What is a community if not a collection of people who recognize that they have something in common – something as basic as geography or as complex as identity?
“There is a lot of power in ‘finding your people,’” says Alice Wong, citing a lesson in her blog that was driven home by the animated film, Finding Dory. “Disability is still seen as a ‘thing’ that affects an individual, a disease or impairment, rather than a community with shared history and meaning. Society has a long way to go in embracing disability as a part of diversity, which is why having disabled people be loud and proud about who they are is so important.”
Recognizing the link between voice, identity, and community, Alice founded the Disability Visibility Project – a project dedicated to ensuring that people with disabilities can make their voices heard by recording, amplifying, and sharing their narratives. Partnering with StoryCorps, the project captures and preserves the history of people with disabilities at the American Folklife Center archive at the Library of Congress.
Alice, who has a progressive neuromuscular disability, was a presidential appointee to the National Council on Disability. She was invited by President Barack Obama in 2015 to a reception marking the 25th anniversary of the Americans with Disabilities Act (ADA), and was the first person to visit the White House and a president via a telepresence robot.
To recognize the 28th anniversary of ADA on July 26, 2018, we asked Alice to reflect on the Disability Visibility Project, what has improved for people with disabilities since 1990 when the ADA was first signed into law, and the challenges that remain.
Debra Rainey: Is there a specific moment that helped launch your creation of the Disability Visibility Project (DVP)?
Alice Wong: In 2014, I noticed a lot of organizations in the disability community were gearing up to celebrate the 25th anniversary of the Americans with Disabilities Act in July 2015. I wasn’t sure what I could do to mark this big moment, and as a lover of culture and history, I’ve always been bothered by the lack of disability history and stories in the media. My frustration from lack of visibility led me to form a community partnership with StoryCorps., To me, this is a brilliant opportunity to have people with disabilities create their own history.
DR: What changes in action or thought would you like to see as a result of the Disability Visibility Project – within the community, and the general public at large?
AW: Ideally, I’d like the result to be a greater amplification of disabled people’s stories and narratives and online spaces where people feel welcome. I also encourage non-disabled people to take a good look at the amazing work and rich culture of the disability community and consider what they’ve been missing.
DR: Tell us about your partnership with StoryCorps and how they are helping you achieve DVP’s mission.
AW: StoryCorps has community partnerships with organizations at their various U.S. locations. I formed the partnership with their staff members from San Francisco because that’s where I live. Unfortunately, the San Francisco location has closed, and only the Chicago and Atlanta locations and a mobile app tour remain. I encourage disability communities across the country to go to StoryCorps if they have a chance or use their mobile app, anytime, anywhere. I miss the ability to meet with a friend and interview them at a recording booth, but anyone who has a smartphone or computer can do the same thing and have their story tagged for the DVP.
DR: Are you seeing a positive impact from recording and sharing oral stories and histories, and what is the impact of recording stories by audio only?
AW: I recognize the fact that audio isn’t accessible for all people, especially people who are Deaf or hard-of-hearing. This is why I expanded to other platforms that offer a variety of ways for people to tell their stories. With the audio clips that I post on my website, I include text transcripts and image descriptions so that the media is as accessible as possible. I do this with my podcast, too, and I’d like to think that producing accessible media will make a positive impact on others.
DR: You’re also focused on expanding the voice of people with disabilities within the American political landscape through #CripTheVote. Details on that, please?
AW: #CripTheVote is a nonpartisan online movement that activates and engages disabled people on policies and practices important to the disability community. Our movement is grounded in online conversations that encourage individual and collective action in the face of inequality, ableism, and oppression in all forms. Along with my co-partners, Andrew Pulrang and Gregg Beratan, we host Twitter chats on a number of topics and welcome people to use the hashtag to talk about any issue they care about. It was a great experience to see people come together during the 2016 election and talk about voting and candidates. Since the last presidential election, we decided to keep going and expand from voting and elections to political participation broadly. We’ve been very fortunate to have guest hosts who provide expert knowledge. For instance, our last chat on July 15 was on immigration with the National Coalition for Latinxs with Disabilities. We archive each chat and anyone can check them out here: https://wakelet.com/@AliceWong9697.
DR: Somehow, with all you’re involved in, you also find time to host the “Disability Visibility” podcast, and partner with others on a resource called “DisabledWriters.com,” which helps editors connect with disabled writers and journalists, and journalists connect with disabled sources. Talk about how both the podcast and writers resource are helping to make people with disabilities more visible.
AW: DisabledWriters.com is a project created by journalist s.e. smith, with Vilissa K. Thompson and me as co-partners. It addresses two major problems in the media: first, many stories about disability often don’t feature actual disabled people; and second, the lack of writers and journalists who identify as a disabled person. There are lots of great disabled writers and experts out there, and editors and producers can use the DisabledWriters.com database to find them.
Also, I love radio as a medium and wanted to expand my interviewing from oral histories into podcasting. I am enjoying the creative process of editing and producing audio stories featuring conversations on disability politics, media, and culture. I hope people will listen to the Disability Visibility Project podcast and learn something new.
DR: And we can’t close without your giving us some details on your Swag Shop!
AW: I welcome anyone who wants to check out the great items we have for sale, including apparel, stickers, and mugs, and to make a donation to help support the Disability Visibility Project, to visit disabilityvisibilityproject.com.