Alice Wong, disability activist and luminary, dies at 51

Alice Wong platformed and uplifted people with Long COVID in her final chapter as a lifelong disability advocate and storyteller

Alice Wong, a fierce disability activist, advocate for people with Long COVID, and founder of the Disability Visibility Project, died on November 14. She was 51. 

The beloved author and 2024 MacArthur Fellow passed away on Friday evening in San Francisco, California, as a vast atmospheric river descended over the state. Sandy Ho, Wong’s friend, posted a message on Wong’s personal Instagram account around 9 p.m. Pacific Time. 

“Per Alice’s wishes, this message is being shared at the time of her passing,” Ho wrote before sharing words Alice had composed before her death.

“Hi everyone, it looks like I ran out of time,” Wong wrote. “I did not ever imagine I would live to this age and end up a writer, editor, activist, and more.” She wrote that she had “many dreams that I wanted to fulfill and plans to create new stories for you,” a few of which remain in progress.

Alice supported and took many people with Long COVID under her wing — I was honored to call her a colleague and friend. 

In a statement, her family shared that Wong died at a University of California, San Francisco, hospital “due to an infection.” They wrote that she will be remembered as “a fierce luminary in disability justice, a brilliant writer, editor, and community organizer.”

I did not ever imagine I would live to this age and end up a writer, editor, activist, and more.

Alice Wong, in her final message

The disability and chronic illness community began mourning Wong shortly after the news of her death. “Losing Alice feels like the ground shifting beneath us … She was one of the most fearless, generous & visionary disability activists,” Death Panel cohost Beatrice Adler Bolton wrote on social media. “It’s impossible to measure how she shifted the world — I feel it everywhere.”

Steven Thrasher, a friend and collaborator of Wong’s, wrote on social media, “She was a force of nature the likes of which the world has never seen before.” The nonprofit group Long COVID Advocacy shared, “A trailblazer, a fierce advocate, and a relentless voice for disability rights. [Wong’s] work changed the landscape for so many.” Patient-Led Research Collaborative co-founder Lisa McCorkell told me, “To know Alice was to love her. She felt larger than life, with a generosity, ingenuity, humor, and passion for justice unlike anything I’ve ever known.”

Wong was born in the suburbs of Indianapolis, Indiana, in 1974, to parents Henry and Bobby Wong, who had migrated from Hong Kong to the United States. Wong was born with spinal muscular atrophy, a set of genetic conditions that causes muscles to become weak and waste away. By age seven or eight, she could no longer walk.

“As a kid riddled with insecurity and internalized ableism,” she wrote in her message shared by Ho, “I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin.”

Isolated from her peers, Wong stated that the library became her “sanctuary” when she was a child. She cited formative literature including Madeleine L’Engle’s science-fantasy novel A Wrinkle in Time and the writing of Octavia E. Butler as inspirations for her work, as well as television shows like Super Friends, Star Trek, and X-Men.

In 1997, she earned a BA from Indiana University–Purdue University Indianapolis in English and sociology, before getting a master’s degree from the University of California, San Francisco, in medical sociology in 2004.

Wong believed deeply in the importance of disabled storytelling throughout her life. In 2014, she founded the Disability Visibility Project, an online community dedicated to creating, sharing, and amplifying disability media and culture.

“Storytelling is a powerful form of resistance,” she said in her 2024 MacArthur Fellow video. “It leaves evidence that we were here in a society that devalues, excludes, and eliminates us … There is such diversity, joy, and abundance in the lived disabled experience. We are multitudes.” 

Her project and its collaboration with StoryCorps have uplifted and given a platform to thousands of disabled people.

Storytelling is a powerful form of resistance. It leaves evidence that we were here in a society that devalues, excludes, and eliminates us.

Alice Wong, MAcarthur Fellow video

Wong later became an author and book editor, further platforming people with disabilities in anthologies Disability Visibility: First-Person Stories from the Twenty-First Century and Disability Intimacy: Essays on Love, Care, and Desire. She is also the author of the memoir Year of the Tiger: An Activist’s Life (2022). 

At the time of her death, she was at work on Disability Vulnerability, “an anthology of writing that explores the precarity of life in the disabled community, focusing on the COVID-19 pandemic and ensuing fallout.” In her work on the anthology before she died, Wong included many writers with Long COVID. 

“We need more [disability] stories about us and our culture,” she wrote in her message. “You all, we all, deserve everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching.”

Wong quickly took people with Long COVID under her wing early in the COVID-19 pandemic. She featured numerous stories on the Disability Visibility Project over the past few years, particularly of people of color who had Long COVID. And in 2024, she funded the Color of Long COVID series for our site The Sick Times, an ongoing collection of essays by people of color with the disease. 

Alice and the Disability Visibility Project were also generous donors to The Sick Times, helping fund our general work and operations on the Long COVID crisis and the ongoing pandemic. We are forever grateful for her support and her belief in us. 

Through our work in disability media, I became friends with Alice over the past few years. Our friendship started with direct messages that turned into emails, letters, and postcards, before we finally met a few times in San Francisco at her apartment, and, the last time I saw her, by the beach on a cold, overcast day this past July where she kept warm with in a bright orange beanie. 

You all, we all, deserve everything and more in such a hostile, ableist environment.

Alice Wong, in her final message

Alice’s work and activism extended far beyond media and storytelling. She also connected people, helping support Ed Yong’s Spoonbill Club, a Long COVID birding group in the Bay Area. And building on her prior social media disability campaigns like #CripTheVote, Alice also advocated relentlessly for people with Long COVID. In 2023, she started the #PodSaveJon campaign, challenging the ableism and Long COVID minimization of Pod Save America podcaster Jon Favreau and Sen. Bernie Sanders. 

In remarks celebrating the Disability Visibility Project’s 10-year anniversary last year, Long COVID advocate Charlie McCone said that Sen. Sanders convened the 2024 Senate hearing on Long COVID in large part due to the recent online discussions about Long COVID led by Wong’s campaign. 

Wong wrote bravely about her life, uplifted community, and significantly changed the landscape for people with disabilities. Mother Jones disability reporter Julia Métraux wrote, “What a privilege it is to be a younger disabled person in a community shaped by Alice Wong.”

Alice’s mutual aid efforts extended around the world. In 2023, she also co-founded Crips for eSIMS for Gaza, a mutual aid crowdfunding effort, with Jane Shi and Leah Lakshmi Piepzna-Samarasinha. The campaign has raised over $3 million to support communication access for Palestinian people during Israel’s genocide in Palestine. 

In the post shared by Ho, Alice included photos of herself at a winery tour in California’s Napa Valley. In three photos, she sits in her black power wheelchair and a Louis Vuitton monogrammed sweater with matching pants before a castle and beside wooden barrels.

In true Alice form, she matched her force-of-nature spirit with bold fashion. On top of her fierce activism for disability rights, Alice also had an incredible sense of humor and style; her wit was unmatched and as fierce as the bold big cat prints she frequently wore. She constantly turned people’s heads in public with her rockstar undercut hairstyle, bright red lipstick, and captivating aura.

Alice Wong is survived by her parents, her sisters Emily and Grace, and her two cats, Bert and Ernie.

“I’m honored to be your ancestor and believe disabled oracles like us will light the way to the future,” she wrote in her final post. “Don’t let the bastards grind you down.”

“I love you all.”

I’m honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don’t let the bastards grind you down. I love you all.

Alice Wong, in her final message

---

Wong’s family invited community members to contribute to her GoFundMe. Some fellow disability activists have also recommended supporting Crips for eSims for Gaza.

Editor’s note: The Sick Times received grants from the Disability Visibility Project for the Color of Long COVID series and general operations. Our newsroom operates independently of financial supporters.

All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.