Alice Wong, ‘luminary’ writer and disability rights activist, dies aged 51

Alice Wong, a writer and disability rights activist who was born with muscular dystrophy and whose independence and writing inspired others, has died. She was 51. Wong died Friday at a hospital in San Francisco due to an infection, said Sandy Ho, a close friend who has been in touch with Wong’s family. Ho called her friend a “luminary of the disability justice movement” who wanted to see a world where people with disabilities, especially those of marginalized demographics who were people of color, LGBTQ+ people and immigrants, could live freely and have full autonomy over their lives and decisions. The daughter of Hong Kong immigrants, Wong writes about her own story – about growing up with a neuromuscular disease, coming into herself and her activism – and about how US policies and systems fail disabled people, queer people, immigrants and people of color. She used a powered wheelchair and an assistive breathing device and described herself as a “disabled cyborg”. In her 2022 memoir, Year of the Tiger, Wong tells of the discrimination and bullying she faced growing up in Indiana, which sparked her unwavering commitment to dismantling systemic ableism. Wong founded the Disability Visibility Project in 2014, initially as an oral history project designed to collect the stories of disabled people. She has shared these histories in two books, Disability Visibility and Disability Intimacy. In a January interview with the Guardian, Wong recalled one of the moments in her teen years when she had to advocate for herself against the suggestions of a specialist suggesting an invasive procedure. “I knew my body and what I wanted,” Wong said. In the end, her pulmonologist agreed to take an incremental approach. “My activism typically focuses on systems but this one vulnerable moment planted the seeds of advocacy for myself as a patient, and for others. I am really proud of the teenage Alice, who knew herself even though she didn’t know a lot,” she said. On social media, Ho shared a statement Wong wrote before her death in which she said she never imagined her trajectory would turn out as it did, to writing, activism and more. “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,” Wong wrote. She advocated “getting people out of institutions and remaining in the community”, Ho said. Wong’s works – including books she authored and edited and the Disability Visibility Project blog she started – shared her writing and voices and the perspectives of others, Ho said. Wong was a funny person and a hilarious writer, not an easy skill, Ho said. Her memoir is filled with humorous snippets but also humanizes disability, Ho said. The legacy of Wong’s work is that people with disabilities “speak for themselves and that nobody speaks for us”, Ho said. Wong was awarded the MacArthur “genius grant” in 2024 – a recognition of her activism and efforts to amplify the work and stories of other disabled people. Wong said she often felt despondent and overwhelmed by the political situation. “But then I remind myself this is by design, that those in power want to erode our resolve and [for us to] give up,” she said. She continued: “‘Doing’ activism is neither linear or smooth and in times of frustration or exhaustion I tap into my memories of injustice. I remind myself of why I am doing what I am doing and this sustains me. Anger transforms into a battery charger that gives me a boost when it’s sorely needed.” Maanvi Singh contributed reporting