11/18/2025
Join us to honor Alice Wong — a fierce luminary in disability justice and recipient of the 2024 MacArthur Foundation “Genius Grant”, who served the National Council on Disability from 2013 to 2015. Our beloved community leader died of an infection at 51 on Nov 14, 2025.
The late disability rights activist and author was born with spinal muscular atrophy to immigrant parents from Hong Kong. Despite being told that she wouldn’t live to become an adult, she did and left an incredible legacy behind. The world listened to Wong’s powerful voice–first from behind a BiPap mask– and eventually from a communication device that generated her words when placement of a tracheostomy and ventilator left her unable to speak in 2022. “Being disabled in a nondisabled world is precarious, one of constant adaptation. I remade myself into a new cyborg form that still has a voice, a breath, and a will to live.”
https://bit.ly/AliceW_TIME
A self-described “Medicaid welfare queen”, Wong never stopped fighting for Americans who need medical coverage and resources to lead a fulfilled life. Her rage and struggles from combatting discrimination since her childhood growing up in Indiana were channeled to defend the rights of disabled people to be seen as valuable members of society, whose lives are inherently worthy whether they can take part in the traditional labor force or not. Her determination to demand equity, access, and opportunity improved society for disabled people and their allies worldwide.
Unable to wear an N95 mask, the San Francisco resident was dependent on the masking of others. But despite being high risk and disabled, Wong struggled with safe access to care and barriers to accommodation in our eroding healthcare system. Her horrific hospital stays in January 2024 served as a call to action shared through her campaign (https://bit.ly/AliceWong_N95s4UCSF), and her blogs for , galvanized community support for implementation of airborne precautions and safer healthcare environments.
R.I.P. Alice. We will carry on as your light shines above us. We won’t give up.
Photo Credits: Photojournalist Dan Ryan
