Obituary of incapacity rights activist Alice Wong lifeless at 51 : NPR

[ad_1] <img src="https://npr.brightspotcdn.com/dims3/default/strip/false/crop/683x512+0+282/resize/1100/quality/50/format/jpeg/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa4%2F73%2F79540340431f8a94bb7b0178f492%2Falicewong-5.jpg" data-template="https://npr.brightspotcdn.com/dims3/default/strip/false/crop/683x512+0+282/resize/{width}/quality/{quality}/format/{format}/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa4%2F73%2F79540340431f8a94bb7b0178f492%2Falicewong-5.jpg" class="img" alt="Alice Wong, author and disability rights activist." fetchpriority="high"/> Alice Wong, a disabled activist, author, editor, and group organizer primarily based in San Francisco and the founder and director of the Incapacity Visibility Undertaking, labored to amplify disabled tradition and the voices of disabled folks and dismantle ableist programs in the US. Allison Busch Pictures/Incapacity Visibility Undertaking cover caption

toggle caption

Allison Busch Pictures/Incapacity Visibility Undertaking Alice Wong, an creator and activist who fought for incapacity rights and justice, has died. Wong was 51 years previous.

The MacArthur "Genius" Award-winner died Friday of an an infection on the College of California, San Francisco hospital, in keeping with an electronic mail despatched to NPR by buddy and fellow activist Sandy Ho.

"Alice Wong was a hysterical buddy, author, activist and incapacity justice luminary whose affect was outsized," wrote Ho. "Her media empire, the Incapacity Visibility Undertaking, left an indelible mark on the cultural panorama of our nation. The legacy of her work will stick with it."

Wong's household stated in a social media submit Saturday that she might be remembered as "being a fierce luminary in incapacity justice, a superb author, editor and group organizer."

"As we mourn the incomprehensible lack of Alice, we share the phrases she gifted us with from her memoir, Yr of the Tiger. 'The true reward any individual can provide is an online of connective tissue. If we love fiercely, our ancestors reside amongst and converse to us by means of these incandescent filaments glowing from the heat of reminiscences,'" her household wrote.

Wong was greatest referred to as the founding father of the Incapacity Visibility Undertaking (DVP). The group highlights disabled folks and incapacity tradition by means of storytelling tasks, social media and different channels.

DVP launched in 2014 with an oral historical past challenge encouraging these with disabilities to share their tales in partnership with StoryCorps, a nonprofit that collects, preserves and shares the non-public tales of on a regular basis Individuals. StoryCorps narratives are usually broadcast on NPR.

From immigrant to group chief Wong was born to immigrant dad and mom from Hong Kong in Indianapolis, Ind. suburbs in 1974. She was recognized at delivery with muscular dystrophy, a progressive neuromuscular illness that slowly weakened her muscle tissue and docs instructed her dad and mom that she would not reside to the age of 18.

"I struggled loads as a baby," Wong stated in a phase recorded earlier this yr for NPR member station KQED. "I felt so alone and offended. I used to be mainstreamed in public faculties and was often the one disabled pupil in a classroom and or one in every of a handful of Asian American college students."

She continued, "I needed to develop up very quick advocating for myself with adults akin to academics and docs, though I did not have the language for what I used to be experiencing."

Regardless of her many challenges, Wong earned a bachelor's diploma from Indiana College–Purdue College Indianapolis adopted by a grasp's diploma from the College of California, San Francisco. After graduating, she labored at her San Francisco alma mater as a employees analysis affiliate for greater than a decade. In the meantime, her profession in incapacity advocacy flourished.

Following a sequence of medical emergencies in 2022, Wong started speaking by means of digital text-to-speech expertise. In her 2022 memoir Yr of the Tiger: An Activist's Life, the creator describes herself as a "disabled cyborg" – an individual "tethered to tools, expertise and electrical energy to maintain alive."

Along with elevating the profile of disabled folks, Wong strove to dismantle systemic ableism within the U.S. She wrote about her opposition to the ban on consuming straws and the necessity to implement the sporting of masks in well being care settings. A social media power-user, Wong co-founded #CripTheVote in 2016, a nonpartisan on-line motion facilitates discussions about incapacity points between voters and politicians.

Taking advocacy additional Wong was a prolific author who obtained approval for Yr of the Tiger. NPR described the guide as highlighting the creator's ardour for "dwelling an unapologetic, unabashed disabled life full of science-fiction, good meals, and cats." Wong's literary actions additionally encompassed modifying a number of works on incapacity, and contributing a column to Teen Vogue.

"Alice is my comrade in political wrestle. She's my buddy. She's a foodie. She's an artist," stated incapacity and social justice organizer Yomi Sachiko Younger of Wong in a 2025 phase for KQED. "She's a bit bougie, which I like."

Wong additionally took her advocacy to the nation's capital. She attended a White Home reception for the twenty fifth anniversary of the Individuals With Disabilities Act in 2015 by means of a telepresence robotic. She was the primary individual to go to the White Home and a U.S. President – on this case, Barack Obama – through a robotic "surrogate," in keeping with In style Science. Wong served, at Obama's behest, on the Nationwide Council on Incapacity from 2013 to 2015.

Talking together with her digital voice on KQED in Feb. 2025, Wong stated she was "radically dedicated to a lifetime of pleasure and pleasure." She talked about her enjoyment of cooking for others, together with twice-weekly lunches for her aged dad and mom, and caring for her cats, Bert and Ernie.

"With the ability to use my privilege to move on alternatives to different disabled folks and help tasks I consider in brings me a lot pleasure," Wong stated. "We reside in such bleak occasions and what retains me going resides to the utmost with out apology."