“And why do you have to keep telling everyone you’re sick?”
This, on a summer day, one humid from a colder-than-expected rain, five months before my debut novel, Ravishing, would come out. The comment, tense and combative rather than curious, referred to the book’s synopsis and my bio, both of which included references to chronic illness. It came from a loved one, someone who was aware that I was a decade into living with ulcerative colitis—who was aware that my book was an ode to reckoning with the ugliness, but also the rare beauty, that comes with a debilitating gut illness.
The question hurt, but it didn’t surprise me. Despite the fact that over 60% of Americans have at least one chronic condition, ableism—defined by the American Psychological Association as “prejudice and discrimination aimed at disabled people, often with a patronizing desire to ‘cure’ their disability and make them ‘normal’”—is common. As Alice Wong, founder and director of the Disability Visibility Project in San Francisco, California, and the author of Disability Visibility: First-Person Stories from the Twenty-First Century, once said, ableism is “baked into our society” especially because of how that same society “worships youth, health, and capitalism.” Disability is often misaligned with such values, leading to the ostracization of disabled and chronically ill people.
The rise of the Make America Healthy Again (MAHA) movement has continued this legacy in widespread and insidious ways. By demonizing vaccines, suggesting that “natural infection” is better for people, and arguing that health crises such as the COVID-19 pandemic would only really affect older people and those with pre-existing conditions, RFK Jr. and other MAHA advocates have repackaged eugenics talking points. They suggest that even if people die due to infection, those deaths are acceptable, since they are culling so-called weaker individuals. Similarly, MAHA emphasizes taking “personal responsibility” around eating balanced diets and moving our bodies, assuming and insinuating that those who do not do so are unproductive members of society rather than individuals who may be facing various challenges under capitalism. As these ideas cycle through social media and news sources, even those who might not subscribe fully to MAHA ideologies find themselves minimizing disabled experiences and leaning into the wellness industrial complex to avoid disability themselves.
I don’t have to wonder what stories people are telling themselves about why being disabled or chronically ill—basically “unwell”—would be so terrible. The truth is, when I was diagnosed with ulcerative colitis in 2015, I feared a narrowing, a closing even, of my existence. What would become of me, the twenty-one-year-old who lost her earrings in the diner bathroom at 2 AM because she was too dizzy from drinking all night? The girl who finally had friends to take trains with across the Italian countryside? The girl who liked sex, and made sure to flirt hard to get it? One night, I cried to a family member on the phone that I wasn’t feeling better despite faithfully swallowing down the chunky oval pills they prescribed me at my biweekly doctor’s appointments, cutting out all dairy and sugar, and subjecting myself to the greasy ghee-and-turmeric blend an ayurvedic doctor had recommended.
“I understand,” the person on the other end of the line said. “You must be thinking, what has happened to my life?”
At the time, what she’d said—what has happened to my life, what has happened to my life—echoed hard in my ribs. I felt seen, though I was also being pitied. I know that I was, because I held onto the phrase for years, and returned to it whenever I wanted to pity myself too. In that time, I lived with the thought that I was making it through despite my chronic illness, and that despite the people around me I was alone in doing so.
But now, as I write this essay, I’ve had to pause and try to remember the phrase exactly—which words held power and why? It has been a long while since I’ve repeated them to myself. These days, I may sometimes experience grief or frustration with my body and how the world doesn’t accommodate it, but I no longer pity myself—because pity implies that I am inferior in some way, and I am not. I’ve learned to see the world from a disability justice framework, which, as Patty Berne, co-founder of Sins Invalid once said, “understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met. We know that we are powerful not despite the complexities of our bodies, but because of them.”
In a disability justice framework, disabled lives are full, complex, and special. I have seen this at play as I have built care webs with other disabled people, enabling mutual emotional, financial, and physical support; learned to get flexible and creative around uncertainty; constructed a more honest romantic relationship that can be candid around caretaking and labor; expanded my understanding of truth around the body; educated myself on medical information; navigated hard decisions around healthcare and health insurance; found ways to participate in social activities, community organizing, and hobbies during flares; and continued to follow my dreams of pursuing travel, creative exploration, and family-making. In truth, it was only after my illness that I began to see other dimensions, beautiful depths of living that I am not sure I knew how to access before.
While MAHA, and ableism on the whole, wish to perpetuate a one-note narrative that disability is tantamount to death, my life is a refusal of that belief system—and so, too, is my writing. After my diagnosis, my fiction expanded into writing about chronic illness, caretaking, found family, and creating love inside marginalization. Essentially, I kept finding new angles from which to write about disability, and so I explored myself, the systems I live in, and the communities I am a part of with grace, intention, and curiosity. Such a process was imperative for honoring myself, reckoning with my existence, and creating conversation with others. And so, I wrote with both play and purpose, a dual sensibility I hadn’t felt since crafting stories in the freedom of childhood.
Ravishing continued my resistance, both in the fact of its writing and in its content. The book was formed in fits and starts, often dependent on how many doctor’s appointments I had or how badly I was flaring that week. It was sometimes written at “odd” hours or when I “should have” been doing something else. And like this essay, it was also predominantly written in bed. But these facts aren’t just anecdotes to talk about process; rather, they explicate the disability justice ethos I drew from to make writing possible for me. In reshaping where, when, and how writing could occur, I was allowing myself to participate in “crip time,” defined by Alison Kafer in Feminist, Queer, Crip, as “bend[ing] the clock to meet disabled bodies and minds.” This means realigning schedules to match our needs, but it also means pushing back on capitalism as it moralizes productivity and makes us feel less than for working differently than others. In writing Ravishing, I eschewed all advice about writing every day—because that is what abled writers tell us “good” and “committed” writers do—and instead focused on following my own and my project’s needs. Sometimes that included writing, sometimes it included dreaming or resting. In the end, the book was finished, on whatever timeline it needed; I didn’t need to be “well” to do it.
The novel itself also provides a full story of disability, one in which the chronically ill protagonist finds ugliness in the definition that a healthy life is a beautiful one, as well as beauty in the so-called ugliness of a sick life. My work is honest; my characters experience hard moments with their bodies, as well as life-affirming ones. There is no shame in telling multiple truths about disability at once. But importantly, the novel doesn’t provide a recovery narrative, which the author of Nerve: Unlearning Workshop Ableism to Develop Your Disabled Writing Practice, Sarah Fawn Montgomery, points out most abled audiences want “as though each piece about disability should conclude with a magic cure or medical breakthrough.” This kind of arc is unrealistic for many disabled people, and, again, invokes the belief that a satisfactory ending is one where there is no sickness at all. I consciously chose to work against this trope, and in doing so, wrote a story in which my characters find connection, intimacy, and happiness due to their disability, not in spite of it.
The art that I make and share with the world directly confronts the ableist viewpoints that have always existed, but are now being spewed into the world at a horrifying volume. But my work is only one voice that cannot and should not represent all disabled people. Alice Wong’s words on this are guideposts for us:
It’s not my goal in life to be some unicorn, but that’s sometimes how I am made to feel, and scarcity is a scam. Don’t believe it. . . . The percentage of books published by disabled authors is still disproportionate and paltry. It’s wonderful to see more work out there, but the crumbs aren’t enough. Disabled people, and disabled people of color, in particular, deserve and demand more.
All of us disabled writers have the right to tell our stories from whatever our perspectives are. All of us have the right to resist the dehumanizing narratives that are being placed on us by those who know nothing of us.
So, to the abled readers of this essay—support disabled writers by reading them, publishing them, paying them, caring for and with them, and centering them. To the disabled writers who are telling their stories and resisting already—I am with you. And to those who are struggling—I am with you as well. To be visible in this time of rampant hate requires a fortitude that abled people cannot imagine. But I urge you to read and connect with other disabled writers; build and strengthen communities that can come together in times of need and celebration; take ownership of your stories and tell them in the ways that make sense for you and your well-being; allow there to be nuance in your work; demand compensation for your time and energy; write for the people you love, including yourself; remember that vulnerability can spark change; and believe that every sentence you write matters.
Fiction
Ravishing
by Eshani Surya
Roxane Gay Books
Published November 11, 2025
