This year, I have read a number of stories about persons who have been given the gift of field hockey despite being born with differing abilities.
There is the continuing work of the Pennsylvania All-Starz, a group which gives the game to young Para athletes. Much of this has given rise to Para field hockey now being recognized by the U.S. Olympic and Paralympic Committee as well as USA Field Hockey.
There are individual athletes making a difference, such as Converse sophomore Julia Mann, who has played with distinction with Richmond Miles E. Godwin (Va.) in both field hockey and lacrosse despite being born Deaf. And there is the continuing journey of Maggie Kutz, who is coaching Penn State-Harrisburg with Down Syndrome.
Today, as numerous athletes are preparing for showcase events, please spare a thought for those who have different abilities who do not have the opportunity to play sports. Many people who may be overlooked for certain jobs or being in someone’s peer group may surprise you with their intelligence and tenacity.
For an extending reading today, I’m reprinting an entry from the Facebook presence called “This Day In History.” It is a poignant biography:
When Alice Wong was born in 1974, doctors delivered devastating news to her Hong Kong immigrant parents: their daughter had spinal muscular atrophy, a progressive neuromuscular disease. She wouldn’t survive to adulthood. Eighteen years, they said. Maybe less.
Alice Wong didn’t just survive. She thrived. She defied. She built an empire.
On November 14, 2025, Alice Wong passed away at age 51 in a San Francisco hospital—more than three decades beyond her supposed expiration date. In those extra years she wasn’t meant to have, she became a MacArthur Fellow, a presidential appointee, the founder of a revolutionary oral history project, and a literary force who gave voice to millions of disabled people society tried to silence.
“Storytelling is a powerful form of resistance,” she once said. “It leaves evidence that we were here in a society that devalues, excludes, and eliminates us.”
She left behind mountains of evidence.
The Girl Who Refused to Disappear
Born in Indianapolis on March 27, 1974, Alice grew up as one of three daughters in an immigrant family navigating a country that didn’t understand disability. She was often the only physically disabled student in her class and one of few Asian American students—doubly marked as different in ways that made her want to disappear.
By age seven or eight, her muscles had weakened to the point where walking became impossible. She transitioned to a powered wheelchair. Eventually, she would need assistive devices to breathe, eat, and communicate—becoming what she proudly called a “disabled cyborg.”
Growing up with a death sentence shapes your worldview in particular ways. “Doctors told my parents I wouldn’t live past 18, so I grew up never imagining what grownup old-ass Alice would look like,” she explained in an interview earlier this year. “This is why visibility, representation matters so much.”
For years, Alice tried to blend in, to minimize her difference. Then, in her twenties, something shifted. She stopped trying to hide. She started demanding to be seen—and demanding space for every other disabled person society rendered invisible.
Building the Project That Changed Everything
After earning degrees in English and sociology from Indiana University, Alice moved to California’s Bay Area—a place where the disability rights movement had deep roots. She completed a master’s in medical sociology at the University of California, San Francisco in 2004, immersing herself in disability scholarship and activism.
But traditional academia wasn’t enough. In 2014, Alice launched the Disability Visibility Project in partnership with StoryCorps—the nonprofit that collects and preserves everyday Americans’ stories.
The concept was simple but revolutionary: let disabled people tell their own stories, in their own words, without filters or interpretation by non-disabled journalists or researchers. More than a hundred oral history interviews are stored in the Library of Congress, an archive ensuring disabled voices become part of America’s permanent record.
What started as an oral history project exploded into something far larger: a media empire encompassing podcasts, anthologies, social media movements, art projects, and spaces for connection and community building. The Disability Visibility Project became the beating heart of modern disability culture.
Joy as Resistance
Alice’s activism was distinctive because it centered joy as fiercely as it challenged injustice. While she fought systemic ableism relentlessly, she also celebrated disabled life unapologetically—the pleasure of good food with friends, the companionship of her cats Bert and Ernie, the satisfaction of a well-crafted sentence.
Speaking earlier this year, she declared herself “radically committed to a life of pleasure and joy.” She described cooking twice-weekly lunches for her elderly parents, caring for her cats, and the deep satisfaction of using her platform to create opportunities for other disabled people.
“Being able to use my privilege to pass on opportunities to other disabled people and support projects I believe in brings me so much joy,” she said.
This wasn’t frivolous self-indulgence. It was revolutionary. In a society that views disabled lives as tragic, burdensome, and better off prevented, Alice’s insistence on joy—her visible, public, unapologetic pleasure in existence—was profoundly political.
Making History in a Robot Body
In 2013, President Barack Obama appointed Alice to the National Council on Disability, an independent federal agency advising the government on disability policy. She served until 2015, bringing disabled perspectives directly to federal policymaking.
That same year, she made history in an unexpected way. When the White House hosted a reception celebrating the 25th anniversary of the Americans with Disabilities Act, Alice attended—via robot telepresence. Unable to travel, she became the first person ever to visit the White House and meet a sitting U.S. president through a robotic “surrogate.”
It was quintessentially Alice: finding innovative ways to claim space in places designed to exclude her, making the impossible possible through creativity and determination.
The Writer Who Built Bridges
Alice’s literary contributions reshaped how disability appears in American letters. Her 2022 memoir, “Year of the Tiger: An Activist’s Life,” received widespread acclaim for its humor, insight, and unflinching honesty about disabled life. Critics praised her rare ability to be both hilarious and deeply moving, accessible yet profound.
She edited three groundbreaking anthologies: “Resistance and Hope: Essays by Disabled People” (2018), “Disability Visibility: First-Person Stories from the Twenty-First Century” (2020), and “Disability Intimacy: Essays on Love, Care, and Desire” (2024). Each collection amplified dozens of disabled voices, creating platforms for writers who had been systematically excluded from mainstream publishing.
She wrote a column for Teen Vogue, contributed to countless publications, and co-hosted the Disability Visibility podcast. Through it all, her mission remained constant: ensuring disabled people told their own stories.
The MacArthur Stamp of Genius
In 2024—just months before her death—Alice received one of the most prestigious honors in American intellectual life: a MacArthur Fellowship, commonly known as the “genius grant.” The award came with $800,000 over five years, no strings attached.
The MacArthur Foundation recognized her for “challenging systemic ableism through storytelling and community organizing” and for working “to change the way people think about disability from something one-dimensional and negative to something more complex and nuanced.”
In a video for the Foundation, Alice explained her vision: “There’s such diversity, joy and abundance in the lived disabled experience. We are multitudes.”
A Final Message
When Alice died on the evening of November 14, her friend Sandy Ho shared a message Alice had prepared before her passing:
“Hi everyone, it looks like I ran out of time,” Alice wrote. “I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. I have so many dreams that I wanted to fulfill and plans to create new stories for you.”
She reflected on projects still in progress—including an anthology about disability during the COVID-19 pandemic. She urged the community forward: “We need more stories about us and our culture. You all, we all, deserve everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching.”
She ended with characteristic defiance: “Don’t let the bastards grind you down. I love you all.”
Incandescent Filaments
Sandy Ho, Alice’s friend and fellow activist, called her “a luminary of the disability justice movement” who wanted a world where disabled people could live freely with full autonomy. The legacy of Alice’s work, Ho noted, is simple but profound: disabled people “speak for themselves and nobody speaks for us.”
Alice’s family chose to remember her through words from “Year of the Tiger”: “The real gift any person can give is a web of connective tissue. If we love fiercely, our ancestors live among and speak to us through these incandescent filaments glowing from the warmth of memories.”
Alice Wong spent 51 years—33 of them “borrowed” time—weaving that web of connective tissue. She created the Disability Visibility Project. She appointed herself to no position but earned presidential appointment anyway. She couldn’t travel to the White House, so she invented a new way to get there. When publishers ignored disabled writers, she became the editor who gave them platforms.
She documented hundreds of disabled lives for the Library of Congress. She wrote books that will outlive her. She co-founded Crips for eSims for Gaza, raising over $3 million to connect Palestinians to the internet. She launched #CripTheVote to mobilize disabled political power. She fought for plastic straws and masks in healthcare settings—unsexy battles that meant survival for vulnerable people.
She did all this while society insisted her life had less value, while doctors said she shouldn’t exist, while systems were designed to exclude her.
The incandescent filaments she lit—in the Library of Congress archives, in three anthologies, in a beloved memoir, in oral histories and podcasts and social media movements—will continue glowing long after November 14, 2025. They illuminate a truth Alice spent her life proving: disabled lives aren’t tragedies to be pitied or problems to be solved. They’re complete, complex, joyful, valuable, and utterly irreplaceable.
Doctors said Alice Wong would die at 18. She lived to 51 and changed the world.
That’s not survival. That’s victory.
