Alice Wong is perhaps the most well-known disabled writer and disability rights activist. Unfortunately, she died on Friday at the age of 51 after fighting complications from that infection at a hospital in San Francisco. Illustration by Jey Perie Wong was born with muscular dystrophy to immigrant parents from Hong Kong. She spent her life advocating for the disability community, fighting fiercely to uplift their voices and tell their stories.
Wong’s impact went well beyond her individual narrative. In 2014, she founded the Disability Visibility Project, helping to deepen and diversify the movement for disability rights and inclusion. This new initiative began as an oral history project. Its purpose was to archive and disseminate the stories of disabled people from all over the United States. Her activism built a stage for those left out of the mainstream. This freedom gave them more agency to tell their stories over allowing someone to speak on their behalf.
Last year, Wong released her memoir, Year of the Tiger. In it, she passionately tells the story of her life growing up in Indiana and her experiences with discrimination and bullying. Her work highlighted the systemic discrimination and health disparities that disabled people face. She emphasized the importance of community support over institutionalization.
On her literary work Wong is the editor and author of multiple books, including Disability Visibility and Disability Intimacy. Her books beautifully document her personal transformation. They expose the higher-order problems underlying the entire disabled community.
Thanks in part to this innovative and disruptive activism Wong was awarded the prestigious MacArthur “genius grant” in 2024. This award is a testament to her relentless efforts to empower and uplift the lives of all people with disabilities. Her advocacy centered around giving everybody control over their lives and choices, with a special emphasis on those who came from marginalized communities.
Alice Wong wants people with disabilities to tell their own stories. Her legacy as one of the most impactful environmental justice activists is formed by this unshakeable belief. She was a fierce advocate for disabled voices to be included and heard firsthand. “They should not talk on our behalf,” she demanded, “and nobody should talk on our behalf.” This inherent belief in the power of personal expression fueled her activism and inspired countless others to take pride in their identities and assert their rights.
Always on the move, she worked relentlessly for common sense reforms. Her stated objective was to move as many people as possible from institutions into community-based settings of care. Wong expressed this vision beautifully when she stated that our work was to “get people out of institutions and staying in the community.” Her tireless advocacy aimed at making our world accessible enough for everyone, no matter their disabilities, to thrive in freedom and independence.
Wong’s reflections about the ups and downs of activism showcase her steel spirit that won’t be broken. Activism is not a bed of roses, it’s a rollercoaster ride. On days when anger and weariness threaten my resolve to fight against injustice, I look to my own memories for inspiration. She understood that anger could be a great motivator. This ideology inspired her core belief that people in power always seek to sap the strength of the most dispossessed communities.
Her commitment was therefore not merely theoretical, but rather rooted in the lived experiences that formed her worldview. As Wong himself said, friendships and great teachers made all the difference in his life. Because of them—and other friends and family—they kept him going during the dark times and encouraged him until he got to a point where he felt comfortable with himself. This experience only furthered her hunger for disabled characters, cultures, and stories to be represented in the media.