Alice Wong was an American disability activist, writer, and editor. She founded the Disability Visibility Project, which gathered and amplified the stories of disabled people across the United States. She was born on 27 March 1974 in Indianapolis, Indiana. Her parents had immigrated from Hong Kong. Alice was their eldest daughter. She had a genetic neuromuscular condition from childhood. Over her life, her muscles grew weaker. She used a powered wheelchair and, in her later years, a device to help her breathe. She described herself sometimes as a 'cyborg', reclaiming the machines that kept her alive as part of her identity rather than a sad necessity. She studied English and sociology at Indiana University and later earned a master's in medical sociology from the University of California, San Francisco. She lived in San Francisco for most of her adult life. She worked at UCSF as a research associate for over ten years, studying health care for disabled people. In 2013, President Obama appointed her to the National Council on Disability, a federal body that advises the US government. In 2015, she took part in a White House ceremony for the 25th anniversary of the Americans with Disabilities Act. She attended through a telepresence robot, one of the first public figures to do so. Obama waved at her robot on camera. In 2014 she founded the Disability Visibility Project with StoryCorps, a non-profit oral history group. Over the following decade she built a huge body of work: anthologies of disabled writers, podcasts, campaigns, and a memoir called Year of the Tiger (2022). In 2024, the MacArthur Foundation named her one of their fellows, an award often called a 'genius grant'. She died in a San Francisco hospital from an infection on 14 November 2025, aged 51.
Alice Wong matters for three reasons. First, she built a space where disabled people could tell their own stories. For much of history, stories about disabled people were told by others. Non-disabled writers described disabled lives as tragic or inspiring, often getting the reality wrong. Wong's Disability Visibility Project did something different. It put microphones, keyboards, and publishing platforms in disabled hands. Hundreds of disabled people recorded their own oral histories, wrote their own essays, and ran their own campaigns through her networks. The result was not one story but many. Her anthologies and podcasts showed the full range of disabled life: Asian disabled life, Black disabled life, queer disabled life, poor disabled life, and many more.
Second, she made clear that disability connects to every other justice issue. Many activists treat disability as a separate topic. Wong insisted it cuts across all the others. The Covid-19 pandemic, which started in 2020, proved her point. Disabled people died at much higher rates. Public health policies often treated them as acceptable losses. Wong refused this. She pushed back in public writing and in direct political action. In 2023, she co-founded Crips for eSims for Gaza, which raised over three million dollars to keep Palestinians in Gaza connected to the internet during war. A disability activist working on Gaza might seem surprising. For Wong, it was obvious. Any group treated as disposable was her concern.
Third, she lived openly with serious illness and kept working through it. Her body got weaker through the years. She had several close brushes with death. She kept writing and organising. Her final message to her community, written before her death and released afterwards, called herself their 'ancestor' and promised that 'disabled oracles' would light the way forward. She showed that a life shaped by serious illness was not a lesser life. It could be a rich, demanding, beautiful life. For her communities, her death was a huge loss. The work she built keeps going.
For a first introduction, Wong's memoir Year of the Tiger: An Activist's Life (2022) is funny, sharp, and accessible. Her anthology Disability Visibility: First-Person Stories from the Twenty-First Century (2020) gives many entry points through short essays by different disabled writers. A young adult version, Disability Visibility: 17 First-Person Stories for Today (2021), is shorter and suitable for younger readers. The MacArthur Foundation video profile from 2024 is a clear short introduction.
For deeper reading, her second anthology, Disability Intimacy: Essays on Love, Care, and Desire (2024), extends the work into new areas. Her 2018 collection Resistance and Hope: Essays by Disabled People is freely available online. The Disability Visibility Project podcast archive includes over 100 conversations. For the wider disability justice movement she worked within, Leah Lakshmi Piepzna-Samarasinha's Care Work is an important companion.
Alice Wong's activism was mainly about physical accessibility, like ramps and wider doors.
Access matters, but it was a small part of her focus. Wong worked on storytelling, cultural visibility, policy, coalition-building, and disability justice across many fields. She edited anthologies, ran a podcast, built online communities, advised the White House, and raised millions for phone access in Gaza. The older disability rights movement often focused on legal access. The disability justice movement Wong helped lead is broader. It asks who gets to be seen, whose stories count, and how disability connects to every other social issue.
Wong's work was inspiring to non-disabled people because of what she overcame.
She rejected this framing consistently. Treating a disabled person's life as inspiring because of what they 'overcome' usually reduces the person to a lesson for non-disabled readers. Wong did not want to be inspirational. She wanted to be seen as a full person, an editor, a writer, a political actor, a friend, a columnist, a cat owner. Her work was for disabled communities first. It reached non-disabled readers too, but not as 'inspiration'. The inspiration framing is one of the things disability activists have long pushed back on. Reading Wong as inspirational content misses her own clear objections to this label.
The Disability Visibility Project was Alice Wong speaking for disabled people.
It was the opposite. The Project existed so that many disabled people could speak for themselves. Wong built and curated the space. She did not put herself at the centre of every story. Her anthologies collect dozens of other voices. Her podcast interviews many guests. Her oral history work records thousands of other lives. Wong was clear about this. She did not want a 'super-crip' pedestal. She wanted a chorus. Reading her as the voice of disability misses the whole design of her work. She was a platform-builder, not a single spokesperson.
Because Wong died young, her life was tragic.
She died at 51, earlier than most in the United States. But she lived fully. She built a major movement. She edited books that changed publishing. She received major awards. She had deep friendships. She mentored many people. Her final letter refused the tragic framing explicitly. Reading her life as 'tragic because short' falls into exactly the pattern she spent her career pushing against. A life can be rich without being long. Wong's life was rich. Her death is a loss. The two things can both be true without making her life a tragedy.
For research-level engagement, Wong's Teen Vogue columns and her pieces for platforms like The New York Times archive her sharpest political writing. The Crips for eSims for Gaza project records (available online) document her later coalition-building. For scholarly engagement with disability justice, Alison Kafer's Feminist, Queer, Crip is a major academic study. For Wong's death and legacy, the Laura Flanders Show conversations with Sandy Ho and other collaborators in March 2026 give a first long reflection from her closest colleagues.
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