Jennifer Senior follows a personal trail to undo the erasure of her disabled aunt

By Carly Stern

As a journalist who has covered disability issues, I’ve long been interested in nuanced and in-depth narratives surrounding the vast range of experiences with disability. That includes the lived experiences of people with disabilities as well as those of the people who love them.

I was gripped from start to finish when I sat down to read The Atlantic’s September 2023 cover story, “The Ones We Sent Away.”  Atlantic staff writer Jennifer Senior explores a horrific chapter of U.S. history in the mid-1900s when many people with intellectual disabilities were sent to institutions and neglected — left to live in deplorable and inhumane conditions. She weaves the societal failures with an intimate story of her own family.

Using a personal connection to drive the narrative 

Senior’s window into this story is personal and revelatory: Her grandparents sent her aunt, Adele, to institutions in New York without knowing the conditions she would experience. Senior knew little of her aunt’s life or even existence, until a viral tweet, about a young man with developmental disabilities, jogs memories of her aunt. As she writes:

Before this very moment, in fact, I have forgotten she exists at all.

That sends Senior on a journey to understand both the realities of her aunt’s experience, but also that of her mother, who lost any relationship with her younger sister when they were still children. Senior’s exploration unspools a complex story about family secrets, trauma and memory, set against the broader backdrop of disability policy in the U.S.

Her story was an effort to combat the erasure of Adele in Senior’s family, as well as others in their own lineages. It was a way to put people’s names back on the tree, as Senior puts it: “I’m at the stage of my career where I’m trying to grasp at subjects that have more meaning for me, and may have more meaning for readers.”

The universality of her aunt’s story also was a draw for her: “Especially now when we’re all busy arguing, it’s a lot easier to find consensus around the heartbreak we feel when we lose a friend, or the grief we feel when we lose a loved one or one of our disabled relations.”

The challenge of reporting reliably on yourself 

Senior spends time chronicling Adele’s time spent in multiple institutions, including the notorious Willowbrook State School on Staten Island, to her aunt’s later years in a caring group home in upstate New York. Senior takes the reader through her efforts to meet and reconnect with Adele (who has since passed away). She also navigates tricky territory as her mother is forced to reconsider the misleading stories she’d been told about her sister during childhood.

In addition to interviewing her own family members and documenting her own experiences and emotions on the way, Senior had to lean on archival material and do rigorous fact-checking of her own memories, particularly with the knowledge that time and trauma can alter memory.

Weighing issues of ethics, agency and consent 

Disability history, U.S. history and media are littered with examples of disabled people not being given a chance to speak for themselves or control their own narratives. Senior spoke with a range of sources, including disability experts, to consider the ethics, privacy and consent issues surrounding how to responsibly elevate her aunt’s story, what to disclose about her family’s complex dynamic, and how to grapple with what she had been told about her aunt in contrast to who Adele really was.

Storyboard spoke with Senior to discuss core elements that made the story stand out. Our conversation has been edited for length and clarity.

I’d love to know a little bit more about first-person reporting and how that relates to pursuing this story, particularly given that you’ve taken this story approach in the past.
I wasn’t trained for first-person reporting. It’s recent for me. The 9/11 story, “What Bobby McIlvaine Left Behind,” was only my second one. (EDITOR’S NOTE: Senior spoke to Nieman Storyboard about the McIlvaine profile, which was awarded the 2022 Pulitzer Prize in feature writing.)  My first personal piece was 20 years earlier, about the ridiculous, circular, rhetorically tautological process you go through when you break up with your shrink.

The Bobby McIlvaine story was kind of a fluke. My fourth day on the job at The Atlantic, editor-in-chief Jeff Goldberg called me to welcome me. He said ‘We’ll talk about stories you want to do, but quickly, we’re going to do a 9/11 anniversary package. We’ve got people who are doing the big policy pieces and foreign policy deep dives, but what we don’t have is a story about a family to whom this happened. Would you happen to know of anyone?’ And I said, ‘Oh, my God, I actually do.’

So my first story for The Atlantic was a deeply personal one that I’d been wanting to tell for 20 years. The second was “It’s Your Friends Who Break Your Heart.” That was me trying to salvage an episode of a podcast that I was working on previously for The New York Times opinion, an episode that never aired so I later repurposed for print.

What skills or reporting techniques are important when a writer is delving into this approach for the first time?
I think having news chops and knowing how to do straight-up feature reporting and profile writing — the more traditional stuff — actually is essential for first-person reporting. You don’t want your first-person stuff to be solipsistic or narcissistic or inaccessible — accessible only to you. It will be most universal if you have a good story sense about how to make your story feel accessible to everyone.

Do you feel like the goal is to be universal?
Yes, I do. In the best memoirs, people are underlining furiously because they feel like the author is speaking to them in some way. If you’re reading a memoir about addiction, even if you’re not an addict, there’s just enough in there about families, or about brokenness, to still relate. The best novels somehow get at things that are universal. You don’t have to have a reporting background; most novelists don’t and manage to make people feel welcome at their table. It’s not a requirement, but it can help.

What’s your strategy and approach when your reporting includes yourself?
Announce your relationship. In the case of the McIlvaine piece, I came through the front door really early. I think it was in the second section when I said, ‘Now I have to tell you that the McIllvaines are dear friends.’ You have to quickly disclose. You also want to take nothing for granted and fact-check your own memory. We are really unreliable narrators.

Mary McCarthy had the right idea in “Memories of a Catholic Girlhood.” With each chapter, she had an italicized preface saying all the ways that she wasn’t sure if she got stuff right and all the dialogue she was pretty convinced she was fudging. I think you have to do that. I was very careful to fact-check myself and not rely on my own crap memory. You want to tape record conversations with your mother, for instance, and rely heavily on archival material when there is material. I had to not assume that my mother remembered everything correctly.

How do you fact-check yourself?
I had to call other people and check on my mother about timelines. I was looking at records to see when Adele moved. I had to ask Carmen Ayala’s family, who ran the group home where Adele lived the last years of her life, about certain aspects of my aunt’s life and personality. I had certain memories about the size of Adele’s vocabulary — how narcotized she was — but wasn’t sure of them. I had to reconstruct all that.

It’s obviously really tricky when you’re writing about yourself and your family, including people who may or may not know that you’re writing about their experience. What kinds of conversations did you have with family members? Did you need their agreement before you pursued this project?
I had to have my mom’s buy-in from the beginning. She was the family member still alive from that era besides my aunt. I said to my mom, ‘I really want to visit Adele and get to know her. You don’t have to come.’ The second I said that, my mom was like ‘No, no, I’ll come.’ I never knew if my mom felt like she had to come with me because it would have been embarrassing to have me go off and do this on my own — like she would have felt emotionally weak if she couldn’t summon the courage to join me. I made it very clear that I was more than happy to just get the address of the Ayala family and drive up there, but I think she instantly felt like she had to go, too.

Was Adele aware you were writing about her?
Not at all. So that was really tough to figure out. I had faith that I was going to write a story that would honor her — treat her with care and honor her experience. I also spoke to a number of ethicists and worked through what the difficulties were. I felt that erasure was bad, and our family had had enough of it. Had Adele not died, I also was not going to use her last name (which was different from Senior). Nor was I going to mention the Ayalas’ last name, and was prepared to be really vague about where they lived. They didn’t have any problem with me using their name; they were very open and trusting and eager to help me get to know my aunt.

A big part of this piece is about disability history. What has the response to your piece been like among disabled journalists and other folks in the disability justice community?
Disabled journalists have not written to me. I’m fascinated by this. I suppose on one hand, that’s a good thing because nobody’s yelling at me. But it is a surprising silence.

I have heard plenty from people with disabled relatives, who are like, ‘Oh, my God, this happened to my mom, this happened to my sister, my son.’ The outpouring is unbelievable and so heartbreaking. A 98-year-old woman wrote to me and said, ‘I didn’t institutionalize my kid. It took so much out of me not to, and all the doctors gave me such a hard time about it.’ I also got lots of letters from parents of much younger kids who said, ‘Thank God my child lives at home with me,’ or ‘Thank you for writing this. I have such hard days with my kids sometimes, and it’s a powerful reminder that it’s worth it because I can’t imagine my life without my son or daughter.’ Those made me cry.

I also had a weird number of letters from people who worked at these institutions — a few from people who even worked at Willowbrook — saying things like, ‘You don’t know the half of it, it was so goddamn awful.’ And I got stuff from professors in disability studies saying ‘I’m going to be teaching this.’

In my own reporting on disability over the years, a lot of sources have talked to me about the tension between folks with disabilities speaking for themselves versus the experiences of their caregivers or family members. How did you thread that needle or think about those differing perspectives?
I think time and experience tells you how to thread needles and how to write with nuance. I don’t think I could do it if I didn’t have 13,500 words. With that length, you’re fortunate to be able to get a lot in. There were some sentences that I felt very strongly about including, like a line that said, ‘Parents shouldn’t be expected to be saints.’ There are going to be instances where putting your child in a home is appropriate, and it’s right for the family, and it’s right for the child, and it’s right for the other siblings. This is acknowledging the difficulties of caregivers. There are some disability justice advocates who are adamant that kids need to be kept home at all costs.

I have a lot of folks in my circles with relatives who have disabilities, and I often struggle with how to consider the person whose future is being discussed — where their wishes come in, and what that person wants for themselves. I guess that’s hard, particularly in a case like Adele, where resources were much more limited back then.
Oh God, yeah. It’s painful. You’re guessing at their wishes. I think the family is generally going to be a better environment, but not always. There are some parents who are temperamentally poorly suited to take care of a disabled child. They don’t have the patience. They don’t have the resources. They don’t have the life skills. You could imagine that there are some sensitive settings that would be better. You don’t want to make a lot of flat, declarative statements. And our social safety net in the U.S. is an embarrassment. The answer is truly that there are no good answers. There are only wretchedly imperfect ones.

I’m fascinated by how language changes over time, and how terms we use reflect the zeitgeist of the period. For language describing disability, and intellectual disabilities in particular, it can be really fraught — especially in media. How did you think about which terms to include that were used historically versus words used now?
I’m horrified to say this, but if I’m not careful, I still say “profoundly retarded” because I grew up saying it. That was the term then. I had to retrain myself not to say that. But another thing I was very adamant about, in the other direction, was that all the academics — one in particular — kept trying to use the word “ableist.” I was insistent that I was never going to use the word ableist. Not in my own voice and not in a quote.

Why?
Because it’s an ivory tower word. Grace Feist, whose adopted daughter, Emma, has significant developmental delays, doesn’t use the word ableist. Grace was a Trump voter. (While I hate speaking in generalizations, I think it’s safe to say that Trump voters are a lot more wary of the language that comes from identity politics and activism — not to mention language that looks like it comes from Ivy League test tubes; the educational divide between voters is very real.) I wanted as many people to relate to my piece as possible. I didn’t want anybody thinking that this was some Ivy League approach to thinking through disability. I didn’t want anyone feeling like if they didn’t use the right words, they were being shamed. Grace doesn’t use the word “ableist” and she is an awesome mom. She is doing right by Emma every day, and she would feel very alienated by the word ableist. Instead, I used “discriminatory policies.”

Did you learn things through this story that changed how you think about these issues and about chronicling family history?
I had this childish hope that it would change my relationship with my mother a little bit and give me a deeper understanding of who she was. And it did. But she has organized her whole psychological infrastructure around this trauma. We’re too old for that dynamic to really be much different. So I guess I had to let go of a childish wish. Which isn’t to say that I don’t have a nice relationship with my mom — I do.

About the issue itself, I’m embarrassed to say I was slow to grasp that there was a real moral dimension about consent. It took me some time to understand that I was going to have to wrestle with that. I just thought, ‘she’s my aunt, so of course I’m allowed to write about her.’ That was a blind spot. It was pointed out to me — not by the ethicists but by the New York State Agency, of all people. They really didn’t want me writing about my aunt because they were afraid I was going to do some exposé.

They thought that I fancied myself another Geraldo Rivera, doing some kind of quasi Willowbrook follow-up to his exposé of the school, which was not at all what I was doing. So they kept saying ‘You’re violating your aunt’s privacy.’ They just didn’t want me writing the story, invoking this for purely cynical reasons, but the truth was that it was an actual issue. They were hiding behind this thing that was real in order to stop me from doing the piece. I had to take their concerns seriously, but also still write it and figure out the ethical and appropriate way to do it.

It’s tricky writing about intimate and really personal relationships. What would you say to writers who are considering a foray into memoir or family stories for the first time?
In some ways, it’s going to come down to decisions you make about what’s right for you and how you make peace with that. Personally, I could not write about loved ones by name who disappointed me. I could not write unflattering things about my family, even though there are plenty of unflattering things to be said about my family. I could not write unflattering things about my friends by name, even though there are things to be said about them, too. That doesn’t mean I think less of memoirists who do. They’re making whatever decisions they have to make.

Do you feel like this process was healing for you or healing for your mom?
I feel really sad that it wasn’t more healing for my mom. I did this thinking that this would be a win-win-win for the family. Adele will win, I will win, my mom will win. I think Adele won. And I think that I won. What pains me is that I don’t know if my mom won because she never got to know her sister. The moment she learned that there was more to her sister than she had ever been led to believe was the moment that her sister left this world. The timing was cruel.

It almost opens up a whole world that “could have been” and now cannot be.Yes. And that counterfactual is going to torture her.

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Carly Stern is a freelance reporter based in San Francisco who covers housing, disability policy, urban life and economic inequality.