Author Chloé Cooper Jones, Who Has a Visible Disability, On Deciding to Claim Space For Herself and Her Son

Chloé Cooper Jones, who was born with a rare congenital condition called sacral agenesis, talks to PEOPLE about her new memoir and the pivotal moment she realized she needed to speak up for herself — and her son

Chloe Cooper Jones
Chloé Cooper Jones. Photo: Andrew Grossardt

"I am in a bar in Brooklyn listening as two men, my friends, discuss whether or not my life is worth living."

This is how Chloé Cooper Jones begins her memoir Easy Beauty, remembering a painful, but pivotal moment that occurred in 2017.

One of the men, whom she names Colin in the book, was an ethical philosopher she met in her doctoral program. As they sipped on their drinks, he revisited a longstanding eugenics argument when he told her that, in an ideal world, a person with her type of disability should have been aborted before birth.

The men had been sharing their own struggles with depression and Cooper Jones, who was born with a rare congenital condition called sacral agenesis, began to feel a moment of connection. That moment shattered quickly, she says.

"I'm leaning forward, both literally and figuratively, toward these men hoping we're going to have this, for me, very unique moment of kinship," Cooper Jones, 38, tells PEOPLE, "which turns into Colin saying, 'Well, I don't want to live and if I had a body like yours I definitely wouldn't. That'd be even worse. I'd just kill myself.'

"I think it's a painful moment because it reminds me how isolated the disability experience can be," she continues. "And how even in these moments of possible connection, I'm still seen by certain people as something other, something slightly less human even."

Easy Beauty cover
Avid Reader Press

Though Colin's comments were biting in their directness, Cooper Jones explains, "there are no villains in the book." In fact, she even had a "sort of a respect" for Colin, who was directly stating a viewpoint she encounters often, one that has seeped into the undercurrents on which society flows.

Cooper Jones, whose walk and stature is impacted by her condition, has had people cheer her on as she walks up the subway steps, a celebratory gesture whose effect is instead "condescending," she explains. The philosophy professor has been mocked and called mean names throughout her life, even by one of her students. And, just recently, she went to an event to promote her book where a woman said "weird" and "pretty harmful" comments to her, Cooper Jones says.

Easy Beauty is, in part, an exploration and response to such interactions. The book follows Cooper Jones as she seeks a language to communicate her experience as a person with a disability and claim space for herself — a journey she decided to embark on after that philosophical exchange (on the men's part, that is). As the men talked, she withdrew into herself.

"I had this sort of realization as they're speaking about whether or not my life was worth living," says Cooper Jones. "[I realized] that I didn't really possess a language to speak to them and to have a debate with them. It was largely because I had spent my life not talking about disability and not learning very much about disability, not understanding the ADA [Americans with Disabilities Act]."

Cooper Jones explains that she had a habit of separating herself from that part of her identity.

"I have a very physical, immediately recognizable disability, so it's not as if I can pass as anything other than disabled," says Cooper Jones. "But it always felt like a gate or a wall between myself and other people. So, I used to think that the way to lower that gate was to pretend that it just wasn't there, that my body wasn't there. ... I was sort of in this complicated act of self-erasure."

Chloe Cooper Jones and her son Wolf
The author with her son Wolfgang. Chloé Cooper Jones

Cooper Jones realized she needed to reassess how she approached such interactions. Her memoir — which started off as introspective journal entries — is not only for herself, but for her 10-year-old son Wolfgang, whom she shares with husband Andrew Grossardt, a 34-year-old content creator.

"I thought, 'Okay, I've got to figure out how to live a life worthy of him,' " she explains. "And that's going to require me coming to some peace with this discomfort. And that required a lot of change."

The author hopes society will also be able to adapt how it views people with disabilities. Cooper Jones explains that we're all closer to disability than we think, either as life events happen or as we age. While people's fear of experiencing disability is reasonable, Cooper Jones explains that "those fears can turn into a rejection or even a disgust of the concept of disability or seeing disability as just part of the human spectrum." She says that type of fear "is something worth looking at and having maybe a healthier relationship to."

"Not just because I hope that that means that you'll treat me differently," Cooper Jones continues. "But because you might be able to have a capacity of grace for yourself when inevitably you have situations when your mental and physical body shift."

The multiple depths that Cooper Jones plumbs in Easy Beauty results in a memoir that can't easily be classified. The same can be said for the book's author. Cooper Jones is a Pulitzer Prize finalist, a philosophy professor and a writer, who delves into her journey as a daughter, mother, wife and her search for a new way of seeing the world.

In other words, her story is about the complexity of the human experience and the questions of identity and belonging that plague us all.

"I wanted to write a book I was searching for: a person, who at the very beginning, sees a problem in themselves and also sees a problem in the world and wonders how that could change," she says. "I wanted to be as true and honest and unfiltered and vulnerable as possible. I wanted that help myself. I wanted to be guided in that way."

From the time she was born, Cooper Jones has faced a unique set of challenges. She has a pain disorder that's tied to her disability, meaning that most regular activities cause her discomfort or pain throughout the day. To navigate the discomfort, Cooper Jones does pain management exercises, including going to the "neutral room", or a white room in her mind where she counts to eight on repeat to get through activities that cause pain.

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She first learned of the technique from her pediatrician when she was a little girl, she explains. "I was telling him how I would get really anxious when my mom and I would go to the grocery store and I would have to walk long distances," says Cooper Jones, "My pain would sort of rise as I was worried about standing in line at grocery aisles."

The doctor explained how the "neutral room" worked and she's used the technique ever since. "He would say, 'You're not in pain for a long time. You're not in pain forever,' " Cooper Jones recalls. "'You're only dealing with eight seconds, and you can survive that.'"

While growing up, doctors also told her other things, some of which turned out to be untrue. As she writes in Easy Beauty, Cooper Jones was told often that her body was "inhospitable" to a baby because of her condition. Both she and her doctors believed that she was incapable of getting pregnant.

"I had never conceptualized myself as a mother," she says. "Just as I don't conceptualize myself as an airplane. It's not a narrative that I thought about."

Cooper Jones was five and a half months pregnant when she realized her doctors were wrong about her body's capabilities. She'd initially dismissed the pregnancy symptoms as part of her daily life with sacral agenesis.

It was so inconceivable to Cooper Jones that she could be pregnant that she dismissed her expanding stomach as a tumor.

"I was like, 'Oh, there's a tumor that's in my body that's fluttering around or something. That's weird. I'm probably dying,'" recalls Cooper Jones. "But, no, it was Wolfgang."

The knowledge of her pregnancy was terrifying, she says. "The real traumatic part was suddenly having this child, who was extremely imminent, and not having any relationship to the future that that would then entail," she says. "I felt like I was thrown into somebody else's life all of a sudden."

After she and her then-boyfriend Grossardt got over the surprise, she found that there was a benefit to not having expectations of motherhood. "It was absolute chaos, but there is a bit of freedom in chaos to kind of develop a new way," she explains. Her love for her son is equally complex.

"My experience of love is joy and happiness and gratitude and fear and obligation and frustration and anger and imposter syndrome — all these things are encompassed in my love for Wolf," she says. "And those things actually make that love, for me at least, weightier and more profound."

Grossardt was by her side through all of it. Cooper Jones explains that her husband is the first partner she's ever been with who has "forced" her into her own body because his love language is physical touch and "acts of daily care." Before she met him, Cooper Jones says she thought men could only be attracted to her for her mind.

"The first time he comes up behind me and rubs my shoulders, my first reaction is to tense up and to withdraw," says Cooper Jones. "Because I'm going, 'I don't want you to think about my body. I don't want you to pay attention to my body. My body will drive you away.'"

But that was a falsehood, she says.

"He loves my body and he loves being affectionate in that way," she explains. "So, I — in order to have that loving communication — had to sink down into my body and relax. And allow [my body] to feel the sensation of love and touch and care. That was very, very hard for me."

Cooper Jones says her husband, whom she loves dearly, has been laying the groundwork for years so she that she can fully be in her body and explore what that means in Easy Beauty.

Grossardt supported her as she traveled across the world — from California to a Beyoncé concert in Milan and the Killing Fields of Phnom Penh in Cambodia. Cooper Jones recounts these travels in her book, including what she describes as one of the most "beautiful" and "painful" moments of her life.

She was covering The Sundance Film Festival in Utah for a magazine when she met Game of Thrones actor Peter Dinklage at a party hosted in his honor.

Cooper Jones says that others in attendance "immediately assumed that we were there together, that I was somehow related to him." Dinklage, who was born with a form of dwarfism called achondroplasia, is also short of stature.

Peter Dinklage
Peter Dinklage. Karwai Tang/WireImage

"There were several people who kept asking me questions that they wanted to ask him, thinking that I could be sort of a dwarf spokesperson for him," says Cooper Jones. "Which I can't because he is international celebrity Peter Dinklage, and I'm Chloé from Brooklyn."

At one point, she and Dinklage had a "moment of kinship," she says.

"We spoke and there was a certain understanding that passed between us," she explains. "It was sort of sparked by the fact that a bartender had both looked over our heads and not seen us. And people were kind of interacting with us in this very similar way. ... I just felt very seen by him."

But, after she left the party, Cooper Jones struggled with the fact that she was leaving behind a connection where her experience was completely understood, no "acts of translation" required.

"I leave that moment of very, very intense connection, and then I come back to a room full of my best friends and my husband — the people who inarguably know me the best and love me the most," she says. "And I have to remember that there is so much of my life that I can't share with them and that they can't understand."

While that knowledge "hurts deeply," it also reminds Cooper Jones that "we're all always constantly in this act of translation with each other." She says that making the choice to love someone and translate your lived experience with them is "an incredible human act."

Cooper Jones adds, "It's the act of generosity and connection that's so magical."

Easy Beauty is available for sale now.

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