Wong was best known as the founder of the Disability Visibility Project (DVP). The group highlights disabled people and disability culture through storytelling projects, social media and other channels.
DVP launched in 2014 with an oral history project encouraging those with disabilities to share their stories in partnership with StoryCorps, a nonprofit that collects, preserves and shares the personal stories of everyday Americans. StoryCorps narratives are regularly broadcast on NPR.
From immigrant to community leader
Wong was born to immigrant parents from Hong Kong in Indianapolis, Ind. suburbs in 1974. She was diagnosed at birth with muscular dystrophy, a progressive neuromuscular disease that slowly weakened her muscles and doctors told her parents that she wouldn’t live to the age of 18.
“I struggled a lot as a child,” Wong said in a segment recorded earlier this year for NPR member station KQED. “I felt so alone and angry. I was mainstreamed in public schools and was usually the only disabled student in a classroom and or one of a handful of Asian American students.”
She continued, “I had to grow up very fast advocating for myself with adults such as teachers and doctors, even though I didn’t have the language for what I was experiencing.”
Despite her many challenges, Wong earned a bachelor’s degree from Indiana University–Purdue University Indianapolis followed by a master’s degree from the University of California, San Francisco. After graduating, she worked at her San Francisco alma mater as a staff research associate for more than a decade. Meanwhile, her career in disability advocacy flourished.
Following a series of medical emergencies in 2022, Wong began communicating through digital text-to-speech technology. In her 2022 memoir Year of the Tiger: An Activist’s Life, the author describes herself as a “disabled cyborg” — a person “tethered to equipment, technology and electricity to keep alive.”
