As we mark the 33rd anniversary of the Americans with Disabilities Act this month, I’m reflecting on the state of disability rights, especially for disabled people in publishing. I am an Asian American disabled storyteller, activist, editor, and founder of the Disability Visibility Project, whose mission is to create, share, and amplify disability media and culture. The organization publishes a podcast, newsletter, guest essays, books, oral histories, and more.
Disabled people hunger to see themselves accurately depicted, and I built my platform because there were so few spaces for us and by us. I had little interest in making my work palatable in order to garner interest from mainstream outlets. The challenges and barriers are significant for disabled writers, artists, and creatives, but there is also such richness, joy, creativity, and abundance in our wisdom and lived experiences. This is what drives me every day.
In the past few years I’ve been thrilled to see so many amazing books by disabled writers: scholarly works including Black Disability Politics by Sami Schalk and The Future Is Disabled by Leah Lakshmi Piepzna-Samarasinha, the cookbook Crip Up the Kitchen by Jules Sherred, the YA novel The Secret Summer Promise by Keah Brown, the memoir What My Bones Know by Stephanie Foo, and the forthcoming essay collection Nervous by Jen Soriano (Amistad, Aug.). Yet while stats don’t exist, I suspect the percentage of books published by disabled authors is still disproportionate and paltry. It’s wonderful to see more work out there, but crumbs aren’t enough. Disabled people deserve and demand more.
Disability representation for its own sake isn’t enough and it isn’t the goal; all audiences should expect nuanced, authentic representation rather than inspirational tropes such as those perpetuated by nondisabled publishers and editors who have little understanding of disability. I’ve had the privilege of editing two anthologies, Disability Visibility and the forthcoming Disability Intimacy (Vintage, Feb. 2024), and publishing a memoir, Year of the Tiger, but I still feel like an outsider—one who’s determined to bring in more disabled people in publishing as authors and in all other positions.
According to the Lee & Low 2019 Diversity Baseline Survey, only 11% of people in publishing identify as having a disability of some kind; up to 27% of U.S. adults, per the CDC, have some sort of disability. Looking at the 2019 survey results by department reveals even more about the industry’s inaccessibility and ableism: 19% of book reviewers identify as having a disability, while in most other areas of publishing, the number is closer to 10%. Perhaps this is because reviewers have long been able to work freelance and remotely, without the constrictions of a nine-to-five desk job. New York City, where many publishers are, is notoriously inaccessible for those with disabilities.
The pandemic, of course, upended the way the industry operates, with staff working remotely from locations beyond New York and other major cities. Macmillan, for example, offered paid, part-time remote internships in fall 2020. It was bittersweet reading about these opportunities because I thought of all the eligible disabled applicants who could have participated earlier.
Disabled people exist in every field, yet are still afraid to identify in workplaces where stigma exists. It can also be a struggle to receive basic accommodations. I would love to have a role in publishing aside from being an author but have yet to see any positions or opportunities that would be accessible for me.
As a disabled person of color, systemic racism is an intertwined problem that I face. People of color are consistently driven away from, and erased in, publishing. Jenn Baker, former editor at Amistad, wrote about her experiences in a recent essay for Electric Literature: “Exclusion begins with erasure. Because if you don’t exist, how can you even attempt to tell your own story?”
Most people don’t realize how difficult it is to tell your story when it feels like the world doesn’t have space for you. I think about editors like Jenn, a friend and longtime supporter of my work, and wonder what it will take for change to actually happen. What if conversations about DEI go beyond a diversity statement and are reflected in policies and budgets? What if major publishers provided support and infrastructure to people from underrepresented communities who want to be part of this industry? These are some questions the industry must be accountable for if it claims to care about diversity and inclusion.
I believe in the power of storytelling and the perspectives, skills, and expertise of disabled people. In the future, I hope the publishing industry will finally reflect and welcome all of us.
Alice Wong is an activist, writer, and editor in San Francisco. She is the author of Year of the Tiger: An Activist’s Life.