After Alice Wong’s Death, Her Friends Vow to Keep Fighting for Disability Justice

With a smile, Brittanie Hernandez-Wilson, 38, closes her eyes when she says her friend’s name. She pauses. A tear rolls down her cheek.

“There’s a real level of rage that I feel around Alice’s death,” she said.

It’s been a month since disability activist and author Alice Wong died in San Francisco. Since her passing, KQED has spoken with many of Wong’s friends and collaborators in the Bay Area to better understand what motivated her decades of organizing.

In her writings and public appearances, Wong spoke of the need for disabled people to advocate loudly for their health needs. This mission brought together a bold and effective network of advocates living with different disabilities. But now, folks are preparing for the biggest challenge yet: more than a trillion dollars in cuts to Medicaid and other social services in the coming decade, slashing a lifeline for disabled people nationwide.

“Alice fought like hell to exist in her body and mind every day,” said Hernandez-Wilson, who works for a nonprofit that advocates for domestic workers and caretakers. “There is a larger system at play that dictates if we are worthy enough of getting care.”

Raised in rural Minnesota, Hernandez-Wilson was the only student with a disability in her class and one of the few students of color in her entire school. “I was afraid that if I was labeled as a certain type of disabled person, I would be locked away in a classroom … that deep internalized ableism can really mess with your mind,” she said.

As an adult, she picked up Disability Visibility: First-Person Stories from the Twenty-First Century, an anthology edited by Wong.

“It was the first time in my entire life that I really saw disabled people who looked like me embody self-love, embracing their body and mind,” she said. “It was like a hug from the universe.”

After Hernandez-Wilson moved to the Bay Area last year, Wong became her mentor and friend. They shared jokes, stories of old crushes and how each managed their health. Born with spinal muscular atrophy, Wong dealt with chronic health issues throughout her life. After a series of medical emergencies in 2022, she began communicating through text-to-speech technology and her family confirmed that her death was due to an infection.

“If the systems weren’t the way they are, many of our people would still be here,” said Hernandez-Wilson. But even after Wong’s passing, she said, a generation of activists mentored by her is ready to push forward a bolder vision of liberation for all disabled people.

Centering the most marginalized

Gifted with radiant charm and a disarming sense of humor, Wong, who was 51, built coalitions between different disabled communities. Cross-disability solidarity is a core principle of disability justice, a framework developed over the last decade by queer and trans disabled activists of color in California.

In the 20th century, the primary objective for many disabled activists was securing equal employment, political participation and economic self-sufficiency — as outlined in the Americans with Disabilities Act of 1980.

This organizing was rooted in the Bay Area: the independent living movement took off here in the 1970s; activists in Berkeley created the state’s first sidewalk curb cuts; and in 1977, more than 100 disabled protesters occupied the San Francisco Federal Building to demand implementation of the rule that prohibited discrimination based on disability in federally funded programs.

Proponents of disability justice maintain that ableism affects everyone — particularly those living with disabilities — and call for a future free of all systems that oppress disabled people. This fight, Wong said in a 2022 podcast, “must center on the most marginalized.” Nowhere is this more necessary, she added, than in a post-COVID world.

While cities and states rushed to loosen pandemic restrictions, Wong pushed back and demanded hospitals — including her own care provider, UCSF — continue requiring face masks and expand research into treatments for those living with long COVID.

That’s how she met Charlie McCone.

Before contracting COVID in 2020, McCone, 35, said he had never experienced a serious health problem before.

“When you go from biking 10 miles a day to work to being housebound indefinitely, losing your job and not having any answers from the medical system, it is absolutely devastating,” he said.

Long COVID — a chronic condition that follows many coronavirus infections and still confounds researchers — permanently altered McCone’s life.

Searching for answers to his condition, he joined Twitter (now known as X). From his San Francisco home, he shared his experiences online, hoping more people would take long COVID seriously. But after two years, “I came to the realization that otherwise good and reasonable people are still completely unfazed by the fact that their next COVID infection could cause extreme harm to them or their family,” he said.

He started to feel rage at the injustices he saw.

“People disabled by this virus and those already disabled prior to the pandemic were being completely disregarded and considered disposable by the general public,” he said.

Preparing for cuts

While others recommended he temper his emotions online, Wong encouraged McCone to lean into them. They met in person for the first time in 2023 over tea and soon got to work: over the next year, their online network launched a massive social media campaign to pressure federal lawmakers to address the needs of those with long COVID.

Their efforts would bear fruit in January 2024 when Sen. Bernie Sanders (I-Vermont) held the first Congressional hearing on long COVID. Patients and doctors testified and called for long-term investments in research. Democrats later proposed $10 billion in funding for research, treatment and education.

“Alice could make incredibly meaningful change through media,” McCone said, adding that folks living with long COVID need to keep sharing their stories — now more than ever.

Legislation to fund long COVID research has stalled since Republicans took control of Congress, but the Trump administration is moving quickly to implement major health care reforms outlined in the sweeping legislation known as the One Big Beautiful Bill.

The bill establishes new eligibility rules for Medi-Cal, the state’s Medicaid program that covers over 15 million low-income Californians. State health officials predict that up to 3.4 million Medi-Cal recipients could lose their coverage in the coming years under new rules that include more frequent eligibility screenings and work requirements for certain groups. While the White House insists that the bill will not take coverage away from Americans with disabilities, independent policy experts note that California will lose matching federal funds as residents lose their Medi-Cal coverage.

State lawmakers could respond by cutting home and community-based services, which allow people with disabilities to receive treatment, care and job training in their own communities rather than in institutions like nursing homes.

“If you really want people with disabilities to get jobs, then you don’t cut the health care that allows people to stay well enough to work,” said Silvia Yee, public policy director at the Berkeley-based Disability Rights Education and Defense Fund. “You don’t cut the services that help people with disabilities navigate hiring and settling into a job.”

Besides Medicaid changes, Yee noted that the One Big Beautiful Bill also failed to extend subsidies for people who bought health insurance through Affordable Care Act marketplaces like Covered California. Many people with a disability or chronic illness have an ACA insurance plan and will have to pay more to receive necessary care.

“These all seem like different cuts, but they affect the same pool of people,” Yee said. “All of this together makes it incredibly hard for people with disabilities to participate and live as part of the community.”

‘The weight of carrying out disability justice’

The future can quite often feel precarious when you’re disabled, said Sandy Ho, one of Wong’s closest friends and executive director of the Disability and Philanthropy Forum. Ho, originally from Boston, met Wong 15 years ago online. They didn’t meet in person until Ho moved to Oakland, but the bond of their friendship endured.

“There are always forces trying to take away our health care, and Alice understood that on a level that emboldened her to just say, ‘F— it all, either you’re with me, or you’re not,’” said Ho, who Wong tasked with carrying forward some of her unfinished projects, including her next book.

“So many of us got to witness her life and be a part of it on so many different levels,” she said, adding that Wong loved organizing dinner parties for her friends, bringing together artists, organizers, researchers and health care workers. “She is our future — the future looks like getting fed really well because disabled people deserve delicious things. Disabled people deserve joy, to have fun and create.”

This year also saw the death of another leader in the disabled community: Patty Berne — co-founder of the Bay Area-based performance group Sins Invalid and one of the minds behind the disability justice framework — died last May in Berkeley.

“One of the things that I have unfortunately experienced a lot in the disability community is grief,” said Rosemary McDonnell-Horita, a Berkeley-based writer who was a friend to Wong and Berne. “The depths of love also come with the depths of grief.”

Campaigns both online and in Sacramento are already underway to protect Medi-Cal funding that serves disabled Californians. Other friends of Wong are continuing her call to help provide disabled Palestinians in Gaza with cellular data. And McDonnell-Horita plans to keep working on a project that Wong loudly cheered: a cookbook for disabled people by disabled people.

“We all now bear the weight of carrying out disability justice to the best of our ability,” she said.