Alice Wong, a visionary disability justice advocate whose writing helped people understand what it was like to live with a disability, died of an infection Friday at a San Francisco hospital. She was 51.

“I did not ever imagine I would live to this age and end up a writer, editor, activist and more,” Wong wrote in a posthumous message on social media. “We need more stories about us and our culture. You all, we all, deserve the everything and more in such a hostile, ableist environment.”

Wong was born with muscular dystrophy. She used a powered wheelchair and a breathing device and said doctors had not expected her to live past 18. 

Her early experiences navigating medical and social barriers shaped her life’s work — turning personal struggle into a public campaign for equity, visibility and change.

Rooted in San Francisco’s vibrant disability justice movement, Wong pushed to reshape how the Bay Area — and the nation — understood equity, spotlighting barriers to access in the city’s universities and restaurants.

When Bay Area coffee shops moved to ban paper cups, Wong told the Chronicle how the decision would burden those in the disabled community with limited mobility or decreased sensation in their hands. For them, glass and ceramic mugs were often too heavy and slippery.

Wong also worked to establish accessible resources for disabled students at UCSF, where she earned a master’s degree in medical sociology in 2004 and later worked as a staff researcher for more than a decade. 

She had moved to San Francisco in 1997 to attend the university, which at the time, she said, didn’t have any accessible places for her to live. The university built her a one-room unit in the garage of a professor’s house, Wong said in her memoir, “Year of the Tiger: An Activist’s Life.” She worked with UCSF’s Office of Student Life to change access for disabled students. 

Wong said she struggled at university and pushed off work for her classes. Around 2001, she stopped being a student before returning to finish her degree. Years later, Wong said one of her professors apologized, saying he was sorry the department hadn’t done more to support her. 

“Disabled people have resisted for millennia efforts to eliminate us and erase our culture,” Wong said in 2024 during an alternative communication research summit. “Doctors told my parents I wouldn’t live past 18, so I grew up never imagining what grownup old ass Alice would look like, and this is why visibility, being able to tell our stories and controlling our own narratives, is why I do what I do.”

The founder of the Disability Visibility Project, which collects oral histories of Americans with disabilities in conjunction with StoryCorps, Wong has been at the forefront of chronicling how COVID and its unparalleled disruption of lives and institutions have underscored challenges that disabled people have always had to live with.

Though Wong often jokingly described herself as an “angry disabled Asian girl,” she brought sharp humor and insight to her activism. In “Disability Visibility: First-Person Stories from the Twenty-First Century,” she edited authors exploring inequities within the disabled community and how society values certain bodies over others.

“There is a cyborg hierarchy,” disability activist Jillian Weise wrote. “They like us best with bionic arms and legs. They like us Deaf with hearing aids, though they prefer cochlear implants. It would be an affront to ask the Hearing to learn sign language. Instead they wish for us to lose our language, abandon our culture, and consider ourselves cured.”

Wong wrote about her own experience transforming into what she calls a cyborg in an article for Literary Hub.

“Doctors advised me to get spinal fusion surgery when I was around twelve, but I was too freaked out by the thought of it because it was a serious-ass procedure,” Wong wrote. “By eighth grade my parents told me I was near the final window for this surgery, which could improve my breathing and alleviate the deep fatigue I experienced every day. I relented — with no idea how it would turn me into a cyborg inside out.”

Wong’s achievements brought national recognition. In 2013, then-President Barack Obama selected her for a two-year seat on the National Council on Disability, which advised Congress and the president. In 2024, she received the prestigious MacArthur Foundation genius grant.

It was also the year, after decades of sharing a home with her parents, she moved into her own apartment in San Francisco with her cats, Bert and Ernie, according to the New York Times.

Wong is survived by her father, Henry, and her mother, Bobby, both immigrants from Hong Kong, as well as her sisters, Emily and Grace Wong.