As a Disabled Writer, I Am a Rich Innovator

Today is a pain day. Though time stops for pain—slowing during spasms, compressing around ache until there are only a few functional hours in the day—deadlines do not. It does not matter that a migraine snakes around my skull, making screens a wound. It does not matter that my joints throb, my hip and spine misaligned, muscles unable to find comfort. It does not matter that neurodivergence leaves me incapacitated by a neurotypical world. This is my reality most days, so I’ve created writing spaces to accommodate my chronic pain and disability.

Days I write at the desk in my office are a luxury I can hardly believe. That I have a home office and a briefly functional body are things I try not to take for granted. Since I live on a few acres of Massachusetts woods, my office is surrounded by trees and wildlife. It is not uncommon to look out the many windows and see red foxes and deer, groundhogs and rabbits, wild turkeys and great blue herons. The other afternoon, I watched a coyote meander through the front yard. When I am in pain, I stare out the windows and write about a world I am too sick to access. Creating in my office reminds me that though the world can wound, it is also a wonder.

Still, my office holds the various tools I need in order to write while in pain. Pillows, heat pads, and pain medications fill my desk drawers and office closet. When the pain gets unbearable, I try to trick my body into comfort by rotating between several desk chairs. A microphone and software allow me to speak rather than type when my pain levels get too high. Noise-cancelling headphones allow me to reduce the sounds of traffic, airplanes, even electricity that can lead to sensory overload.

If my office seems empty, that’s because it is. I have a few small bookcases, and a chair and ottoman where I occasionally sit, but I mostly use these pieces of furniture as surfaces on which to write by hand. I read primarily digital books because, while physical books are beautiful, dust gives me chronic migraines. I do not collect many objects because cleaning is a task for those with the time to do it and I operate on crip time, a deficit that leaves disabled people with far fewer working hours in the day. I also require extra space to stim or stretch, to sit or lie down on the floor, which is where I write when my body and brain cannot find ease. We often think of writing as an act of stillness, but for me it is one of restlessness.

As a disabled writer, I often shuffle from space to space in search of a location that will soothe my body, mind, and spirit enough for stories. I wrote most of my new lyric essay collection, Halfway from Home, away from my desk. This book on nostalgia, longing, and searching for home during emotional and environmental collapse was written entirely from my house—because writing in coffee shops or planes is no longer available to disabled authors (or those with vulnerable loved ones) during a global pandemic that disproportionately impacts disabled people. Instead, I wrote this book in various spaces around my house, alternating between sitting, standing, or lying down, in a mixture of typed, handwritten, and recorded forms depending on my fluctuating abilities.

I wrote much of Halfway from Home at the kitchen table, where I could stand to pace, easily access a heat pad, or stretch my feet across several dining room chairs. Writing surrounded by light, with the windows open so I could hear the birds outside reminded me that, despite the pain, this work is a privilege. I also wrote some of the book in my bedroom, for though contemporary work-from-home advice warns against mixing personal and professional spaces, disabled writers often write from bed. On especially bad pain days I alternated between standing at my dresser, sitting at a small vanity, or writing from my bed, sometimes moving a dozen or more times in the span of writing just a few paragraphs. This, conventional writing advice argues, is not the most productive way to write. But it is, in fact, the only way I can.

Much of the advice offered by writing programs and craft books does not take into consideration the lived experience of disabled writers. If disabled writers try to follow ableist writing advice, we risk injury. Worse still, we risk erasure. We hurt our bodies. We hurt our minds. We hurt our spirits because this is what internalized ableism does to disabled creators who believe they must endure pain in order to be valued. If disabled writers adhere to ableist writing advice, many of us will be unable to write at all, our stories destined to be written by others or altogether silenced.

As disabled writer, I cannot always write every day or even every week. I cannot always write a thousand words a day or a book manuscript in a few months. I cannot always retype my manuscripts as a form of revision. I cannot always meet quick deadlines, or deadlines at all, if my body and brain do not allow. I cannot always “show don’t tell” or “characterize” if my reality does not match abled expectations. I cannot—should not—always use extensive explanation to justify my very existence.

I frequently think about the tragic stories that are so often required of stories about disability, where disabled characters are pitied, are miserable, death their only destiny. And how we cannot and should not write the inspirational recovery narratives where disability disappears and we are suddenly loveable, the story somehow redeemed because what makes us different has been vanquished, because we have been revised out of the narrative. As disabled writers, we cannot center every story around disability, because while disability certainly informs our lives, we deserve to write stories as rich as our experiences.

Instead, disabled writers are rich innovators. We find new places to work. We find new means to storytell. We build literary worlds at the same doctors’ offices where we are told we are broken. We jot notes while waiting our lives away for physical therapists, for radiologists, for pharmacists. We discover—in the isolating moments of pain and the stigma of shame—a poem, an essay, a fictional world better than our own. And because we create in unexpected places, we also create unexpected literature. Disabled writers are some of the most imaginative because we know what it is like to try and live in an inaccessible world.

Today is a pain day. A lifetime of writing with chronic illness and neurodivergence means I am prepared to work if I can and also prepared to accept it if I can’t. Still, I remain hopeful I might jot down a few words as I shuffle from space to space in search of even a moment of relief. I am grateful for the stability of my desk, the coolness of the floor, the light shining in from my dining room windows. I am grateful for the mobility I have to find a space that welcomes the words.

Pain is disorienting, pulling us from the moment of imagination into the reality of hurt. But I consider myself lucky when I am present, however briefly, in my body and mind. Today is a pain day, but there will also be a day soon when the pain is gone, or at least quieted. And then I will write in the outdoors I typically spy from my windows, the trees rustling overhead, clover at my feet, the world spread open like possibility across a blank page.

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