Remembering Alice Wong: A Voice That Changed Disability Justice Forever

Alice Wong, a trailblazing activist and writer who fought for disability rights and justice, died on November 14, 2025. She was 51 years old.

Alice was a “hysterical friend, writer, activist and disability justice luminary whose influence was outsized,” Sandy Ho, Alice’s friend and fellow activist, told NPR.

“She will be remembered as being a fierce luminary in disability justice, a brilliant writer, editor and community organizer,” wrote Yomi Young, an Oakland-based social justice organizer, on Alice’s GoFundMe.

Alice was born in Indianapolis, Ind., the daughter of parents who immigrated from Hong Kong. Alice wrote about growing up with muscular dystrophy, a disease that causes progressive neuromuscular weakness and degeneration. 

“I struggled a lot as a child,” Alice told NPR member station KQED in 2025. “I felt so alone and angry. I was mainstreamed in public schools and was usually the only disabled student in a classroom and/or one of a handful of Asian American students.”

Alice wrote about the discrimination she endured in her 2022 memoir “Year of the Tiger.” Her experiences growing up inspired her work toward dismantling systemic ableism.

Alice went on to earn degrees in English and sociology from Indiana University and a master’s in medical sociology from the University of California, San Francisco, according to Forbes. For over ten years, she worked as a researcher and advocate at UCSF, where she led accessibility initiatives. 

In 2013, President Barack Obama appointed Alice to a two-year seat on the National Council on Disability. The agency advises Congress and the president on disability policy. 

Alice is perhaps best known for founding the Disability Visibility Project (DVP), an online community that highlights the stories and experiences of people with disabilities. 

“Her media empire, the Disability Visibility Project, left an indelible mark on the cultural landscape of our country,” Ho said.

The project launched in 2014 with an oral history project in collaboration with StoryCorps, a nonprofit that collects, saves and shares the stories of everyday people. The project encouraged people with disabilities to interview one another and share their stories.

Besides publishing oral histories, essays and personal stories from people with disabilities, the Disability Visibility Project expanded to include a podcast, blog, social media and more.

The platform celebrates disability culture and provides resources for education, policy and community building.

In 2016, Alice co-founded #CripTheVote, a nonpartisan online movement that facilitates conversations about disability issues between voters and politicians.

“It was Alice who coined the hashtag. She was also the one who at every stage kept us focused on adhering to the principles of Disability Justice,” Gregg Beratan and Andrew Pulrang wrote in a post commemorating Alice on the Cripthevote Facebook page. 

Alice was a prolific writer. She wrote about the importance of Medicaid in the New York Times. She wrote about the lack of representation for disabled people in Hollywood and living with chronic pain in Teen Vogue. She wrote about her opposition to the ban on plastic drinking straws and the need for mask mandates in hospital settings. 

“Storytelling is a powerful form of resistance,” Wong told NPR in 2025. “It leaves evidence that we were here in a society that devalues, excludes and eliminates us.”

She also edited two books of essays: “Disability Visibility: First-Person Stories from the Twenty-First Century” (2020) and “Disability Intimacy: Essays on Love, Care, and Desire” (2024).

“These stories do not seek to explain the meaning of disability or to inspire or elicit empathy,” Alice wrote in Disability Visibility: First-Person Stories from the Twenty-First Century. “Rather, they show disabled people simply being in our own words, by our own accounts.”

Alice used a powered wheelchair and an assistive breathing device. She loved science fiction and Star Trek and often used sci-fi references to describe her life situation.

“I am a disabled cyborg that has gone through another series of augmentations that extended her life until another system fails,” she told The Guardian in January 2025.

In 2024, Alice won the prestigious MacArthur “Genius” award for “increasing the political and cultural visibility of people with disabilities and catalyzing broader understandings of disability.”

“I did not ever imagine I would live to this age and end up a writer, editor, activist, and more,” Wong wrote in a note published to social media after her death. 

“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.”

Thank you for your contributions to this community, Alice. You will be missed.