On the Oracle Alice Wong, Disability, and Community

A sign that reads, “Community is Strength. Be Strong. Let’s look out for one another.” — Credit: John Cameron on Unsplash

My fiancé left me a few months after I recovered from COVID-19. Recovered is probably the wrong word. I could remember my birthdate again. I no longer spoke nonsense when I opened my mouth. My fever went down and the emergency brain MRI my doctor had ordered, fearing a stroke, looked normal.

Over the subsequent months and years, long COVID worked its way through me in more subtle ways, ways that were easy to dismiss and hard to explain, even to the people closest to me.

I had a headache every day but it was a strange feeling, not a pain so much as an insistent tenderness, like someone was pressing on a bruise or tightening a band around my head. I got winded walking up stairs. I forgot why I had come up the stairs in the first place.

That summer, I returned to the university campus where I have taught teenagers at a creative writing camp every year for decades—the same college I attended. It’s a small campus in a small town. I know it intimately. And I got lost walking to the cafeteria, couldn’t trace the path in my mind or explain to the students how to return to the dorms. I know I said the wrong word sometimes in class. Other times, I couldn’t think of the word I wanted at all.

For a writer, a person who makes her living—who makes her life—with words, this was a nightmare.

Exposing Truths

Alice Wong warned us. The MacArthur “Genius Grant” winner, who was born with a neuromuscular disability, died on November 14 at the age of 51, following an infection. Wong was the author of a memoir, Year of the Tiger: An Activist’s Life, and editor of the anthology Disability Visibility. At the time of her death, she was working on an anthology focused on the impact of COVID on the disabled community. Titled Disability Vulnerability, it’s slated to be published by Vintage in 2026.

Last year, she started the series The Color of Long COVID with the independent journalism outlet The Sick Times, devoted to telling the stories of people of color living with long COVID.

According to a 2025 report from the World Health Organization, about six in every 100 people who have COVID will develop a post-COVID condition, characterized by a host of varying symptoms including fatigue, muscle pain and weakness, brain fog, shortness of breath, and insomnia. Women are more likely to get long COVID than men, and research shows that BIPOC individuals face greater post-COVID health burdens.

Disabled people know that caring about the collective is the whole point.

Wong wrote in September 2020 for Teen Vogue, “The pandemic has exposed a number of truths: The nation’s infrastructure is inadequate, leadership from the White House is responsible for the preventable deaths and suffering of hundreds of thousands, and some people, including Black, brown, Indigenous, disabled, older, immunocompromised, and those who are overweight, are viewed as disposable and less worthy of care.”

The first term of the Trump administration is regarded by some now as “practice” for the more wide-reaching, disruptive second term. So too the onset of the pandemic served as yet another indicator of how Trump would treat those who are disabled, aging, immigrants, people of color, or paid lower incomes. Now, with targeted policies and executive orders espousing ideologies from anti-vaccine to anti–gender affirming care, combined with cuts to assistance programs and Medicaid, the disabled community is in danger of losing even more people.

As Matthew Rozsa wrote in NPQ about the impacts of the Trump administration’s anti-disability agenda, “As a person on the autism spectrum myself, I can confidently say that without the assistance of allies like sympathetic nonprofits, millions will struggle to survive.”

At a time when government policies are actively attacking the lives of disabled people and many others, we need community more than ever.

“Care Is Not a Checklist”

For years, I had struggled with breathing issues: chronic bronchitis, and a nebulous cough that was repeatedly tested but found not to be asthma. I feared if I ever contracted COVID, it would go for my lungs.

It did not. It went for my brain. It was 2023. The virus started for me with a lower-back ache so severe I struggled to get in the car. The flu, I thought. I was vaccinated against both flu and COVID, but it had been a few months since my last booster.

Then the headaches began, but I was prone to those anyway.

One night, I had a seizure.

The next night, it happened again.

I tested positive for COVID on February 14, 2023. “Happy Valentine’s Day,” my doctor joked. It was the last one I would spend with my fiancé.

More studies are needed on the “gender care gap” and the uneven distribution of unpaid labor between men and women, but in times of severe illness and disability, the outlook for women’s relationships like mine is not great. A 2009 study published in the medical journal Cancer reported that over 20 percent of female cancer survivors and MS patients became divorced or separated while only 2.9 percent of male survivors or patients did.

Coming out as disabled meant coming into community for me.

A 2024 survey from the University of Florence, which polled 25,000 heterosexual couples in Europe, reported similar results, noting “when the male partner has poor self-rated health or activity limitations, but the female partner is healthy, the risk of union dissolution remains similar to that of healthy couples. However, if the female partner has poor self-rated health or activity limitations, and the male partner is healthy, the risk of union dissolution increases significantly.”

This risk of dissolution decreased as couples aged. In other words, younger women who became less able-bodied were more likely to lose their intimate partner relationships.

“Care is not a checklist of tasks and responsibilities. Care is a shared value and actions operating in a larger political context within a hypercapitalist, racist, ableist society that devalues certain types of labor and bodies,” Wong wrote in a 2023 essay about being reliant on caregivers after a long stay in the ICU.

Those caregivers were paid, but likely not enough, according to Wong and the research, which notes that caregivers are often paid below minimum wage and the job is overwhelmingly done by women, especially women of color. More than half of unpaid caregivers are also women.

Caregiving is in crisis, and COVID exposed it plainly, as it did so many inequities. The pandemic also revealed how much Americans deceive others and themselves, including that the deadly, worldwide virus never happened to begin with.

Stacy Peterson said in an interview with her wife Heather Hogan, who lives with long COVID: “We’re constantly being gaslit, constantly being told Covid is over, or not that serious, or there’s nothing we can do to curb the spread, or that we can but it’s not our responsibility to care about the collective. And that’s on a large scale.”

“Only as Strong as Our Community”

Disabled people know that caring about the collective is the whole point. And for Wong, it was always intersectional. The book Disability Visibility arose from an online community she founded. She mobilized her network to raise over $3 million in donations for people in Gaza, coordinating efforts with other grassroots disability and social justice groups. She fostered alliances with other activists.

Wong wrote in Disability Visibility:

The story of disabled success has never been a story about one solitary disabled person overcoming limitations—despite the fact that’s the narrative we so often read in the media. The narrative trajectory of a disabled person’s life is necessarily webbed. We are often only as strong as our friends and family make us, only as strong as our community, only as strong as the resources and privileges we have.

Part of the reason my infection lingered may have been because I didn’t have the luxury of rest. It certainly didn’t help. I felt I had to return to work again (remotely) almost immediately, taking only one day off. Nobody else at my then workplace had taken much time off when they had COVID, so why would I?

That’s one of the insidious aspects of COVID. The virus decides you’re special. You’re the one marked in your office or family or class. The rest of my household was fine, thankfully, with no symptoms, if they had the virus at all.

But in the absence of a shared experience, I felt adrift. What kept me going were daily messages from friends. Once I became vulnerable and publicly shared my struggle, the messages flooded in from people in my network who had dealt or were dealing with long COVID.

“I’m honored to be your ancestor and believe disabled oracles like us will light the way to the future.”

Every morning, after yet another feverous night of little sleep, I woke to another text. Every time I reached out to a friend, they responded instantly, answering my questions, offering advice I asked for, and just listening. The security of my home life was dissolving, but the community of friends and fellow disabled people was starting to knit together into something strong.

When I felt well enough, I returned the care, starting my own daily check-in messages to others in the thick of long COVID, offering advice only when asked, and just being a listener, someone who believed them.

I first encountered that kind of community when I became a mother. I was in the middle of an academic program; most of my friends at the time were childless. There’s nothing like young single parenthood to isolate you. The friends who stuck around were chronically ill, disabled, or immunocompromised. They understood having to cancel at the last minute or the need to be flexible: to take a walk outside with my baby instead of going to a restaurant, for example. They introduced me to the concept of spoons.

I learned to reserve my time and energy for what mattered—and the thing that mattered most was community.

Wong wrote of wishing she had found community as a younger person but realized her own internalized ableism would have prevented those connections.

“At the time I was filled with internalized ableism: a deep sense of shame and self-consciousness about being disabled,” she wrote in Teen Vogue in 2025. “Even as a disability rights activist, it’s only been in the last few years that I’ve slowly started to identify as someone with chronic pain and a member of this community.”

Coming out as disabled meant coming into community for me. First, when I started writing openly about my deafness. And later, when I became vocal about my long COVID. When the risk is being vulnerable and personal, the reward is often connection: other people sharing in your experience. For Wong and others, particularly immunocompromised people, that community can and did come from access to the internet.

“I love you just about as much as a person can love a stranger online that they’ve never really talked to,” one commenter wrote on an essay by Heather Hogan about her long COVID.

There are 131 similar comments below the piece, in which Hogan wrote:

What if I’m not disabled enough to use the word “disabled?” I’m a person with a huge platform; what if I talk about disability in the wrong way, or miss the mark on my advocacy because it’s (shamefully, mostly) new to me? What if I hurt people who are already hurting with my naïveté, or accidentally dishonor the work of the queer disabled activists who came before me, some of whom I love and cherish as dear friends? What if I can’t find the balance between hope and acceptance?…I’m scared, but I’m alive. I’m scared, but I’m not broken.

“Online communities have filled a void in my life,” Wong wrote in Teen Vogue, “giving me a platform to share my story and a way to connect with people all over the world. Using social media has become my primary form of organizing and sharing information, which is also a form of advocacy.”

In the wake of Wong’s death, that advocacy continues. The Disability Visibility community she founded publishes original articles, partners with other groups for voting rights and disability justice issues, and supports disabled creators telling their oral histories.

Wong’s impact on policy included, as Rebecca Cokley wrote in The Nation, “everything from the need to strengthen existing policies like the Americans with Disabilities Act and the right to access home and community-based services, to accessible currency and the right to higher education.”

Yet Cokley argued, as we are witnessing today with the Trump administration’s rollbacks: “America’s systems, structures, and policies were not ready for Alice Wong.”

The rights of disabled people, including children, are being increasingly threatened under policies and orders, and though the disability community continues to fight, as Cokley wrote, “we need non-disabled people and allies to speak out.”

I still have difficulty sleeping and sometimes search for the right word. I make typos now, which I never did pre-COVID. I revise everything using a screen reader, which adds hours onto my writing time. Sometimes what keeps me up at night is the shock of facing an uncertain future without a partner, to be going into the second half of my life unexpectedly alone.

Then I remember I am not alone—and never will be.

Wong’s last written words to her vast community were: “I’m honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don’t let the bastards grind you down. I love you all.”