People who are higher up in companies, they’re used to seeing disability in a certain way: a lot of them are older, and a lot of them are white men, and they view disability in a certain way because of their background,” said Madison Parrotta, who works at Includas Publishing. “It’s not the way that disabled people should be treated; they just see us as disposable.”

Parrotta participated in a number of publishing internships in college and said she feels overqualified for agent assistant jobs, but that she’s been rejected for other gigs due to a disability. She’s also part of a group, Disability in Publishing, that formed in 2021 and is looking to spark change in an industry that has historically locked out disabled staffers. (The group will officially launch with a virtual town hall at 8:00 p.m. ET on July 22.)

Ismita Hussain is an associate agent with Great Dog Literary who also serves as external-relations lead for Disability in Publishing. The group recently launched a website that offers resources including a job board, and it has plans to produce an accessibility guide for employers. Hussain said that Disability in Publishing was created to fill an advocacy gap in the industry. “There have always been people with disabilities in the publishing industry, just like any other industry. And there has so far not yet been an organization that was created solely to support publishing professionals, rather than, you know, writers who have disabilities.”

Disabled people are underrepresented in publishing. The U.K.’s Publishers Association’s 2021 diversity survey found that 13% of respondents identified as having a disability, up from 2% in 2017. Stateside, Lee and Low Books’ 2019 Diversity in Publishing survey found that 11% of respondents identified as having disability. For context, the American disability population is estimated to be closer to 26%, according to the CDC.

Of the more than 15 people—at various stages of their careers—contacted for this story, most hit on the same concerns about publishing: too much work for too little money and poor work-life balance. Another key problem for disabled publishing workers in the U.S. is the health care precarity that comes with the job. Some made career decisions based almost entirely on how much health care support they could get.

Miranda Stinson, who is a founding member of Disabled People in Publishing, said that the financial and time pressures of being in the industry are compounded by the fact that it can be difficult to come out as disabled in the publishing world. “There’s definitely very much a culture of, ‘You don’t disclose,’ and, I think, a fear that if you do there will be repercussions. But also, over time it kind of became clear to me that it’s like, ‘Well, you’re not masking very successfully anyway, everybody knows something is up, they just don’t know what if you don’t say.’ ”

For those trying to break into the industry, like GiannaMarie Dobson, “the pace of the industry is incompatible with life.” She said that the core of the problem isn’t just that she doesn’t have the means to move away from her family in North Carolina to New York City—though that certainly plays a part—but that the amount of money needed to become part of the industry is unobtainable. “Until wages rise enough for even abled workers to meet their needs, disabled people will be forced out. If abled workers can’t afford rent, how can disabled people afford to live, fill their prescriptions, maintain their mobility aids, go to specialists, visit the emergency room, buy food that’s safe to eat? The crip tax is real.” (“The crip tax” refers to the extra costs of being a disabled person.)

For Parotta, just sending a cover letter is something that she feels opens her up for discrimination. “I don’t come out and say I’m disabled. But when I write my cover letters, I talk about my passion for disability and children’s lit and how we need to see that [representation] more. And how, if they hired me, I’d want to make that a priority as I moved up in the company. I think that’s what really turns people off.”

As a result of these barriers, like in many other industries, some disabled people have taken matters into their own hands. Emily Keyes, who runs her own literary agency, is one of those people. She’s worked for L. Perkins Agency, Fuse Literary, and Simon & Schuster since getting a masters in publishing from NYU, but she went out on her own in 2021. She said that her disability has made her persistent. “I told one of my clients, ‘I don’t have any other skills.’ Like, this is what I’ve been going toward for so long and what I wanted to do. Perhaps a wiser person would have taken a plan B, but I have continually refused to do so.”

Keyes believes one reason she’s been able to forge her career is that she was entrenched in the publishing world prior to being diagnosed and had an empathetic boss as she was navigating her initial understanding of her disabilities.“I think I was lucky to have been diagnosed after I’d already been in publishing and—I won’t say proven myself, but I had a sales track record and people knew who I was.”

Like many contacted for this article, she said that accommodations like remote work have opened doors for her. Yet many companies still put discriminatory items in their job postings. Keyes pointed to a lack of pay transparency, and also added, “A lot of entry-level editorial positions will say you need to be able to carry 25- or 50-pound boxes of books. And that would exclude a lot of people with physical disabilities. And, from my experience in working with a publisher, someone could carry those over to the mailroom for you.”

Many disabled people in the industry believe publishing is missing out by excluding them. For Stinson, increasing the number of disabled agents would mean opening the door to a different view of disability. “Publishing wants a certain kind of disability story, and it wants an inspirational story or a story about acceptance,” she said. “I think much like queer publishing, actually, it often gets boiled down to, ‘Everybody’s different and special,’ which is true but not necessarily helpful. And I think disabled agents are more open to the nitty-gritty of it.”

According to Parrotta, the industry is losing talent, because those in entry-level positions see the need for change, but their bosses don’t. She said that the industry could really use the web of contacts that many disabled people cultivate in order to live their lives. “There’s a fairly big disability community out there. And I feel like they’re being ignored. I feel like those contacts would definitely be an asset to the publishing community.”

This article has been updated with further information.