California disability rights leader Alice Wong has died

Alice Wong, a California disability rights activist who employed wit, creativity and sometimes trauma in her fight for justice, has died. She was 51 years old.

The San Francisco-based activist, who calls herself the “Cyborg Oracle,” rose to national prominence in 2013, when President Obama appointed her to the National Council on Disabilities. Wang attended a White House reception in 2015 in virtual form as a “telepresence robot”.

“One of the things that really makes me happy is the fact that there are so many amazing, talented, creative disabled people,” Wang told comedian W. Camo Bell on the City Arts and Lectures podcast in 2020.

An accomplished advocate for disability justice, Wang has written a memoir, written numerous articles, edited two anthologies, hosted a podcast and founded the Disability Vision Project, a platform for writers and artists with disabilities. Her nonpartisan #CriptheVote hashtag got national candidates to pay attention, and in 2021 she helped prioritize access to COVID vaccines for thousands of high-risk Californians. Wang even challenged San Francisco’s attempt to ban plastic straws, pointing out that many disabled people need them.

In 2024, she was awarded a MacArthur Foundation “Genius Grant” because of “the prejudice people with disabilities face and the policies that negatively affect them.”

“Hello everyone, it looks like my time has passed,” Wong said in a text message after her death. “I have many dreams that I want to fulfill and I plan to create new stories for you. … As a child who suffered from insecurity and inner potential, I could not see myself going forward.

“It was thanks to friends and some great teachers who believed in me that I was able to work my way out of adversity to a place where I finally felt comfortable in my own skin. We need more stories about our culture and our culture. You all, all of us, deserve everything in such a hostile, enabling environment.”

“Alice has a plan for everything,” her close friend and colleague Cindy Ho told The Times in 2022. “She describes herself as a crippled oracle, and that’s part of it. She predicts the future.”

President Obama greets Alice Wong by robot during the 25th anniversary celebration of the Americans with Disabilities Act at the White House in 2015.

(Lawrence Jackson/The White House)

San Francisco Mayor Daniel Lowry wrote in X that Wang’s “activism and courage have inspired countless people in our communities, including right here in San Francisco.” “Let’s honor her legacy by continuing to build a city where every voice is heard, every space is accessible, and every resident can thrive,” he added.

American Assn. People with Disabilities released a statement about the impact of Wang’s work.

“Alice revealed to the world the complexity of the disability experience – our joy, anger and disgust,” the organization said in X.

Wang, born March 27, 1974, grew up in Indianapolis, the daughter of immigrants from Hong Kong. Her father, Henry, was a jeweler. Her mother, Bobbie (Lee) Wong, is a social worker. Wang spent most of his adult life in San Francisco.

She was born with muscular atrophy, a rare neurological disorder that limits her movement and strength. She began using a wheelchair in grade school and came to rely on a BiPap ventilator worn in her nose.

“My cyborg body is bound in the orbit of the object satellite,” Wang wrote in his 2022 memoir, “Year of the Tiger.” “These hardware, machines, and everyday objects may not be living and breathing, but they are a part of me. They simultaneously ground me and free me. They center me and allow me to make the most of my life.”

In the book, she recounts her childhood experiences with bullying and discrimination and how it inspired her to become a disability rights advocate.

“I grew up hearing terms like Weakness, birth, defect, pathologyand unusual Related to me, she wrote: “I didn’t know how it affected my personality. These words became sources of strength and resistance as I delved into my imagination through reading, writing and watching too much TV.

Wang attended Earl’s College in Richmond, Ind., but after a respiratory failure episode, she transferred to Indiana University-Purdue University in Indianapolis, which was closer to home, and graduated in 1997 with degrees in English and sociology. She received her master’s degree in medical sociology from UC San Francisco in 2004. She later worked for the university’s Center for Personal Assistance Services, a program that helps people with disabilities live independently.

She will return to her childhood storytelling foundation of how she brought attention to broader ability and health privilege, fighting against narratives that cast people with disabilities as second-class citizens.

“There are so many things left that I want to do, and there are even more things I want to do,” she wrote in her memoir. “Manifestation requires passion, enthusiasm, sensitivity and creativity. Every book or story of a disabled person has a piece of the spell… Eventually, when enough pieces come together and fit, there will be a collective harmonic conjuration. Waves of energy stimulated by the movement, our truth, the undeniable, the incredible, with our true and vast message. Only by building the frequency for us and manifesting our infinite dreams, will the world finally see us as How we are.

Known for her trademark red lipstick, black electric chair and gray ventilator, Wang wrote with wit and honesty – at once personal, vulnerable and unforgiving. Her messages, often drawn from her own identity and experience, have been featured in publications including Teen Vogue and The New York Times, in the form of articles such as “What I Learned from Crowdfunding My Medical Care” and “My Medicaid, My Life.”

When Donald Trump was elected president in 2024, Wang expressed concern about his disdain for the Affordable Care Act and what it would mean for Americans with disabilities and their access to health care.

“I fear like millions of marginalized people who really know who Trump is and what he stands for,” she said in an interview with The Guardian in January. “Trump has always been clear about who he is and what his plans are, including the Affordable Care Act’s Medicaid expansion, with the very real possibility of millions of Americans losing their health coverage.”

Wang died of an infection at UCSF Hospital on Friday. Ho posted Wang’s obituary on his X account. It also moved to her GoFundMe page, which asked donors to help cover her daycare costs while dismissing the need for charity as “justifiable cruelty.”

“The government pays to lock us up in medical institutions, but we have to fight like hell to live in society.”

“She will be remembered as a fierce beacon in disability justice, a prolific writer, editor and community organizer,” the post said.

“As we mourn Alice’s inexplicable loss, we share the words she gifted us from her memoir, Year of the Tiger:

“The truest gift anyone can give is a web of connective tissue. If we love deeply, our ancestors live among us and speak to us through incandescent filaments lit by the warmth of memories.”