{"id":2488,"date":"2023-11-29T13:00:29","date_gmt":"2023-11-29T13:00:29","guid":{"rendered":"https:\/\/niemanstoryboard.org\/2023\/11\/29\/developmental-disabilities-jennifer-senior-first-perosn-narrativep-ethics\/"},"modified":"2025-03-19T16:43:03","modified_gmt":"2025-03-19T16:43:03","slug":"developmental-disabilities-jennifer-senior-first-perosn-narrativep-ethics","status":"publish","type":"post","link":"https:\/\/niemanstoryboard.org\/2023\/11\/29\/developmental-disabilities-jennifer-senior-first-perosn-narrativep-ethics\/","title":{"rendered":"Jennifer Senior follows a personal trail to undo the erasure of her disabled aunt"},"content":{"rendered":" \n
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As a journalist who has covered disability issues, I\u2019ve 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.<\/p>\n\n <\/div>\n <\/div>\n \n

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I was gripped from start to finish when I sat down to read The Atlantic\u2019s September 2023 cover story, \u201cThe Ones We Sent Away<\/a>.\u201d<\/strong>  Atlantic staff writer Jennifer Senior<\/a> explores a horrific chapter of U.S. history in the mid-1900s when many people with intellectual disabilities were sent to institutions and neglected \u2014 left to live in deplorable and inhumane conditions. She weaves the societal failures with an intimate story of her own family.<\/p>\n\n <\/div>\n <\/div>\n \n

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Using a personal connection to drive the narrative\u00a0<\/h2>\n\n <\/div>\n <\/div>\n \n
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Senior\u2019s 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\u2019s life or even existence, until a viral tweet, about a young man with developmental disabilities, jogs memories of her aunt. As she writes:<\/p>\n\n <\/div>\n <\/div>\n \n

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Before this very moment, in fact, I have forgotten she exists at all.<\/p>\n\n <\/div>\n <\/div>\n<\/blockquote>\n\n <\/div>\n <\/div>\n \n

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That sends Senior on a journey to understand both the realities of her aunt\u2019s experience, but also that of her mother, who lost any relationship with her younger sister when they were still children. Senior\u2019s exploration unspools a complex story about family secrets, trauma and memory, set against the broader backdrop of disability policy in the U.S.<\/p>\n\n <\/div>\n <\/div>\n \n

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Jennifer Senior<\/figcaption><\/figure>\n\n <\/div>\n <\/div>\n<\/div> \n
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Her story was an effort to combat the erasure of Adele in Senior\u2019s family, as well as others in their own lineages. It was a way to put people\u2019s names back on the tree, as Senior puts it: \u201cI\u2019m at the stage of my career where I\u2019m trying to grasp at subjects that have more meaning for me, and may have more meaning for readers.\u201d<\/p>\n\n <\/div>\n <\/div>\n \n

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The universality of her aunt\u2019s story also was a draw for her: \u201cEspecially now when we\u2019re all busy arguing, it\u2019s 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.\u201d<\/p>\n\n <\/div>\n <\/div>\n \n

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The challenge of reporting reliably on yourself\u00a0<\/h2>\n\n <\/div>\n <\/div>\n \n
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Senior spends time chronicling Adele\u2019s time spent in multiple institutions, including the notorious Willowbrook State School<\/a> on Staten Island, to her aunt\u2019s 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\u2019d been told about her sister during childhood.<\/p>\n\n <\/div>\n <\/div>\n \n

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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.<\/p>\n\n <\/div>\n <\/div>\n \n

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Weighing issues of ethics, agency and consent\u00a0<\/h2>\n\n <\/div>\n <\/div>\n \n
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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\u2019s story, what to disclose about her family\u2019s complex dynamic, and how to grapple with what she had been told about her aunt in contrast to who Adele really was.<\/p>\n\n <\/div>\n <\/div>\n \n

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Storyboard spoke with Senior to discuss core elements that made the story stand out. Our conversation has been edited for length and clarity.<\/p>\n\n <\/div>\n <\/div>\n \n

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I\u2019d love to know a little bit more about first-person reporting and how that relates to pursuing this story, particularly given that you\u2019ve taken this story approach in the past.
<\/strong>I wasn\u2019t trained for first-person reporting. It\u2019s recent for me. The 9\/11 story, \u201cWhat Bobby McIlvaine Left Behind<\/a>,\u201d was only my second one. (EDITOR\u2019S NOTE: Senior spoke to Nieman Storyboard about the McIlvaine profile<\/a>, which was awarded the 2022 Pulitzer Prize in feature writing.)<\/em>  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.<\/p>\n\n <\/div>\n <\/div>\n \n

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The Bobby McIlvaine story was kind of a fluke. My fourth day on the job at The Atlantic, editor-in-chief Jeff Goldberg<\/a> called me to welcome me. He said \u2018We\u2019ll talk about stories you want to do, but quickly, we\u2019re going to do a 9\/11 anniversary package. We\u2019ve got people who are doing the big policy pieces and foreign policy deep dives, but what we don\u2019t have is a story about a family to whom this happened. Would you happen to know of anyone?\u2019 And I said, \u2018Oh, my God, I actually do.\u2019<\/p>\n\n <\/div>\n <\/div>\n \n

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So my first story for The Atlantic was a deeply personal one that I\u2019d been wanting to tell for 20 years. The second was \u201cIt\u2019s Your Friends Who Break Your Heart.<\/a>\u201d 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.<\/p>\n\n <\/div>\n <\/div>\n \n

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What skills or reporting techniques are important when a writer is delving into this approach for the first time?
<\/strong>I think having news chops and knowing how to do straight-up feature reporting and profile writing \u2014 the more traditional stuff \u2014 actually is essential for first-person reporting. You don\u2019t want your first-person stuff to be solipsistic or narcissistic or inaccessible \u2014 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.<\/p>\n\n <\/div>\n <\/div>\n \n

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Do you feel like the goal is to be universal?
<\/strong>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\u2019re reading a memoir about addiction, even if you\u2019re not an addict, there\u2019s just enough in there about families, or about brokenness, to still relate. The best novels somehow get at things that are universal. You don\u2019t have to have a reporting background; most novelists don\u2019t and manage to make people feel welcome at their table. It\u2019s not a requirement, but it can help.<\/p>\n\n <\/div>\n <\/div>\n \n

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What\u2019s your strategy and approach when your reporting includes yourself?
<\/strong>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, \u2018Now I have to tell you that the McIllvaines are dear friends.\u2019 You have to quickly disclose. You also want to take nothing for granted and fact-check your own memory. We are really unreliable narrators.<\/p>\n\n <\/div>\n <\/div>\n \n

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Mary McCarthy had the right idea in \u201cMemories of a Catholic Girlhood.\u201d<\/a> With each chapter, she had an italicized preface saying all the ways that she wasn\u2019t 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.<\/p>\n\n <\/div>\n <\/div>\n \n

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How do you fact-check yourself?
<\/strong>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\u2019s family, who ran the group home where Adele lived the last years of her life, about certain aspects of my aunt\u2019s life and personality. I had certain memories about the size of Adele\u2019s vocabulary \u2014 how narcotized she was \u2014 but wasn\u2019t sure of them. I had to reconstruct all that.<\/p>\n\n <\/div>\n <\/div>\n \n

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It\u2019s obviously really tricky when you\u2019re writing about yourself and your family, including people who may or may not know that you\u2019re writing about their experience. What kinds of conversations did you have with family members? Did you need their agreement before you pursued this project?
<\/strong>I had to have my mom\u2019s buy-in from the beginning. She was the family member still alive from that era besides my aunt. I said to my mom, \u2018I really want to visit Adele and get to know her. You don\u2019t have to come.\u2019 The second I said that, my mom was like \u2018No, no, I\u2019ll come.\u2019 I never knew if my mom felt like she had<\/em> to come with me because it would have been embarrassing to have me go off and do this on my own \u2014 like she would have felt emotionally weak if she couldn\u2019t 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.<\/p>\n\n <\/div>\n <\/div>\n \n

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Was Adele aware you were writing about her?
<\/strong>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 \u2014 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\u2019 last name, and was prepared to be really vague about where they lived. They didn\u2019t have any problem with me using their name; they were very open and trusting and eager to help me get to know my aunt.<\/p>\n\n <\/div>\n <\/div>\n \n

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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?
<\/strong>Disabled journalists have not written to me. I\u2019m fascinated by this. I suppose on one hand, that\u2019s a good thing because nobody\u2019s yelling at me. But it is a surprising silence.<\/p>\n\n <\/div>\n <\/div>\n \n

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I have heard plenty from people with disabled relatives, who are like, \u2018Oh, my God, this happened to my mom, this happened to my sister, my son.\u2019 The outpouring is unbelievable and so heartbreaking. A 98-year-old woman wrote to me and said, \u2018I didn\u2019t institutionalize my kid. It took so much out of me not to, and all the doctors gave me such a hard time about it.\u2019 I also got lots of letters from parents of much younger kids who said, \u2018Thank God my child lives at home with me,\u2019 or \u2018Thank you for writing this. I have such hard days with my kids sometimes, and it\u2019s a powerful reminder that it\u2019s worth it because I can\u2019t imagine my life without my son or daughter.\u2019 Those made me cry.<\/p>\n\n <\/div>\n <\/div>\n \n

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I also had a weird number of letters from people who worked<\/em> at these institutions \u2014 a few from people who even worked at Willowbrook \u2014 saying things like, \u2018You don\u2019t know the half of it, it was so goddamn awful.\u2019 And I got stuff from professors in disability studies saying \u2018I\u2019m going to be teaching this.\u2019<\/p>\n\n <\/div>\n <\/div>\n \n

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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?
<\/strong>I think time and experience tells you how to thread needles and how to write with nuance. I don\u2019t think I could do it if I didn\u2019t have 13,500 words. With that length, you\u2019re 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, \u2018Parents shouldn\u2019t be expected to be saints.\u2019 There are going to be instances where putting your child in a home is appropriate, and it\u2019s right for the family, and it\u2019s right for the child, and it\u2019s 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.<\/p>\n\n <\/div>\n <\/div>\n \n

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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 \u2014 where their wishes come in, and what that person wants for themselves. I guess that\u2019s hard, particularly in a case like Adele, where resources were much more limited back then.
<\/strong>Oh God, yeah. It\u2019s painful. You\u2019re 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\u2019t have the patience. They don\u2019t have the resources. They don\u2019t have the life skills. You could imagine that there are some sensitive settings that would be better. You don\u2019t 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.<\/p>\n\n <\/div>\n <\/div>\n \n

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I\u2019m 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 \u2014 especially in media. How did you think about which terms to include that were used historically versus words used now?
<\/strong>I\u2019m horrified to say this, but if I\u2019m not careful, I still say \u201cprofoundly retarded\u201d 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 \u2014 one in particular \u2014 kept trying to use the word \u201cableist.\u201d I was insistent that I was never going to use the word ableist. Not in my own voice and not in a quote.<\/p>\n\n <\/div>\n <\/div>\n \n

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Why?
<\/strong>Because it\u2019s an ivory tower word. Grace Feist, whose adopted daughter, Emma, has significant developmental delays, doesn\u2019t use the word ableist. Grace was a Trump voter. (While I hate speaking in generalizations, I think it\u2019s safe to say that Trump voters are a lot more wary of the language that comes from identity politics and activism \u2014 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\u2019t want anybody thinking that this was some Ivy League approach to thinking through disability. I didn\u2019t want anyone feeling like if they didn\u2019t use the right words, they were being shamed. Grace doesn\u2019t use the word \u201cableist\u201d 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 \u201cdiscriminatory policies.\u201d<\/p>\n\n <\/div>\n <\/div>\n \n

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Did you learn things through this story that changed how you think about these issues and about chronicling family history?
<\/strong>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\u2019re too old for that dynamic to really be much different. So I guess I had to let go of a childish wish. Which isn\u2019t to say that I don\u2019t have a nice relationship with my mom \u2014 I do.<\/p>\n\n <\/div>\n <\/div>\n \n

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About the issue itself, I\u2019m 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, \u2018she\u2019s my aunt, so of course I\u2019m allowed to write about her.\u2019 That was a blind spot. It was pointed out to me \u2014 not by the ethicists but by the New York State Agency, of all people. They really didn\u2019t want me writing about my aunt because they were afraid I was going to do some expos\u00e9.<\/p>\n\n <\/div>\n <\/div>\n \n

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They thought that I fancied myself another Geraldo Rivera<\/a>, doing some kind of quasi Willowbrook follow-up to his expos\u00e9 of the school<\/a>, which was not at all what I was doing. So they kept saying \u2018You\u2019re violating your aunt\u2019s privacy.\u2019 They just didn\u2019t 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.<\/p>\n\n <\/div>\n <\/div>\n \n

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It\u2019s 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?
<\/strong>In some ways, it\u2019s going to come down to decisions you make about what\u2019s 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\u2019t mean I think less of memoirists who do. They\u2019re making whatever decisions they have to make.<\/p>\n\n <\/div>\n <\/div>\n \n

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Do you feel like this process was healing for you or healing for your mom?
<\/strong>I feel really sad that it wasn\u2019t 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\u2019t 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.<\/p>\n\n <\/div>\n <\/div>\n \n

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It almost opens up a whole world that \u201ccould have been\u201d and now cannot be.<\/strong>Yes. And that counterfactual is going to torture her.<\/p>\n\n <\/div>\n <\/div>\n \n

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* * *<\/p>\n\n <\/div>\n <\/div>\n \n

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Carly Stern<\/strong> is a freelance reporter based in San Francisco who covers housing, disability policy, urban life and economic inequality.<\/em><\/p>\n\n <\/div>\n <\/div>\n","protected":false},"excerpt":{"rendered":"

The Atlantic writer uncovers the painful truth behind the treatment of a generation of Americans warehoused in asylums and denied by families<\/p>\n","protected":false},"author":1,"featured_media":9798,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[7],"tags":[],"topics":[],"authors":[8],"issue":[],"class_list":["post-2488","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-5-questions","authors-carly-stern"],"acf":[],"yoast_head":"\nJennifer Senior follows a personal trail to undo the erasure of her disabled aunt - Nieman Storyboard<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/niemanstoryboard.org\/2023\/11\/29\/developmental-disabilities-jennifer-senior-first-perosn-narrativep-ethics\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Jennifer Senior follows a personal trail to undo the erasure of her disabled aunt - 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