Alice Wong

Alice Wong

Alice Wong

Alice Wong (she/her) is a disabled activist, media maker, and consultant. She is the Founder and Director of the Disability Visibility Project, an online community dedicated to creating, sharing and amplifying disability media and culture created in 2014. Currently, Alice is the editor of Disability Visibility: First-Person Stories from the Twenty-first Century, an anthology of essays by disabled people, available now by Vintage Books (2020).

“Being Seen is Not Enough,” an Interview with Alice Wong

This interview was conducted via e-mail by Interview Editor Kendall Dawson. Of the process, she said, “Alice Wong has beautifully woven voices of the disabled community together in Disability Visibility: First Person Stories from the Twenty-First Century that showcase living with pride and authenticity in a country that struggles to adapt to its diverse citizens. I’m honored to have had this interaction with her and will never forget what was shared here.” In this interview, Alice Wong talks about the importance of intersectional activism, the breadth of the Disability Visibility Project, and the untapped universe of disabled culture.

Superstition Review: This collection holds 37 distinctive essays about life with disabilities. Could you explain the process of organizing this collection?

Alice Wong: I am a fan of disabled stories and culture. It’s the heart of what I do and I’ve been bookmarking and collecting work by disabled people for years. Disability Visibility is a small snapshot of first-person stories from 2000-19 that want to share with the world. This is only one anthology and it can serve as a springboard for people to discover more about disability and what it means culturally and socially.

SR: As the founder of the Disability Visibility Project, you have given a voice to millions of disabled people who do not have safe and brave spaces to exist. What communities did you have during your formative years that helped shape who you are?

AW: In many ways, I did not have community at an early age and it was feeling lost and searching for it that led me to my work with the Disability Visibility Project (DVP). The DVP initially started as a one-year oral history campaign because I wanted disabled people to have a chance to record their oral histories through a community partnership with StoryCorps, an oral history nonprofit. The project blew up and it was clear that there was a hunger for more stories by us in our own words. The DVP expanded to a blog post with interviews, guest essays, collaborations, a podcast, and other online partnerships. My role is to amplify the people who already have voices—this is the joy and privilege of building a platform because I’m not giving a voice, I’m just highlighting the brilliance and breadth of the disability community.

SR: While not an exhaustive list, this collection covers a diverse range of topics while discussing the highs and lows of disabled life. When crafting this collection, what criteria were most important to you in deciding which topics to include?

AW: The thirty-seven contributors are incredibly diverse as are the topics they cover. I was intentional about selecting stories that go beyond the typical ‘this is what my disability is like’ or ‘this is what you need to understand and why you need to have empathy’ kinds of stories. I wanted difficult, nuanced, and complex stories. I wanted to challenge readers into considering new perspectives. I also wanted to include multiple-marginalized disabled people, especially disabled people of color front and center since the overwhelming representation of disability remains white in popular culture. The one throughline of all of these stories is that they are personal, political, and hella powerful.

SR: This collection is a testament to the reclamation of language. The labeling of “crip time” and “crip space” or the #CripTheVote hashtag finally centers the disabled in conversation. What strength does reclamation bring to you, personally and professionally?

AW: Language places us within a culture or community. The word ‘crip’ is not something all disabled people are comfortable with—there are many people who have been hurt by this word that has been used as a slur. For me, ‘crip’ speaks to our power as a culture to transform a thing or space with our sensibility and creativity. Disabled people are magic when they are in a room together as s.e. smith writes in their piece, “The Beauty of Spaces Created For and By Disabled People,” the last essay in the anthology about ‘crip space.’ Language evolves as has my own identity and politicization. ‘Crip’ continues to be a term I use to speak to ableist oppression in society and the radical innovation of disabled people.

SR: In the past few years I have read a lot about the pros and cons of person-first language. The term disabled makes many able-bodied individuals cringe, yet your work puts it front and center. Why is identity such an important pillar of disability advocacy?

AW: Identity is an exercise of power and autonomy. Each person should have the power to identify how they wish and yet I still come across people who tell me I’m incorrect to use the term ‘disabled person’ when describing myself. I wish you could see the side-eye I give these people when it happens. I find these debates incredibly tiresome because we wouldn’t need to engage in them if people actually respected disabled people’s agency. This is how low the bar is and how far we have to go in advocacy. Communities are constantly changing and emerging and I delight in learning new terms disabled people use such as ‘spoonie’ or ‘neurodivergent.’ There’s a whole universe out there that is very exciting.

SR: Your work puts you in contact with people all over the world. The concept of collecting oral histories is a great way to capture this hidden history. How do you keep in contact with this community you have created? Do you still keep in contact with those who showcased their stories?

AW: I don’t have close contact with all of the participants in the DVP oral histories. I interviewed over forty of my friends so I am in touch with them! The participants have a copy of their oral history and many opted to have it archived at the Library of Congress thanks to an arrangement with StoryCorps. I hope everyone who got to tell their story enjoyed the experience.

SR: This collection powerfully showcases the importance of intersectionality and purposeful representation. The same privileges regarding, race, class, and gender still exist within the communities addressed throughout the collection. How do you acknowledge the complexities of intersectionality and privilege in disabled spaces as a prominent face of the movement?

AW: I shudder thinking of myself as a prominent face of the movement! There’s a real danger when people care too much about what I think. I’m much more interested in advancing the work of other disabled people. People can judge me by my activism, the decisions I make, and my involvement in collaborations and various projects because they show what I value and care about. With the DVP in its sixth year, I am mindful of the stories I choose to publish and share. I am a disabled woman of color and I will always look at disability from that lens.

We are living in a century of growing accessibility of information. The Disability Visibility Project along with your activism has brought that information to an accessible site online.

SR: How has the internet been beneficial to your cause and changed human rights activism as a whole?

AW: The internet is a lifeline for me and so many people around the world. I have been able to work from home for over 15 years thanks to internet access. Being on social media I have platforms to share my work and other interests. Twitter in particular gave me a way to learn and connect with people from all over the world that I never would have the chance to meet in real life. Creating the hashtag #CripTheVote, a nonpartisan campaign encouraging the political participation of disabled people with my friends Andrew Pulrang and Gregg Beratan, I also saw how online activism can change the political landscape.

SR: So much of the dialogue today revolves around returning to normal. In an interview with KQED, you state “We've learned how to make do with living in a world that's rather hostile and never designed for us in the first place.” I think this quotation transcends communities: normal has never been enough. What can readers take away from this collection in response to cultivating an inclusive future?

AW: We need creativity, imagination, and political will to create a better future for everyone. We also need to listen to the most marginalized who are the ones with the solutions and can lead the way forward. I wrote an essay for my blog about disability rights and the pandemic this summer.

SR: This collection was also published during a time of crisis in the US. A pandemic, racism, and diverging politics have raised many concerns about our nation’s priorities. What does it mean to you to release this collection in tandem with these conversations about the morals of our nation?

AW: This book is out at the perfect time because the wisdom from these essays speak to these moments, provide historical context, and present ideas for the future. For example, climate change is one of the most important issues right now with wildfires, hurricanes, and other natural disasters happening across the world. Patty Berne’s essay “To Survive Climate Catastrophe, Look to Queer and Disabled Folks” should be read by everyone. This is the same for a 2016 piece by the Harriet Tubman Collective, “Disability Solidarity: Completing the ‘Vision for Black Lives,” in this year of uprisings against police brutality, the prison industrial complex, and systemic racism.

SR: In “Still Dreaming Wild Disability Justice Dreams at the End of the World,” Leah Lakshmi Piepzna-Samarasinha writes, “As disabled people, we are often both hypervisible and invisible at the same time.” I find this to be a very sad truth. How do you hope this collection will help disabled people achieve a just and equitable existence?

AW: My hope is that Disability Visibility will spark some reflection and questioning about ableism and how it’s embedded at all levels of society and intertwined with white supremacy. Being seen is not enough—disabled people should not have to ask for understanding or defend our right to take up space. We are everywhere and part of every community. It’s time for nondisabled people to do the work and be in solidarity with us for justice.