The death of Alice Wong, which occurred at the age of 51 in a San Francisco hospital due to an infection, marks the loss of one of the most influential figures of contemporary activism for the rights of disabled people. Born with spinal muscular atrophy, Wong transformed her personal experience and the discrimination she suffered into a political and cultural commitment that had international resonance.
Described by friend Sandy Ho as a “luminary of the movement for justice for people with disabilities“, he has always supported the need to guarantee autonomy and freedom to the most marginalized people, in particular to those who belong to the LGBTQ+ communities or come from migrant families. A great cat lover, he leaves behind two cats: Bert and Ernie.
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A testimony that becomes activism
Daughter of immigrants from Hong Kong, Wong described her life as a journey of identity discovery and as a denunciation of the shortcomings of the US systems towards disabled, queer and immigrants. He used an electric wheelchair, an assisted breathing device and defined himself with irony and pride as a “disabled cyborg”, exploiting technology not as a limit but as an ally.
His testimonies, entrusted to books, online publications and public interventions, focused on the experience of those who live with disability every day, showing how much the social context can amplify or reduce individual fragilities.
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The Disability Visibility Project and the cultural impact
Among Wong’s most important contributions is the Disability Visibility Project, an initiative created to collect and enhance the stories of disabled people, even those no longer alive. The project gave voice to often ignored experiences, transforming itself into an essential cultural platform for understanding human diversity.
Wong has made innovative use of social media, in particular X, where he created the first talk show dedicated to disability, a format designed to break down communication barriers and reach communities that would otherwise have remained isolated.
His work has opened spaces for discussion on social justice, accessibility and healthcare policies, offering tools for imagining a more equitable society. But what he leaves us with is not only his projects, but also his ability to change the way disability is perceived. His story has inspired many people to tell and tell their stories, breaking a taboo that is still too often present.
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