The “Favors” We Never Asked For

I was sixteen the first time I read a book with a character with a disability like mine. Not even a main character—just a character that I could point to and say, he’s like me. The Fault in Our Stars by John Green released in January 2012 to staggering enthusiasm. My friends and I gathered around a computer monitor in my high school’s publications lab during our first period creative writing class every other day to watch John’s YouTube videos, to hear him talk about how humbled and amazed he was by the popularity this book reached before it even released. He hand-signed 150,000 pages that would be inserted into every copy of the first printing. We tracked the colors of Sharpies he used throughout his videos.

All my friends preordered the book, guaranteed their signed copies. The printing sold out; a second was already ordered by his publisher. Still, I hesitated. It was a book written by, as far as I was aware, an abled-bodied man with an entire cast of disabled and chronically ill teenagers. Looking for Alaska, Green’s most popular novel before The Fault in Our Stars, was my favorite book at the time—I was enamored with the exploration of death and loss of innocence, the way he captured a child grappling with such big emotions in a way I achingly related to—and yet, how could I trust him to handle disability well? Even after watching all those YouTube videos, listening to him talk about the very issue central to TFIOS with Esther Earl, the fan he dedicated this book to—I felt strongly, even at sixteen, that our stories, disabled stories, are ours to tell. Only ours.

On a random trip to Barnes & Noble shortly after the book released, I found a signed copy tucked away on a shelf in the YA section and told my mom the book featured disabled characters. She bought it for me without question, even read the book when I gushed a week later about how excited I was. Isaac, a side character, had one eye. Isaac’s other eye, removed due to retinoblastoma, was replaced by a prosthetic. Isaac’s story arc reckons with the sudden loss of his vision as the progression of his cancer necessitates the removal of his remaining eye. My right eye, removed when I was six weeks old, was replaced by a prosthetic. I expected to go into this book and be frustrated by the verbose prose and the inauthentic portrayal of disability—which I was—but I was also completely surprised to find a character like myself when I never had before.

Isaac was me, on the page, right down to the corny jokes he uses to cope with his vision loss, practically the exact same jokes I often made so my fully sighted friends would understand the experience of living with limited peripheral vision, a permanent large blind spot on my right side that made navigating overcrowded high school hallways unbearable. Jokes that softened the blows of being bullied for my uneven facial features—prosthetics don’t move like normal eyes, and I like to roll my eyes when I talk as much as I wave my hands around for emphasis, making the difference more noticeable. My right eyelid lacks the same muscle control as the left; when I blink, my eyelid often doesn’t close completely over my prosthetic. Kids notice these things. Classmates were cruel, quick to spit out that I was the ugly friend or the pity date. But that was all a little easier to swallow carrying this book around in my backpack like a security blanket. For the first time in my life, I felt seen.

When I spoke about this experience with a close friend at the time—maybe at lunch one day or in the middle of our free writing time during our creative writing class—her jaw dropped and her eyebrows furrowed in the way they did when she was upset or frustrated by something I’d said, as she often was. “Isaac is a joke,” she said. “It’s right there in his name. Eye-sick.”

My friend was stubborn, often entrenched in her strong literary opinions and unable (or unwilling) to consider someone else’s perspective. I knew this about her. And still, I was dumbfounded. My mouth opened and shut and the only thing I could think was that I wished this book had never been as popular as it was—because when an actual disabled person had anything to say about the representation, it was immediately shut down. John Green was damn near a saint. His name was on everyone’s lips. His books were prominently displayed in every Barnes & Noble. I was briefly part of a Nerdfighter (the name coined for fans of his books and YouTube videos) Facebook group where he was practically worshipped. He was unassailable. Who was I, a sixteen-year-old kid, to say otherwise?

In the opening pages of The Fault in Our Stars, Green includes an author’s note reminding readers the book is a work of fiction and asking them to not attempt to divine any potential connections to his experiences beyond the influences he openly discussed. While I respect his intentions and his request for privacy, the note had the (likely) unintended effect of elevating the pedestal upon which his fans put him. When I fumbled my way through a response to my friend, she was quick to repeat that this was fiction. Isaac wasn’t real. The authenticity of his portrayal—or that of the other characters—didn’t matter. I was asking too much of an author who was just trying to tell a love story. And that, to many of his fans, was the end of the conversation: We shouldn’t ask too much of abled-bodied authors writing disabled stories. They were doing their best.

But to me, at sixteen, and even to me at twenty-six, Isaac’s story is one of the only references I have, in any genre, to a character like me. His experiences so closely mirror my own, in so many ways, that it was—and is—nearly impossible for me to view this book simply as a work of fiction, simply as entertainment. Stories become more than simply stories when they are your only means of connecting with other people like you, as they often have been for me. It is a privilege to write off critical representation as mindless entertainment, to not ask better from the people who took it upon themselves to tell these stories in the first place. It is a privilege to shrug one’s shoulders and accept the bare minimum of representation as good enough.

That conversation turned into an argument that turned, with time, into a fractured, then abandoned, friendship. My abled friend lived in a world of her own and could not accept anyone seeing things differently than she did—something she was proud of and repeated often. As I grew older, this was often the case with other friends, classmates, and colleagues. I moved in a different reality than all the abled people around me.

Two years later, this disconnect seemed particularly apparent during my freshman year of college. The other members of my NCAA swim team told me I shouldn’t make jokes about my vision. It wasn’t becoming, they said with disdain, like we were nineteenth century ladies moving through upper class society. The truth was—as it so often is—that they were uncomfortable being confronted daily by how little I could see during our workouts, how often I asked our coach to read the sets he wrote on the whiteboard aloud and accidentally smacked hands with my teammates in other lanes because I couldn’t see them. When I transferred and left my teammates behind—for various reasons beyond the way my disability was handled—I reminded myself I was not responsible for their comfort. I only owed that to myself. And I would only be comfortable in a place where my speaking up for myself was accepted rather than silenced.

*

I grew up, as so many writers do, an avid reader. I devoured books, raced through classwork so I could retreat between the pages of whatever I was reading that day. I would cart books to all my doctors’ appointments, read until my eye was too dilated from the eyedrops they administered to make out the shape of the letters on the page. Reading widely keeps the gears turning, allowing us to write our ways out of corners and find intriguing ways of interrogating some commonplace theme from a different perspective. It is the best prescription for a writer.

Through my writing, I found an outlet to explore the things I struggled to make sense of. Most often, the depression and anxiety I’ve struggled with since I was eighteen, the post-traumatic stress that set in during and after the three years I spent in an abusive relationship. I also like to explore collective identity, how communities confront impending climate disaster or the loss of a loved one. My writing has never shirked away from difficult subjects.

For years, though, I struggled to write about my visual impairment—or vision loss at all—without turning the piece into a hodgepodge of medical terminology. I was born with glaucoma in my right eye—only the second known case in a newborn in the world at the time—and a condition called morning glory syndrome in the other, the first child known (at the time) to be born with two separate and completely unrelated eye conditions. Neither eye exhibited symptoms of the other’s condition.

Glaucoma most people have heard of, caused by uncontrollable pressure in the eye. It’s treatable—in adults. Not children, at least not in 1995. My eye was removed, and my parents were told to raise me as if I were blind. If I had residual vision, they should not expect it to last.

But that was twenty-six years ago, and I still have remarkably good sight. As a child, I was inundated with hospital visits, trips to have my prosthetic cleaned, always trying to find a pair of glasses I would actually wear. At first for protection, but now because my vision is worsening with age, as it tends to. I still hate wearing them. Everything is too sharp; exhausting when you’re used to a world with softened edges.

My world was my vision loss. Learning how to move through life with less vision and no depth perception, how to advocate for what I needed. But I couldn’t find the words to write about it. I tried—the pieces I turned in for creative writing workshops were met with sympathy and frustration. There’s too much going on here, they would say. We need to understand too much. What can be simplified?

I didn’t know how to simplify, and, when attempting to revise those pieces, I felt as though I had little to turn to for inspiration. The Fault in Our Stars was the one reference I had at my fingertips, but John Green had the benefit of writing about relatively well-known conditions. I didn’t know another visually impaired writer—they exist, of course, but at the time, I didn’t know how to connect with them, how to find work that could show me another way out of the corners I continued to write myself into.

I could feel the deficit in my writing, this absence in knowledge of how to address one of the biggest pieces of myself in a way that was accessible and would still strike the emotional chords I aimed for. In every creative writing class I took throughout my undergraduate degree, I turned away from writing about disability. It felt easier to work my way through the things I was experiencing that seemed more pressing—sexuality, trauma, abuse, relearning who I was in the aftermath of so many horrible things. These were the stories that seemed to resonate with my classmates, that made me feel as though I was on the right path, as though my writing was something worth pursuing.

There’s no way to know, of course, that had I written about vision loss, that wouldn’t have resonated as well. We can’t know the outcomes of choices we don’t make.

*

It has been ten years since The Fault in Our Stars released. My copy sits on the shelf alongside all my favorite books, its pages lined with teal and purple tabs marking my favorite passages, an organizational habit I picked up in IB English classes in high school, when we were required to annotate our books until they bled different colored inks. Though I’ve read it a dozen or more times, my copy is still in remarkably good condition. The jacket has a smudge of dirt on it from the months I spent carrying it in my backpack in high school but is otherwise clean and crisp. No dog-eared pages. My senior year of high school, some friends saw John Green at the National Book Festival in DC, just a short subway ride from our hometown in Northern Virginia. He signed a bookmark they gave me for my birthday a week later. It’s still tucked inside the front cover. I’ve used it every time I’ve read the book since.

To this day, it is the only novel I’ve found that addresses half-blindness (and a sudden transition to complete blindness I anticipate I too will experience some day) in a way that matches my reality. While I do not have retinoblastoma like Isaac, the condition in my left eye, morning glory syndrome, lends itself to detached retinas. The sudden, painful disconnect of the retina from the back of the eye. Surgery within twenty-four hours can restore some degree of vision—residual sight, likely the ability to see shadows and differentiate between light and dark to some degree—but not the vision I have now. Blurry as it is without my glasses, I can read print, drive, see shapes and colors and objects with distinction. Vision that, by all accounts, I shouldn’t have by this point in my life, but I’m certainly not complaining.

As with my past writing choices, I can’t say where I would be if I’d never read The Fault in Our Stars. If I’d been stubborn, like I so often was as a teenager, resistant to giving into trends my high school friends fell headfirst into, the way I was when the movie came out and I refused to see it because I was angry neither Hazel nor Augustus were played by disabled actors. I always felt out of place in group settings, the one with nonconforming opinions who didn’t know how to shut up and fit in. It seemed, even on this front, I would be the person who loved the book but was unafraid to rip apart the authenticity of the representation within its pages, to demand better of a famous author who told stories in this book that arguably weren’t his to tell. Hazel’s—fine, because he did it for Esther Earl. Augustus’s, maybe. But not the rest of those characters. Not Isaac’s. Not to me.

*

In graduate school, I worked as a professional assistant for Stillhouse Press, George Mason University’s student and alumni-run small press. I read submissions, pitched acquisitions, made acceptance calls to authors and connected them with the students and alumni who would be their editors. I edited three books while a student—a memoir, a short story collection, and a poetry collection. I was also on the fiction editorial team for So to Speak. Between the two, I found my niche. I loved publishing, working with authors to develop their writing to the strongest version of itself, and playing a role in sharing it with the world.

Working in these capacities—both for a small press publishing full length works of poetry and prose and for an intersectional literary journal—gave me a lot of space to think. I spent hours every day reading through submissions, taking stock of the work we were seeing and the work we weren’t. Notably, So to Speak received more work from disabled authors. It fit, given the intersectional mission. At So to Speak, I read short stories by visually impaired authors with visually impaired main characters for the first time in my life. I found what I had so desperately needed for so long. And when I would turn to consider our full-length manuscripts for Stillhouse, I found I wanted Stillhouse to work to bring in more diverse submissions, too.

Through my first year and a half of grad school, from the fall of 2018 to the end of 2019, the more I thought on this, the more I started talking about it. First to my friends, fellow graduate students and editors at So to Speak. Then to the other members of Stillhouse’s leadership team. I am still the person I was in high school—obstinate, vocal, especially about things I believe in. In 2020, emboldened, I pushed for the implementation of editorial policies that would foster greater diversity, spoke out online about the type of work I desperately wanted to see as an editor for the press, reached out to people who were writing the kind of work I wanted to read to build connections.

For so much of my life, the reader and writer sides of myself felt separate. I love YA fantasy as much as I love upmarket adult contemporary fiction. I don’t write YA fantasy, though, or adult contemporary fiction, let alone anything that would be considered upmarket. I read what I enjoy and I write the stories I think need to be written. I preferred to define it later. The separations, then, persisted in my mind.

As an editor, though, these boundaries I maintained blurred. They had to. I began to think more critically about the work I read, how lines and paragraphs and story arcs could be stronger. About what defined the work I enjoyed and what was missing in the work I didn’t. About who had a right to tell a story and who needed to make space for voices they were potentially silencing. These thoughts, which inevitably turned into drawn-out discussions, filtered back into my own writing. They also strengthened my ability to critically assess the work in front of me and provide constructive feedback for how authors could better shape the stories they were trying to tell.

During a Stillhouse Press leadership meeting over Zoom in September 2020, my final year in the MFA program at GMU, these thoughts were as present as ever. We were tossing around the idea of publishing our first anthology, following through on my assertion that we needed to publish more diverse work. When our faculty advisor said, “Rebecca, you’re so vocal about disability rights on Twitter. What if we did an entire anthology featuring the work of disabled writers?” I answered before I could really think. “Yeah, that would be—amazing. I’ve never read a book with a character like me.”

I realized later it wasn’t wholly true—The Fault in Our Stars was right there, sitting on a shelf to my right, in my blind spot, but I knew it was there. I should have said that, while I’d read a few short stories by that point, I’ve never read a book with a character like me written by a visually impaired author. But the effect of my words on the rest of our leadership team were undeniable. I was given the project and threw myself into planning. We would accept submissions from anyone who identified as disabled—whatever that meant to them. I refused to define it, to impose labels on others rather than invite them to embrace disability for themselves. My goal was to celebrate and interrogate our perception of disabled reality—every facet that submitters were willing to share with us. This decision led to us receiving hundreds of submissions exploring dozens of varying experiences with disabilities like hearing loss, vision loss, cerebral palsy, various autoimmune disorders, chronic illnesses, and mental illnesses, among many others.

Over the past eighteen months, the collection we compiled has come together. Titled In Between Spaces: An Anthology of Disabled Writers, it brings together fifty pieces of fiction, nonfiction, and poetry from thirty-three authors, each disabled, each writing unapologetically disabled work. The featured pieces address, among many other things, the intersections of disability and sexuality, the isolation of being disabled in a global pandemic, the bittersweet victory of obtaining a diagnosis, the triumph of finding community and understanding.

Throughout the process of editing this book, The Fault in Our Stars weighed on my mind, as did the absence of work about visual impairment by visually impaired writers in my reading history, especially growing up. I found over the course of working on this project those delineations in my mind—the separate pieces of myself I boxed off as reader, writer, and editor—converged in a way I had yet to experience previously. I felt myself as each of these things, but also as some cohesive whole, something new, reflected in the community of contributors we built within the pages of this anthology. In so many ways, this book was a passion project, the culmination of a lifetime of feeling completely alone within these spaces and always seeking connection.

*

As I worked on my letter from the editor, the short essay that would open the book and tie the entire collection together, I spent months thinking through the systemic failures in the publishing industry that give work by disabled authors less media attention or keep their work off shelves completely. Comments from professionals in the industry that disabled stories don’t sell or we already have books that address a certain condition, why do we need more, without ever interrogating the dozens of near-carbon copy books that have historically flooded the young adult market after a book reaches astronomical levels of success.

This phenomenon is not limited to YA. There has been a prevalence for decades, across all markets, of novels written by abled-bodied authors, appropriating stories that should be ours to tell, claiming to be doing disabled authors a favor by getting more of our stories on shelves. Except—they aren’t our stories. They can’t be our stories if we’re not intrinsically included in their creation. The undercurrent evident here—that many people in publishing believe our work doesn’t belong in the mainstream—is real. And it is slowly changing for the better—there are more books in the world now by disabled authors than there ever were when I was growing up.

Yet, that we still have authors like John Green or, more recently Cora Reilly in her now-delayed romance novel, who feel it is their responsibility to take on our stories, to do us these “favors” we never asked for, shows how much further we must go. Two authors, writing in two very different genres, both taking on stories that, to varying degrees, were not theirs to tell.

I could list others—Emily St. John Mandel’s portrayal of the only character that uses a wheelchair as a burden in a post-apocalyptic world in Station Eleven is just the first that comes to mind, given the recent adaption of the novel into a miniseries for HBO—but the point remains the same. Our stories, whether relegated to side characters such as in Station Eleven or brought to the center as in The Fault in Our Stars or Cora Reilly’s scrapped novel, should be ours to tell.

*

An anthology such as In Between Spaces does not exist in a vacuum. This collection came into being because of the larger lack of representation written by disabled authors across genres. While my background is largely in fiction and I’ve focused primarily on fictional stories here, nonfiction and poetry also struggle to center the voices of disabled authors. How often, in nonfiction, do we prioritize the voices of those close to disabled people, their caretakers or family members, over the voices of disabled people themselves? How often, in poetry, are poems that address disabled experiences without flinching overlooked by editors or readers alike?

The recognition of this larger lack of representation across genres was critical to the development of In Between Spaces. It does not matter if other anthologies of disabled work by disabled authors have been published before now—they have—we will always need more. Disabled people deserve to see the full spectrum of their experiences reflected honestly on the page, just as often as anyone else.

In Between Spaces releases November 1, 2022, as the first anthology from Stillhouse Press. It represents a new chapter for our small teaching press, one full of opportunities for our students to cultivate projects such as this one, tailored to their unique perspectives and interests in addition to the full-length manuscripts we accept through contests and open submissions. With In Between Spaces, my hope is to create a book, and a space, where our authors feel accepted, supported, and respected for who they are. I hope that people who read the book are able to see themselves reflected back in the stories our authors have shared. Beyond Stillhouse, I hope this can be a small ripple in a much larger changing tide. Disabled stories by disabled authors matter. They belong on bookshelves. The deserve to be published by both small presses and big ones. They deserve to be read by disabled and abled people alike. We should never have to rely on authors like John Green or Cora Reilly or any of countless other abled authors to bring our stories to the mainstream. We can do that ourselves.

Rebecca Burke is a graduate of George Mason University’s MFA program in creative writing, the acquisitions editor at Stillhouse Press, and a former member of the fiction editorial team at So to Speak. She is the editor of the forthcoming anthology, In Between Spaces: An Anthology of Disabled Writers, and her work has been published in Peatsmoke Journal, Survivor Lit, Breakwater Review, and elsewhere. You can follow her on Twitter @BeccaBurke95 and find all of her work at rrburkewrites.com.