Alice Wong, a trailblazing activist, writer, and founder of the Disability Visibility Project, passed away on November 14th at UCSF Hospital. She was 51.
Wong’s life was defined by her relentless fight for visibility, equity, and joy within the disability community. A Chinese-American woman with spinal muscular atrophy, Wong transformed her lived experience into a powerful catalyst for cultural and systemic change, using storytelling as both resistance and revolution.
A Life of Defiance and Connection
Born in 1974 in Indianapolis to parents who immigrated from Hong Kong, Wong grew up as one of the only physically disabled and Asian-American students in her school. Navigating an often isolating landscape, she later wrote about internalized racism and the deep desire to blend in, an impulse she would eventually turn on its head.
In her twenties, Wong stopped striving for invisibility and instead began demanding visibility for her community, on her own terms. After earning degrees in English and sociology from Indiana University and a master’s in medical sociology from the University of California, San Francisco (UCSF), she worked for more than a decade as a researcher and advocate at UCSF. There, she spearheaded accessibility initiatives, from mapping accessible campus routes to integrating disability studies into medical curricula.
Her leadership extended beyond academia. In 2013, she was appointed by President Barack Obama to the National Council on Disability, where she advised the federal government on disability policy. But it was in 2014 that Wong cemented her legacy with the founding of the Disability Visibility Project (DVP), a digital community that would redefine disability representation in the 21st century.
Making Disability Visible
The Disability Visibility Project began as a partnership with StoryCorps to record oral histories from Disabled people, ensuring their stories were preserved without the distortion of non-disabled interpretation. Under Wong’s leadership, the DVP evolved into a thriving ecosystem of podcasts, essays, art, and activism, a home for Disabled voices across race, gender, and class. Wong’s guiding principle was transformative, Disabled people should tell their own stories.
She edited two acclaimed anthologies, Disability Visibility: First-Person Stories from the Twenty-First Century (2020) and Disability Intimacy: Essays on Love, Care, and Desire (2024), that gave readers an unfiltered look into the complexities of Disabled life: from love and sex to caregiving, policy, and pride.
Her memoir, Year of the Tiger: An Activist’s Life (2022), blended humor, vulnerability, and radical honesty, offering a deeply personal window into what it means to live, and lead, with a body constantly negotiating the world’s ableism. “The real gift any person can give,” she wrote, “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.”
Hashtag Activism, Real-World Change
Wong understood that storytelling was political, and she wielded social media as an organizing tool, helping to launch #CripTheVote, a nonpartisan campaign to increase political participation among Disabled voters, and Access is Love, a campaign reframing accessibility as an act of care. Her digital activism sparked national conversations on mask mandates, plastic straw bans, and the exclusion of high-risk people during the pandemic.
Even as her health declined, Wong continued to lead with humor and precision, using her Twitter feed as both a megaphone and a classroom. Her community, rooted in joy, mutual aid, and care, saw disability as culture, expertise, and creative force.
A Lasting Legacy
Alice Wong’s work changed how many talk about disability. Through her writing, teaching, and organizing, she reframed access as love, advocacy as art, and interdependence as power. Her influence stretched across disciplines, from media and publishing to politics and academia, bringing thousands of Disabled people into conversation with one another and into the broader public consciousness.
Her family described her best, “She will be remembered as being a fierce luminary in disability justice, a brilliant writer, editor, and community organizer.”
Wong is survived by her parents, Henry and Bobby; her sisters, Emily and Grace; her beloved cats, Bert and Ernie; and a global community of Disabled creators and activists continuing her work.
Those wishing to honor Alice’s legacy can contribute to her GoFundMe, where proceeds will support the continuation of her life’s mission through the Disability Visibility Project.
As the world mourns her passing, we return to her own words, a reflection of the community she built and the future she imagined, “I want to create a world that is reflective of all of us. This is my life’s work.”
What We Can Learn from Alice
Alice Wong taught us that representation is a form of survival and she reminded us that storytelling is a tool for liberation. Her work challenged the world to look beyond tokenism and toward the full humanity of disabled people, complex, joyful, political, and proud.
From Alice, we learn that access is about dignity, care, and belonging. Accessibility, in her view, was an act of love and solidarity, a way to say, You matter enough for me to think of you.
She showed us that activism can live anywhere, in policy rooms and protest lines, yes, but also in tweets, essays, and the quiet work of community building. Through her projects, she made clear that interdependence is strength, that mutual care is revolutionary, and that vulnerability can coexist with power.
Alice modeled how to lead without leaving anyone behind. Her legacy asks all of us, especially those with privilege and platforms, to amplify Disabled voices, redistribute resources, and move beyond performative inclusion toward real, systemic change.
Her brilliance lay in what she built and in how she built it, collaboratively, creatively, and unapologetically.
To honor Alice is to continue her work, to make disability visible through compassion and equity. In Alice’s own words and the community she cultivated, we find a blueprint for a more accessible and loving world, one where everyone, Disabled or not, has the space to be visible, valued, and free.