Alice Wong has the distinct ability to tear apart the shadows of the world and show us what’s always been there. She’ll blow a hole through your understanding of how the world is and was, and how people have navigated it, through the old way. She invites us to look up the unfamiliar and make it our home, make it our new way.
Wong has long been an advocate for disability justice, crafting essays and books and podcasts and websites to spotlight the lived experience of those in the disabled community. Her latest book, an anthology titled Disability Visibility, compiled stories from all types of people, all with disabilities, into a work of literary art. She has granted readers the ability to jump into 30 different lives, walk around, and hop to the next, and now she’s ready to tell her own story, the way she wants to.
“I think it [disability] means living in a world that wasn’t built for you, you know, living in a world that by design doesn’t really want you or center you,” Wong said. “I think that’s the biggest kind of general explanation because, if we were valued, you know we’d be completely integrated and centered and thought of.”
Wong wanted to let people know that there was a whole disabled culture and community, a “universe,” that often gets overlooked.
“This is very similar to other marginalized people so it’s not like we’re the only ones who are undervalued,” Wong said, “but I think that’s what it means to live in a world that has rarely considered you… clearly socially or politically.”
Wong made sure to include different styles of writing, never getting too academic, in Disability Visibility, to showcase the range of experiences in the disabled community. Things that disabled people experience throughout their lives, like ableism, might seem new to readers, with reactions landing somewhere in the ballpark of “I would never do that!” But, Wong says, these issues remain anything but new for the disabled community.
“These are things that, being part of the disabled community, I have always known and lots of people have always known,” Wong said, “but I think the best way to share about this is through first-person stories because that is often the way that people outside of a community really connect with people.”
Wong self-published a previous anthology, Resistance and Hope, in 2018, after Donald Trump was elected, with a similar premise: to tell the stories of disabled activists, artists, and writers, just under a much smaller scale. Wong said she was “scared to death” upon his election, and began thinking about the resistance of the disabled community.
“I was like, wow, disabled people have been resisting for centuries, if not millennia, and there’s so much wisdom,” Wong said.
She soon decided to pool some of this wisdom together in Resistance and Hope, sensing how important it was at the time to center this longtime resistance. Along the way, she learned how to assemble these stories into a curated piece, skills that would come in handy later as she put together Disability Visibility.
Wong said that Disability Visibility was designed to be broader in scope, with 21st-century stories more reflective of disability culture and the times we live in than the first.
“I think the overall thinking behind the overall theme and selection of the pieces is really about what do I think is important. Sometimes, I think, as an editor, the power we have to really curate reflects sort of our thinking about the world,” Wong said. “That’s something I made very clear that this is a reflection of what I think is important, what I think is powerful, what I think is necessary.”
Wong hopes the anthology begins a dialogue, through which we can all start “learning and unlearning,” the confining stigma and stereotypes associated with disability. Wong even included a diverse reading list for those who want to deepen their understanding of disability culture at the end of the book, because Disability Visibility was never meant to be an end-all-be-all of everything there is to know.
There are so many nuanced stories, Wong said, that to say her book has everything there is to know about the disabled community wouldn’t be true.
“No one book should ever try to attempt to capture this community, but this is a very specific portrait that’s very much about the political issues that face many of us, and the fact that we’re not a monolith,” Wong said.
Rather than have a checklist of different disabilities to include in the book, she chose stories that personally moved her, that she feels the world needs to know more about. Wong said she was aware of the privilege she had of assembling the anthology and choosing which stories to include, especially since Vintage, a major publishing house, would be releasing it.
Conscious of this opportunity, she sought to bring more eyes to the work of people featured in the book.
“A lot of these folks aren’t celebrities, they aren’t famous, but that’s the point, right? That is absolutely the entire point. But the reading list was really to make sure that other writers, other activists, other organizations got to shine,” Wong said. “I want readers to come away with like, “oh, I only know one book by a disabled person,” no, you don’t. There’s no excuse now.”
Including further reading opportunities at the end of the anthology is Wong’s way of sending readers on their own adventure through the writings of the disabled community, giving readers who truly want to learn more a pathway to doing so. She hopes this leads to something else, something new, as more and more people who are new to the community realize its scope.
“A lot of people just don’t think of disability as a community, as a political identity, or as a culture. They think about it as, “oh, you’re sick,” or, “there’s something wrong with you,” which I think is, you know, part of it, but not the only thing,” Wong said. “It’s so much broader, so much richer than that.”
Though she said each story offers something vital to the overall anthology, the stories that continue to stick with Wong can be found at the beginning and end of the book.
The late Harriet McBryde Johnson’s section, Unspeakable Conversations, gives readers an inside look at her famous discourse with Professor Peter Singer, who advocated for the abortion of babies with disabilities, of people like Johnson and Wong. Wong described the piece as “a real gut punch,” that tackles the disregard for disabled life that continues to circulate to this day.
“It really impacted me because she said things that I’ve felt and also experienced, and I just felt such gratitude that she [was] in the world and that she’s articulating things that are very complex, and, let’s face it, very difficult,” Wong said. “These are very difficult things that a lot of people don’t want to talk about. Even today, let’s say with the pandemic, so many communities are considered disposable.”
Of all the essays in the book, Wong wanted people to read Johnson’s, hence why it begins the anthology. Wong designed the book to act as a political awakening for a lot of readers, opening them up to the experiences of disabled people that aren’t broadcast for everyone to see.
“I do want to politicize people, I think that’s an OK thing to do.”
Writer s.e. smith’s piece, The Beauty of Spaces Created for and by Disabled People, acts as a sort of hopeful bookend to the anthology, a look towards the future of disability activism and community.
“You have the horror, the difficulties and challenges, and disregard for disabled people right at the beginning,” Wong said, “but s.e.’s essay about the beauty of disabled spaces is just so ethereal, so lovely, so grounded in community, that is what I wanted to leave the reader with.”
Diane Cejas, who was treated for cancer at the same hospital that she worked, shared the frustration she experienced when faced with the same recurring sympathy from her coworkers who witnessed her at her most vulnerable. Cejas described storytelling as a balm, a way to connect with coworkers and unload the weight of her recovery at the same time.
Wong said that while everyone has a story to tell, a lot of people don’t consider their stories worth telling.
“I do find stories to be a balm for the storyteller, to feel like, “my story matters, my story adds to this larger canon of work,” and that I should take up space,” Wong said. “When people are ready to tell their story, whether it’s privately or publicly, they should feel proud to take up space.”
Internalized oppression or the fear of disinterest or misunderstanding in their stories can stop us from sharing our stories, but Wong advises us to do it for ourselves, rather than an audience, regardless. The act of sharing can even be liberating, or a “liberating balm” as Wong put it, allowing ourselves to acknowledge our own importance.
Even Wong learned from gathering and ordering the stories into a cohesive anthology, despite not writing a piece herself. Editing, she found, remained just as challenging as writing a book.
“That’s one myth I would love to dispel because it was a lot,” Wong said. “That to me was my own discovery as an editor about why I’m doing what I’m doing. I’m constantly interrogating, “why am I doing this,” or, “what is this for,” and for me, it just confirms my beliefs.”
Telling the stories of other people remains central to who she is, and putting together Disability Visibility only cemented the joy she had in doing so.
“It’s corny, but that is how I want to change the world, is really kind of uplifting and amplifying other people. That’s kind of, I think, what I’m really good at.”
Wong acknowledges her work is only a drop in the bucket, an anthology of many lived experiences, but not all of them. To her, it is an extension of the larger community, exciting her with all she wants to do in the future.
“For all the gatekeeping and exclusion of publishing, I think when someone does make their way in, I do find a sort of responsibility to make sure that we open these up to as many people as possible.”
The beginning of the pandemic led Wong to think a lot about her own life, her own mortality, and what she wanted to do with her time. Wanting to build on the momentum of Disability Visibility, she wanted to propose another book. Rather than assembling another anthology, which would have been seamless from her first, she chose to write her memoir, Year of the Tiger, to be released in 2022.
“I thought you know what, in 2022, I’m going to turn 48, and the zodiac, that’s my sign, the tiger, and it’s the year of the tiger,” Wong said. “I thought the timing of this, if I wrote about myself, if it came out the year of the tiger, that would just be a beautiful symmetry, the title of the book and also where I’m at in my life.”
Wong began to “feel her age,” and reflect more on her work, and wanted to take this chance to share her personal stories, published works, and more in her own “anthology of me.” The act of writing her own memoir was daunting for Wong, who was used to editing and interviewing on top of, like a lot of us, being her own worst enemy.
At the same time, she craved something new and creatively challenging, and a memoir fit neatly into both wants, and the anthology gave her the confidence today what she wanted to say, tell her story the way she wanted it told, without leaning into the tendency for trauma-porn-driven narratives of disability.
“I feel like I’ve earned it. I’m at the point in my life where I’m ready to do it, versus feeling shy about it,” Wong said. “I’m ready now to be more public about myself.”
For Wong, spending the past year on her memoir, and inadvertently on herself, has been a gift, a way to hone in on her story and craft, without overthinking how many read it or what they think of it. Wong is ready to be selfish, with her only gauge being her own pride in her work; everything else is “icing on the cake,” as Wong put it.
Her intersectional identity also remains important to Wong and central to the narratives she tries to share about the disabled community. Disabled people of color exist everywhere, Wong said, and so any movement has to address these intersections of identity, rather than siloing one aspect of a person.
“Within Asian-American communities, I think there’s more clearly stigma and invisibility, and to be honest, shame,” Wong said, “but there’s also so many other values and cultures that I think, within the Asian and Asian-American community, that really also have to do with caring about others, about interdependence, things that really are disability-related values.”
Having felt like the outlier when she was younger both in Asian-American and disabled spaces, Wong resists binaries in her daily life, embracing “her people” in distinctly intersectional spaces. Rather than paying attention to the separation of identities, she looks to where they meet and builds a chosen family, a community, upon that instead.
“When we identify in a certain way, we are exercising our agency, we’re framing ourselves the way we want, and that’s part of the way that we create community for each other, by identifying and claiming certain things,” Wong said. “That’s just the beginning step. That’s just the beginning of ‘changing the world.’”
She says this phrase with sarcastic optimism, but if anyone earned the right to this “corny” phrase, it’s Alice Wong.
FEATURED IMAGES VIA ALICE WONG