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, spurring my disability rights activism.

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. Disability rights activism provided a respite and a community.

Disability Rights Activism: Exposing Truths

Alice Wong, a prominent disability rights activist, 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.

Read the full article about Alice Wong’s legacy by Alison Stine at Nonprofit Quarterly.