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Alice Wong was a writer, an editor, and one of the country’s most influential disability-rights activists. She died in San Francisco on November 14th at the age of 51.
Wong devoted her life to reshaping how disability is seen and understood. In 2014, she founded the Disability Visibility Project, a digital platform where disabled people could share essays, oral histories, and podcasts, telling their stories in their own words. Wong's impact reached far beyond the disability rights community. In 2013, President Obama appointed her to the National Council on Disability, and in 2024 she received a MacArthur “Genius” Award.
Although she spent most of her adult life on the West Coast, Wong grew up in Indiana, and her early experiences here formed the emotional and political foundation of her activism. Wong was born in Indianapolis in 1974, the oldest of three daughters in a family that had immigrated from Hong Kong. At age two, she was diagnosed with spinal muscular atrophy, and doctors warned her parents she might not live past 18.
Wong wrote and spoke openly about the challenges of growing up disabled in Indiana, especially at Carmel High School. In her 2022 memoir, Year of the Tiger: An Activist's Life, she called the school a “hell hole,” and in a 2020 interview on WNYC’s Death, Sex & Money podcast, she talked about the ableism she experienced there, from physical inaccessibility to exclusion and discrimination. “I just was so eager to leave that high school,” Wong shared. She said those moments created a deep sense of outrage that became the engine of her activism. “I got in touch with my rage at an early age. It serves me well. I will just say that.”
Yet Carmel was also where her path as a writer and advocate began. Her poetry appeared in the school’s literary magazine, The Prerogative, marking her first published work, and in 1991 she spoke at a Carmel Clay school board meeting calling for better disability access at the high school — one of her first public acts of activism.
Wong later attended Earlham College and IUPUI. She left Indiana in 1997 to pursue graduate studies at the University of California, San Francisco, in the Bay Area. Her voice, leadership, and activism blossomed there.
In a video created for the MacArthur Foundation, Wong talked about the mission behind her work. By then, she was using a text-to-speech app, having lost her natural voice after a medical crisis in 2022. “As a writer and editor, I address the lack of disabled voices in publishing, journalism, and popular culture, and illustrate the systemic ableism that renders disabled people as disposable burdens and objects of pity. Storytelling is a powerful form of resistance. It leaves evidence that we were here in a society that devalues, excludes, and eliminates us,” Wong said.
She also spoke about the fragility of life. “Thinking of death and fragility often has truly instructed me on how I use my time. I feel such urgency to make the most out of life and savor every single moment by telling my story and amplifying the stories of others. Cultural change can happen, and collectively we can build a world centered on justice, access, and care.”
In her final public message, shared on social media after her death, Wong urged her community to keep creating. “Our wisdom is incisive and unflinching,” she wrote, adding, “I’m honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don’t let the bastards grind you down.”
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