Publishing Has Failed Autistic & Disabled People — Here's How To Fix It

In December of 2017, autistic advocate and YouTuber Amythest Schaber started the #BoycottToSiri hashtag as a reaction to the widely criticized memoir To Siri With Love by Judith Newman, a book written by a neurotypical woman about her relationship with her autistic son, Gus, who uses Siri to help him navigate the world. Autistic advocates — including Kaelan Rhywiol in a story for Bustle — wrote that they believed the book maligned the autistic community and exploited Gus's right to privacy. The memoir and hashtag consequently began a conversation about media portrayals of the autistic community and why it’s so important to have autistic and disabled people writing and telling their own stories.

There’s a deeper problem behind this hashtag than a single memoir. As writer Jennifer Baker points out in an article for Electric Literature, the publishing industry needs marginalized people behind-the-scenes at publishing houses if they want to create a literary landscape that accurately reflects everyone. Autistic literary agents, editors, marketing professionals, publicists, early critics and reviewers, or authenticity readers could have caught problematic aspects of this or any other book.

“I was reading a manuscript about an autistic teen boy when I caught some ableist language,” Sara, an autistic woman who works in marketing at a children’s publishing house, tells Bustle. “I worked with the editor to suggest revisions in several places throughout the book, to clean up ableist language, add dimension to the characters, and alter some stereotypes and tropes.”

According to Lee & Low’s 2015 Diversity Baseline Survey, 92% of publishing industry staff members are nondisabled, and although there aren’t statistics for books published by disabled authors or about disabled characters, the figure is probably similarly low.

“When we look at the books published about disability, the vast majority are written by non-disabled authors,” Marieke Nijkamp, author of This Is Where It Ends, founder of DiversifiYA, and former senior VP of We Need Diverse Books, tells Bustle. “And prioritizing non-disabled voices instead of normalizing disabled voices strongly (and most often, negatively) colors the way we think about disability.”

This Is Where It Ends by Marieke Nijkamp, $10.38, Amazon

Editors and other publishing professionals have an impact on how readers view disability — including the autistic experience, which is often steeped in harmful stereotypes and myths. “Taste-makers—agents, acquiring editors, critics—shape opinion,” Nicola Griffith, an author of seven novels and founder and co-host of #CripLit Twitter chats, tells Bustle. “If all opinion leaders are nondisabled, disabled perspectives will not be highlighted—or even noticed.” If the publishing industry has more disabled and autistic literary agents, for example, it’s likely that more nuanced portrayals of the disability experience will be submitted to editors for potential publication.

"...prioritizing non-disabled voices instead of normalizing disabled voices strongly (and most often, negatively) colors the way we think about disability."

The problem isn’t just in catching issues with nondisabled writers’ books about the disability community. Disabled and autistic publishing staff bring diverse talents to all levels of the industry: Mentoring and shepherding the careers of disabled writers, marketing books toward the disability community, and seeing the value in a variety of stories, not just ones that shoehorn the autistic or disabled experience into a set of established tropes.

“Only by publishing autistic authors and allowing us the freedom to explore our truths can publishers begin to repair decades’ worth of stereotypes and marginalization,” says Lyn Miller-Lachmann, an autistic middle grade and YA author. “And having more autistic and disabled employees in editorial and marketing will go a long way to ensure that the books published will be more authentic and better targeted to their readers.”

In order to create real change, the industry needs to take a look at accessibility and inclusion at every step of the hiring process. It’s a challenge, because autistic and disabled people are not a monolith and we each have different needs, but there are many ways to make it more accessible to everyone.

In order to create real change, the industry needs to take a look at accessibility and inclusion at every step of the hiring process.

Job applications across many industries often casually exclude people with disabilities. Many jobs in book publishing look for pre-requisite experience in a bookstore or a library, which can be inaccessible and heavily physical work, or several internships (often unpaid) to land an entry-level job. Publishers should consider the essential requirements needed to do a job and offer the opportunity to nontraditional candidates — people who may have had a break in work history, or who showcase a passion for publishing through their YouTube channel or blog instead of internships with top houses.

“I'd love to see just one company, in any industry, look at its candidate search and selection process and say, ‘Okay, if I were blind, could I really do this? What if I couldn't walk or drive? How else can candidates demonstrate their knowledge during this process?’” Dani Alexis Ryskamp, a developmental editor at Autonomous Press, tells Bustle. “Or better yet, ask actually disabled people to walk through the process and tell them where it fails.”

Publishers should consider the essential requirements needed to do a job and offer the opportunity to nontraditional candidates — people who may have had a break in work history, or who showcase a passion for publishing through their YouTube channel or blog instead of internships with top houses.

Companies need to think about different ways they can offer support to their potential hires. “Offer remote, paid internships and jobs. Offer relocation stipends if necessary. Help with finding accessible housing. Provide funds for attending conferences,” Kayla Whaley, a YA writer and senior editor of Disability in KidLit, tells Bustle.

Lisa J. Ellwood, a Lenape and Nanticoke Indian writer and journalist for Indian Country Today, suggests that publishers use social media and other online avenues to specifically seek out disabled and autistic candidates that may otherwise be ignored by the mainstream. The website Disabledwriters.com, created by s.e. smith, is mainly targeted at the journalism industry, but many member profiles show expertise in book publishing and literature. There are a number of resources, such as We Need Diverse Books, Disability In KidLit, the Minorities in Publishing podcast, and the Disability Visibility Project, that publishing houses could partner with to seek out disabled employees and authors.

Publishers should also consider how they can support their disabled and autistic staff. Remote internships and full-time jobs make it so that more people can work in the industry, including those who may not be able to make it into an office five days a week, who need a flexible work schedule, or who can’t live in New York City where many publishers are located because it’s one of the most inaccessible and expensive cities in the country. It’s also important to be receptive to an employee’s individual needs, whether it’s to relocate their desk away from fluorescent lights or to sit down while working a book convention booth. Katharine Duckett, the publicity manager for Tor.com publishing, suggests “being proactive and communicative about policies around making workspaces accessible, having generous medical leave policies, and opening spaces where employees feel comfortable and supported when voicing their needs.”

And when it comes to working with disabled and autistic authors, publishing houses need to continue to prioritize accessibility, particularly since author tours and book conventions can be draining events. “Sometimes I need to say no to certain promotional activities if I feel an event will lead to too much sensory overload or anxiety,” Jen Wilde, author of Queens of Geek, tells Bustle. “I’m fortunate to have an amazing publisher who listens to me and respects that.”

Queens of Geek by Jen Wilde, $8.56, Amazon

Hiring disabled and autistic people on publishing house staff doesn’t solve every problem, and it doesn’t absolve publishers of doing the hard work of unlearning ableism and amplifying disabled voices, either. “Disabled people in publishing shouldn't be seen as merely a means to better disability rep,” Whaley says. “We have so much to offer beyond disability expertise, and to ignore that would be a huge mistake.”

"Disabled people in publishing shouldn't be seen as merely a means to better disability rep,” Whaley says.

Disabled and autistic people don’t exist just for publishing houses to check off a diversity box and relax. They bring diverse talents that have nothing to do with their disabilities, from sales and marketing to design and production. And they deserve to be central to the publishing process that places life-changing books into the hands of readers.