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Authors Alice Wong and Stephanie Foo discuss disability, activism, and the importance of sharing your story
Meet Alice Wong. She’s the founder and director of the Disability Visibility Project, an online creative space for promoting and sharing disability media, as well as the editorial mind behind the 2020 essay collection Disability Visibility: First-Person Stories from the Twenty-First Century (which has since been adapted for young adults).
Wong’s writings on disability justice have also been published in countless publications, including The Washington Post, The New York Times, and Radiolab, among others. “She’s not just talking the talk,” says fellow author Stephanie Foo (more on her in a bit!). “She’s so community-oriented and so about lifting all of us up.”
But while Wong elected to write—in fact, her favorite space at school was the library—the advocacy part chose her. She explains, “I’m an activist whether I wanted to be or not, because I am a disabled person born into a non-disabled world.”
Obtaining the tools to engage in that activism, though, often means breaking a few conventions, especially since Wong finds most traditional forms of activism inaccessible. “So,” she says, “I made it my own.”
This is where her debut memoir, Year of the Tiger, enters the frame. Born in the wake of Wong’s preceding anthology (2020’s Disability Visibility), the book aims to accelerate that movement’s momentum. Coincidentally, 2022 would also be Wong’s year—like the year she was born (1974), it was also a Chinese Year of the Tiger. Add a little pandemic-stoked urgency and future uncertainty to the fire, and she had the perfect publication storm. “Reflecting on what I’d done,” she says, “the title came to me for a memoir.”
Wong, however, was resolute in telling that story on her own terms. “Many memoirs bore me and seem very self-aggrandizing,” she says. “I wanted to show people what I’ve done instead of telling [them about] my life.”
To do this, she chose to layer her book with a selection of mixed media—including commissioned artwork, podcasts, and even a few SMS clips—interspersed with her past publications, ranging from funny to slightly profane.
Telling the Story
Year of the Tiger will be the subject of an upcoming event with the National Writers Series, though due to health concerns, Wong is not able to appear. Stephanie Foo, journalist and acclaimed author of What My Bones Know: A Memoir of Healing from Complex Trauma, will be speaking on Wong’s behalf.
For Foo, the book’s multi-sensory narrative—and the landscape of Wong’s lived experience—opens the door for real conversation. “The format of the book is really [important],” she says, “because it embodies the message that we can break the rules to create a world that’s accessible to disabled folks.”
She adds that the book was also gloriously bereft of the pity society often pins on the disabled community. “[Wong’s work] sort of shatters that view of, ‘look at how courageous this person is to be disabled and merely surviving,’” Foo explains.
Instead, both she and Wong promote a more nuanced take on disability, one that confronts limitations while still celebrating the fullness of life. In doing so, they’re destroying the ableist narrative and replacing it with one of inclusivity that extends to marginalized folks of all stripes.
“Stories shape how we see ourselves. That’s why it’s so important that books like [Wong’s] are out there,” says Foo. “They’re critical to our zeitgeist.”
Foo’s own memoir, What My Bones Know, details her complex-PTSD diagnosis (that’s a disorder caused by long-term trauma) and the subsequent journey to both understand and heal from her condition. Her early search for literature, though, yielded only clinical accounts. “I wanted to immerse myself in a first-person narrative on c-PTSD, and I didn’t see any [books] that described the experience of possessing it,” she says.
So Foo set out to write one herself. It’s in this realm of reframing those ideals that Wong’s work intersects with hers. “I really wanted to create something that was, [like Year of the Tiger], a little outrageous, a little funny,” she notes. “[Celebration] isn’t something we see enough in the disabled narrative. Of all the books I had read, the [attitude] surrounding c-PTSD was one of being broken inside. And I was like, that cannot be the only way we see ourselves.”
Listening and Learning
How can folks better support those within that community? Both Wong and Foo agree that literature is a great place to start. “We are in a time where there is a wealth of disabled wisdom in print. Educate yourself and get politicized,” says Wong. She says this is not only to show support for those authors, but also to avoid the embarrassing error of making an incorrect assumption.
Foo explains, “Often a mistake that people make is trying to give [disabled] people what they think they need,” when, regardless of how well-intended the gesture, “that is not what we need at all.”
Consequently, the development of equitable infrastructure is an equally-important goal, and Foo says reshaping our understanding of “normal” is critical to creating them. No two human experiences are the same, and what might feel effortless to one person could be the keystone to survival for another.
To put the concept in perspective, Foo invites readers to consider the kind of impact an exceptional condition might have on something as basic as going to work. “For example, I don’t know that I’ll ever have a job again that I have to go into an office for,” she says, “so, having employers that understand and can work around that is really key.”
Those accommodations, however, are not always met, thanks in large part to injustices ingrained in our labor laws. When that happens, Foo says, “You have to figure out how to fill those holes. You’re really just fighting for yourself.”
When a system fails one person, though, it fails everyone involved. This is where writers like Foo and Wong, whose work aims to fill a societal void, inherently carry an activist torch. “You see the holes that people fall through because you’ve fallen through them yourself,” Foo explains. “You also have to fight for everyone else.”
About the Event
This virtual event takes place at 7pm on Thursday, December 8, and will feature a conversation with Stephanie Foo on behalf of Alice Wong. Tickets are $9.95 and can be purchased, along with sale-priced copies of Year of the Tiger (Wong) and What My Bones Know (Foo), via the National Writers Series website. The guest host for the evening will be local writer and teacher Susan Odgers. To reserve tickets or for more information, visit nationalwritersseries.org.