Condition emerges as mass-disabling event, with millions suffering prolonged effects and vying for limited resources
Mallory Stanislawczyk was hesitant to make the call. She hadn’t spoken to her friend for 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.
“There were resentments,” said Diana Zicklin Berrent, who founded the long hauler advocacy group Survivor Corps. “It was, ‘We’ve been out here screaming from the rooftops for decades, and you guys show up,’ ” said Berrent, who emphasizes the importance of working together.As many as 61 million, or one in four, adults live with some form of disability, according to the Centers for Disease Control and Prevention.
“Because of stigma and stereotype, things often go undiagnosed and untreated in the Black community,” said Andraéa LaVant, a wheelchair user who is Black and was a producer of “Crip Camp,” responsible for the social change message of the 2020 Netflix documentary that helped draw popular attention to disability rights.
For Stanislawczyk, her new identity is complete with its own vocabulary. In conversations with other long haulers, Stanislawczyk now calls herself a “spoonie,” referring to a common strategy for managing chronic illness, in which spoons are used to represent energy — people may say, for instance, that they have a limited number of “spoons” to use per day, or that it may take them more spoons for certain tasks than it would for other people.
That approach is promoted by Cokley, who said there had been a generational change since the 1980s, when many people with HIV felt shunned. The American Rescue Plan was the first relief bill that provided direct support for programs that assist people with disabilities, with specific funding such as a one-year increase to Medicaid for home- and community-based services. The now-defunct Build Back Better bill took a much more comprehensive approach to disability in the development of programs and policies.
The big-tent approach depends not only on disability groups welcoming long haulers, but overcoming internal rivalries. Cokley and others said the chronic illness and disability communities have not always been allies. Still, people whose lives have recently been changed by chronic disease sometimes resist the idea that they belong in the disabled community.
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