This article was first published by The 19th.
Alice Wong, a visionary leader in disability justice and culture, died from an infection on November 14 in San Francisco. She was 51.
In a message shared on social media by friend and fellow activist Sandy Ho, Wong wrote:
“Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more.”
Wong is best known for her work on the Disability Visibility Project, which she founded to magnify disabled culture, particularly the work and lives of those who are multiply marginalized: Disabled women of color, LGBTQ+ people and immigrants.
Wong was born on March 27, 1974 in Indianapolis. Her parents, Henry and Bobby Wong, had immigrated to the United States from Hong Kong two years earlier. She was diagnosed at birth with spinal muscular atrophy, a progressive neuromuscular disease that slowly weakened her muscles, including the muscles in her lungs that she needed to breathe. Doctors told her parents that she wouldn’t live past 18.
As her disability progressed, Wong acquired more mechanical support. She conceptualized herself as a “disabled cyborg” and the advancement of her condition as “cyborg turning points” in her 2022 memoir, “The Year of the Tiger.”
“I am a disabled cyborg that has gone through another series of augmentations that extended her life until another system fails,” she told The Guardian earlier this year.
One of Wong’s more recent cyborg components was the use of text-to-speech software, after she lost the ability to speak. She became an advocate for people who use augmentative and alternative communication through her work on the advisory council for CommunicationFirst, a nonprofit dedicated to protecting and advancing the rights of nonspeakers, as well as others who cannot rely on speech alone to be understood.
In 2013, then-President Barack Obama appointed Wong to the National Council on Disability, an independent agency that advises the federal government and Congress on disability policy. In 2015, she became the first person to visit the White House by robot telepresence, as she was not able to travel, to celebrate the 25th anniversary of the Americans with Disabilities Act.
