Alice Wong on Not Seeing What’s Missing

This week on Reading Women, Kendra talks to Alice Wong about Disability Visibility: First-person Stories from the 21st Century, a new essay collected she edited and published with Vintage.

From the episode:

Kendra: The first question I had for you today is about the book. So the title of the book, Disability Visibility, shares the name with your Disability Visibility Project, which you founded. So what is that project and how did it come to be?

Alice: Thank you for asking. So the Disability Visibility Project started in 2014. You know, it’s interesting that this—the timing of our conversation—because we’re about to approach the 30th anniversary of the Americans with Disabilities Act this July. And I started the project actually as a one-year, oral history campaign to record stories by disabled people to lead up to the 25th anniversary of the ADA in 2015, July 26. So at that time, I think there were a lot of disability organizations getting ready to celebrate and do something to mark this occasion. And I was just, you know, one person. I just wondered to myself, like, what could I do? What’s my contribution? And, you know, one thing that’s always bothered me is that . . . number one, we don’t see enough stories about disabled people by disabled people. And also, I don’t think there’s enough disability history that is known the general public. And I really wanted to do have an effort to think about disability history now, not just way back when.

You know, and I think all of us are creating history every day. It is not just about these iconic figures or super famous people or big accomplishments. So I formed a partnership with StoryCorps, which is an oral history nonprofit. And I just started interviewing amazing friends of ours, you know, people that I thought are super cool and just wanted a chance to share a story with them. And I began to use social media, and I just encouraged people all over, and it kinda snowballed.

So I started in 2014, this project. It was just going to be a one year, you know, collecting stories. And it really resonated. People, I think, have a hunger to tell their own stories. And StoryCorps has a relationship with the Library of Congress. So each participant has the option to archive their story at the Library of Congress. So that’s really exciting too, not just that we’re telling our stories, but really a body of work that’s going to be there forever for future generations and that could be accessed by the public. So as of 2020, we have approximately a little bit over 140 oral histories. In addition to oral histories, we are a online community dedicated to creating, sharing, and amplifying disability culture . . . through a podcast, through blog posts, Twitter chats, you know, all kinds of ways.

Kendra: Oh, that’s really fabulous. And, you know, I really love the title of Disability Visibility because, you know—like you say in the very first paragraph of your introduction—that you don’t realize what’s missing because you don’t see it. And you don’t even realize that you’re thirsting for your own types of stories until you read them. And that’s something that I definitely felt when reading this collection. And I felt seen in a lot of ways that I had really never read essays like these before, and it just made me realize how much that was something that I needed to see. And I really love the idea that there’s even more oral histories from from your Disability Visibility Project as well.

Alice: Thank you for that. And I feel my job, in itself, is not always. . . . It doesn’t mean there has to be a bigger image. I think some people feel like being seen means a literal, exact shade to representation. And I feel like that’s partially true. But I also think that being seen is also about this type of similar lived experience. I think people with disabilities, they range in such different types. You know, there’s such diversity in the types of disabilities, just the ways people live. But I think some ways, you know, there’s a lot of commonality in terms of just the, you know, living with a different way of being and how that really does challenge the status quo. They really deal with that, all types of people with disabilities, whether they have invisible disabilities or, you know, all types that are just, you know. But then they read somebody in the book with or without their diagnoses or same kind of disability. . . . I hope they do find something there for them.

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Alice Wong is a disabled activist, media maker, and research consultant based in San Francisco, California. She is the founder and director of the Disability Visibility Project, an online community dedicated tocreating, sharing, and amplifying disability media and culture. Alice is also the host and co-producer of the Disability Visibility podcast and co-partner in a number of collaborations such as #CripTheVote and Access Is Love. From 2013 to 2015, Alice served as a member of the National Council on Disability, an appointment by President Barack Obama.