SF-based disability justice advocate and 2024 MacArthur “Genius” Award-winner Alice Wong died Friday at 51. Wong founded the Disability Visibility Project, served on the Obama-era National Council on Disability, and wrote the best-selling memoir, Year of the Tiger: An Activist’s Life.

As the Chronicle reports, Alice Wong, a prolific writer, advocate, and beacon of light in the social justice world, died Friday of an infection at UCSF hospital. Wong was born with muscular dystrophy and used a powered wheelchair, as well as devices to help her breath, eat, and communicate.

When Wong was born, doctors said she likely wouldn’t live beyond the age of 18, which she said limited her early worldview in ways that ultimately pushed her toward disability justice work. She speaks about this in the below Bloomberg interview (hat tip, 48 Hills).

“Doctors told my parents I wouldn’t live past 18, so I grew up never imagining what grownup old ass Alice would look like, and this is why visibility, being able to tell our stories and controlling our own narratives, is why I do what I do,” Wong said during a 2024 summit, per the Chronicle.

As NPR reports, Wong grew up in the Midwest with immigrant parents from Hong Kong and attended public schools where she was typically the only disabled or Asian American student — or both, which forced her to learn to advocate for herself very early in life.

She moved to San Francisco in 1997 to attend school at the University of California San Francisco where she received her master’s degree in medical sociology, per the Chronicle. She later worked as a staff research associate at UCSF for ten years — while also advocating for disability justice.

Per the Chronicle, when Wong first attended UCSF, the school had to build a living space for her in a professor’s garage, as there was no accessible housing at the university at the time. Wong wrote in her 2022 memoir, Year of the Tiger: An Activist’s Life, she struggled to attend classes due to the school’s lack of accessibility. She was forced to take a break before eventually graduating in 2004. The Chronicle notes that Wong later advised the school on improving its accessibility.

In 2014, Wong created the Disability Visibility Project, a storytelling platform and community amplifying disabled people and disability culture, in partnership with the StoryCorps series.

Per NPR, Wong was appointed by President Barack Obama to serve on the National Council on Disability from 2013 to 2015. She made history in 2015 when she was the first person to visit the White House via a robot “surrogate.” She attended President Obama’s reception celebrating the 25th anniversary of the Americans With Disabilities Act using the telepresence robot, BeamPro, which enables the user to control its movements with their computer while projecting their face onto a video monitor, per Popular Science.

Additionally, Wong was a regular columnist for Teen Vogue, published her 2022 memoir to critical acclaim, and edited a series of anthologies showcasing disabled voices. In 2024, Wong served as a MacArthur “Genius” Award fellow, per SFist, where she utilized her expertise to raise the political and cultural visibility of disabled people and expand how disability is understood.

Most recently, Wong co-partnered with NYC-based artist Finnegan Shannon on a public art project called Disabled Rage, according to Wong’s website.

Those wishing to help further the advancement of Wong’s legacy are invited to donate to her GoFundMe.

“As we mourn the incomprehensible loss of Alice, we share the words she gifted us with from her memoir, Year of the Tiger. ‘The real gift any person can give is a web of connective tissue. If we love fiercely, our ancestors live among and speak to us through these incandescent filaments glowing from the warmth of memories,’” Wong’s family wrote on social media, per NPR.

“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,” Wong wrote in a social media post, published after her death. “I did not ever imagine I would live to this age and end up a writer, editor, activist, and more.”

“As a kid riddled with insecurity and internalized ableism, I could not see a path forward. 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,” she continued. “We need more stories about us and our culture. You all, we all, deserve the everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching.”

“Alice Wong was a hysterical friend, writer, activist and disability justice luminary whose influence was outsized,” wrote Wong’s friend and fellow activist Sandy Ho, per NPR. “Her media empire, the Disability Visibility Project, left an indelible mark on the cultural landscape of our country. The legacy of her work will carry on.”

Image: Alice Wong/Facebook

Previously: SF Disability Justice Activist Alice Wong Wins MacArthur 'Genius' Grant, as Does Cabaret Star Justin Vivian Bond