Alice Wong
1974-2025 · United States →
Alice Wong was an American disability activist, writer, and editor. She founded the Disability Visibility Project, which gathered and amplified the stories of disabled people across the United States. She was born on 27 March 1974 in Indianapolis, Indiana. Her parents had immigrated from Hong Kong. Alice was their eldest daughter.
She had a genetic neuromuscular condition from childhood. Over her life, her muscles grew weaker. She used a powered wheelchair and, in her later years, a device to help her breathe. She described herself sometimes as a 'cyborg', reclaiming the machines that kept her alive as part of her identity rather than a sad necessity.
She studied English and sociology at Indiana University and later earned a master's in medical sociology from the University of California, San Francisco. She lived in San Francisco for most of her adult life. She worked at UCSF as a research associate for over ten years, studying health care for disabled people. In 2013, President Obama appointed her to the National Council on Disability, a federal body that advises the US government. In 2015, she took part in a White House ceremony for the 25th anniversary of the Americans with Disabilities Act. She attended through a telepresence robot, one of the first public figures to do so. Obama waved at her robot on camera.
In 2014 she founded the Disability Visibility Project with StoryCorps, a non-profit oral history group. Over the following decade she built a huge body of work: anthologies of disabled writers, podcasts, campaigns, and a memoir called Year of the Tiger (2022). In 2024, the MacArthur Foundation named her one of their fellows, an award often called a 'genius grant'. She died in a San Francisco hospital from an infection on 14 November 2025, aged 51.
"Disability is so much more than pain, trauma and tragedy. There's creativity, adaptation, and talent that comes from living in a non-disabled world."