Alice Wong, the trailblazing disability rights advocate and author, died on Nov. 14 at a hospital in San Francisco. She was 51.
Wong, the founder of the Disability Visibility Project, died of an infection, her family said in a statement posted on social media by Wong’s friend Sandy Ho, executive director of the Disability & Philanthropy Forum.
“She will be remembered as being a fierce luminary in disability justice, a brilliant writer, editor and community organizer,” her family said.
Alice Wong, author of “Disability Visibility.”
Ho shared a message Wong wrote before her death in which she said she never imaged she “would live to this age and end up a writer, editor, activist and more.”
“It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin,” Wong wrote. “We need more stories about us and our culture.”
A disability activist with the nation’s attention
Wong was born on March 27, 1974, in Indianapolis. Her parents, Henry Wong and Bobby Wong, were immigrants from Hong Kong who had moved to the U.S. a few years earlier.
Wong was born with spinal muscular dystrophy, a rare genetic condition that causes muscles to become weak and waste away. She described being bullied and ridiculed as a child in her acclaimed 2022 memoir “Year of the Tiger: An Activist’s Life,” an experience she said set her on her life’s path to tell the stories of disabled Americans.
Wong is best known for founding the Disability Visibility Project in 2014, an oral history project that collected the life stories of hundreds of disabled people nationwide, many of which have since been archived in the Library of Congress.
The project was initially supposed to run for one year, tied to the 25th anniversary of the Americans with Disabilities Act passed in 1990. But it proved a massive success and continued to expand over the years, amplifying oral histories through podcasts, videos and other storytelling formats.
At the time of her death, Wong was working on the third installment of a trilogy of books that weaved together oral histories collected as part of the Disability Visibility Project. Those books include “Disability Visibility: First-Person Stories from the Twenty-First Century,” released in 2020, and “Disability Intimacy: Essays on Love, Care, and Desire,” published in 2024.
Wong graduated with a master’s degree in medical sociology from the University of California, San Francisco, where she worked for more than a decade as a staff research associate.
In 2013, then-President Barack Obama appointed her to the National Council on Disability, an independent agency that advises the president, congress and other federal agencies, bringing her national prominence.
‘Resisting with joy’
In addition to her books, Wong was a frequent contributor to Teen Vogue and other outlets. In her opinion columns, she spoke out against issues facing disabled Americans, such as affordability and a lack of representation in Hollywood.
In 2022, she suffered a series of medical crises and began communicating through a speech-to-text app.
In 2024, she was awarded a fellowship from the MacArthur Foundation, often referred to as a “genius grant.” The same year, she voiced a character loosely based on her on the Netflix show “Human Resources” and moved into her own apartment after decades of living with her parents.
She lived with two cats, Bert and Ernie, and hosted friends for dinner parties.
“I moved into my first apartment last year and have been loving the freedom I have now,” she told The Guardian in an interview published in January. “[In 2024] I turned 50, which is wild because I never thought I would reach this age. I’m astounded that my body lasted this long and I am thankful to still be around.”
She added, “I insist on resisting with joy and finding pleasure where I can such as with my friends and two cats, Bert and Ernie. Yes, life is a complete dumpster fire, but I am reminded that I am not alone, that I am in this with many others.”
This article originally appeared on USA TODAY: Alice Wong, prominent disability rights advocate, dies at 51
