everyone was too many. I couldn’t possibly do this by process of elimination, I couldn’t even show them a picture of my aunt and they they wouldn’t even want to conjecture. I guess they wouldn’t know. They wouldn’t want to hazard any kind of guests, so I decided at some point, forget it. I’m going to see if I can. Do some genetic testing. I’d like to know it would be useful for her. I mean, what if she has a condition that has a name and we can identify what happens to these people as they age? You know, maybe she has a syndrome where we should be on the lookout for certain things as they as people enter their 70s. Right. Maybe. I don’t know, it would point the way toward an aging plan or an even further aging plan, seeing that she was already that she was already 70. So that was one reason whether my brother and I, I mean, we’ve all had. We’ve both had our kids, but just whether. There was a gene in the family, I guess, and just. I don’t know to know to know because there’s nothing shameful about it. Whatever she has, she has, I mean, to for it to be a secret. It just suggests that there’s, I mean, I was done with shame, right. I I I sort of thought whatever it is, it’s just part of the great variety of human differences. And I want to know what this is. So that’s why.
Krys Boyd:
And what did you learn?
Jennifer Senior:
I learned that if I had gotten her genetically tested in 2019 as recently as then I wouldn’t have known the answer. They discovered her the gene for what she has in 2020, so I was very lucky to have her tested in late 20/22. She has something called coughing. Cyrus syndrome, which is already very rare, and she has version #12, which is an even rarer. I don’t know why they give it that. Name. I don’t know if there are 11 preceding versions or if they named it 12 because at the time that they found it, there were only 12 people in the two big databases that geneticists used to look at these things, there were only 12 known people to have it in the whole world. The planet. So now I think that number is probably closer to 50 with my aunt. It’d be 51, whatever, but it’s exceedingly rare, and microcephaly is sometimes a feature of it, and sometimes not. Autism is sometimes the feature of it, and sometimes not. Intellectual disabilities tends to be a feature of it. And so do a lot of kind of organ problems, which my aunt did not seem to have. Interestingly, and also another common feature is that in fact this is how they diagnosed it, I guess micro coffin Cyrus, not the number 12, but the kind that was around that people knew about. Since the 70s, people have unusually. Developed pinkies so that was how. You. Knew my aunts. Pinkies were fine, but she had very tiny feet. She wore a child size 3.
Krys Boyd:
Jen. This is the amazing thing. So Coffin Cyrus syndrome. Your aunts version is especially rare, but it does exist. There are communities of parents with children who have this. You met a little girl named Emma living with her parents in Kansas City. How does Emma’s life compare with what you know? About Adele’s childhood.
Jennifer Senior:
This was the most bittersweet. Part for me of all the reporting involved in this story, Emma. Has a wonderful life. She has two parents who? Adore her and who chose her? She was adopted at the time her parents had no idea what. She had, they knew she had something and they didn’t care. They didn’t care. They had fallen in love. With her they had fostered her. Her for five months and they decided they. Wanted her for keeps. And knowing that this would be. Hard. Knowing it would be challenging, they took her in and showered her with every possible. Uh. What’s the word? I could I could not benefit. But you know every available resource that the state had to offer and and there were many. They adopted her in North Dakota and then they moved to Missouri right outside Kansas City. And there are tons of Free State resources that you can get for a person with intellectual and physical disabilities. You can get free occupational therapy and free speech therapy and free. Physical therapy and Emma got all of them. Emma was mainstreamed into the public school, and they came up with an individual. An Individualized Education Program plan for her. She has a tutor for. Visual processing. Her mother stays home now and homeschools her. They just pulled her out of the public school system, but it was because of the public school system that she had this gigantic explosion of vocabulary. Rather than living in a resource. Impoverished environment. She was in a resource rich environment and highly stimulated as a kid. So that she speaks in full sentences and she can narrate her internal states. It’s crude, but she can say if she feels mad or sad, you know? And she tells me all the time, I mean or she told. She told me constantly when I saw her so. And so is my BF and I I play with this person and I you know. She could rattle off all the names of all the people in her world who she loved and all the things she likes. And the dance routines she had made-up for me, and I mean, she was just a fully realized person, this bubbly little ingenue. And I, I couldn’t even allow my brain to do the counterfactual example. Like, what if my aunt had? Growing up in the same kind of environment and it’s possible that my aunt still would be developmentally very different, I think the gene mutation that my aunt has is even more severe. Like even if you have the same if you share a. Genetic mutation with someone. I think my aunts. Mutation was trunky her. Her gene was truncated earlier on in the sequence, and it probably meant that my aunt was not going. To. Have his larger vocabulary, even if she had started earlier. It’s it’s but look, you know my aunt, even with no stimulation at all. I mean. Wound up not only outgrowing her diapers and learning how to walk, but she can dance a mean salsa. I mean, she’s a really good dancer, right? And I was. A I’m a terrible dancer. I mean, I just looked and thought, where did that come from? She developed. A vocabulary. A minimal one, but once they took her off of Alves and Narcotizing drugs. That she was on. She had this explosion of speech when she was in middle life, probably in her 40s or 50s. So human beings are the brain. The brain is remarkable. It’s capable of a lot. And just thinking about what she could have been capable of. Really drives me. I mean, it really kills me. You know?
Krys Boyd:
I mean I have to tell you, I had to… I had to stop reading and put the piece down for a few minutes after learning about Emma because it’s impossible to hear her story and not think about how different Adele’s life might have been with modern medical care and modern medical ethics. It’s also impossible to think about how different your mother’s life and her parents lives would have been.
Jennifer Senior:
Totally. And I don’t think we should kid ourselves. I think it would have been hard. Yeah, I think. And there are some situations that are so hard that people’s parents still make what I think is a perfectly reasonable decision to put their child in a group home or in an institution. Because the child poses too much of A risk to themselves to their parents, to the other kids in the house, we can’t know, right? But. It certainly raises questions. What if she had had my mother? What if my mother had had her? What if my grandparents hadn’t had their hearts broken? And had gotten to keep this child who they’d already fallen in love with. In their house, and certainly they would have had to rearrange a lot of their lives and at that point in time, because there were no state resources to fall back on, their lives would have been hard. We shouldn’t. Like I said, we shouldn’t kid ourselves. But if they’d had these kinds of resources, then public schools that would have been willing to take her up on and different kind of childcare arrangements, I can’t imagine I can’t. Their hearts would would have been intact and my mothers would have been intact and the defining trauma of all of their lives would never have happened.
Krys Boyd:
You were able. To observe that Adele was very much loved, who ran the group home she was living in, in the, you know, past few years. Can you make a judgment as to whether she was happy?
Jennifer Senior:
I mean. I I would say yes. I feel like I can. It she seemed quite content. She was. Ever smiling. Whenever I saw her. Would laugh to herself. Seemed very comfortable. The family seemed like it was full of in jokes. They had their own little. Vaudevillian pattern that emerged many years later after my mom, so that the father would look at her and say who’s the Turkey head and she would say, Daddy, daddy’s the Turkey head and everybody would just collapse and giggles, you know, I mean, I. Definitely would have said that she seemed happy in some ways happier than I am. I mean, I’m a neurotic mess all the time. She seemed, in some ways a lot. You know, her, her life seemed very straightforwardly lovely in some ways. But look, I don’t know. I don’t know what kind of frustrations she tolerates. I also don’t know what kind of PTSD she’s suffering from. From her 30 years in institutional life, practically it you wouldn’t want to be too cavalier about this. But what from what I saw, yeah, sure.
Krys Boyd:
It is also really moving to me that there are people who it’s it sounds pretty clear that the people running this group home were not just in it because this was a way to put food on the table and earn money like they cared about their clients.
Jennifer Senior:
Totally. And you know, a group home. This again was residential care. If you, the distinction is actually. It’s a fine one, but it was their house and they had three people living in it with intellectual disabilities, and my aunt was one of them, and this was way more than a paycheck. These people definitely got pleasure out of the three people in their home.
Krys Boyd:
What do you think is different today when families are? Faced with these challenges, like are they are, are people today who have a child with significant disabilities, like immediately provided with resources, or do they still have to kind of hunt down the sort of help they might need?
Jennifer Senior:
Oh, that’s a great question. And I think it’s something in between and a lot of it will depend on how good your pediatrician is. Honestly, if you’ve got a good pediatrician and an attentive pediatrician, your pediatrician will be able to direct you and guide you. But how many parents have specialty? It’s Kids. Do I know who are still banging their heads against the wall trying to figure out answers to very simple things, and the second you are engaging the state on these. Matters. You are engaging the state bureaucracy and there’s a lot of red tape and a lot of papers to fill out and a lot of stuff. Just a lot of paper oceans of. It. So it’s 100 times better than what it was, and it could probably be. 10 times simpler and. There could be a lot more resources. I think any parent of a special needs kid will tell you that the best resources remain other parents.
Krys Boyd:
Hmm.
Jennifer Senior:
Maybe, and not doctors, and not even the state, but the state is providing a lot of these things gratis. I think the Americans with Disability Act might even have mandated part of it, and it’s distributed on a state level, but it was mandated at a federal level. I may be wrong about this, but it’s some iteration of that, so we have really come miles and miles from we’re we’re miles and miles ahead. Of where we. Were but there’s still plenty left to do. You know, there always is.
Krys Boyd:
Are the things you now understand about your mother? Who sounds amazing, are, but are there things that you understand about the way she is based on knowing this? Huge loss in her life for all those years.
Jennifer Senior:
Uh, that’s such a wonderful question so. I I’m torn about how to answer this. I will tell you one thing that didn’t make it into this story that I think is really interesting my, and then I’ll tell you something that did make it. My mother had always told me. That she thought she had to be good enough for two and achieve enough for two. Because. Her sister had been sent away. That parts in the story, my great grandmother very clumsily said that to her, but also that my mother told me when I was growing up that she lived in terror of being sent away herself. If she didn’t do everything. Sadly. That that’s what she assumed, and I revisited that with her because I thought, gosh, what an interesting feature of my mother’s sychology to live with that horrible fear that at any moment one false step and boom, you’re sent away, never to be seen again or heard from. And my mother said, you know what, I don’t really think that’s true. I think that when I went into therapy in my 20s, a therapist said that to me, and I glommed onto it. And it’s tidy and it’s literary. But you know what? I don’t buy it. I don’t think I walked around with that fear. And I looked at her and I said, Are you sure? And she said, are we sure of anything? Like, I don’t know, but she seemed. I mean, she was so unsure and so underwhelmed by it that I didn’t even include it in the story. But the thing I did include is that. My mom is definitely a neat nick and very, very disciplined and very, very controlled. I am like the Oscar Madison to her fierce anger. She is. I’m like a slob. I’m, you know, whatever. Boisterous I I I filed things late I, you know, I’ve I’ve I’ve whatever and she the opposite. She’s meticulous. And I always assumed OK she needs control because she lost control when she was 6 1/2 and this was the defining trauma in her life. And from then on she was going to be hellbent on control. But then I meet my aunt and she’s the exact same way. She’s identical. Like she’s a meet. Nick, you put one thing out of place and she like, moves it if you want. In fact, they used to have, like, this thing in her house. This is another little in joke. One would walk around the house. With his shirt Untucked and she would run over and just immediately start tucking it in, it drove her crazy. Crazy to see something on tuck. So then I thought ohh, maybe it’s just this is what the helper and sisters are like. They just it’s scribbled into some weird gene, but then it was pointed out to me by one of the ayalas, not the. Mother or father, but one of their daughters, who knew Adele very well, she said to me. You know, I don’t know. Maybe Adele was traumatized, just like your mother. I mean, she lived in Willowbrook for all those years. It was a hell hole. Maybe this is her way of asserting control. And I thought, Oh my God. So maybe now I’m back to the first hypothesis. Maybe my mother was a controlled and, you know, needed. I don’t want to say control freak, but you know, needed order in order to compensate for all the ways that she had lost control so completely. Maybe it was true, maybe hypothesis A. Was correct. It’s not a family gene. I don’t know. I mean, I’m certainly not. In any way I can. You know, I don’t feel any great deep desire for order. If that’s a gene she didn’t pass it on to me and my dad had it too, by the way. So it skipped me completely. Just don’t have it.
Krys Boyd:
Jennifer Senior is staff writer at The Atlantic, which published her essay The Ones we sent away. Jen, it’s. Always nice to speak with you. Thanks so much for making time.
Jennifer Senior:
Likewise, and thank you, and this was really fun and thanks for indulging my little literary bit of vanity. Yeah. Thanks.
Krys Boyd:
You can find us on Facebook and Instagram. Just search for KERA Think. The podcast is available wherever you get podcasts. You just need to search for KERA Think and subscribe, or you can always listen at our website, think.kera.org.
I’m Krys Boyd. Thanks for listening. Have a great day.
