What Does It Mean to Be a Disabled Writer?
Discussing writing, publishing, and disability with Keah Brown, Esmé Weijun Wang, and Jillian Weise
Disability is a complex and multifaceted experience, so it should be no surprise that it exerts profound influence on the way we write. It provides a well to draw inspiration, experience, and community from, but also comes with its own considerations: handling accessibility barriers and physical limitations in the writing process, balancing advocacy with writing, or being pigeonholed or stereotyped.
To discuss these experiences, I spoke with three disabled writers across genres: Keah Brown, known for her personal essays on disability and its intersections with being a Black woman in America; Esmé Weijun Wang, recent winner of a Whiting Award and author of the novel The Border of Paradise, now working on a collection of essays about schizophrenia for Graywolf Press; and Jillian Weise, a poet who has authored collections such as The Amputee’s Guide to Sex, and performance artist known for her satirical ableist character Tipsy Tullivan.
Alex Lu: How does the able-bodied gaze influence how you write? Even if you’re not targeting an able-bodied audience or writing directly about disability, it seems like most editors are able-bodied, and readers might still be evaluating your work in the context of your identity. Does this affect the way you write, or the topics you write about?
Keah Brown: For me, so much of writing and talking about disability, especially in larger publications, is about teaching able-bodied people about the vocabulary and experiences of my specific disabilities. I’m always thinking about the ways in which I can explain something without losing my style and personality in the process.
I make it a point to write about whatever I want, and to not focus on whether it’s being perceived in the context of my disability. As I grow in my writing, I am getting better at making my disability the lens through which I see the world, and not the subject. So, it informs how I approach my work, but not what I write about.
As I grow in my writing, I am getting better at making my disability the lens through which I see the world, and not the subject.
Esmé Weijun Wang: It’s pretty easy to learn from my social media and writing that I live with psychiatric and physical disability. But I don’t mention that I’m disabled in every piece that I write, and if someone is meeting me in-person and I don’t happen to have my cane at that moment, I don’t immediately come across as disabled, which causes a certain amount of decision-making about whether I should bring it up.
One reason I like to mention it myself is because it gives me a marginally greater amount of space to frame my own circumstances. I’ve been stereotyped a number of times when I’ve been profiled in publications, as an object of pity or as an inspirational figure who has “transcended” disability. I try to push back against that by being clear that yes, I am disabled, and no, I do not consider myself to have transcended disability because I still live and deal with it; it is a part of me.
Jillian Weise: I do not believe in an able-bodied audience. If the audience is larger than five people, then the audience certainly includes disabled and nondisabled people; whether Deaf or Hearing; neurodivergent or neurotypical; in chronic pain or, for the present, pain-free. Likewise, I doubt that most editors are nondisabled. They may be disabled but not willing to claim the identity; their own internalized ableism may prevent them from claiming; or they may have concerns about safety and/or stigma.
I do not believe in an able-bodied audience. If the audience is larger than five people, then the audience certainly includes disabled and nondisabled people.
Often someone will whisper to me, “I have ____. Does that count as a disability? Don’t tell anyone.” This shows me two things: some people don’t even realize they have a disability, and disability shares space with the secret.
Over a decade ago, when I published The Amputee’s Guide to Sex, I certainly bought into the idea of a nondisabled audience. I was writing for them. My attention to them elicited amputee devotees, fetishists, and stalkers. So I had to reconsider poetry. I went to fiction for protection. At least in fiction, nothing is presumed factual. No truth-debt is owed to the reader.
AL: What does your creative process looks like, whether you’re tackling material in relation to disability or not? I’m curious what helps you get through writing, and how you structure your day around creating, especially if you’re writing pieces that speak openly about your lives and experiences.
EWW: My creative process looks different depending on what I’m focusing on at the moment. Because my energy and strength are so limited by illness, I make a conscious effort to use the amount I have on priority projects. For example, in addition to my literary career, I also run a business called The Unexpected Shape, and sometimes that’s in the foreground. Right now, I’m working on the the final stages of wrapping up my next book, so that’s a priority over generating new written material.
My illness is such that I tend to be cognitively and physically stronger in the mornings, which creates a real incentive to write as much as possible in those early hours. I wake up at around 3 or 4, most of the time. And I go to bed very early.
JW: I like this notion of “getting through” writing. Mostly I think about “getting away” with it. I am terribly bored whenever someone asks me to write something that has, indeed, existed before, such as a Disability 101 thinkpiece that explains x, y, or z to the presumed nondisabled readers. I prefer to make something “that did not exist before.” I’m in the third year of performing the fictional character Tipsy Tullivan across social media. She lives in Asswallascallacauga, Alabama; she is White and nondisabled; she has vlogged from a conference room at The New York Times, from a drive-thru at McDonalds in Iowa City, and from inside an elevator.
KB: Scheduling is my best friend. When I was writing for Cliche Magazine, I would do the interviews of celebrities and TV shows in the morning, and then write essays about my life and disability in the afternoon and night. Now that I’ve left, I write in order of deadline. So I’ll prioritize writing the essays that are due first. As I write my forthcoming book, The Pretty One, I’m changing up my whole style, and writing out of order, to keep myself fully immersed in it and to avoid burn-out. I hate the idea that you must write every day because I really can’t do that. Sometimes the aching bones in my body will not allow it.
I hate the idea that you must write every day because I really can’t do that. Sometimes the aching bones in my body will not allow it.
EWW: I did just spend approximately three weeks at a residency in Wyoming, and while I was there, I focused on creating new stuff. I put an autoresponder on my email and drafted a new essay and the beginning of my third book, which is going to be a novel; I tried very hard to structure my time there so that I was creating as much as possible and dealing less with, say, administrative tasks. And, now that I’m back, I’m really feeling the pressure of all of the admin I didn’t do at the time.
AL: As vocal writers who speak out (and/or use your work) to discuss issues pertinent to you, do you find you’re able to split your time as artist and as advocate, or do those aspects of your self merge more often than not?
EWW: They merge. I don’t see how they can’t merge, for me. Even the fact that I’m known for writing fiction and nonfiction about mental illness — that’s related to advocacy in a couple of ways, whether I’m talking about a specific law regarding involuntary hospitalization in an essay or trying to create a visceral experience of psychosis in my fiction. I am a complex and multifaceted human being, so I write about other things, too, but I’m always me, always in this body and mind, while writing them.
I am a complex and multifaceted human being, so I write about other things, too, but I’m always me, always in this body and mind, while writing them.
KB: Writing and advocacy can often influence each other. I can tweet through injustices, and turn those tweets into a fully realized and thought-out essay for a publication days later. It helps for me to write across genre, so that I can write about disability in one piece, and TV in the next. Having that diversity allows me not to become jaded by the advocacy work and labor.
JW: I’ll tell a story to answer this. Last summer, I was living in Colorado and making Tipsy videos with Bill Peace, aka The Bad Cripple, and Karrie Higgins, the intermedia artist. So we made “EZ Breezy Assisted Suicide” and “Calling Mr. Man.” In the middle of the summer, several ADAPT protesters were arrested for occupying Senator Gardner’s office in Denver. They wanted to talk to the sSenator. He refused to meet with them. So I packed up my camera and gear and went to the jail on Colfax Avenue where our people were being held. In that moment, art wouldn’t work for me. I couldn’t play the fictional ableist character and interview the protestors. So I broke the fourth wall and made a video as myself. I realized that there’s an enormous need for disabled journalists, for those writing or making in the earnest mode, and also there’s a need for disabled art that warps the earnest mode and offers no immediate utility.
AL: How accessible is publishing to you? I’m wondering how norms in publishing interact with disability. Are there any barriers in publicizing your writing?
EWW: I wrote a blog post about touring with my first book while dealing with chronic illness. But that’s just one tiny consideration out of millions. For example, writers are encouraged to go to AWP, athe big yearly writers’ conference, but I’ve had to argue with them over the past few years regarding hindrances I’ve experienced, such as the difficulties of trying to get a hotel room at the conference hotel, which is crucial when mobility is an issue, or a lack of elevators at certain places. There are many disabled writers who don’t go to AWP at all.
JW: I’m learning from the anonymous collective on Twitter, @DisDeafUprising, that The New Yorker does not provide transcripts for its poetry podcasts, so the podcast is effectively for hearing poets only. Many books and magazines are not available in accessible formats. This year the nation’s largest creative writing conference invited 0 disabled and/or Deaf writers to feature alongside the 42 nondisabled keynotes. Readings are often held in inaccessible spaces: no parking, just go up the two flights of stairs, navigate your way around the bar, one step up to the stage where the podium is too tall and adjusts not at all.
Readings are often held in inaccessible spaces: no parking, just go up the two flights of stairs, navigate your way around the bar, one step up to the stage where the podium is too tall and adjusts not at all.
KB: I have to travel more lately, and I will as my book comes to fruition. It’s exciting right now and easier because of accessibility accommodations at airports. There are still moments when it is hard because something goes wrong, but traveling isn’t as much of an issue for me right now.
EWW: I recently had a positive experience with the Whiting Foundation when I traveled to New York. They had thought ahead about some of the issues I’d be dealing with and reached out to me with suggestions, which practically made me cry with relief. It truly makes a difference when organizations take that extra step and work to make publishing, whether we’re talking about image descriptions on a publisher’s Twitter feed, or whether or not a reading location is wheelchair-accessible, a more inclusive space.
Disability interacts with other factors, too, such as class, because disability sometimes means living off of SSI, high medical bills, and/or not being able to hold down a steady job. Who can afford to submit to as many places as they can? Who can afford to travel to AWP and pay the registration fee?
KB: I do wish that it was more financially possible for me to attend writing workshops and retreats. I want to be in spaces where a lot of writers come together. I don’t have that experience yet, but I hope to.
JW: I’m in a privileged position. My fourth book is finished and under contract with BOA Editions. I have job security and health insurance. So I feel free to make art without much regard for the gatekeepers and the academy. I reject the notion that writers must build online platforms. Given that disabled women are three times more at risk for assault than non-disabled women, and given my experience with generally white, married men who mistake me for a fetish object, I refuse to be myself online.
KB: The biggest barrier in publishing that I’ve faced is people assuming that all I know how to write about is disability. But that’s slightly changing for me now, so I’m optimistic.