With her #PodSaveJon campaign, she helped deliver one of the Long COVID movement’s best moments
In September 2024, I got a text from Alice Wong. She asked if I would give a short speech about her work at the 10-year anniversary party for the Disability Visibility Project — the online community she founded dedicated to creating, recording, sharing, and amplifying disability culture, stories, and media. I immediately laughed. She clearly meant to text someone else.
I reread and saw she had addressed me by name. Was she serious? I had just met Alice a year before, and though we’d quickly become good friends and worked on a few actions together, including both speaking at a Keep Masks in Healthcare protest in San Francisco, she was a MacArthur Genius who had met Obama … and I just yell at people on Twitter. She noted she wanted the perspective of someone new to the disability community, and I also suspect she was trying to strengthen the connection between the greater disability and Long COVID communities — something she was a champion for.
Of course, I agreed to give the speech. I was incredibly nervous, but it was the honor of a lifetime to speak about Alice’s work among other disability justice luminaries. I also wanted to share with her community the incredible work she had done for those with Long COVID, which was often behind the scenes.
And now, in the wake of her passing and her recent celebration of life, I’d like to share with my community how she taught me the power of Disability Justice and how she wielded it to take our Long COVID movement to one of its best moments.
This all started right before I first dove into Alice’s work in 2023. After a few years of constant Long COVID advocacy and sharing thousands of compelling facts, figures, and stories, otherwise good and reasonable people still remained completely unfazed by the threat and scale of this public health crisis. It became clear the cavalry was not in fact coming. This led me to reflect more on the social and systemic undercurrents that make Long COVID so difficult to grapple with — things like perception of chronic illness, attitudes toward invisible disabilities, and ableism at large. I realized attitudes around conditions like Long COVID were not likely to change until these greater forces did, and I found Alice and the Disability Visibility Project at the front lines fighting to make that happen.
Her book Year of the Tiger was the perfect introduction into the disability landscape — full of grace, wisdom, humor, and inspiration. It does a remarkable job connecting the Disability Justice terms I found daunting to the bread-and-butter challenges newly disabled people face. And at a time when many in the disability community were expressing hesitancy and frustration with the deluge of new and loud waves of disabled people created by this ongoing pandemic, Alice signaled her unconditional support and showed a place for us in the community.
An excerpt from the book reads: “I think a lot about these multiple waves of people whom I consider part of the disability community — people who are called ‘longhaulers’ because clearly, recovery from COVID can be a lifelong process.” She also wrote, “Disability pride and identity took a long time to develop … I had to acknowledge the messiness, shame and internalized ableism that will always be part of me.”
I later realized this grace and patience for herself and newly disabled people came in part from a piece of wisdom she often shared with me in other words: “It takes time to work through your shit,” which I found liberating and affirming.
After reading the book, I sent her a thank-you on Twitter. She responded, “It’s so nice to know other disabled people in the Bay Area,” and kindly invited me for tea shortly after. We quickly became friends and bonded over one of our favorite pastimes: talking a lot of shit!
In reading her work and getting to know Alice, I felt reoriented and reinspired. I remained determined to keep fighting for better care, recognition, and support for people with Long COVID but realized I didn’t have to mortgage my self-worth in the process. Alice showed me I can lead a meaningful life — and be cool doing it — while sitting with my pain and limitations. And while we, sick and disabled, channel our rage back at those trying to ignore and erase us.
Alice showed me I can lead a meaningful life — and be cool doing it — while sitting with my pain and limitations. And while we, sick and disabled, channel our rage back at those trying to ignore and erase us.
Alice and I also talked about the disconnect and tension that existed between Long COVID, disability, and COVID-cautious communities. Alice remarked, “Maybe we could do something about that.”
Lo and behold a few weeks later, in late 2023, Alice seized an opportunity to unite and organize these three communities in her now-infamous and internet-breaking #PodSaveJon Twitter campaign, which was an effort to fight back against narratives minimizing COVID. This started after Pod Save America’s Jon Favreau mocked us for expressing outrage after Senator Bernie Sanders announced he would continue working through a COVID infection — lamenting the lost opportunity to educate people about the ongoing threat of Long COVID and the lack of protections for disabled and immunocompromised people.
Up until this point, I had heard and read about Alice as a legendary online organizer, but I had yet to see it in full force. And what unfolded was a Jedi-like maneuver the likes of which I had not seen during my four years on that hell site. She channeled a boiling point of disabled rage into remarkable action, and inspired thousands of people to use the hashtag to educate our progressive leaders about Long COVID — and how we had been abandoned by them.
It was fun. It was inspiring. It was effective. The Long COVID, disability, and COVID-cautious communities were working together, sharing their stories, and learning from each other — and countless others outside our bubble were reading and learning about this for the first time. This alone was a huge win. Alice messaged me, “This felt good, right?”
What is less known about this campaign is it actually helped push Senator Bernie Sanders to host the first Long COVID Senate hearing just weeks later. This was a huge deal, as up until this point, he had not even mentioned the term publicly. We found out he had been talking to a constituent with Long COVID for some time, but a congressional staffer later admitted that the “recent online discussions” had moved the issue up in priority in their office.
The first, and completely packed, Long COVID Senate hearing was held three weeks after #PodSaveJon. And this momentum carried into Senator Sanders introducing the Long COVID Research Moonshot Act — based off an op-ed written by Long COVID patient-researcher and advocate Lisa McCorkell of the Patient-Led Research Collaborative and University of California, San Francisco COVID researcher Michael Peluso. And later that year, in October 2024, a companion bill was introduced in the House by Representative Ilhan Omar.
Through all of this, Alice was able to organize these communities to turn a hashtag into real results from our progressive leaders and help deliver our best advocacy moment (yet). She demonstrated solidarity in action in a creative way that also brought communities closer together. And she proved again that online activism isn’t pseudo-activism, and that we can be just as effective advocating from our beds online as we can marching in the streets.
Alice welcomed our hurting but boisterous Long COVID community at a time when not many others did. And she continued this work until she passed away. She invested in our community by funding a Bay Area Long COVID birding club founded by science writer Ed Yong, called the Spoonbill Club. She invested in our story by providing significant contributions, including funding a series of essays from people of color with the disease, to The Sick Times. And of course, she protested for keeping masks in healthcare with myself and hundreds of others in the streets of San Francisco.
Alice Wong taught us the power of Disability Justice, and the values behind the principles of cross-movement organizing and cross disability solidarity, not by telling us — but by showing us our advocacy is more effective, and will go further, with it.
One way we can honor Alice’s legacy is by continuing to build coalitions and understanding that all our struggles are tied. Or in other words: working together. It’s difficult work that few people do, but Alice did it gracefully.
So I encourage all of us to hold the values of Disability Justice close, and strive, as Alice did, for a broader, connected community fighting for dignity, care, and equity.
One way we can honor Alice’s legacy is by continuing to build coalitions and understanding that all our struggles are tied. Or in other words: working together.
Editors’ note: This piece is adapted from a speech the writer gave at Alice Wong’s Celebration of Life on March 25, 2026.
Charlie McCone is a San Francisco–based Long COVID patient advocate and nonprofit professional with a background in marketing, communications, fundraising, and organizing. He is a member of the Patient-Led Research Collaborative, and his Long COVID advocacy efforts have been featured in The Washington Post, The Atlantic, Time, and PBS, and in written pieces featured in The Guardian, San Francisco Chronicle, and STAT.
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