Alice Wong, a visionary disability justice advocate whose writing helped people understand what it was like to live with a disability, died of an infection Friday at a San Francisco hospital. She was 51.

“I did not ever imagine I would live to this age and end up a writer, editor, activist and more,” Wong wrote in a posthumous message on social media. “We need more stories about us and our culture. You all, we all, deserve the everything and more in such a hostile, ableist environment.”

Wong was born with muscular dystrophy. She used a powered wheelchair and a breathing device and said doctors had not expected her to live past 18. 

Her early experiences navigating medical and social barriers shaped her life’s work — turning personal struggle into a public campaign for equity, visibility and change.

Rooted in San Francisco’s vibrant disability justice movement, Wong pushed to reshape how the Bay Area — and the nation — understood equity, spotlighting barriers to access in the city’s universities and restaurants.

When Bay Area coffee shops moved to ban paper cups, Wong told the Chronicle how the decision would burden those in the disabled community with limited mobility or decreased sensation in their hands. For them, glass and ceramic mugs were often too heavy and slippery.

Wong also worked to establish accessible resources for disabled students at UCSF, where she earned a master’s degree in medical sociology in 2004 and later worked as a staff researcher for more than a decade. 

She had moved to San Francisco in 1997 to attend the university, which at the time, she said, didn’t have any accessible places for her to live. The university built her a one-room unit in the garage of a professor’s house, Wong said in her memoir, “Year of the Tiger: An Activist’s Life.” She worked with UCSF’s Office of Student Life to change access for disabled students. 

Wong said she struggled at university and pushed off work for her classes. Around 2001, she stopped being a student before returning to finish her degree. Years later, Wong said one of her professors apologized, saying he was sorry the department hadn’t done more to support her. 

“Disabled people have resisted for millennia efforts to eliminate us and erase our culture,” Wong said in 2024 during an alternative communication research summit. “Doctors told my parents I wouldn’t live past 18, so I grew up never imagining what grownup old ass Alice would look like, and this is why visibility, being able to tell our stories and controlling our own narratives, is why I do what I do.”

The founder of the Disability Visibility Project, which collects oral histories of Americans with disabilities in conjunction with StoryCorps, Wong has been at the forefront of chronicling how COVID and its unparalleled disruption of lives and institutions have underscored challenges that disabled people have always had to live with.

Though Wong often jokingly described herself as an “angry disabled Asian girl,” she brought sharp humor and insight to her activism. In “Disability Visibility: First-Person Stories from the Twenty-First Century,” she edited authors exploring inequities within the disabled community and how society values certain bodies over others.

“There is a cyborg hierarchy,” disability activist Jillian Weise wrote. “They like us best with bionic arms and legs. They like us Deaf with hearing aids, though they prefer cochlear implants. It would be an affront to ask the Hearing to learn sign language. Instead they wish for us to lose our language, abandon our culture, and consider ourselves cured.”

Wong wrote about her own experience transforming into what she calls a cyborg in an article for Literary Hub.

“Doctors advised me to get spinal fusion surgery when I was around twelve, but I was too freaked out by the thought of it because it was a serious-ass procedure,” Wong wrote. “By eighth grade my parents told me I was near the final window for this surgery, which could improve my breathing and alleviate the deep fatigue I experienced every day. I relented — with no idea how it would turn me into a cyborg inside out.”

Wong’s achievements brought national recognition. In 2013, then-President Barack Obama selected her for a two-year seat on the National Council on Disability, which advised Congress and the president. In 2024, she received the prestigious MacArthur Foundation genius grant.

It was also the year, after decades of sharing a home with her parents, she moved into her own apartment in San Francisco with her cats, Bert and Ernie, according to the New York Times.

Wong is survived by her father, Henry, and her mother, Bobby, both immigrants from Hong Kong, as well as her sisters, Emily and Grace Wong.

For many of us, focusing on a task is difficult when we’re working in a chaotic, disorganized space. Cluttered room, cluttered mind as they say.

The same is true for the government. When you have rules and laws that are messy and conflicting, solutions to intractable problems can easily become obscured by towering piles of bureaucracy.

Here in San Francisco, our rule books are a hoarder’s house of clutter.

San Francisco’s charter is akin to a constitution — it outlines central rules and principles for governing our joint city and county. But over decades, this document has become filled with so much legal ephemera that it now spans 548 pages — the longest of any city in the country.

By way of comparison, Seattle’s charter is only 23 pages.

Unsurprisingly, this has led to less-than-ideal outcomes. 

Among them: A literally uncountable number of commissions, including commissions that oversee departments that no longer exist, a lack of clarity over who’s responsible for what and unnecessarily complex and opaque processes that breed corruption.   

This mess is largely San Francisco’s own creation, which means the city needs to do the vast majority of the work to clean it up. The law dictates there’s no way to fix these bloated rules without a ballot initiative.

That effort is already underway.

Voters passed Proposition E last November, which ironically created a new commission to evaluate existing commissions and recommend which could be combined or shuttered. The Prop E committee is scheduled to release its recommendations to Mayor Daniel Lurie and the Board of Supervisors in February. Prop E also requires these recommendations to be placed in a draft charter amendment that will go through the typical legislative process at the Board of Supervisors before being sent to voters in a likely November 2026 ballot measure. 

But commission reform is only one necessary component of overhauling San Francisco’s charter. Larger changes are needed — and they form the heart of a report released Monday by the urban think tank SPUR. 

The report, dubbed “Charter for Change,” makes 10 key recommendations that SPUR argues should also be incorporated into the November 2026 ballot measure.

Many of the recommendations reinforce those SPUR made in a similar report last year that focused on improving San Francisco’s governance. For example, the group argues the mayor should be given the authority to hire and fire most department heads.

Some will no doubt cry foul over the idea of expanding executive power — especially after the fiasco this week with the resignation of Mayor Lurie’s pick to fill the open District 4 seat left by the recall of Joel Engardio. But this is nevertheless a common-sense suggestion.

San Franciscans largely hold the mayor responsible for the state of the city. Under the charter, however, the mayor has unilateral authority to appoint just four of the more than 50 department heads and lacks explicit authority to fire some of them.

Citizens have limited ability to hold their government accountable when power is spread out over diffuse boards and nominating commissions. But when the mayor controls departments, you know who to vote out when things aren’t getting done.

SPUR also suggests empowering the city administrator by turning the position into a chief operating officer focused on essential city operations, long-term projects and reforming San Francisco’s byzantine purchasing rules.

None of these changes will mean much, however, if we continue to expand our monstrous rule books with ultra-long, complex ballots that give voters the chance to add even more clutter. 

Right now, it’s too easy to place measures before voters. Non-charter amendments can be put on the ballot unilaterally by the mayor, with only 4 of 11 Board of Supervisors votes and by any group that collects signatures from 2% of registered voters.   

These low thresholds invite political posturing and disincentivize thoughtful policymaking. In 2022, for example, then-Mayor London Breed and progressive supervisors placed two competing housing measures on the ballot instead of finding a legislative compromise. Unsurprisingly, confused voters rejected both measures. And last year, Prop E was — ironically — one of two competing commission-streamlining measures on the ballot; voters rejected the alternative, Prop D. 

SPUR recommends raising the threshold for non-charter amendment ballot measures: The Board of Supervisors would need a majority vote, the mayor would need board approval and groups would need to gather signatures from 5% of registered voters, a percentage in line with other charter cities.  

What about proposals that would amend the charter? 

To keep San Francisco’s charter from getting even more clogged, SPUR proposes raising the threshold for putting charter amendments on the ballot. Right now, it can be done by a majority vote on the Board of Supervisors or by groups that gather signatures from 10% of registered voters.  

SPUR wants to see the signature-gathering requirement pushed to 15%, and it also wants to empower the mayor to veto a charter amendment proposed by a board majority — although the board could then override that veto with its own supermajority vote. 

These changes, however, would require a tweak to state law. We’re hopeful that one of San Francisco’s state lawmakers will take up the cause in Sacramento. 

Far from diluting voters’ power, the tweak would bring San Francisco in line with other charter cities in California — while also accounting for our unique status as the only joint city and county in the state.  

Other large charter cities and major economic centers in California — such as Los Angeles, San Jose and San Diego — require groups to gather signatures from 15% of registered voters to place charter amendments on the ballot.  

But San Francisco is also the only California city and county governed simultaneously by a mayor. Given this distinctive setup — and the unique responsibility it confers on the mayor — it makes sense for the mayor to play a role in shaping charter amendments. 

The state should do its small part to help San Francisco improve its governance. That said, California cannot save San Francisco from itself. If we want to clean up our system of governance, we’ll have to do it ourselves. 

Some version of charter reform will be on the ballot next year.

Can our leaders set infighting aside and craft a comprehensive measure to meaningfully improve our charter? And, if so, will residents be willing to relinquish some of their power of direct democracy so that the city can function as smoothly as they insist they want it to?

The California Legislature can’t answer that question. Only San Francisco can. 

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