Alice Wong

Alice Wong, the pioneering disability rights activist, writer and founder of the Disability Visibility Project, died November 14, 2025, at a hospital in San Francisco at the age of 51, due to an infection.

Born on March 27, 1974, in the Indianapolis area to parents who had emigrated from Hong Kong, Wong grew up with spinal muscular atrophy and used a powered wheelchair and breathing assistive device. Her early life, marked by both medical and social barriers, became the foundation of her lifelong advocacy.

After earning a bachelor's degree in English and sociology from Indiana University–Purdue University Indianapolis and later a master's in medical sociology from the University of California, San Francisco, Wong built a career rooted in narrative, representation and access. In 2013, President Obama appointed her to the National Council on Disability, marking her entrance into federal policy-advising on disability rights.

In 2014 she established the Disability Visibility Project (DVP), an online community and oral-history initiative that amplifies disabled voices. Through DVP and her writing and editing of anthologies such as "Disability Visibility: First-Person Stories from the Twenty-First Century" (2020) and "Disability Intimacy: Essays on Love, Care, and Desire" (2024), she shifted cultural conversations about disability from marginal footnote to central narrative. Her memoir, "Year of the Tiger: An Activist's Life," published in 2022, blends personal storytelling with reflections on structural ableism, and marks a significant contribution to disability literature.

In 2024 Wong was awarded a fellowship by the MacArthur Foundation, often referred to as the "genius grant," in recognition of her work to cultivate a vibrant disabled-led community rooted in joy, mutual aid and storytelling.

Wong's personal health history lent urgency to her advocacy. As a young person she was told she would not live past 18, yet she defied that expectation and turned her lived experience into a platform for systemic critique and reform. In 2022, she endured a collapsed lung and four weeks in intensive care, followed by use of assistive technology to continue her writing and activism.

Throughout her life, Wong prioritized community care, interdependence, cultural representation and the liberation of disabled people from institutional confines. In her final message, shared on social media after her death as per her request, she wrote, "We need more stories about us and our culture."

She is survived by her parents, Henry and Bobby Wong and her sisters, Emily Wong and Grace Wong.

By Legacy News Staff

(Image: Alice Wong via Facebook)