When I came out as a cripple, two people in particular were my guides. One is artist Riva Lehrer, the other is Alice Wong. I’ve talked about Riva before, and will again. Today I want to talk with and about Alice.
Alice Wong is a disability activist, media maker, and consultant. She founded and directs the Disability Visibility Project® (DVP), a community partnership with StoryCorps and an online community dedicated to recording, amplifying, and sharing disability stories and culture. Alice is also a co-partner in DisabledWriters.com, a resource to help editors connect with disabled writers and journalists, and #CripTheVote, a nonpartisan online movement encouraging the political participation of disabled people.
Alice’s areas of interest are popular culture, media, politics, disability issues, Medicaid policies and programs, storytelling, social media, and activism. She has been published in Bitch Media, Teen Vogue, New York Times, Rooted in Rights and others.
From 2013 to 2015 Alice served as a member of the National Council on Disability, an appointment by President Barack Obama. She has a master’s in medical sociology and worked at the University of California, San Francisco as a Staff Research Associate for 15 years. Alice launched the Disability Visibility podcast in September 2017 and currently works as an independent research consultant as part of her side hustle. Because, yes, so many of us have side hustles.
Image description: Photo of Alice Wong, Founder and Director of the Disability Visibility Project, an Asian American woman wearing a multicolored scarf and bright red lipstick. She has a Bi-Pap mask over her nose attached with a gray tube. She is wearing a black jacket and standing in front of colorful street art.
I became aware of Alice on Twitter as I became aware of how the tentacles of ableism don’t affect just my immediate day-to-day life but wrap around and strangle almost every aspect of disabled peoples’ lives, including—especially—our interactions with the world. This of course includes our cultural lives. We talked about writing: disabled writers, disabled characters in fiction. ‘We need a hashtag,’ I said. As a result, Alice and I now run #CripLit, an occasional Twitter chat for disabled writers. She interviewed me for the publication of So Lucky and today I’m asking her questions about her just-published anthology of essays of crip wisdom, Resistance & Hope. Because now, more than ever, we need to hear where and from whom others find and draw hope—what sustains us in hard times. It’s as important to talk about joy as about difficulty because it helps to be reminded of the positive things we’re fighting towards, not just what we’re fighting against.
Image description: Illustration by artist Micah Bazant featuring a midnight blue sky with little white stars. Below is a log with mushrooms growing out of it in multiple shapes and colors. ‘Text reads: Resistance & Hope, Essays by Disabled People, Crip Wisdom for the People, Edited by Alice Wong, Disability Visibility Project.’ The ‘o’ in ‘Hope’ looks like a full moon.
An interview with Alice Wong
Tell me about yourself and your path to this book, as an activist and as a media maker.
It’s amazing how everything leads to something else. I don’t feel like I’m a ‘real’ writer and yet these last three years I’ve been writing more than ever. My background is in qualitative research and sociology. The curiosity and interest I have learning from other disabled people in research led me to writing in non-academic journals and on social media. I fell into activism and writing because the social conditions that we live in compel me. The predominant narratives about us suck and I know there are so many amazing stories and untold histories about disabled people that need to be documented and shared. The reason why I started the Disability Visibility Project in 2014 was to collect oral histories from the disability community and to record our history in the 21st century in our own words, on our own terms. As the DVP expanded into an online community, I’m having a lot of fun telling stories through podcast interviews, blog posts, and Twitter chats. Resistance and Hope is one example of stories about what’s happening now in this particular political climate through a disabled lens.
I’ve said, often, that I write to change the world—but also because I love writing. How about you? Why do you write?
I write in order to contribute to a broader conversation, to engage in ideas, and to offer my unique point-of-view. I don’t write frequently; I usually write when motivated by ongoing thoughts that have been bubbling in the back of my brain in relation to current events. When I write, I don’t want to echo other perspectives that are already out there. For example, I wrote an essay this past Mother’s Day about the visibility of Senator Tammy Duckworth as a disabled parent of color. The images of her with her infant daughter in Congress moved me deeply and I wanted to bring in voices of other disabled Asian Americans/Canadian women who rarely, if ever, see themselves in the media. To me, this was an exciting opportunity to share my feelings and include others. In short, I write to carve out larger spaces for all of us.
Why this book in particular? What was the impetus?
Creating something is the best antidote to feeling powerless in the face of oppression. I felt scared and troubled the evening of Election Day 2016 and wanted to do something in response for us, as disabled people, but for all people who don’t know how we’ve been resisting way before Pussy Hats. I never self-published or published a book in my entire life so I thought it would be an exciting creative challenge.
What was the process like? Did you put out a general call for submissions or was it invitation-only? If so, how did you choose the contributors?
Since I am a complete newbie at self-publishing, I decided that this was going to be a small collection of powerful essays. I wanted to make the process as efficient as possible so I did not publish a call for submissions since there’s a lot involved in responding to queries and notifying people. I had a list of people that I admired from diverse backgrounds that all have something powerful to say. It was important that the majority of the writers are multiply marginalized disabled people of color because I wanted their stories front and center. Originally I had a goal for 25 essays and I ended up having 16 essays by 17 contributors and couldn’t be more delighted each one of them.
Editing and publishing always turns out to be much more work than we initially expect. What surprised you, or challenged you, or delighted you?
I learned a lot! I didn’t go the traditional route and try to get a book deal because I thought it would take too long and that I might lose creative control. I started work on the anthology January 2017 so this entire process has taken almost 2 years. It took me much longer than I thought even though it’s just 16 essays! First, it took a while to receive all the essays from the contributors. I also needed to hire a copy editor, the fantastic Robin M. Eames, to propose edits and work with the contributors for their approval. I had to learn all about self-publishing using Amazon Kindle Direct Publishing and Smashwords (e.g., ISBN numbers, formatting, pricing, etc). I collaborated with a fantastic Bay Area artist, Micah Bazant, who created the book cover. I had to get a lawyer to create the writer’s agreements and have all the writers to sign them after they approved their final drafts. I learned about marketing, writing a good book description, and press release thanks to Corbett OToole of Reclamation Press and Rosalie Morales Kearns of Shade Mountain Press. And to be honest, it took me time to accumulate enough money to cover fees for the writers, book cover, copy editing (thank you to my Patreon supporters). Good shit doesn’t happen out of thin air!
I learned that it’s ok to take your time, especially if you want to do something right. It’s ok to delay things and disappoint people if it’ll create a better end result. While all of the things I mentioned were challenges, I am humbled and grateful for the labor, talents, support, and time people shared with me.
What did you hope this book would achieve? Do you think it’s working?
It might be too early to guess, but I want people to read this anthology and use it as fuel for whatever they are passionate about. I want people engaged, energized, and open to the crip wisdom from our elders, ancestors, and communities. It’s all around us if you just take the time to look.
I hope that this anthology will be used by activists from various movements as an introductory primer on resistance by disabled people. I’d like people to read and share it in classrooms and among friends, families, and community organizers. I want people to value and appreciate the talents and expertise of the 17 contributors and learn more about them.
Another purpose of the Resistance and Hope is to raise money for HEARD (Helping Educate to Advance the Rights of Deaf Communities). HEARD is the only organization in the nation that works to correct and prevent wrongful convictions of D/deaf and hard of hearing individuals. I wanted to make the anthology free on Amazon but found out I couldn’t set it from the beginning. Having Resistance and Hope affordable and accessible is important to me and rather than profiting from it (never my intention), this was a great way to support an organization steeped in disability justice. BTW: the anthology will be free via Smashwords.com in multiple formats.
As a disabled activist and media maker, who or what are you most determined to resist? And where do you find hope?
I resist policies and programs that keep disabled people from living the lives they want. I resist low expectations and tokenistic attempts at disability diversity by organizations and institutions. I resist the feelings of shame and isolation that still plague many of us, including me. I resist the idea that nothing can change and that every system is broken. I resist the idea that representation is enough when what we really want is power.
I find hope in my friends and family. I find hope in the amazing ways disabled people create and get things done interdependently. I find hope and joy in the simple things—excellent conversations and meals. And cat videos.
So what’s next for you?
I’ll be continuing my #CripLit chats with you, and #CripTheVote chats with my co-partners Andrew Pulrang and Gregg Beratan in 2019. I have some great podcast episodes slated for this winter and next spring. And who knows what else…the sky’s the limit!
For more about Resistance & Hope: Essays by Disabled People