This tribute is based entirely on reporting from Disability Scoop.
Alice Wong, the groundbreaking disability rights activist known for her wit, creativity, and willingness to shock systems into accountability, has died at the age of 51. Disability Scoop reports that she passed away following an infection at UCSF Hospital.
Wong was widely recognized for her radical imagination and her fearless approach to justice. She called herself a "cyborg oracle" and used technology, storytelling, and political strategy to confront ableism. Her national profile rose in 2013 when President Obama appointed her to the National Council on Disability. She later attended a White House reception through a telepresence robot, a moment that symbolized both her ingenuity and her insistence on access.
Disability Scoop highlights her influence as an author, podcaster, editor, and founder of the Disability Visibility Project. Her #CripTheVote initiative shifted political conversations, and her advocacy helped thousands of high risk Californians gain earlier vaccine access during the COVID pandemic. She also challenged policies like plastic straw bans that ignored disabled people's needs.
Wong received a MacArthur Foundation genius grant in 2024 for exposing systemic prejudice and expanding public understanding of disabled lives.
After her passing, a prewritten message was released. In it she wrote: "Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you." She reflected on her childhood, internalized ableism, and the power of storytelling. She urged the world to create more space for disabled culture, saying "You all, we all, deserve the everything and more in such a hostile, ableist environment."
Friends, leaders, and organizations described Wong as a visionary. Sandy Ho called her a "disabled oracle" who could see the future. San Francisco's mayor praised her courage. The American Association of People with Disabilities wrote that she made the "complexity of disabled experiences visible to the world."
Born in 1974 to immigrants from Hong Kong, Wong grew up in Indianapolis. She lived with a rare form of muscular atrophy, used a wheelchair from grade school, and relied on a BiPap ventilator. She wrote powerfully about her relationship to technology, calling her devices "bits of hardware" that grounded and liberated her.
Her writing explored how painful labels like "defect" and "abnormal" became sources of power and resistance through creativity. Her memoir, Year of the Tiger, blended vulnerability with cultural critique, imagination, and her belief in collective liberation through art and storytelling.
Disability Scoop notes that Wong was known for her red lipstick, black power chair, and gray ventilator. She wrote for Teen Vogue, The New York Times, and many other outlets. She addressed issues ranging from medical crowdfunding to national health policy. She spoke about the danger that political shifts posed for disabled people and insisted on a world where disabled joy and survival are prioritized.
Her final message, released by her family and shared by Disability Scoop, ended with words from 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."
Rest in power, Alice Wong. You changed the world and expanded what is possible. Visit the Disability Visibility website she created here.
Read her work:
- Disability Intimacy: Essays on Love, Care, and Desire
- Year of the Tiger: An Activist's Life
- Disability Visibility: First‑Person Stories from the Twenty‑First Century
- Disability Visibility (Adapted for Young Adults): 17 First‑Person Stories for Today
- Resistance & Hope: Essays by Disabled People
- Visit the Society of Disabled Oracles - a creation of Alice Wong, Aimi Hamraie and Jen White Johnson.