Alice Wong, an eminent disability rights activist, author, and founder of the Disability Visibility Project, passed away on 14 November 2025 at age 51. As the world mourns her loss, her inspiring story continues to be shared and her legacy remains strong to inspire future generations to come.
In 1974, Alice was born in Indianapolis to immigrant parents from Hong Kong. At birth, she was diagnosed with a rare condition called Spinal Muscular Atrophy. Alice grew up as the only Asian American and physically disabled person in her school. While struggling with bullying within the community around her, she put her heart into writing, as she wrote about her longing to blend in and internalized racism. By her 20s, Alice had sparked a passion to make her voice heard and her disability visible. This would be the beginning of her trailblazing, revolutionary journey to elevate the stories and voices of the disabled community.
In 1997, Alice graduated from the University of Indiana with a bachelor’s degree in English and Sociology and later graduated from the University of California, San Francisco in 2004 with a masters degree in Medical Sociology. Alice worked as a staff research associate at UCSF for more than a decade, where she was dedicated to make the college campus more accessible to those with disabilities, as well as introducing disability studies to the medical curricula. In 2013, Alice was appointed by Barack Obama to the National Council of Disability, where she educated the Federal Government on disability policy. Furthermore, in 2014, Alice founded the Disability Visibility Project, which would become “a digital community that would define Disability representation in the 21st Century,” as stated in an article from Forbes.
The Disability Visibility Project is an oral history project created to bring attention to the stories of disabled people nationwide. While initially expected to only run for a year, Alice’s project significantly grew, sharing stories through podcasts, videos, and writing. Due to Alice’s transformative actions, hundreds of disabled people’s voices have been amplified, leading to many of the stories to be archived in the Library of Congress. Moreover, Alice is also known for her prominent digital activism. In 2016, Alice co founded #CriptheVote, a non-partisan campaign which promoted political participation to the disabled community. An article from Forbes states that “even as her health declined, Alice continued to lead with humor and precision, using her Twitter feed as both a megaphone and a classroom.”
Alongside her activism, Alice was also an author. Alice edited two collections: Divisibility Visibility: First-Person Stories from the Twenty First Century (2020) and Disability Intimacy: Essays on Love, Care, and Desire (2024). As her health worsened, Alice started communicating through a speech to text app, but that didn’t change her disposition on life or her passion for change. Additionally, Alice wrote a memoir titled Year of the Tiger: An Activist’s Life (2022), which provides readers with a perspective from someone who has lived and led as a disabled person despite ableism. Alice also wrote opinion columns for Teen Vogue, through which she spoke out against issues facing the disabled community. In 2024, Alice was awarded with a “genius grant,” a fellowship from the MacArthur Foundation, voiced a character in the Netflix show “Human Resources,” and moved into her own apartment.
While driven by her passion for change, Alice used her disability as a strength to advocate for the disabled community. Alice’s significant achievements ranging from the DVP to writing have magnified the disabled community. Her legacy leaves an imprint of courage, hope, and inspiration in the world today, and she will continue to be honored, remembered, and missed.
