According to the U.S. Centers for Disease Control and Prevention, one in four Americans lives with a disability. These disabilities span across six general categories: mobility, cognition, hearing, vision, independent living and self-care.
And yet, according to Alice Wong, Founder and Director of the Disability Visibility Project, many Americans with disabilities also experience invisibility, and accommodations for these citizens can be an afterthought by governments, employers and individuals.
Wong created the Disability Visibility Project in 2014. “Originally, it started as a one-year campaign to collect oral histories from the disability community in the lead up to the 25th anniversary of the Americans with Disabilities Act in July 2015,” she said. “I formed a community partnership with StoryCorps, an oral history nonprofit because I wanted us to have a chance to tell our own stories and create our own history.”
This partnership allowed Wong to be very hands-on as well as inclusive. “I initially thought I would interview people I know who I think are super interesting and cool in the San Francisco Bay Area,” she said, “and by using social media I was able to encourage disabled people across the country to participate as well.”
She didn’t realize the project would still be active five years later, let alone expand into new initiatives. “Right now, people can still participate by using the StoryCorps app and information can be found on my website,” Wong said. “The DVP has grown and evolved into other activities such as guest essays, Twitter chats, a podcast, and other collaborations.”
The Disability Visibility Project website hosts dozens of oral history interviews, and Wong is always posting more. “The interviews are on my website for people to listen or read and they’re also on Soundcloud if people encounter them there,” she said. “People have shared a lot of positive feedback and that’s all the evaluation I need.”
In truth, though, Wong takes a broader approach to monitoring her project. “I have metrics for my website, social media, and podcast, but that doesn’t tell the whole story,” she said. “What matters to me most is how much joy it brings me.”
Out of these projects, Wong came to edit two anthologies of writings on disability, the first an anthology in 2018 called Resistance and Hope: Essays by Disabled People. “Resistance and Hope was a wonderful experience because it came out of a need to create in response to terror and uncertainty after Election Day 2016,” Wong said. “I learned how to self-publish thanks to the advice of friends and enjoyed bringing together some amazing disabled activists.”
The book format gave this collection staying power. “Even though it’s been two years, people are still discovering it and using it in classes or in their book discussion groups,” Wong said. “I love that once you put something out in the world you cannot predict the life this book will have.”
This gave Wong all the more motivation to compile a new anthology in 2020, entitled Disability Visibility: First-Person Stories from the Twenty-First Century. “Disability Visibility is different in that it’s not as specific as my previous anthology which focused on the relationship between resistance and hope,” she said. “With my new book, I wanted to capture this moment in time, the first two decades of the 21st century and highlight what disabled people are doing, thinking, and caring about.”
And yet this new anthology is unlikely to be Wong’s last. “This is just a small sample of brilliant work out there,” she said, “and I want people to become engaged and curious to learn more after reading it.”
Wong’s goal is to permanently disrupt stereotypes about disability. “Disability is a creative and generative force,” she said. “Disability culture is amazing and we are part of every single community.”
The Disability Visibility Project website is intended to be an ongoing living site that documents this culture. “I encourage people to listen and learn from disabled people who are our modern day oracles,” she said, “especially in the midst of the pandemic.”
Learn more at disbilityvisibilityproject.com.