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Life The visibility of disability: an interview with activist Alice Wong

Jan. 10, 2019
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Alice Wong is the creator of the Disability Visibility Project and a co-founder of #CripTheVote, using social media to encourage those with disabilities to speak up about politics. She and I chatted over email about the DVP, making Bitch Magazine’s 2018 Bitch 50 list, and her former role on the National Council on Disability, 

Adolescent Content: Congrats on making The Bitch 50, how’d that make you feel? Where were you when you found out?

Alice Wong: I received an email from the editor-in-chief of Bitch Media, Evette Dionne, a few weeks ago letting me know I [was] in this year’s Bitch 50, and it was a real thrill. When the list came out I was blown away by [the] badass people included this year, especially the number of disabled women recognized. 

Adolescent: Talk to me about your former role on the National Council on Disability. How did that come about?

Alice: I served one term as a member of the National Council on Disability from 2013-2015. The NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies and programs that affect people with disabilities. It was my first foray into understanding disability issues at the federal level, and I learned a lot from the staff, leadership, and my fellow Council members who have a wide range of interests and expertise. Rebecca Cokley contacted me and asked if I had an interest in serving. At the time Rebecca worked at the Office of Public Engagement at the White House under the Obama administration. She saw a video I had submitted to a storytelling contest organized by the White House Initiative on Asian Americans and Pacific Islanders in 2011. I created a short video talking about AAPI and disability advocacy, and I guess you can say the rest is history!

Adolescent: In an article for The New York Times you talked about your parents making you apply for Medicaid after you turned 18, and you described the program as life-giving—it gave you freedom from being taken care of by your parents. At the time, the American Disability Act had only been existed for two years! Do you think you realized the gravity of being in one of the inaugural classes of a new law that has changed so many lives? 

Alice: When you’re living in the moment, you don’t realize how important it is. Even though [I’ve been disabled] since birth, I cannot remember [having] interest in the formation and passage of the ADA as a teenager… It wasn’t until I was in college and discovered disability history and sociology [that I saw] the wider political and societal context of disability rights and culture. For most of my childhood, I advocated for myself; as I grew up and became politicized, I saw the world through a larger lens. [Upon] receiving Medicaid at 18, I became intimately connected to this program that made a huge impact on my life. Having the first-hand experience of being part of this system and all that it entails was an education in itself on institutions, systemic ableism, and accessibility. Adulting is hard, but it gave me perspective.
Adolescent: Did being part of that inaugural class mold you into the activist you are now? How do feel now that the ADA is almost thirty and is being threatened politically?

Alice: This is the sad state of things, right? 2020 will mark thirty years of the ADA’s existence, and we still have to defend it from attacks by Congress such as HR 620… Creating change is a long and difficult [process], especially [when it comes to] cultural and social attitudes about disability. Having a law like the ADA is important, but it’s not a solution that’ll address the entrenched systems and ideas that continue to marginalize disabled people.

Adolescent: What inspired you to start the DVP? And do you think the media will ever become better about putting us at the table? Or should we not worry about permission and just demand what we deserve?

Alice: In 2014, many organizations and people in the disability community were preparing for the 25th anniversary of the ADA. I wasn’t sure how I could contribute, and one thing I noticed is that we [didn’t] have enough stories for us, by us about...disability history. I attended an event by StoryCorps, a national oral history nonprofit, and they mentioned [having] community partners all over the U.S. I reached out to them asking if they ever had a disability-specific community partner, and as I recall they said no. I thought this would be an incredible opportunity to encourage disabled people to record their oral histories in the lead-up to the 25th ADA anniversary. The Disability Visibility Project started out as a modest one-year oral history campaign, and it just snowballed because there was a need and hunger for people to tell their own stories. I’m happy to say that as of 2018, we have about 140 oral histories collected with many archived at the Library of Congress. 

As I used social media to get the word out about the DVP, the project expanded into an online community dedicated to creating, amplifying, and sharing disability media and culture. I do that through Twitter chats, blog posts, a podcast, and other forms of online activism. 

We can take all approaches when it comes to improving disability representation in media—advocating for seats at the table, pushing for change from gatekeepers that don’t want to change the status quo, and creating our own stories and media for the world to see without permission or apology. Without seeing ourselves in every facet of society and pop culture, many of us don’t even know what is possible or what we deserve. Dreaming big and having control of our narratives drives my work as the Director of the Disability Visibility Project. 

Adolescent: Now, I haven’t yet talked to anyone about the straw ban and why plastic straws are vital for folks with disabilities—what are your thoughts?

Alice: It is already so difficult as a disabled person...to be an active participant in public spaces as our full and true selves. The straw-ban trend reminds me of the Ugly Laws, when certain groups were seen as undesirable and not allowed to appear in public. There are some disabled folks who need plastic straws to drink. Period… This is ableism! The fact that environmental campaigns completely overlooked and dismissed the perspective of disabled people is not surprising, just disappointing. I feel the same with cities that pass straw-ban ordinances in the name of saving the environment without any consultation of people who would be adversely impacted. Any type of activism and policy-making that doesn’t consider the needs of the most marginalized communities is trash. 

Adolescent: Because you are such a big activist, you control your narrative very well—do you worry about inspiration porn, or do you think it’s inevitable?

Alice: I’m not a big activist, I’m just someone that tries my best to tell my story and keep things real while highlighting the work of so many amazing people in our community. If people follow me and actually read my work, I think they’ll have an accurate idea of how I identify and frame myself. There’s very little I can do when people write about me and don’t take the time to ask questions directly or do any background research. Those are the stories that I don’t share and boost (snarf)! 

You can check out Alice and the Disability Visibility Project at disabilityvisibilityproject.com and on Twitter at @disvisiblity.