Why The Publishing Industry Can’t Get Disability Right

By Alaina Leary

It was an upper-level college fiction workshop, and my story was being discussed that day, along with one other piece. I’d written a contemporary story, part humor and part romance, about two best friends realizing they had romantic feelings for one another, and deciding to date.

My protagonist was a wheelchair user, and accompanying the two on their unofficial date was her service dog.

People loved it. And then came the questions: “Why is she in a wheelchair?” “Was he her friend before she was in a wheelchair? Did he help her through that?” “Was it an accident? The story felt unfinished. I kept waiting for the reveal about when she became paralyzed.”

These responses were a slap in the face. Although I’m not a wheelchair user, I have been disabled my entire life. I use a cane, and I’d partially based my protagonist’s experience on some of my own lifelong issues with mobility, balance, and muscle tone. She wasn’t written as being paralyzed, but having an unnamed congenital condition that affected her ability to walk; I had cerebral palsy and Ehlers-Danlos syndrome in mind when I wrote it. My protagonist’s disability was a part of her story, but the main focus was on the romantic tension between her and her best friend — something that I know very well, as my best friend and I have been in a relationship for nearly eight years.

I’d already been somewhat aware of it at the time, but this cemented it in my mind: there aren’t enough portrayals of disability in the stories we publish, the stories we read. We have one or two “typical” stories, usually steeped in pity, and people aren’t being exposed to anything else.

And it’s affecting all of us. It affected the way many of my abled classmates perceived my protagonist that afternoon, and it affected the way I, as a disabled writer, felt about including these stories in my work, and having the diversity of the disability experience validated.

Since that day, I’ve come back to this question often: what is the reason that we don’t have more portrayals, intersectional and inclusive portrayals, of disability and disabled people? Why are so many stories about disabled people written by our friends, families, and caretakers instead of by us? So many stories about disability only offer pity and inspiration porn, disabled people hailed as “inspirational” solely on the basis of our being disabled. A huge part of that reason is that the people who make choices — about what’s being published, how it’s framed, and who gets to tell disability stories — are often not disabled themselves. To that effect, abled writers, editors, and publishers treat disability as an “outsider” story.

I was on Facebook earlier this month when I came across a piece of multimedia art on the Huffington Post that combined video, audio, and writing. It was a reaction to the Trump tapes, and it was written by Karrie Higgins about her experiences as a disabled sexual abuse and assault survivor.

While I was reading it, I started crying. After I finished, I knew I needed to share the piece. Although Karrie and I don’t have identical experiences, it meant so much that I’d finally found an intersectional work that acknowledged two parts of my experience in this way: my disability and my experience as a rape survivor. I hope every disabled survivor finds this, I thought. People with disabilities are at a higher risk for sexual violence, and yet I almost never hear disability enter the conversation about rape culture and sexual violence even in my feminist circles.

At the time, I was on the train and it was loud and crowded, and not the space for me to articulate my thoughts on why the piece mattered so much. Within a few hours, when I checked back to share it, it was gone.

Not only was Karrie’s piece removed from the website completely, but her contributor account, which she used as a platform to share her work on the disability experience, was deleted.

“When they took it down, it just felt like I didn’t even count, like I had never even happened,” Karrie says. “I felt erased. I felt shut up.”

Karrie had been publishing on The Huffington Post since September 2015, when an editor approached her to republish her blog post titled, “Dear Able Friends, I Am Not Your Inspiration Porn.” She’d seen it as an opportunity to escape the disability erasure in the publishing and literary world that she’d experienced.

After Karrie spoke out about the erasure of the disability experience in publishing, people rushed to defend editors for making these choices. They reassured Karrie that it wasn’t because she was disabled or a sexual violence survivor; that this was not censorship. “Nobody wants to think this is happening,” Karrie says. “It’s hard to prove to people that what you’re talking about is not a normal editing situation.”

Luckily, Full Grown People reached out to Karrie about republishing her work after The Huffington Post took it down. The essay was published as “A Tape Doesn’t Change a Goddamned Thing” on October 20.

Initially, Karrie was hesitant to re-publish her work. She’d been burned many times before, had her experiences erased, had her voice silenced. “It really took everything I had to be ready to put that piece out there. I never thought I would share that with anyone,” she says. “This is the first time I’ve let anyone have their hands on my work in a long time.”

But working with Full Grown People turned out to be a great experience. Karrie and her editor, Jennifer Niesslein, worked to make sure the multimedia essay was accessible to people with disabilities.

Once the piece was published, Karrie started getting feedback from readers who said the piece wasn’t art, that it seemed unfinished, that all she did was piece together some audio and some confessions.

Given that Bob Dylan recently won a Nobel Prize for his experimental literature, it’s especially telling that neurodivergent storytelling and the disability experience aren’t considered art. Karrie says that, given her auditory processing disorder, this is just the way she writes, the way she thinks. “I’m choosing not to try to make myself more appealing to the neurotypical way of constructing things,” Karrie says. “I’m trying to convey a lot of these sensory experiences. It makes me think: who gets to experiment, in what ways, with what subject matter?”

There’s a lot of discussion recently on diversity in publishing and writing. Lee & Low’s 2015 Diversity Baseline Survey made the rounds earlier in 2016 and showed that 92% of the publishing industry identifies as nondisabled. Hashtag campaigns like #DisabilityTooWhite, started by Vilissa Thompson, #OwnVoices, started by Corinne Duyvis, and the #CripLit Twitter chats hosted by Alice Wong and Nicola Griffith are ways to expand upon the We Need Diverse Books movement that has spawned a non-profit organization. These hashtags — and the movements they represent — prove that we need more disability representation. We need inclusion, we need intersectionality, and we need to stop being erased or reduced to pity and inspiration porn.

It’s fairly common for disabled writers to be told that our work isn’t mainstream enough for abled readers to understand. This is what happens when a room full of writers see a protagonist using a wheelchair and instantly distance themselves from her, and center her disability. Jillian Weise, who calls herself a cyborg writer, faced this when she submitted her novel for publication. “One editor at a major publishing house thought it would be too difficult for readers to connect to the disabled protagonist,” she says. The editor suggested she re-write in third person. Another editor said they found it unlikely that the disabled protagonist would have slept with more than one person in her life.

Jillian once published a piece in an academic journal that included commentary by abled writers on all the disabled writers’ writing. The commenters had author bios in the contributors section. The disabled writers did not. Jillian asks, “What kind of self is the disabled writer allowed to be? Given my experience, a self that has no bio; a self that has a singular sexuality; and a self that exists to inspire the audience.Why should such a self interest me?”

92% of the publishing industry identifies as nondisabled.

Inspiration porn is another common problem with representations of disability. It’s what happens when you take a story about what a disabled person is doing and hold it up as “inspirational,” mainly because they’re disabled and had to overcome obstacles in order to do it. Even when what the disabled person is doing is normal for non-disabled people — learning to drive, going to Prom, running a company, publishing a book — it’s celebrated as inspirational because a disabled person did it. Many of these portrayals are written from an outsider’s perspective; they’re about disabled people, but not written by us. They may be written by journalists and reporters, or by our friends, families, and caretakers about the “life-altering experience” of simply knowing a person with a disability.

“I’ve been told that the only reason I’m published is for shock value and that I don’t possess a mastery of the craft,” says Kelly Davio, an editor and writer.

Writer Ariel Henley has experienced this several times. An editor altered a piece she wrote and added incorrect facts about Crouzon syndrome, the condition Ariel was born with, to make the piece seem more inspiring. “In everything I write, advocacy and awareness are my main focus,” says Ariel, “so spreading incorrect information, and having my story written in a way that made it seem like I was born to inspire others to appreciate how good they have it, was incredibly frustrating and disappointing.” Her requests to edit the information in the piece went unanswered.

A number of disability activists have spoken about the common practice of having the friends, families, and caretakers of disabled people speak on our behalf or share stories about us. The hashtag #CrippingTheMighty, launched by Alice Wong, was born out of the disability community’s disagreement with the editorial practices of the website The Mighty: namely, the fact that the site claims to be about disability, illness, and mental health, but it publishes many works of inspiration porn and tragic stories about the disabled experience written by non-disabled people.

When #CrippingTheMighty launched, many writers came forward with stories of being erased and silenced by the site, and arrived with feedback on how the site could improve: Pay disabled writers and editors for their work. Center and prioritize stories by us, for us. Don’t publish stories that portray disabled people like a burden or an inspiration, in overly simplified binaries. Publish intersectional writers and essays, because multiply marginalized communities are even more ignored and erased. If you’re writing as an ally, don’t overshare on your disabled friend or family member’s experience, and respect their autonomy and privacy.

In the last year, according to their staff page, The Mighty has hired more disabled editors, and are seeking editors for specific beats who have experience with the subject matter. They have plenty of role models and room for growth — as Alice Wong has said, there have been disabled creators in both indie and mainstream publications since forever. But The Mighty can be looked at as a great example of why we need to strive to get it right: because even on a website about disability for the disabled community, there’s still so much de-centering of the disabled experience.

Recently, I was a part of a panel hosted by Bookbuilders of Boston, a nonprofit organization dedicated to book publishing in the Boston area, about how to make publishing more inclusive. Although some of our discussions focused on problems that exist, a lot of our conversation also focused on what’s being done right and how to create solutions.

Sites like Everyday Feminism are selective in who gets to write about what. You must either have firsthand knowledge or be a part of the marginalized group, or you have to be writing from an ally perspective. All works by allies are read by paid sensitivity readers, who comb the work for microaggressions, instances of bias, cultural appropriation, and issues with representation.

Indie publishers by us and for us also do a lot of work in paving the way for authentic, intersectional representation. The Deaf Poets Society and Disability in KidLit are dedicated to this mission, and are run by staff members who identify as D/deaf and disabled. It’s equally important, in the diverse publishing landscape in which we all live, to have intersectional disabled experiences represented in mainstream media, and to create our own spaces so that we can create work that is by us and for us. Even when we’re representing our own community, it’s still possible to make mistakes, however, and Autostraddle is an excellent example of accountability and an apology done right.

When the panel started addressing the issue of increasing diversity and inclusivity, our moderator, Jabari Asim, posed a question: “Why are you in publishing?” I took a moment while he was speaking to think about what I wanted to say — what I should say. To be honest, I’d been thinking about this issue before the panel arrived. Even on a panel about diversity, which would hopefully be composed of and attended by people who care deeply about these issues, I had concern lurking in my belly for days beforehand. How much of myself — and of my marginalized identities — should I reveal?

I took a deep breath, and told the audience: I’m queer and disabled, and I was raised in a low-income household by my disabled single mom. I’m in publishing because, as a kid, I struggled to find works that represented my experience. Sometimes, I’d find a disabled character, but they couldn’t also be queer. I’m in publishing, I said, because that matters. I’m here because I remember the first time I connected to a character who was queer (Far From You by Tess Sharpe) and the first time I connected to a character who was disabled (Six of Crows by Leigh Bardugo), and I remember the moment when I realized that characters from both books are both queer and disabled. And I’m talking about these things because I don’t want anyone else to be sitting out there, wondering what it’s like to have their experience represented, to be marginalized and erased, to wonder if they too have a place in this landscape. I’m here because I cried when I read Karrie Higgins’ piece, not just because it gutted me with its honesty, but because I had never read another piece about a disabled sexual violence survivor and I finally felt like I existed.

My undergraduate fiction workshop prepared me for this moment. The students in my class wanted answers to questions like, “Why is your protagonist in a wheelchair?” As someone who is dedicating her career to intersectional, inclusive representation in publishing, I now understand that those questions exist for a reason. They exist because we haven’t yet created a publishing landscape that is inclusive and intersectional. They exist because readers don’t have enough material to interact with that shows them a nuanced look at the lives of disabled people, and because the material that does exist is drowned out by a sea of work that de-centers the disabled experience. And we all need to do the hard work of making sure that publishing becomes more inclusive — across all areas of the industry — and of focusing on solutions that support diversity, so that our next generation won’t need to ask these questions.

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