Alice Wong, disability rights activist and author, dies at 51

Alice Wong, a leading disability rights activist, author, and founder of the Disability Visibility Project, has died at 51 years old. She died Friday of an infection at the University of California, San Francisco hospital, NPR reported.

Wong’s family announced the news on social media, mentioning that she will be remembered as "being a fierce luminary in disability justice, a brilliant writer, editor and community organizer."

Wong was born on March 27, 1974, in Indianapolis, Indiana, to immigrant parents from Hong Kong. Diagnosed at birth with spinal muscular dystrophy, a progressive neuromuscular disease, she used a powered wheelchair and an assistive ventilator throughout her life.


Growing up as one of the few disabled and Asian-American students in her school, Wong experienced and overcame the challenges of ableism and racism, eventually channeling her experiences into advocacy and storytelling.

She founded the Disability Visibility Project in 2014, which evolved into a powerful platform for disabled people's voices, and contributed to national disability policy as a former member of the National Council on Disability.

Recognized with a MacArthur 'genius' fellowship in 2024, her work reshaped public discourse on disability by emphasizing inclusion, intersectionality, and empowerment. Wong’s passing marks the loss of a transformative leader whose legacy will continue to inspire disability justice movements globally.

Wong's disability activism was deeply informed by her personal experiences and her commitment to intersectional justice, including efforts to amplify the voices of disabled people of color.

She edited influential works such as Disability Visibility: First-Person Stories from the Twenty-First Century, authored her groundbreaking 2022 memoir Year of the Tiger: An Activist’s Life, and played a critical role in campaigns like #CripTheVote.

Widely lauded for her leadership and vision, Wong’s work extended to supporting those affected by Long COVID and combating systemic barriers in healthcare and media.

Her death comes as a profound shock to her communities, with memorials emphasizing her courage, warmth, and relentless advocacy. Wong’s impact continues as an inspiration to disabled individuals and allies worldwide, highlighting the ongoing necessity for disability rights and visibility.

FAQs

Who was Alice Wong?
Wong was a disability rights activist, writer, and founder of the Disability Visibility Project who fought for systemic change and amplifying disabled voices.

What was the Disability Visibility Project?
A platform collecting and sharing first-person stories from disabled people to expand understanding and representation.