Alice Wong, the California disability rights activist who employed wit, creativity and at times shock to fight for justice, has died. She was 51.
The San Francisco-based radical, a self-styled “cyborg oracle,” rose to national prominence in 2013, when President Obama appointed her to the National Council on Disability. Wong attended a 2015 White House reception in virtual form as a “telepresence robot.”
“One of the things that really gives me joy is the fact that there are so many amazing, brilliant, creative disabled people out there,” Wong told comedian W. Kamau Bell on the City Arts & Lectures podcast in 2020. “But part of my rage — and it’s a very real rage — is that most people don’t really know about them.”
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A prolific advocate for disability justice, Wong authored a memoir, penned numerous essays, edited two anthologies, hosted a podcast and founded the Disability Visibility Project, a platform for writers and artists with disabilities. Her nonpartisan #CriptheVote hashtag forced national candidates to pay attention, and in 2021 she helped prioritize access to COVID vaccines for thousands of high-risk Californians. Wong even challenged San Francisco’s attempt to ban plastic straws, pointing out that many people with disabilities need them.
In 2024, she was awarded a MacArthur Foundation “genius grant,” for calling attention to the “prejudice disabled people face and to the policies that adversely affect them.”
“Hi everyone, it looks like I ran out of time,” Wong said in a prewritten message released after her death. “I have so many dreams that I wanted to fulfill and plans to create new stories for you … 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. You all, we all, deserve the everything and more in such a hostile, ableist environment.”
“Alice has a plan for everything,” her close friend and collaborator Sandy Ho told The Times in 2022. “She describes herself as a disabled oracle, and that’s a part of it. She foresees the future.”
San Francisco Mayor Daniel Lurie wrote on X that Wong’s “activism and courage inspired countless people across our communities, including here in San Francisco.” He added: “Let us honor her legacy by continuing to build a city where every voice is heard, every space is accessible, and every resident can thrive.”
The American Association of People with Disabilities released a statement about the impact of Wong’s work.
“Alice made the complexity of disabled experiences visible to the world — our joy, rage, and ferocity,” the organization said on X. “She expanded our movement and the minds of millions. We are devastated to lose Alice, and lucky to have been changed by her.”
Wong, born March 27, 1974, grew up in Indianapolis, the daughter of immigrants from Hong Kong. Her father, Henry, was a jeweler; her mother, Bobby (Li) Wong, a social worker. Wong spent most of her adult life in San Francisco.
She was born with a form of muscular atrophy, a rare neuromuscular disorder that limits her movements and strength. She began using a wheelchair in grade school and had come to rely on a BiPap ventilator worn over her nose.
“My cyborg body is tethered to orbiting satellites of objects,” Wong wrote in her 2022 memoir, “Year of the Tiger.” “These bits of hardware, machines, and everyday objects may not live and breathe, but they are a part of me. They simultaneously ground and liberate me. They center me and allow me to make the most of my life.”
In the book, she recounted her childhood experiences with bullying and discrimination and how that fueled her passion for disability rights advocacy.
“I grew up hearing terms such as weakness, congenital, defect, pathology, and abnormal associated with me,” she wrote. “I didn’t realize the way it assaulted my personhood. Those words transformed into sources of power and resistance as I fell into my imagination through reading, writing, and watching a whole lot of television.”
Wong attended Earlham College in Richmond, Ind., but after an episode with respiratory failure, she transferred to Indiana University-Purdue University Indianapolis, which was closer to home, and graduated in 1997 with a degree in English and sociology. She received a master’s degree in medical sociology from UC San Francisco in 2004. She later worked for the university’s Center for Personal Assistance Services, a program that helps people with disabilities live more independently.
She’d return to the storytelling foundation of her youth in how she brought attention to widespread ableism and the privilege of health, fighting to counter narratives that framed people with disabilities as second-class citizens.
“A lot of things remain that I want for me, and there are even more things I want for us,” she wrote in her memoir. “Manifestation requires desire, ambition, sensitivity, and creativity. Each book or story by a disabled person holds a piece of a spell … eventually when enough pieces come together and fit, there will be a collective harmonic conjuring. Ripples of energy propelled by momentum, our truths, undeniable and irresistible, our messages reverberating far and wide with hidden frequencies just for us. By conjuring our power and manifesting infinite dreams together, the world will finally see us as we are.”
Known for her trademark red lipstick, black power chair and gray ventilator, Wong wrote with wit and candor — at once personal, vulnerable and unapologetic. Her messaging, often drawing from her own identity and experience, was featured in publications including Teen Vogue and the New York Times, in the form of essays such as “What I Learned From Having to Crowdfund My Medical Care” and “My Medicaid, My Life.”
When Donald Trump was elected president in 2024, Wong expressed concerns about his vocal contempt for the Affordable Care Act and what it signaled for Americans with disabilities and their access to health care.
“I’m scared like millions of marginalized people who know exactly who Trump is and what he stands for,” she said in an interview with the Guardian in January. “Trump has always been clear about who he is and what his plans are, which includes putting the Affordable Care Act’s Medicaid expansion back on the chopping block, with the very real possibility of millions of Americans losing their health coverage.”
Wong succumbed to infection Friday while at UCSF Hospital. Ho posted the announcement of Wong’s death on her X account. It was relayed as well to her GoFundMe page, which had asked donors to help cover her ongoing daily care costs while decrying the need for such charity as “ableist oppression.”
“The state pays to shut us away in medical institutions, but we must fight like hell to live in the community,” the pinned fundraising request noted.
“She will be remembered as being a fierce luminary in disability justice, a brilliant writer, editor and community organizer,” the post said.
“As we mourn the incomprehensible loss of Alice, we share the words she gifted us with from her memoir, Year of the Tiger:
“The real gift any person can give is a web of connective tissue. If we love fiercely, our ancestors live among and speak to us through these incandescent filaments glowing from the warmth of memories.”
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