In Honor of Alice Wong

Last week, Alice Wong, a leading advocate for disability rights and inclusion, died. As the founder of the Disability Visibility Project, she reshaped national conversations about access and equity, leaving a lasting impact on how many—including myself—understand disability and justice. Although I never met her, her work made a personal impact on me and on many others who learned from her determination and example.

Her national work began in 2013 when she was appointed to the National Council on Disability. From that point forward she became a consistent presence in conversations about public policy. She emphasized that access is a fundamental requirement for participation and that people with disabilities deserve to be included from the start, not added later.

Alice used writing, organizing, and community building to create space for people with disabilities to share their own experiences. The Disability Visibility Project became a central part of that effort. Through this work she encouraged public officials to address disability policy directly and she reminded the broader public that everyday choices, including the design of common items, can either expand or restrict independence. She also advocated for equitable vaccine access during the early stages of COVID, drawing attention to the needs of people at highest risk.

In 2024 she received a MacArthur Fellowship in recognition of her contributions. The acknowledgment reflected the reach of her work and the depth of her commitment to advancing disability rights.

Alice grew up in Indianapolis as the daughter of parents who had immigrated from Hong Kong. She lived with a form of muscular atrophy that gradually limited her mobility and strength. She often spoke about how early experiences with discrimination shaped her understanding of justice and informed her future advocacy.

She studied sociology, completed graduate work at UC San Francisco, and spent part of her career supporting individuals who wanted to live independently. Her writing later explained how policy decisions affect people with disabilities. She addressed the realities of Medicaid, long term care, and the constant effort required to secure reliable support. Her work helped many people understand how the structure of public programs shapes daily life.

When the political environment changed in 2024 she expressed concern about potential threats to public health programs. She understood that these systems play a central role in allowing people with disabilities to remain in their homes, maintain autonomy, and participate fully in their communities.

Alice Wong will be remembered as an advocate, a writer, and a leader who helped this country see disability more clearly. She honored the experiences of people with disabilities by insisting that they be included, respected, and heard. Her work leaves a strong foundation for those who will continue the effort to build environments where access is standard, inclusion is intentional, and every person has the opportunity to participate fully.

May her memory continue to inform that work.

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