(Photo courtesy of MacArthur Foundation) “Disability rights advocate Alice Wong”

Amy Lam

Connector Staff

Alice Wong, a disability rights advocate and author at age 51, died on Nov. 14 at a hospital in San Francisco.

It is important to note the issues in the disability community, “People with disabilities face inaccessible educational, professional, and social environments. They face stigma and discrimination. Moreover, society fails to recognize that disability is a part of being human, partially because practices and places fail to account for disabled ways of being in the world,” said Dr. Becca Richards, Professor of English, UMass Lowell faculty staff.

On March 27, 1974, in Indianapolis, Wong was born and diagnosed with spinal muscularatrophy, a neuromuscular disease that slowly weakens the muscles.

Her parents, Bobby and Henry Wong, were immigrants from Hong Kong. Doctors told them their daughter wouldn’t live long. 

She graduated with a master’s degree in medical sociology from the University of California, San Francisco.

She made many achievements and received awards for her work. In 2024, she was awarded a MacArthur genius award for her work in disability activism. 

Her experiences as a person with a disability shaped her to work on a variety of projects related to advocacy.

As the founder of the Disability Visibility Project — which originally began as a collection of oral histories of people with disabilities in partnership with StoryCorps — this project evolved into an online platform dedicated to amplifying disabled voices and the culture.

She also expressed the need to work with people whose identities are overshadowed on top of their disability such as, women of color, LGBTQ+ people, and immigrants. 

In her memoir “The Year of the Tiger: An Activist’s Voice”, Wong wrote a detailed collection of personal stories and commentary on social issues concerning the struggles of the people inside the disabilities community. There are chapters published on the ADA, the Olmsted Decision, Medicaid and the COVID-19 pandemic. All containing major decisions that serve as the foundation to either leverage or harm the community.

She also contributed to social media movements such as #CripTheVote and #AccessIsLove.

In 2013, President Barack Obama appointed Wong to the National Council on Disability. She was the first person to use robot telepresence to attend the 25th Anniversary of the American Disability Act at the White House.

After losing her ability to speak, Wong relied on text-to-speech software to speak. She worked with CommunicationFIRST, a nonprofit committed to protecting and advancing rights for people with communication-related disability in using augmented and alternative communication on the advisory council.

She also cofounded Crips for eSims for Gaza with Jane Shi and Leah Lakshmi Piepzna-Samarasinha. This project raised over $3 million to support people in Gaza to connect to the internet.

Known for her strong online presence, she often contributed to Teen Vogue and other outlets.

Sandy Ho and Yomi Young, friends of Wong, talked about her legacy on Here & Now’s WBUR and NPR, respectively. 

“Alice Wong was a hysterical friend, writer, activist and disability justice luminary whose influence was outsized,” Ho sent an email to 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.” 

Young spoke with Here & Now’s Elissa Nadworny about memories of Wong from throwing elegant parties and host friends in her San Francisco apartment, her connection to the world and generosity in giving care packages to strangers, and her bougieness. 

To honor Alice Wong, Young said, “I think we can honor Alice by speaking truth to power, and I would say just keep pushing.”

“She used her life force to bring other people’s stories and lives into the disability conversation and community. She amplified others’ talents and experiences. And she always wrote with righteous anger, silliness, joy, creativity, and generosity,” Dr. Richards said in honor of Alice Wong.

Young relayed a message Wong left to the disabled community in her death announcement, “Don’t let them grind you down. I love you all.”