San Francisco disability justice advocate Alice Wong, who died Nov. 14 at age 51, was a key figure linking the Bay Area’s influential ’60s disability rights movement to the current generation of activists, according to her peers.
A longtime friend of Wong’s, Victor Pineda, executive director at the Center for Independent Living in Berkeley, was her contemporary in what he describes as the second generation of the disability rights movement. Wong was a mentee of pioneering independent living advocate Judy Heumann, who was an early leader at Pineda’s organization, established in 1972 as the first independent living center in the country, organized and operated by persons with disabilities.
Pineda said Wong, who often employed new technology in her work, acted as a bridge connecting the lessons from the first generation she’d learned from Heumann to the incoming third and fourth generations of the movement, largely through social media. “She knew she was going to be passing the baton,” he said.
Named a MacArthur Foundation Fellow last year, Wong ran the Disability Visibilty Project, an online community she started in 2014 that focused on making, sharing and amplifying disability media and culture. The community began as an oral history project but also includes a podcast, blog, art, social media and more.
Wong was born with spinal muscular atrophy and grew up in Indiana, one of three sisters born to parents who immigrated to the U.S. from Hong Kong. She attended Indiana University at Indianapolis, then went on to attend graduate school at the University of California San Francisco before working there as a researcher and advocating for greater accessibility and accommodations for people with disabilities.
She also edited two essay collections, “Disability Visibility: First Person Stories From the Twenty-First Century” (2020) and “Disability Intimacy: Essays on Love, Care, and Desire,” (2024), and wrote a memoir, “Year of the Tiger: An Activist’s Life” (2022).
Writer, poet and activist Leroy F. Moore Jr. – who founded the Krip-Hop Institute, an association of artists with disabilities, in Berkeley in 2000 — remembers first meeting Wong in the early 2000s, when he organized an event with the filmmakers behind a documentary about young people in nursing homes.
Moore recalled Wong as someone dedicated to “getting her voice out there in any way possible,” and pioneering new ways to tackle hurdles people with disabilities face — particularly through technology.
“She had an activist spirit,” he said.
For instance, President Obama appointed her to the National Council on Disability in 2013, and she served on it until 2015. She was considered to be the first person to visit the White House via a “telepresence” robot during a celebration of the 25th anniversary of the Americans with Disabilities Act, according to her website.
For Moore personally, Wong also led by example in pursuing graduate work as someone with a disability, and her writing and practical advice has been helpful in his own academic journey, he said. He’s now a graduate student at UCLA pursuing a Ph.D. in anthropology. Wong was a leader in adopting the internet for conducting research, including the use of video calls for field interviews, he said.
Another significant contribution by Wong to the movement — one that’s bigger, yet quieter, than her groundbreaking first essay collection — is her second essay collection all about disability, love and intimacy, Pineda said.
“She understood the transformative power of love,” he added.
“Her work consistently pushed boundaries, elevating the voices of disabled people and celebrating the richness of our culture,” Pineda said in a written statement. “Her vision of ‘disabled abundance’ wasn’t just a phrase — it was a call to action, a reminder that our community deserves more than survival, but joy, equity, and empowerment. Through her writing, her activism, and her collaborative spirit, she left us a legacy of hope and determination.
“For those of us fortunate enough to have known Alice, her generosity, brilliance, and humor will always be remembered,” he continued. “She made everyone around her feel seen and valued, and her ability to connect people and ideas was unparalleled. Her words, whether shared in intimate conversations or on public platforms, carried the power to challenge, inspire, and transform.”
Wong herself also shared some parting words, distributed posthumously by her friend Sandy Ho, according to an e-newsletter from the San Francisco Disability Cultural Center.
“I did not ever imagine I would live to this age and end up a writer, editor, activist, and more,” she wrote. “As a kid riddled with insecurity and internalized ableism, I could not see a path forward. 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.
“We need more stories about us and our culture,” she wrote, “Don’t let the bastards grind you down. I love you all.”