Alice Wong (activist)

Based on Wikipedia: Alice Wong (activist)

"Don't let the bastards grind you down. I love you all."

Those were Alice Wong's final words, shared by her friend after Wong died from an infection in a San Francisco hospital on November 14, 2025. She was fifty-one years old. The message captured everything about her—the defiance, the tenderness, the refusal to be diminished by a world that too often tried to diminish people like her.

Alice Wong was a disability rights activist, writer, and community organizer who spent her life doing something deceptively simple: she made disabled people visible. Not as objects of pity or inspiration, but as full human beings with stories worth telling, desires worth honoring, and political power worth wielding.

Born Into a Body That Would Define Her Fight

Wong was born on March 27, 1974, in suburban Indianapolis, Indiana. Her parents, Henry and Bobby Wong, had immigrated from Hong Kong. She had two sisters, Emily and Grace. From birth, she had spinal muscular atrophy—a neuromuscular disorder that progressively weakens the muscles responsible for movement.

Spinal muscular atrophy, often abbreviated as SMA, is a genetic condition. The body doesn't produce enough of a protein essential for motor neurons, the nerve cells that control voluntary muscle movement. Without this protein, motor neurons deteriorate. Muscles weaken. For Wong, this meant she stopped walking around age seven or eight.

What's crucial to understand is that SMA affects movement, not cognition. Wong's mind was as sharp and restless as anyone's. Sharper, perhaps, because she spent her life observing a world that wasn't built for her, noticing the thousand small ways society excluded people with disabilities, and figuring out how to change it.

The Fight for Independence

After high school, Wong enrolled at Earlham College, a small liberal arts school in Indiana. This might sound unremarkable, but for a young woman who used a wheelchair and required personal care assistance, it was a significant act of autonomy.

That autonomy was fragile. It depended on Medicaid—the government health insurance program for people with limited income—covering her personal care services. These are the human helpers who assist with daily activities many of us take for granted: getting out of bed, bathing, dressing, eating.

Then came cuts to the program. Then came a terrifying episode of respiratory failure—SMA can weaken the muscles used for breathing.

Wong had to transfer schools and move back in with her parents.

This experience would shape her activism for decades. The precariousness of disability in America, how quickly independence could be stripped away by a budget decision made in some distant office, how the systems meant to help were also systems that could control and constrain. She understood this not as an abstract policy issue but as the texture of her daily life.

She graduated from Indiana University–Purdue University Indianapolis in 1997 with a bachelor's degree in English and sociology. Then she moved to California, earning a master's degree in medical sociology from the University of California, San Francisco, in 2004.

The Disability Visibility Project

In 2014, Wong founded the Disability Visibility Project. The timing was deliberate—it was the year before the twenty-fifth anniversary of the Americans with Disabilities Act, the landmark 1990 law that prohibited discrimination against people with disabilities in employment, public accommodations, and transportation.

The project started as an oral history initiative in partnership with StoryCorps, the organization known for recording and preserving personal stories from everyday Americans. Wong's insight was that disabled people's stories were rarely told, and when they were, they were usually told by others. Doctors. Family members. Charity fundraisers crafting narratives of suffering overcome or tragedy endured.

Wong wanted disabled people to speak for themselves.

By 2018, the project had collected around one hundred forty oral histories. But it grew beyond that original mission into something larger: a podcast, a blog, social media communities, arts projects. It became a gathering place, a hub for what Wong helped define as disability culture.

This concept deserves explanation. Disability culture isn't just about accommodations and access, though those matter enormously. It's about recognizing that disabled people have developed their own ways of being in the world—their own humor, aesthetics, values, and knowledge. It's the understanding that disability isn't simply a medical condition to be fixed but an identity that can be a source of community and even pride.

An Obama Appointee—Via Robot

In 2013, President Barack Obama appointed Wong to the National Council on Disability. This is an independent federal agency—not part of any cabinet department—that advises the president, Congress, and other agencies on policies affecting disabled Americans. Wong served until 2015.

But perhaps the most memorable moment of her government engagement came that year, at the White House reception celebrating the twenty-fifth anniversary of the Americans with Disabilities Act.

Wong attended via telepresence robot.

Picture it: a wheeled device with a screen showing Wong's face, rolling through the White House, mingling with other guests, meeting President Obama. She was the first person to visit the White House and meet the president this way.

It was partly practical—traveling long distances with complex medical needs is exhausting and expensive. But it was also symbolic. Wong demonstrated that presence doesn't require a physical body in a particular place. Connection can happen across distance. Technology can extend our reach.

This wasn't just a stunt. It was an argument made visible.

The Writer

Wong's activism increasingly took written form. She became an editor and author, amplifying disabled voices through books that reached far beyond the disability community.

In 2018, she edited "Resistance and Hope: Essays by Disabled People." In 2020, she released "Disability Visibility: First-Person Stories from the Twenty-First Century," which collected personal essays from disabled writers on topics ranging from dating to police violence to chronic illness. A young adult adaptation followed in 2021.

Then, in 2022, came her memoir: "Year of the Tiger: An Activist's Life." Wong was born in the Year of the Tiger according to the Chinese zodiac, and she embraced the symbolism—tigers are associated with courage, confidence, and fierce independence.

Critics responded enthusiastically. The Washington Post's Anna Leahy noted how Wong made "incisive critiques, humor, practicality and optimism" feel "compellingly inseparable." In the Los Angeles Review of Books, Laura Mauldin called her "at once brilliant and accessible—a storyteller above all—and a leader who knows she has to say what needs to be said, and then rest."

That last phrase—"and then rest"—hints at something important. Wong was open about the realities of living with a progressive condition that required constant energy management. She modeled what disability justice advocates call "crip time": the recognition that disabled people often need to move at different paces, take breaks, prioritize rest as a form of resistance against a productivity-obsessed culture.

Her final book, "Disability Intimacy: Essays on Love, Care, and Desire," appeared in 2024. The title signals her later focus on the tender, personal dimensions of disabled life—not just rights and policies, but love, touch, vulnerability, connection.

Crips for eSims for Gaza

In December 2023, as the war in Gaza intensified following Hamas's October 7 attack on Israel and Israel's subsequent military campaign, Wong co-founded something unexpected: "Crips for eSims for Gaza."

Some context helps here. An eSIM is an electronic SIM card—the tiny chip that connects your phone to a cellular network. Traditional SIM cards are physical objects you insert into your phone. eSIMs are digital, downloadable. They can be sent to anyone with a compatible device, anywhere in the world.

In Gaza, where infrastructure was being destroyed and communication networks disrupted, eSIMs offered a lifeline. With phone and internet access, people could contact family, access emergency information, document what was happening, reach the outside world.

Wong, along with collaborators Jane Shi and Leah Lakshmi Piepzna-Samarasinha, organized a crowdfunding effort. It was "disabled-led," as they emphasized—a point of pride and principle. The campaign raised over three million dollars.

Why would disability activists focus on Gaza? For Wong, the connections were clear. She understood what it meant to be at the mercy of systems that could cut off your access to the basics of life. She understood how quickly the vulnerable could be abandoned. And she understood that solidarity across different struggles—disability rights, Palestinian rights, racial justice—was essential to any meaningful liberation movement.

A Life at Home

For many years, Wong lived with her parents. This wasn't unusual for someone with her level of care needs, but it also wasn't the independence she'd once fought for at Earlham College.

In 2024, she moved into her own apartment in San Francisco. She lived there with two cats named Bert and Ernie.

It was a small detail she shared publicly, and it mattered. Independence. A home of her own. Cats. The ordinary pleasures of adult life that so many disabled people are denied.

Recognition

The awards accumulated throughout her career, each one a marker of growing recognition.

In 2007, her alma mater UCSF gave her the Martin Luther King, Jr. Award. In 2010, she received two honors: the San Francisco Mayor's Disability Council Beacon Award and the first-ever UCSF Chancellor's Disability Service Award. In 2016, the American Association of People with Disabilities gave her their Paul G. Hearne Leadership Award, specifically designated for emerging leaders who exemplify advocacy and dedication to the disability community.

In 2020, Wong was named a Ford Foundation Disability Futures Fellow. That same year, she appeared on the BBC's annual list of 100 Women and on Time magazine's list of sixteen people fighting for equality in America.

She even won an acting award. In 2021, the New Jersey Web Fest gave her "Best Supporting Actor" for a performance in a web series called "Someone Dies In This Elevator." She also voiced a fictionalized version of herself on the Netflix animated series "Human Resources," a spinoff of "Big Mouth" about the monsters and creatures who guide humans through life's emotional challenges.

Then, in 2024, came the MacArthur Fellowship—colloquially known as the "genius grant." The MacArthur Foundation awards these fellowships to individuals who show "exceptional creativity" and a "track record of significant accomplishment." Recipients get eight hundred thousand dollars over five years, no strings attached.

Wong was fifty years old. She had been fighting for disability rights for decades. The recognition meant the mainstream was finally catching up to what the disability community had long known: this woman was extraordinary.

The Meaning of Visibility

Wong titled her major project the Disability Visibility Project for a reason. Visibility was both her method and her message.

Disabled people have historically been invisible—warehoused in institutions, hidden by families, absent from media representation except as pitiful figures or magical inspirations. The disability rights movement, which exploded in the 1970s and achieved its legislative pinnacle with the Americans with Disabilities Act in 1990, was partly about legal rights and physical access. But it was also about being seen.

Wong understood that visibility had to be on disabled people's own terms. She pushed back against what activists call "inspiration porn"—images and stories that present disabled people as inspirational simply for existing, for getting out of bed, for smiling despite their "tragic" circumstances. This framing, Wong argued, was actually a form of objectification. It made disabled people into props for non-disabled people's emotional edification.

Instead, Wong advocated for what she called "collective access"—the idea that accessibility benefits everyone and should be built into how we design our world, not added as an afterthought. She championed the social model of disability, which distinguishes between impairment (a physical or mental difference) and disability (the barriers society creates). A wheelchair user isn't disabled by their legs; they're disabled by stairs. Build a ramp, and the disability diminishes.

This framework has radical implications. It suggests that disability isn't a personal tragedy to be overcome through individual grit, but a political condition created by choices about how we structure our world. Change the world, not the person.

Her Final Message

Wong died on November 14, 2025, from an infection. She was in a San Francisco hospital. She was fifty-one.

Her friend Sandy Ho shared Wong's final message. In it, Wong reflected on her life and expressed hope for the disability community's future, saying she believed it would "light the way."

Then came those last words: "Don't let the bastards grind you down. I love you all."

The phrase "don't let the bastards grind you down" has a long history. It's often rendered in mock Latin as "illegitimi non carborundum," a phrase that dates back at least to World War II. It's been adopted by various resistance movements as a rallying cry. Margaret Atwood used it in "The Handmaid's Tale."

Wong chose it deliberately. She knew the bastards—the systems, the policies, the attitudes that grind disabled people down. She'd spent her life fighting them. And her final act was to tell her community: keep fighting. Don't let them win.

But she ended with love. Not defiance alone, but tenderness. That was Alice Wong: fierce and soft, angry and generous, visible and unforgettable.