How MacArthur Genius Alice Wong Made Disability Visible

It’s hard to appreciate “visibility,” because most of us don’t recognize how much we take our own visibility for granted. For Alice Wong, though, visibility was of insurmountable importance. The possibility of being “visible” was a source of hope and optimism, and its denial fueled her anger. Alice was a writer and editor—a disabled woman—who lived her life publicly, proudly, and visibly. In 2024, she was named a MacArthur fellow. When she passed away on November 14, 2025, at the age of 51, she left one final message: “Don’t let the bastards grind you down.”

Don’t let the bastards grind you down.

Alice believed entirely in the power of visibility—it was her ethos and her professional drive. She felt it was a travesty that so many creative disabled voices were being overlooked, and carved space for these voices to be heard editing four collections of short stories and essays written by disabled authors about disabled lives: Resistance and Hope, Disability Visibility, Disability Visibility (adapted for young adults) and Disability Intimacy. She wanted to do things that brought her joy to offer a counter to the prevailing narratives of shame and pity surrounding disability, or worse still, the cultural desire to erase disabled lives altogether.

Growing up in Indianapolis, she suffered from spinal muscular atrophy and lost her ability to walk at around 8. She spoke about being angry, about the vulnerability of being reliant on social services for vital support: “The fragility and weakness of my body, I can handle. The fragility of the safety net is something I fear and worry about constantly.”

Alice expressed a lot of concern about Trump’s re-election, eloquently explaining that shifts in the economy can mean the difference between her ability to “subsist or thrive.” But she also spoke about the glacial pace of change, and about managing one’s anger and one’s hope. Her autobiography, Year of the Tiger is hopeful and optimistic. I think that we must learn from this. Being angry, unfortunately, will only fuel a movement so far. Understanding our relationship to change, however, will sustain a fight for as long as it needs fighting.

Alice’s activism was no short battle. It began in school with a campaign for better accessibility. She said she felt a lot of animosity at this time, and this is also where her writing career began. As she continued through education in different states, she encountered more disabled people fighting for a shift in America’s attitude towards them. Alice wanted to lift these voices and be an ally to those unable to fight themselves. Her “Disability Visibility Project” formed in 2014, still exists to promote this cause. It was formed to celebrate the 25th anniversary of the Americans With Disabilities Act and was only intended to exist for a year. However, the platform is still live today. It offers an archive of interviews with disabled figures on topics as mundane as daily lives or as charged as political viewpoints. It’s also backed up by the library of congress’ own audio archive—a simple act that immortalizes the lives of disabled Americans in the official governmental history.

Working as an activist is a multifaceted job. Alice’s work was creative, organizational, and institutional. In 2013, she was appointed to the National Council on Disability where she served for two years, advising the federal government, congress, and the President on how their legislation impacts the disabled community.

Alice received her MA from the University of California in 2004 where she consequently worked for over 10 years—a decision, she explains, that was partially motivated by California’s In-Home Supportive Services which gave her the freedom to hire and train her own attendants and therefore live independently. She studied Medical Sociology—an appropriate decision as she had to leave college in Indiana because of cuts to social support which made it too expensive for her to afford tuition as well as the attendants she needed to live away from home.

Alice’s activism was motivated by the mere fact of her existence, and her existence was tied to governmental support and care. Her article “My Medicaid, My Life”—which begins with the dramatic assertion “I am a Medicaid welfare queen”—is a searingly honest testimony to the importance of social welfare and should be a required read for anyone who wishes to debate the efficacy of our government’s social policy.

More so than anything else, Alice wanted to make sure the world knew that she was there, and to remember her for decades to come. She celebrated her life—a life that was expected to end as a teenager. She wrote in a column for Teen Vogue and voiced a fictionalized version of herself on Netflix’s Human Resources. She also coined social media phrases such as #CriptheVote and #eSimsforGaza.

But most importantly, Alice wasn’t just interested in sharing her own creativity and writing. She knew that the culture she grew up in must change to be more welcoming for other people like her, and she knew she wasn’t just one exceptional person.

Alice believed in the excitement of the diverse world around her, and she believed that the culture around her would change. She did not let herself fall to the margins of society, and she did this all with passion and joy. She knew the negative reputation that disabled lives garnered, and she showed through her own life that this couldn’t be further from the abundant and rich truth. In other words, she never ever let the bastards grind her down.

© Agatha Rowold (5/1/26) Special for FF2 Media^®

Editor’s Note: FF2 is honored to post Agatha Rowold’s tribute to Alice Wong on the first day of  May. May is AAPI Month which celebrates the contributions of Americans with Asian/Pacific Island heritage. Alice died a few months ago, on November 14, 2025, at the age of 51. Thank you for your eloquence, Agatha!

LEARN MORE/DO MORE

Read about Alice’s Disability Visibility project here.

Read Alice’s essay “My Medicaid, My Life” in the New York Times.

Listen to Alice’s interview here.

Watch Alice’s interview here.

Order one of Alice’s books on Amazon. Click here for Year of the Tiger: An Activists Life. Click here for Disability Visibility: First-Person Stories from the Twenty-First Century. Click here for Disability Visibility (Adapted for Young Adults): 17 First-Person Stories for Today.

CREDITS & PERMISSIONS

Featured Photo & Bottom Photo: Courtesy of the John D. and Catherine T. MacArthur Foundation. High-resolution photos of all MacArthur Fellows (in this case Alice Wong) are available for download, including use by media, in accordance with their copyright policy.

Middle Photo: Alice Wong participates in the 25th Anniversary celebration of the Americans with Disabilities Act via robot. Pete Souza’s Official White House photo of Alice with President Barack Obama in 2015 courtesy of Wikipedia. (Photoshopped by Jan Lisa Huttner)