She’s Been Disabled Her Whole Life. You Can Save Your Pity

She’s Been Disabled Her Whole Life. You Can Save Your Pity

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A few years back I suffered a silly accident that had decidedly unsilly consequences in the form of a severely broken ankle. After it happened, rather than waiting some wise duration to properly heal, I skittered off on yet another bout of travel (apparently you can get itchy feet even if one of those feet is dangling at the end of a trimalleolar fracture) and limped with a too-heavy backpack to Bangkok. Once there I could barely get around the place, for with each step my ankle rattled and shifted like a sack of marbles. My travels have been strained by chronic pain ever since, and they probably always will be.

I related this story to philosophy professor, journalist, and Pulitzer-finalist Chloe Cooper Jones, whose recently released memoir Easy Beauty chronicles her lifetime of disabled travel, and I asked where she finds the wherewithal to push through the pain and hardship.

“I’ve never lived a life without this level of discomfort or pain,” she explained. “I was born with this disability and I was born into this body. For some people this is not the case. There’s a before and after, right? There’s your ankle before you broke it, and then the after, and the after feels worse and it makes things feel harder. But for me, I’ve always been managing this pain. That’s normal to me as maybe hunger is for you.”

Born with sacral agenesis—a rare congenital condition that bestows its bearer with pain and limited mobility—Cooper Jones is an expert on the subject, and Easy Beauty indeed imparts the impression that she is as comfortable with discomfort as one can be. Whether she’s fighting her way through a fanatical Beyoncé audience in Milan, negotiating the icy streets of Salt Lake City during Sundance, exploring the Killing Fields of Cambodia, or undertaking the journey of motherhood, Cooper Jones has no choice but to perform an endless series of “pain calculations” to get around—but it is apparent that she is no slouch on the math. In fact, it is those around her—onlookers whose intentions are better than their understanding of her circumstance—who seem the most unsettled by the algebra of her struggle.

According to Cooper Jones, these concerned, doubting voices have the potential to limit her far more than her disability. As she states in Easy Beauty, “I’m not helpless, I’m struggling. People don’t always recognize the difference.”

Over the phone I ask her, what is the difference?

“A lot of times people equate something being hard or struggling with something as something not worth doing or something that we should have a negative feeling about. But for me, I don’t feel negatively about that. I don’t feel negatively about the fact that it’s hard for me to move around the world or that I might experience pain in doing that. Because the most important thing is that it’s not impossible for me to do it. It’s all very possible. It just comes with difficulty. And that’s not a negative fact. That’s just a fact to be integrated into the experience of life.

“People a lot of times want to look at disability and feel pity or feel that it’s a negative thing, but for me, being in a lifelong disabled body has given me a better relationship to difficulty, hardship, and struggle than a lot of other people because I see it all as part of worthy experiences. So sometimes when I’m enduring a struggle or having a hard time, other people will look at me and want to—I think with really good intentions—protect me from that or take that struggle away from me, but what I always want to communicate is, that’s just part of it. And it’s actually given me more than it’s taken. I think that’s sometimes a hard thing for people to recognize. We’re trained to feel uncomfortable around struggle, so if someone sees me lugging a suitcase up a hill they’re like, Ahhhhhh! It triggers a panic thing in them. And I’m like, It’s fine. I’m just going to move a little slower up these stairs, but it’s fine.

“I don’t want everybody to reflect back to me their own anxiety and concern about the hard thing I’m doing. I think sometimes when people see my body—which is a small disabled body that moves somewhat precariously—a lot of times what’s reflected back to me is, You’re not able to do this or you’re less able to do this. And that’s not true. And walking around the world with that reflection of concern or anxiety or fear or pity in the eyes of strangers all around me—that’s actually the harmful thing. Not moving slowly or not dealing with a suitcase. It’s that reflection that’s the harmful, barrier-causing thing.”

One of the key themes in Easy Beauty is this matter of ease versus difficulty, not only regarding mobility and travel, but the experience of art as well. The book’s title was borrowed from English philosopher Bernard Bosanquet, who made the distinction between “easy” and “difficult” beauty; the former being any thing or work of art that offers easily accessible, apparent beauty, while the beauty of the latter tends to require patience, study, and endurance. For example, Wagner’s Ring Cycle is a demanding 15 hours long that is impossible to understand without ample education, while the pop music of Beyoncé can be readily appreciated by anyone who enjoys a good beat.

So skeptical of the easy beauty of Beyoncé was she that Cooper Jones went all the way to Italy to see her in concert and find out firsthand what all the fuss was about. As it turns out, so-called “easy” beauty has more to offer than Cooper Jones had once assumed.

“The big struggle of the book—and it’s the big struggle of my life—is to not be cynical and dismissive,” she told me. “And to also not think that I myself am purely represented by difficult beauty. There’s a self-protective attraction to the idea of difficult beauty; the idea that the beauty is there, it just requires patience, it requires education, it requires time, it requires somebody who’s able to sit with complexity and tension, right? And that’s a really nice theory for somebody who lives in a body that’s maybe not immediately recognized as beautiful. I can say, Oh, well, you know, it’s not that there’s anything wrong with me, and say, You’re just not willing to be educated enough to see the beauty of me. But that’s all about shoring up a palace of self-regard.

“Bosanquet does not actually say that one is better than the other or one is more worthy or that you’re a better person if you can recognize difficult beauty. He’s just trying to get us to look at the way in which the mind can process these things. And for me, because I put so much value on difficult beauty, I actively rejected easy beauty. And that’s a damn shame because so much joy comes from the experience of easy beauty. A beautiful sunset in Brooklyn, walking my son home on a gorgeous day in October—there’s part of me that wanted to reject the simple joy and beauty of such a thing, that didn’t see it as real or as real as, like, you know, a Beckett play. That’s definitely kind of fucked up! That’s weird. That’s my bad psychology. So that’s a thing I really wanted to work on, which is not to say that I value difficult beauty any less. I think they actually heighten each other.”

One of the ways we can preserve ourselves is through the appreciation, meditation on, and experience of beauty in all its many forms

She grapples with this issue throughout the book, suggesting that beauty—whether obvious or obscure—has a transformative, transcendental capacity that warrants our appreciation, for it can change the way we relate to ourselves and the world around us.

“That’s the thesis of the book, really. I’m taking inspiration from the philosopher Iris Murdoch, who has this idea that beauty could help us perform an act of—this is her term—unselfing. The idea that one of the ways we can preserve ourselves is through the appreciation, meditation on, and experience of beauty in all its many forms: in the natural world, in performance, in what the minds of other people can create—so beauty as a very wide and encompassing idea. And she said the reason beauty creates that shift is that it necessarily forces us out of our own palace of self-regard, our own perspective, our own—and this is her phrase—fat, relentless ego. To survive the world we have to spend so much of our time locked up in our own minds, our own perspectives. That’s just normal, natural. It’s just part of being human. But beauty momentarily forces us outside of that.”

Over the course of Easy Beauty, we see Cooper Jones take strides toward this sort of transcendence, though the reader occasionally wonders if she’s going to make it, or if she’ll remain mired in her palace of self-regard. The struggle is not always decisive, and there are moments when the reader questions her motivations and her actions. Her husband, however, never seems to lose faith, at some point commenting, “I knew you were on your way toward the person you wanted to be.”

So, has Chloe Cooper Jones arrived at that person?

“I think I’m just closer,” she told me. “It was really important to me to write a book that was centered on the struggle to become closer to that person. And the book ends not with me being like, OK, I’ve got it all figured out and I’m like a fully integrated, fully realized person. No, the book ends just as I’m really beginning to get some self-awareness about it. And that’s very intentional, because I don’t want ever to give a message to a reader that says the work is done. It’s not done for me. Maybe it’s done for other people who are better than me. I don’t know. But I don’t think it’s ever gonna be done for me. But there’s progress in the book, and even if that progress is minimal, even if it’s just simply a shift from me not knowing what the problem is to me feeling like I can see the problem a little bit more clearly—to me, that’s quite important.

The most important thing is not that I come off well, but that you see and feel the value of a disabled life.

“So right now I know that I’m closer to that than I’ve ever been before, and a big part of that is just actually having been willing to have conversations about my body, about pain, about disability. about the ways in which I felt complicit in my own worst concepts. Being able to talk about those things, to write about them, that necessarily makes me more present and more authentic and better in my everyday life. Now, do I still have a really, really long way to go? For sure. But I feel like this project is an important step toward the person I ultimately hope to be.

“I also want to change other people’s concepts about disability. I’m asking the reader to do that project with me, to travel with me, to see beauty through my eyes with the hope that if you spend 288 pages with me, that you will see a life that is very worthy and full and not always good or perfect, but certainly very real.

“I could have written a version in which I’m a hero and I do things right, and people are just mean to me, but in many ways, I think I’m the absolute worst person in the book. I’m certainly the person who’s making the most mistakes. And it was very important to me that you don’t read this book going Oh, wow, what an inspirational figure! or whatever, but that you read this book and feel like this is a very real person. And that means she is in pain, and she’s making mistakes, and she’s doing things you don’t agree with, and she’s hurting people, and she’s capable of being reductive to other people, just as they are to her. By showing those things it makes me feel like a real person to you, because the most important thing is not that I come off well, but that you see and feel the value of a disabled life.

“That might change your concept of disability, and if it changes your concept of it, then it can change your behavior toward it. And not just toward me, but also to oneself, right? Because of course, if we all live long enough, we’re all going to be sick and we’re all going to see our physical capacities change and we all may become disabled to a certain degree.

“So if that is difficult, that’s OK. If that’s painful, that’s OK. Because the other option is feeling a little less alive, and to me that’s not an option.”

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