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Mallory Stanislawczyk was hesitant to make the call. She hadn’t spoken to her friend in years. But the friend, who gets around in a wheelchair, was the only person the 34-year-old nurse practitioner could think of who would understand her questions. About being ready to accept help. About using a wheelchair. And about the new identity her battle with long covid had thrust on her.
“I think she is the first person I said to, ‘I’m disabled now,’” Stanislawczyk recalled telling the friend. “‘And I’m working on accepting that.’”
The coronavirus pandemic has created a mass-disabling event that experts liken to HIV, polio or World War II, with millions suffering the long-term effects of infection with the virus. Many have found their lives dramatically changed and are grappling with what it means to be disabled.
“It’s an entirely new identity,” Stanislawczyk said.
The dramatic influx of newly disabled Americans changes the calculus for disability advocates, who have in recent years been uniting around a shared identity, pushing back against historic marginalization by affirming their self-worth and embracing their disabilities.
“We’re taking a big-tent approach in the disability community,” said Rebecca Vallas, a senior fellow at the Century Foundation.
The shift also underscores the challenges of creating common cause among people who have sometimes battled over limited resources. Those tensions resurfaced as some who share similar symptoms with covid long-haulers, including persistent fatigue, saw research dollars pour into long covid.