What Alice Wong Taught Us: Care, Justice, and the Power of Disabled Lives
Alice Wong changed the world long before most people even knew her name. She didn’t do it through fame, wealth, or power. She did it the way so many disabled people do—through community, mutual care, creativity, and an unwavering belief that every disabled life is worth living fully.
Alice died on November 14, 2025, at the age of 51. For many of us, the grief feels strangely personal. Even if you never met her, you likely felt her influence—through her words, her organizing, her humor, her tenderness, and the way she insisted that disabled people deserve joy, autonomy, and love.
Growing Up With a Body the World Wasn’t Ready For
Alice was born in 1974 in Indianapolis, the daughter of Hong Kong immigrants Henry and Bobby Wong. Doctors diagnosed her with spinal muscular atrophy when she was a baby and told her parents she would not live to adulthood. Those predictions were wrong in every possible way.
Alice lived to 51. And she lived big.
She stopped walking around age 7 or 8, used a power wheelchair, and later required a ventilator. None of that stopped her from building a life filled with friendships, activism, intellectual brilliance, art, culture, and community. She attended college, earned a master’s degree from UCSF, mentored countless disabled creators, and traveled—sometimes in person, sometimes through the technology she embraced with joy.
The Power of Support, Care, and the Programs That Keep Us Alive
Alice often said she survived because of interdependence—not independence. She credited her family, friends, home care workers, and the disability community for helping her build the life she wanted.
Medicaid was part of that story too.
It paid for the personal care services that allowed her to attend college, move into her own apartment, hire attendants, breathe safely, and avoid institutions. When funding cuts threatened her care, she felt their impact immediately—just like so many disabled people do.
It’s easy for society to talk about “programs” in abstract terms, but for disabled people, Medicaid, SSI, and SSDI are not abstractions. They are the difference between living at home or being institutionalized. Between connection and isolation. Between fear and possibility.
Alice understood this deeply. She wrote about it with clarity and fire in her 2017 New York Times essay, “My Medicaid, My Life.” And she fought—relentlessly—so other disabled people could have the same chance at freedom.
Moments That Showed the World Who She Was
Alice’s life was filled with moments that became symbols—of access, technology, culture, and possibility.
Meeting President Obama Through a Robot
In 2015, she attended the White House via a Beam telepresence robot. She rolled up—robotically—into the Blue Room, where President Obama greeted her warmly. The photo went viral because it showed something true: accessibility opens doors, and disabled people belong everywhere.
Speaking Up for Plastic Straws
When cities rushed to ban plastic straws, Alice pushed back—not because she opposed environmental efforts, but because disabled people were left out of the conversation. Plastic straws were essential medical tools for many. Her advocacy helped shift the national narrative toward disability justice.
Appearing in Animation
In Netflix’s Human Resources, Alice voiced a character inspired by herself—a disabled woman who flirted, cursed, loved, desired, and lived. It was one of the rare portrayals of disabled people as full human beings instead of metaphors.
Winning the MacArthur “Genius Grant”
In 2024, she was awarded the MacArthur Fellowship—recognition of a life spent pushing culture, policy, and imagination forward.
Joy, Vulnerability, and the Life She Built
In 2024, Alice moved into her own apartment for the first time. She decorated it, hosted dinners, and adopted two cats, Bert and Ernie. She delighted in their personalities. She invited friends over to eat, talk, and laugh. She lived independently, but never alone—her life was a web of care.
That same year, she published Disability Intimacy, an anthology about love, interdependence, pleasure, and desire—subjects she believed disabled people deserved to claim without apology.
Even when her health declined sharply in 2022, when a collapsed lung left her unable to speak or swallow for months, Alice found new ways to communicate. She switched to a text-to-speech app and continued her life’s work using tools, creativity, and sheer determination. Community rallied around her, raising funds in hours to pay for the at-home care that insurance would not cover.
Building Futures Through Storytelling
In 2014, she founded the Disability Visibility Project, an effort to collect oral histories of disabled Americans. She wanted disabled people to be remembered, documented, archived—to exist fully in the historical record.
She co-founded #CripTheVote, organized the Society of Disabled Oracles, and created dozens of projects rooted in collective imagination and political power.
Alice believed stories shape policy, culture, and belonging. And she made sure disabled stories would never again be absent from the national conversation.
Her Final Message
Before her death, Alice wrote:
“I hope when that time comes, I die with the satisfaction of a life well-lived, unapologetic, joyful, and full of love.”
She did.
And she leaves behind a legacy that invites all of us—disabled and non-disabled alike—to imagine a world shaped by care, justice, creativity, and deep interdependence. Let’s continue to help shape that world.
You can learn more about Medicaid benefits at Medicaid.gov.
You can explore our How to Apply for SSDI articles to learn more about how to apply for disability benefits.
You can learn more about the voice assistive technology Alice Wong used in our Proloquo4Text informational article.
References
Murphy, B. (2025, November 15). Alice Wong, disability rights advocate and wordsmith, dies at 51. The Washington Post. https://www.washingtonpost.com/obituaries/2025/11/15/disability-activist-alice-wong/
New York Times. (2025, November 15). Alice Wong, Writer and Relentless Advocate for Disability Rights, Dies at 51. https://www.nytimes.com/2025/11/15/us/alice-wong-dead.html
NPR. (2025, November 15). Disability rights activist and author Alice Wong dies at 51. https://www.npr.org/2025/11/16/nx-s1-5610373/remembering-disability-rights-activist-alice-wong
Disability Visibility Project. (n.d.). About. https://disabilityvisibilityproject.com/about/
MacArthur Foundation. (2024, October 1). Alice Wong. https://www.macfound.org/fellows/class-of-2024/alice-wong
Time. (2024, March 26). Living With Muscular Dystrophy at 50 Makes Death My Shadow Partner. https://time.com/6960765/alice-wong-muscular-dystrophy-essay/
UCSF School of Nursing. (2023, July 19). Disability and Health Care: A Conversation with Activist Alice Wong. https://nursing.ucsf.edu/news/disability-and-health-care-conversation-activist-alice-wong
Wong, A. (2017, May 3). My Medicaid, My Life. The New York Times. https://www.nytimes.com/2017/05/03/opinion/my-medicaid-my-life.html
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