Tinu Abayomi-Paul, writer, disability advocate, and person with Long COVID, dies at 52

Atinuke “Tinu” Abayomi-Paul, a prominent writer and disability advocate, died on September 26 at home in Texas. She was 52.

Abayomi-Paul was well known in the Long COVID and disability community for her writing, speaking, and mutual aid organizing. She was the founder of Everywhere Accessible, an advocacy organization which she launched in 2019 to educate the public about accessibility and center the experiences of Black disabled women.

In 2022, she was hospitalized with COVID-19, leading to COVID-induced pneumonia. She later developed chronic lymphocytic leukemia, as well as Long COVID, myalgic encephalomyelitis (ME), and other chronic illnesses. 

She recently spoke with The Sick Times about her experience with extreme heat and postural orthostatic tachycardia syndrome (POTS).

“My fear for the future is that those of us who cannot tolerate the heat will die,” she said. “Another fear I have is that no one will listen.”

Abayomi-Paul frequently wrote about and helped break stigmas about immunocompromised people. She centered the experiences of the most marginalized, who were left behind in the government’s failed response to the continuing COVID-19 pandemic. 

“I hope my story humanizes the experience of having COVID for people,” she wrote in an essay following her hospitalization. “Those of us at high risk aren’t abstract people you’ve never met. We’re people you know and love, and we might die because you won’t wear a mask.” 

Over the past week, friends, family, and members of the disability community have written tributes to Abayomi-Paul for her leadership, care, and community building. 

“She had such giggly personality, but was often so tired from just trying to stay afloat,” disability advocate Imani Barbarin wrote on Twitter/X. “Still, she loved this community and consistently felt like she wasn’t doing enough. Tinu, you were enough.”

“She gave so much of herself and cared about the disability community deeply,” Alice Wong wrote. In another tribute, Sarah Reneé stated that she “advocated with spoons she didn’t have not just for herself, but the entire community.”

“Many of us owe our lives and the evolution of our politics to disabled Black women like [Tinu] and [Shafiqah Hudson],” writer Clarkisha Kent posted. 

Like Abayomi-Paul, Hudson died while battling Long COVID and cancer. Hudson passed in February 2024 at an extended-stay hotel in Portland, Oregon; she stated before her death that if she died, Long COVID was the cause.

Abayomi-Paul’s cause of death has not been stated. She wrote on August 3, 2024: “People not masking is literally killing me… If I do die, this is what killed me, people not masking or believing Long COVID lowers your immunity…”

While research has extensively documented the disabling symptoms and scope of Long COVID, science and health institutions have paid less attention to the disease’s potentially deadly consequences. 

The Centers for Disease Control and Prevention reported in early 2024 that over 5,000 Americans have died with Long COVID since the start of the COVID-19 pandemic, but experts say this number is likely a significant undercount. Along with improved reporting standards, people with Long COVID need immediate support to prevent further fatalities, experts and advocates say.  

Abayomi-Paul’s family and friends are currently fundraising for her funeral, medical expenses, and other costs. They are also planning a service — the date has not yet been released.

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