“Alice, thank you for all you gave me:
Disabled pride;
new unicorn friends;
a reason to write;
a reason to sing;
permission to express rage;
“I will not apologize for my needs”;
the book I recommend to everyone, Disability Visibility;
“This was the next iteration of my cyborg existence”;
understanding;
comradeship;
community;
flowers;
pictures of your cats;
dried strawberries;
love;
the knowledge I wasn’t alone.”
by Aubrie Lee
DREDF Board Member
By now, many of you know that Alice Wong is now a disabled ancestor. Alice was best known as the founder of the Disability Visibility Project, but to many of us in the disability community, she was a cultural leader. Alice was a beloved member of the DREDF Board. She was an uncompromising advocate on diversity in the movement, a loving mom to Bert & Ernie (her cats), a foodie who loved cooking, an anti-genocide activist, and co-founder of the #CripTheVote movement. She also loved a good red lip.
Alice’s activism and commitment to disability justice seemed to always spill over into the support of creative endeavors. She intentionally centered disabled people of color like Vilissa Thompson and was a fervent supporter of the #DisabilityTooWhite hashtag. She fought for infection control and masking at UCSF and provided grants to The Sick Times, a journalist-founded website chronicling the Long COVID crisis. She shared perspectives and proposals against plastic straw bans, and she commissioned Bibipins to make a “Suck It Ableism” pin. Alice was incredibly generous, stating once in an #ADA30 Twitter Chat, “Don’t feel like there’s only ONE way to be an activist. People should do what is right for them!”
This is a tremendous loss for the disability community, and for many here at DREDF. In this space of collective grief, we are comforted by her writings and the web of community she weaved together.
In her family’s statement on Alice’s passing, they shared words from Alice’s memoir, Year of the Tiger: “The real gift any person can give is a web of connective tissue.” That connective tissue, she gifted us, and we re-share a few words and tributes by others in that web:
- Elea Chang, the creator of Disabled and Here, shared: “Alice raged against an ableist world and never took her time for granted,” along with a wonderful list of “random anecdotes.”
- Shruti Rajkumar wrote a powerful piece on Alice’s influence as a disabled Asian American leader.
- This Substack post by Leah Lakshmi Piepzna-Samarasinha and Jane Shi is a deeply personal and moving tribute to Alice: “We wish we all had more days, and late nights, with Alice.”
- Reflections on Alice’s impact by Jim LeBrecht, Co-Director and Co-Producer of Crip Camp, “The feedback on her [Alice] work with Netflix was nothing short of a rave, as if the knowledge she shared quenched a thirst no one knew they had.”
- A heartfelt post by Gregg Beratan and Andrew Pulrang, partners in #CripTheVote, sharing: “It was Alice who coined the hashtag. She was also the one who at every stage kept us focused on adhering to the principles of Disability Justice.”
- A message from the Disability Cultural Center closed with: “This grief is fresh, and the pain intense. Live in crip time and be gentle. Take care of yourself and each other. Remember, Alice loves you.”
Alice had a long relationship with DREDF and with individual members and board members. Alice worked with our Board Chair, Steve Kaye, at UCSF on disability data collection and research, and she collaborated with DREDF throughout the COVID pandemic on life-or-death issues of crisis standards of care and access to the COVID vaccine. Back in 2012, she shared her story with us as part of our Healthcare Stories series:
Alice’s legacy as a disabled ancestor will last for decades. We promise to rage on. Thank you, Alice.