Over the last few years, there’s been a huge shift in societal sensitivity. Diversity and inclusion programs have radically changed the way society treats people historically marginalized for the color of their skin, race, or sexual orientation.
Protections for those with physical disabilities have long been in place, but insensitivity, misconceptions, and dehumanizing behavior linger. Seeing someone in a wheelchair still evokes pity, a tragedy of nature and the physical disability most often becomes that individual's defining feature.
“We’ve lived in a world that doesn't tell very good stories about disabled people, “says Jones. “When you come across a disabled person in a film or a book, they usually die at the end, they die so that their able-bodied counterparts can experience life more. Or they’re tragic figures, they're sexless, they rarely have agency. And if that's the stories that we're being told over and over and I include myself, it's not surprising that then what comes out of us, when we see a disabled body is fear, pity, tragedy, and a removal of agency.”
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In her latest book “Easy Beauty” author Chloé Jones tackles the challenges of her own disability and how she sees herself. Born with a rare congenital condition that shaped her body, she lives in permanent and acute physical pain. Her book is a personal voyage in which she explores how her disability impacted her identity and how beauty is teaching her something new about the way she views herself and the way she sees the world.
By ‘beauty,’Jones doesn’t mean physical beauty – rather the natural beauty she finds in the world around her – in the grace of a tennis player, a work of art or a Beyonce song. Appreciating that kind of beauty forges a kinship with others – even makes her heart beat a little bit faster!
“Every chapter of the book finds me in a different city seeking out an aesthetic experience, whether it's with a sculpture, at a Beyoncé concert, watching Roger Federer play tennis, at a Verdi opera, and then ultimately home, in the hopes of just constantly capturing that feeling of kinship and letting it tug me into a new state of being that might benefit my life and more importantly my son's life,” says Jones.
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Jonathan Bastian talks with Jones about her story, identity, and sense of belonging and understanding. Jones also explains that disability is very much part of the human condition, especially as we age. From her perspective, less pity and more beauty and grace would ease that journey.
“I think what’s so important when we're thinking about these narratives of disability, is that every single living human with a body is on a continuum of disability,” says Jones. “Every listener, every person you meet, we're all on this continuum together, we're all using assistive technology, to figure out how to move our fragile bodies through this very difficult world, whether you use glasses, or you use a cane, or you use just sneakers to protect your feet, when you're walking across the street, we're all in a relationship to our own physical selves, being at the mercy of a world that isn't always perfectly suited for our abilities.”
“The aesthetic response that I'm having [to beauty] is physical. I feel a little bit better, my heart is beating a little bit faster. I feel sort of a tightness in my chest, I feel the hairs on the back of my neck go up. This is why I like going upstate New York and looking at natural beauty all around me. I feel that way too and a really great song comes on and suddenly my body has a physiological response, a desire to dance, or move or to cry.” Author Chloé Jones describes the power of beauty in “Easy Beauty.” Photo by Andrew Grossardt