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Alice Wong, Disability Rights Advocate and Founder of Disability Visibility Project, Dies at 51
A pioneering voice in the disability rights movement, Alice Wong, has died, leaving behind a legacy of advocacy, writing, and community building.The MacArthur “Genius” Award-winner passed away on Friday at the age of 51 following a battle with an infection at the University of California,San Francisco hospital,according to reports.
Wong was best known as the founder and director of the Disability Visibility Project (DVP), a platform dedicated to amplifying disabled voices and dismantling ableist systems. Her work profoundly impacted the cultural landscape of the United States, leaving an “indelible mark,” as described by friend and fellow activist Sandy Ho.
family members shared in a social media post that wong will be remembered as “a fierce luminary in disability justice, a brilliant writer, editor and community organizer.” they also shared a poignant excerpt from her 2022 memoir, Year of the Tiger, stating, “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.”
Launched in 2014, the DVP began with an oral history project in partnership with StoryCorps, a nonprofit dedicated to preserving and sharing personal stories. these narratives, regularly broadcast on NPR, provided a crucial platform for disabled individuals to share their experiences.
Born in 1974 to immigrant parents from Hong Kong in the suburbs of Indianapolis, Indiana, Wong faced critically important health challenges from birth. Diagnosed with muscular dystrophy, a progressive neuromuscular disease, doctors initially predicted she would not live past the age of 18. Despite these daunting odds, Wong persevered, earning both a bachelor’s degree from Indiana University-Purdue University Indianapolis and a master’s degree from the University of California, San Francisco.
Wong’s advocacy extended beyond the DVP. Following medical emergencies in 2022, she embraced digital text-to-speech technology, describing herself as a “disabled cyborg” – a person reliant on technology for survival. She channeled her experiences into powerful writing, including her acclaimed memoir and contributions to publications like Teen Vogue.
A dedicated advocate for systemic change, wong actively challenged ableism in various forms. She spoke out against the ban on drinking straws and advocated for mandatory mask-wearing in healthcare settings. In 2016, she co-founded #CripTheVote, a nonpartisan online movement designed to facilitate dialog between voters, politicians, and the disability community.
Colleagues and friends remember Wong as a multifaceted individual. Disability and social justice organizer Yomi Sachiko Young described her as “a comrade in political struggle,” a friend, an artist, and “a bit bougie, which I love.” Wong’s innovative spirit was also evident in her 2015 visit to the White House, where she attended a reception for the 25th anniversary of the Americans With Disabilities Act via a telepresence robot – a first in U.S. history. She also served on the National Council on Disability from 2013 to 2015 at the behest of President Barack Obama.
Even as her health declined, Wong remained committed to a life of joy and purpose. Speaking on KQED in February 2025, she expressed her dedication to “living to the maximum without apology,” finding fulfillment in cooking for her family, caring for her cats, Bert and ernie, and supporting other disabled people. “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,” she said.
Alice Wong’s unwavering commitment to disability justice and her tireless efforts to create a more inclusive world will continue to inspire generations to come.
