It’s Time for Disabled Writers to Tell Their Own Stories

Alice Wong’s work as an activist, podcaster, writer, qualitative researcher, and editor is on full display in her new anthology Disability Visibility: First Person Stories from the Twenty-First Century.

Her new anthology is an extension of the projects she’s become known when it comes to always prioritizing disabled voices and lives. Wong’s work has brought together vast communities online and continually serves as a space of education and enlightenment; she has given grants to disabled writers unable to market books, and provides resources for not only her own anthology but other disabled writers whose work we should know. She also worked on the #CriptheVote campaign, encouraging political leaders such as Bernie Sanders and Elizabeth Warren to be transparent in their stances on disability policies and rights. Her latest anthology builds a roster of new and previously published essays around policy, honoring those lost, unity, and love. 

Wong and I spoke about the differences between Disability Visibility and her first anthology on resistance, perspectives and approaches to centering marginalized stories, and making this anthology additionally accessible to readers.

Jennifer Baker: Disability Visibility is not your first anthology.

Alice Wong: This is my first from a major publisher. In October 2018, I self-published a very small anthology called Resistance and Hope: Essays by Disabled People. This was done out of just feeling the need to respond to our times. Especially after Election Day 2016. And it really became a meditation on what is the relationship between resisting oppression and having hope. I really wanted to center it on disabled people, especially marginalized disabled people because activism and resistance and movement building happened way before 2016 and our current administration. So, how do we build on that? And what are the messages, and what are disabled people doing in response to our times? Because it’s not just about our present, it’s about our past and our future. That was a lovely first experience with self-publishing. I learned a lot about how to self-publish and all the different things about formatting and registering for ebooks and herding cats. This is a small collection of sixteen essays and it took me, I guess, a year and a half to get done. I had people asking me “When is this coming out?” I think people underestimate how much work it takes to be an editor. I would say that editors deserve some kudos too because it’s a lot of work that happens behind the scenes that doesn’t really show up in the same way [as it does for writers].

Jennifer: And it worked out well. It came out beautifully. 

Alice: I’m very happy with it. I think it was a labor of love. And it was really important to me for it to be free. I just wanted to make something that was available for people. Compared to what I’m doing for 2020, that was a great experience and almost a practice run for this anthology, just really understanding the mechanics of it all. 

Jennifer: I was reading your interview with Nicola Griffith when Resistance & Hope came out. You talk about your background being in qualitative research and sociology. So you didn’t study writing like many of us and I think that’s to your benefit. You come at this in a certain way that you communicate it so directly.

Alice: Sometimes I feel a little hesitant to call myself a writer with a capital W. I didn’t get an MFA. I never did those kind of publications of literary journals. It’s really hard to think of myself as a writer the way I see other people write so beautifully. I try to just tell my truth. I’m not a fancy writer and I think that’s by orientation in terms of how do I communicate. Talking about complicated things and rooting it back to my experience. I think my background in qualitative research helped me find the connective tissue for stories. 

And because both you and I are podcasters. I think that really gave me a leg up in terms of just listening, made me very intent on listening and responding to people. Doing the work of asking good questions. I think almost the construction of a good question to really invite the interviewee gives them that space. 

Jennifer: When you were creating a new compilation, how did you come to Disability Visibility?

Alice: It shares the name of my project that I started in 2014, the Disability Visibility Project. I think that has been the throughline for everything I do with my podcast. It’s advancing the concept of disability visibility. It’s really sad in 2020, I think it’s still a rather radical notion even though it really shouldn’t be. I just thought it’d be a nice way to build on my previous work through that phrase. The real hook of this book is 21st century stories. I think that was what makes it a little bit different from Resistance & Hope, which I think had a much more narrower theme. That one was about resistance, it’s about politics, and the current political climate. But Disability Visibility, I wanted it to be a little bit broader and be a little more expansive, and really about the now. And I think that’s the unique offering of this anthology compared to what I’ve done before, and hopefully compared to other comparable books that are out there. It’s really about the most recent work that I personally feel so deeply about. And these are stories that I just feel everybody should know more about. These are writers I want everyone to pay attention to. That was just some of the thinking behind it.

Jennifer: Speaking of your podcast, you’ve become so well-known. And I hope you recognize that you are an entity in yourself of how many people are aware of and appreciate the work you’re doing. When you create an anthology like this that is so vivid—I hate the word “diverse” now because people have co-opted that word.

Alice: I want to retire it and “diversity” and “inclusion.” “Diversity,” “inclusion,” “intersectionality,” which has been co-opted and watered down and frankly misused by other people. And I think the fourth one is “awareness.” Nothing gives me [more] hives. I would just love to retire all those words because I just want to talk about those things by doing them. By showing, not telling.

Jennifer: Exactly! And that’s why I love the word “visibility.” I think a lot about that word because we hear “I want to give voices to the voiceless” and that is so presumptive. Even choosing the name, placing your project’s name on the anthology, how do you feel visibility works in terms of activism because you exist?

Alice: This is the concept that means a lot to me. Sometimes it’s not enough to say “Hey, pay attention to us.” It’s not about trying to attract attention by those who are in the center. It’s about how we as different kinds of communities take our power and center ourselves and dictate the terms about how we want to be visible. It’s not about how the dominant majority defines “what is visibility?” Really it’s us who should dictate that. So that to me is what visibility is about, it’s identity and it’s about power, but also about love of who we are in our community. Literal visibility. For the majority of people with disabilities, with mental health disabilities, or interracial disabilities. But despite the numbers we are nowhere close to parity in terms of representation or political power in almost every field basically. We are here and many of us do identify and we’re very visible and yet at the same time we’re not seen or heard. Visibility is not just about being seen literally, it’s about being recognized and also taken seriously. To me the kind of crux is to be visible is to be understood. I think understood and accepted for where we are, understanding us for where we are instead of us trying so hard to be palatable, to be people’s ideas of what’s their biggest ideal. And to also push at the edges. Our lives, our culture, our ways of the world, there’s so much that’s not understood and some of it needs to be expanded and deepened. 

Jennifer: And that’s part of the brilliance of this anthology. You’re not speaking to anybody else but to the people exploring their own stories. To me that’s not easy to do editorially. There’s just so many layers to this story. And beginning with Harriet McBryde Johnson’s story, it’s so intense and there’s so much gray area. Can you talk a little about the culmination of these pieces that are so honest and true and how they really do immerse readers into a life we either do or do not understand?

Alice: Thank you so much for recognizing that. I think that was a real labor of love that this shows. The way I put the order of the book. The way I kind of made those sections. The challenge of thinking about the reader. I just feel like categories are limiting. Using verbs “being,” “connecting,” “doing,” these are ways I thought would help the reader connect with the stories and the different larger themes. 

And Harriet’s piece is a punch in the gut. I was very deliberate. I wanted that very first because if there’s one essay I want readers to start with I want it to be this one. If they don’t read anything else then that’s a loss, but I think if I get them to read Harriet’s piece that’s going to do a lot. I think what Harriet is so brilliant at is talking about the everyday lived experience of being disabled in a non-disabled world, but also about the tensions within the disability community. How do we respond to a famous philosopher, who I will not name, who calls for our deaths? These are super heavy issues that we still confront daily. Thinking about the pandemic, we’ve seen how Black, Brown, disabled, older people have been considered disposable. Nothing has really changed. Eugenics has always been alive. And I really wanted readers to understand for so many of us we are fighting for our existence every day. I do not want any disabled person in the future to feel like we have to ask for permission to exist. I don’t think we’re really there yet. But I want to be in a world where everyone belongs. That’s kind of the undercurrent of this kind of book: for people to really see us as we are. We’re not asking for permission. We’re not asking for acceptance. We’re not looking for your approval. But you are invited in to this opportunity to engage in our wisdom. 

Jennifer: And there’s a ton of brilliance in here.

Alice: I was very deliberate in the end with the brilliant s.e. smith’s essay about disabled people coming together. If they read from beginning to end, I wanted to leave people on this high note of just love and just feeling uplifted. And I think that’s what s.e. describes at a performance of disabled dancers and how ephemeral and magical it’s like to be with your people. That’s what’s almost similar to reading this book. Leave reading this book feeling maybe changed. But I do hope people feel unsettled or, you know, wanting to learn more.

Jennifer: And that access to learn and gain information and be in the experiences we’re reading, period, is so key to larger and representative communities who will read and recognize their own experiences in this book as well.

Alice: Sometimes I feel like as a person of color we don’t take any opportunity for granted. If this is my big shot, I thought a lot about how do I leverage it into bringing in as many people as possible. Making the book as accessible as possible. So, what I did on my own without even telling the publisher, I commissioned a discussion guide by a disabled writer Naomi Ortiz—it’s free on my website. This is a discussion guide for any teacher, reader, book group to use with Disability Visibility. From what I heard and gauged from people with intellectual disabilities is that books are not accessible for a lot of readers. So I hired Sara Luterman, an autistic writer and journalist, and she wrote a plain-language summary of my anthology, and it’s also free on my website. So if people can’t buy the book, which again is another access barrier, if people feel like the book is dense in terms of language there is a plain-language summary that anybody can access. These are the different ways that I just want to use as many different ways to get the book out there in different formats. People don’t have to read or buy the book to talk about the deeper themes. Other people can read the plain-language summary and skip the book all together, but either way they will still get a pretty good sense of what the book is all about. I’m learning all the time how to improve my own kind of processes, but these are things I wanted to offer to the world on top of the book. 

Jennifer: Also, you have an amazing list of suggested reading in the back. It’s categorized. So that’s another great resource you’re offering as well.

Alice: I think this book is the tip of the iceberg. I’m very careful not to say this book is everything because it’s not possible. But this is really an invitation to start. And I think that’s the goal.