Who was Alice Wong? Books, health struggles and more about disability rights advocate as she dies at 51

Alice Wong, who has been a leading light in the movement for disability rights and one of its most powerful advocates from her generation, died on Friday (November 14) at 51.

The award-winning author and activist, who also founded the Disability Visibility Project (DVP), died after an infection at the University of California, San Francisco hospital, family and friends said, as per npr.org.

Wong spent her life vocalizing and challenging ableist frameworks in the United States. Through her activities as a writer, public speaker and community organizer, she played an instrumental role in bringing disability culture and justice to the national dialogue, often focusing on the lived experiences of disabled people who had long been excluded from it.

Alice Wong became a disabled ancestor yesterday. Alice made the complexity of disabled experiences visible to the world — our joy, rage, and ferocity. She expanded our movement and the minds of millions. We are devastated to lose Alice, and lucky to have been changed by her. pic.twitter.com/qwGfQSh7gb

— AAPD (@AAPD) November 15, 2025

Wong was born in 1974 to immigrant parents from Hong Kong and raised in the suburbs of Indianapolis. Born with muscular dystrophy, she used mobility aids from an early age and was often the only disabled student, or sometimes the only Asian American, in her classrooms.

In interviews, Wong often discussed her early experiences with isolation, discrimination and self advocacy, experiences that in many ways would inform her future activism.

Wong graduated from Indiana University Purdue University, Indianapolis, with a bachelor’s degree, and from the University of California, San Francisco, with a degree in medical sociology. She went on to spend more than 10 years at U.C.S.F., as a research associate, as well as continuing to grow her role in the disability rights movement.

A look into Alice Wong's legacy and advocacy for disability rights

Alice Wong's most well-known work took off in 2014 when she started the Disability Visibility Project. The campaign worked with StoryCorps to document and archive first-person stories of disabled people across the nation.

Over time, the project became its own wider media platform, including essays and interviews and podcasts as well as social advocacy campaigns that drew attention to disability culture and collective care.

Wong was an important voice in the public discourse about disability as a writer, and editor. She edited the celebrated anthology Disability Visibility: First-Person Stories from the Twenty-First Century and contributed essays to several major outlets.

Rest in power, Alice Wong. 🕊️

There are people whose work doesn’t just inspire you—it reroutes your compass. Alice Wong was one of those people for me.

Before Chronically Booked ever existed as a podcast or a community, there was a seed of an idea in me: that stories told from… pic.twitter.com/6RJiRrtQS2

— Nikki ✨💙 (@Ding_Gorgeous) November 15, 2025

Her 2022 memoir, Year of the Tiger: An Activist’s Life, detailed her life history and the experiences of living as a disabled person and described her vision for a more just society.

Wong, in the book, referred to herself as a “disabled cyborg,” alluding to her dependence on medical equipment like a ventilator and feeding tube following a series of serious health issues in 2022.

She had been seriously ill in recent years. A lengthy hospital stay in 2022 left her unable to speak, eat or swallow; she now relies on text to speech devices and around the clock medical care.

She also brought attention to the financial strain that disabled Americans are under by talking openly about how she depends on community fundraising to cover basic care and equipment.

Despite her challenges, Wong continued to participate in political and cultural agendas. She is also the co-founder of #CripTheVote, a nonpartisan effort to engage voters with disabilities on U.S. elections and has even participated in a White House event through telepresence robots, becoming the first person to do so at the White House using this technology.