Remembering Disability Justice Warrior Alice Wong

Alice Wong, founder of the Disability Visibility Project, MacArthur Genius, liberationist, storyteller, writer, and friend of CGS, died on November 14. Alice shone a bright light on pervasive ableism in our society. She articulated how people with disabilities are limited not by an inability to do things but by systemic segregation and discrimination, the de-prioritization of accessibility, and the devaluation of their lives.

We at CGS learned so much from Alice about disability justice, which goes beyond rights and inclusion to address the full constellation of oppressions affecting people with disabilities.

Alice was a vocal opponent of heritable gene editing, a technology that–if allowed—would make changes to DNA that would be passed down to future generations. CGS’ collaborations with Alice began in 2017 with A conversation on disability justice and human genetic engineering, a webinar co-sponsored by CGS, the Disability Visibility Project, and partner organizations Disability Rights Education and Defense Fund and Paul K. Longmore Institute on Disability.

In 2023, Alice contributed to CGS’ campaign Why oppose heritable genome editing, saying, “It upholds white supremacy and ableism. It will wipe out and devalue people like me.” Alice always spoke about ableism in the larger context of elite political power and privilege. She made clear how it intersected with other forms of oppression and showed that we need to collectively dismantle the systems and structures that are detrimental to all.

Alice explicitly challenged the eugenic implications of heritable genome editing and eloquently articulated the right of disabled people to live and thrive. In her talk Resisting Ableism: Disabled People and Human Gene Editing for Stanford’s Medicine X, Alice said,

“I look forward to the day when I don’t need to make the case that people with disabled lives have value—I’d rather drink coffee and watch cat videos. But we’re not at that point yet, as you can tell with the example of human gene editing. I believe there must be other ways to alleviate pain and improve the living conditions of disabled people without editing us out of existence. Until then, I’ll keep talking about ableism and how, for me, disability is not terribly negative, sad, or a tragic experience.”

Katie Hasson, CGS Executive Director, said “All of us at CGS are saddened by the loss of Alice Wong, who was such a fierce fighter for disability justice across so many domains. Alice brought those same sharp insights, passionate arguments, humor, and style to her engagement on issues of heritable genome editing, raising awareness of its importance as a disability justice issue. Alice was about to embark on a new project with CGS as a member of the Confronting Eugenics core network, and her absence will be sorely felt.”

CGS Advisory Board member Jessica Lehman expressed this remembrance:

“Alice had a strong and committed moral compass that she shared with all of us. She envisioned a world in which disabled people, people of color, queer and trans people, all of us, are valued and appreciated. She used her podcast, essays, anthologies, social media, and collaborative projects to take on ableism in all its forms, with a focus on attendant support, health care, and the right for disabled people to live in community.

Lisa Ikemoto, CGS Advisory Board member, remembers Alice as “kind, persistent, fierce and funny. While I only met her a couple of times, I learned so much from her. It’s been wonderful to see how widely she has been recognized. She made such a positive impact on so many people.”

Alice used language in ways that expanded understanding of the lived experiences of people with disabilities and centered relationships and allyship, editing the anthology Disability Intimacy, co-founding #CripTheVote, and co-creating the campaign Access is Love.  She knew the importance of love and joy, and she lived it. In her August 2025 remarks at the celebration of life for comrade Patty Berne—a beloved staff person of CGS in the mid-2000s—Alice said, “I have to believe that love will win and that caring for one another is the way forward.” Jessica Lehman so eloquently states how Alice’s love for individuals reverberated powerfully: “Alice loved disabled people fiercely. That love is the most powerful antidote to eugenics.”

I feel lucky that I had a chance to get to know Alice through CGS. She was a courageous fighter, had an irreverent sense of humor, and held a huge imagination for what’s possible, including the depth of connection and community required to build it. When I saw her at the July 2025 grand opening of the San Francisco Disability Cultural Center, we were talking about tech titans’ newest push to create designer babies. She cursed heritable genome editing. That chutzpah and spot-on clarity are what we need to carry forward to keep up the fight against eugenics—and fight for the world we want to see, where everyone knows our world is richer for having people of all abilities in it.

A statement by Alice’s family included “We would like to invite her friends, community, and her many fans to contribute to Alice’s GoFundMe to continue the legacy of her work.” You can donate here.