Chloé Cooper Jones on Writing About Disability and Engaging With Beauty

I’ve known the writer Chloé Cooper Jones since 2011. We’ve gotten drinks in a bar in Lawrence, eaten gourmet doughnuts from a food truck in Austin, attended a mutual best friend’s wedding in Salt Lake City. (Chloé gave a lovely reading; I gave an ill-conceived toast that made light of my Mormon ancestry and featured jokes about incest and polygamy.)

It was only recently, though, that Chloé and I began talking about the thing most strangers notice about us right off the bat: we’re both stunningly gorgeous.

Oh, yes, and we both have lived with disability our entire lives.

I walk with a limp from cerebral palsy and have a brain that, on good days, leads my husband to liken me to an absentminded professor and on bad days has friends and coworkers using words like “learned helplessness” and “weaponized incompetence” to describe my general state of disarray. If my big sister is in town, she’ll physically block my husband from going up the stairs to get my shoes. “This is ridiculous! Greg can do it.”

No one would question the alacrity of Chloé’s mind or work ethic, at least not anyone who has had the pleasure of reading her essays, stories, and journalism over the past decade. Chloé’s 2019 article for The Verge about Ramsey Orta, the man who filmed the killing of Eric Garner, made her the rare freelance journalist to be named a finalist for the Pulitzer Prize. She has filed award-winning treatises on tennis greats Roger Federer and Juan Martin del Porto and reported from the snowy glitz of the Sundance Film Festival.

Chloé traces much of this journey in her dazzling new memoir, Easy Beauty, though perhaps no single piece she has published is more relevant to the book than an essay she wrote for The Believer in 2019 about a sojourn to Rome, Venice, Lake Como, and Milan to confront what the piece calls “a body excluded from beauty amid Italy’s natural splendor.”

It was one of the first times many of Chloé’s readers, including me, had ever encountered disability in her work. In the piece, Chloé writes about being born with a rare congenital disorder called sacral agenesis, “which means that my sacrum, the part of the spine that connects my spinal column to the hips, failed to form,” she explains in the piece. Hers is a body “visually marked by difference.”

Easy Beauty is an exploration of that difference, a book that unflinchingly plumbs the paradoxes of dark tourism in Cambodia, the “blunt, triumphant” but ultimately redeeming spectacle of a Beyoncé concert in Milan and the ableist under- and overtones at a Sundance party where she shares a moment of bodily communion with actor Peter Dinklage.

My conversation with Chloé took place over Zoom and has been edited for clarity and concision. And to make us both sound exactly as smart as we are.

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Greg Marshall: Can you talk about the decision to start writing nonfiction about your life and specifically about disability?

Chloé Cooper Jones: There was this night I write about in the beginning of the book where I was out with two friends and one of them made the argument that from the position of an ethical philosopher, disabled people shouldn’t be alive, and that eugenics actually had a great moral grounding to it, it’s just unpopular to say so. And, in the midst of that argument, he also said, “I don’t think anyone would deny that disability inherently makes your whole life worse.” I was like, I do disagree with that, but I didn’t know how to articulate that disagreement.

I’d heard these arguments my whole life, that the disabled life is somehow inherently inferior or inherently less worth living. But what was new was a realization for me that I didn’t have a very good language to defend the value of my life, the worthiness of my life. And that really shook me and made me feel like if I don’t have a language for talking about what my life is like, and why a disabled life is worth living, or the richness of a disabled life, then I am, to some degree, complicit with these bad beliefs about disability.

GM: Had you written about disability before?

CCJ: I had up to that point never written about disability, ever. I didn’t study disability theory or history. I didn’t learn my own history. I didn’t learn my legal history and the rights that I enjoy because other disabled people have fought for them. I didn’t talk about it with my friends. I didn’t talk about it with my husband. I really resented when strangers brought it up to me. And I just acted as if it were not real or a part of my life, even though I have a very visible disability that can’t be hidden in any way. It created a sort of constant dissonance.

 GM: You and your husband were also raising a young kid at the time.

CCJ: At the time of this conversation, my son Wolfgang was four years old. And four-year-olds are phenomenal mimics and he was mimicking a lot of my bad actions and behaviors, especially when strangers or other kids would stare at me or, or say things to me, or look at me. I had a natural antagonism toward every stranger whenever we went out in public. That was not a thing I wanted to pass on.

GM: I wonder if those feelings were heightened because of the work you were doing as a journalist. When reporting a story, you deal with a ton of strangers.

CCJ: I was traveling a lot for journalism stuff, and also for my academic work, as I was trying desperately to figure out how to finish a degree [in philosophy] and failing at that. And while I was traveling, I just made a conscious decision to not pretend I wasn’t disabled, to simply acknowledge it. Not just in the world, but in my own mind, to allow my mind to turn to the reality of that, which included paying attention and not pretending that other people weren’t staring at me and not dismissing people’s comments but actually thinking about them. And also thinking about the pain I felt or the fear I felt or the ways in which I put presumptions on people or situations that turned out not to be fair, just the whole complex quagmire of doing identity in public. I didn’t know it at the time, but that was the start of Easy Beauty.

GM: Do you think we’re in a moment of transformation as far as disabled people telling our own stories?

CCJ: I don’t know where we are in the State of the Union on disability. My first reaction is like, we’re still way, way, way, way far behind. People’s understanding of disability is still so bad. Across the board. I feel like I’m seeing ableist nonsense, like, constantly. And yeah, I still feel very forgotten and left out of conversations about diversity or representation. Because of this, you and I will not be able to assume that readers of our work have a social knowledge about disability that can function as an enriching context for our texts.

This leaves us open to being misread and misunderstood more so than if society were better educated about disability or more accustomed to seeing disabled narratives as having a cultural saturation of inherent worth. When we do pop up in cultural narratives it is so we can be killed off to give an able-bodied person a sense of the value of their own lives. We’re all just Owen Meanys headed for the slaughter. People are in for a surprise with our books. I don’t die in mine. I fuck and travel and think about things.

GM: Oh, it’s so true. I was even thinking of the Poisonwood Bible character who has hemiplegia [a kind of cerebral palsy] but then she’s miraculously cured at the end. I think the optimistic angle on what you’re saying is that our books, and all books written by disabled people to come before and after ours, have an opportunity to take up space because there’s such a void to fill.

I do think one benefit of the book as a form is that we can hold a sustained conversation and sustain thoughts without having to keep reintroducing ourselves and our disabilities, the way we would in piecemeal essays (or interview introductions).

For as much as things are starting to change in the publishing world, I wonder: Do you feel added pressure on you or your work because there are still so few memoirs about disability out there, particularly by millennial authors?

CCJ: All I can do is I try to have a specific aim with this book and try to make that aim much larger than myself while also telling a true and very specific story.

GM: From a craft perspective, how do you go about building that larger aim into your work?

CCJ: There is this idea from the philosopher and novelist Iris Murdoch that I use very explicitly in my narrative but then also implicitly, in the structure and craft of the book. Put simply: Iris Murdoch argued that we can only perceive things based on the way that we conceptualize them. And then our perceptions necessarily guide our actions. If we have bad concepts, then we will see things badly, and then we will act badly. So being a good person, she thought, or being a better person in your world, is about shifting those concepts and shifting your perception. When your perception shifts, it shifts your actions.

She had this idea that ethics could happen in the mind.

Being out in nature, or seeing a beautiful work of art, or engaging in a performance that’s particularly beautiful, she thought, had real, tangible power to shift your perceptions. She calls this “unselfing” and gives the following example of it: she’s looking out a window in a sort of frustrated and self-obsessed state of mind when she sees a kestrel. The beauty of the kestrel and the wonder of the natural world takes her out of herself for a moment and forces her to engage with a wider world. This shifts her perspective and grants her a break from the “fat, relentless ego.”

So, the explicit question I ask in the book is whether this engagement in beauty in the world—be it in nature, art, performance, etc.—can help me, as Murdoch claims it will, change something about myself, change my own bad concepts and the perceptions that follow from those concepts. And so I go on this journey to see if that can be true for me. And that’s all done on the surface of the text.

But implicitly, I’m using Murdoch’s theories to ask a second question, which is: If I can compel a reader to spend 288 pages in the mind and life of a disabled person, a person (me) who is flawed but capable, full of agency, with all the same fears that anybody else has, with all the same desires, with a family, with sexual desire, with a body of her own, with an ability to grow—can I shift your concepts of the disabled body? If so, then I can also shift your perceptions and behaviors when it comes to your assessment of the inherent value of the disabled life. Murdoch thinks beauty, art, and engagement with the world and with each other can accomplish this. My book is—on the surface and between the lines—an attempt to test her hypothesis.

GM: It’s a good argument for why representation matters.

CCJ: Exactly. That’s why representation actually matters. It’s not just like, “Oh, I want to see myself on TV.” It’s about shifting perceptions to shift actions.

GM: Has writing the book changed your relationship with your body?

CCJ: Yeah, I mean, absolutely. I think that for me, for a lot of reasons, partially because of pain, which is legitimate, but also just because of stigma, I could live in a profoundly separated state, and that I was like, The only thing that exists in the world is my mind. And my body is not a thing. Like, I don’t see it, and no one else sees it. I never had mirrors in my house. And I had this mental image of myself that was just, like, nothing. A composite lady body. That would just be the image I’d have in my mind. I was just so detached from the reality of my own form.

GM: I think that sense of detachment is so common for disabled people.

CCJ: I always also sought spaces where no one cared that much about my body. I think that’s why I did well in academia, not because I was smarter or better or well-suited for academia but because it was just a space where nobody cared about my body. They just wanted me to turn in seminar papers, which I could do. And I could always have a justification for mistreating or ignoring my body, because I’d be like, “I stayed up late doing seminar papers, and I got drunk with my friends.” I had a whole setup to not care about my body, mistreat my body, ignore my body, take it for granted. Writing the book has changed that a lot because it made me actively look at that behavior. And I think whenever you do that, you gain a little bit of control.

GM: Does it make sense for disabled writers to be lumped together under a single umbrella given the enormous array of experiences in our community? And is that lumping contrary to the work that we do as memoirists trying to tell unique stories?

CCJ: One good side of drawing a big circle around a group of writers and saying these are disabled writers is that some people like me, or like you, when they’re trying to figure out their own place in the world will turn to books for answers or meaning or community. And so, in that sense, I very much want to be included in that circle.

GM: But the book encompasses people who don’t identify as disabled as well.

Absolutely. I really want everybody who reads this book to feel like it’s for them and about them. That it is not just about me, it’s not just about disability as a thing I’m trying to educate you about. When my book is framed that way, I just feel nauseated.

GM: That framing is hilarious because that’s not at all what your book is about.  

CCJ: Everybody reduces everything so it’s not personal. Everybody needs a cute CliffsNotes version or bullet point explanation of what a thing is. But my real, sincere hope is that anybody who picks up this book sees themselves on the page.

GM: I think you just pinpointed one of the perils of having so little disability literature and representation out there: people trying to talk about it resort to cliches.

CCJ: A lot of disability narratives that already exist are about a triumph of the soul. You know, beating the odds, overcoming adversity, and showing all of us why life is worth living. I think when you tell disability stories in that way, in that very trite and rote way, you’re just keeping disability in a comfortable little box. And you’re not asking anyone to engage sincerely with these issues or with what might challenge them or make them uncomfortable. We do not exist to inspire them to love their own lives more. You know, because that is the disability role to a T, for able-bodied people to go, “Wow, I’m so lucky. I’m so blessed. I’m so inspired. If he can do it, if he can run a marathon with one leg, I surely can get off my ass and get on the treadmill. Thank you. High five, I feel good.”

That’s just not what I’m interested in doing.

GM: How would you describe what you are interested in doing?

CCJ: I would like you to level up your understanding, but at the same time, very explicitly, I’m going to try to level up my own. This is not me saying, why don’t you get me? Or, why are you so bad? It’s me going, humans are kind of bad. Me included! There’s all these things we do badly, or we don’t understand. Is there actually a way in which we can change? We’re going try to figure that out together over the course of this book which, hopefully, feels like a parallel journey. The reader and I are companions and never adversaries.

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Easy Beauty by Chloe Cooper Jones is available now from Avid Reader Press.