Alice Wong, an author and activist who fought for disability rights and justice, has died. Wong was 51 years old.
The MacArthur "Genius" Award-winner died Friday of an infection at the University of California, San Francisco hospital, according to an email sent to NPR by friend and fellow activist Sandy Ho.
"Alice Wong was a hysterical friend, writer, activist and disability justice luminary whose influence was outsized," wrote Ho. "Her media empire, the Disability Visibility Project, left an indelible mark on the cultural landscape of our country. The legacy of her work will carry on."
Wong's family said in a social media post Saturday that she will be remembered as "being a fierce luminary in disability justice, a brilliant writer, editor and community organizer."
"As we mourn the incomprehensible loss of Alice, we share the words she gifted us with from her memoir, Year of the Tiger. 'The real gift any person can give is a web of connective tissue. If we love fiercely, our ancestors live among and speak to us through these incandescent filaments glowing from the warmth of memories,'" her family wrote.
Wong was best known as the founder of the Disability Visibility Project (DVP). The group highlights disabled people and disability culture through storytelling projects, social media and other channels.
DVP launched in 2014 with an oral history project encouraging those with disabilities to share their stories in partnership with StoryCorps, a nonprofit that collects, preserves and shares the personal stories of everyday Americans. StoryCorps narratives are regularly broadcast on NPR.
From immigrant to community leader
Wong was born to immigrant parents from Hong Kong in Indianapolis, Ind. suburbs in 1974. She was diagnosed at birth with muscular dystrophy, a progressive neuromuscular disease that slowly weakened her muscles and doctors told her parents that she wouldn't live to the age of 18.
"I struggled a lot as a child," Wong said in a segment recorded earlier this year for NPR member station KQED. "I felt so alone and angry. I was mainstreamed in public schools and was usually the only disabled student in a classroom and or one of a handful of Asian American students."
She continued, "I had to grow up very fast advocating for myself with adults such as teachers and doctors, even though I didn't have the language for what I was experiencing."
Despite her many challenges, Wong earned a bachelor's degree from Indiana University–Purdue University Indianapolis followed by a master's degree from the University of California, San Francisco. After graduating, she worked at her San Francisco alma mater as a staff research associate for more than a decade. Meanwhile, her career in disability advocacy flourished.
Following a series of medical emergencies in 2022, Wong began communicating through digital text-to-speech technology. In her 2022 memoir Year of the Tiger: An Activist's Life, the author describes herself as a "disabled cyborg" – a person "tethered to equipment, technology and electricity to keep alive."
In addition to raising the profile of disabled people, Wong strove to dismantle systemic ableism in the U.S. She wrote about her opposition to the ban on drinking straws and the need to enforce the wearing of masks in health care settings. A social media power-user, Wong co-founded #CripTheVote in 2016, a nonpartisan online movement facilitates discussions about disability issues between voters and politicians.
Taking advocacy further
Wong was a prolific writer who received acclaim for Year of the Tiger. NPR described the book as highlighting the author's passion for "living an unapologetic, unabashed disabled life filled with science-fiction, good food, and cats." Wong's literary activities also encompassed editing several works on disability, and contributing a column to Teen Vogue.
"Alice is my comrade in political struggle. She's my friend. She's a foodie. She's an artist," said disability and social justice organizer Yomi Sachiko Young of Wong in a 2025 segment for KQED. "She's a bit bougie, which I love."
Wong also took her advocacy to the nation's capital. She attended a White House reception for the 25th anniversary of the Americans With Disabilities Act in 2015 through a telepresence robot. She was the first person to visit the White House and a U.S. President – in this case, Barack Obama – via a robot "surrogate," according to Popular Science. Wong served, at Obama's behest, on the National Council on Disability from 2013 to 2015.
Speaking with her digital voice on KQED in Feb. 2025, Wong said she was "radically committed to a life of pleasure and joy." She talked about her enjoyment of cooking for others, including twice-weekly lunches for her elderly parents, and caring for her cats, Bert and Ernie.
"Being able to use my privilege to pass on opportunities to other disabled people and support projects I believe in brings me so much joy," Wong said. "We live in such bleak times and what keeps me going is living to the maximum without apology."
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