Experts are comparing the long-term fallout from COVID-19 to the societal impact of polio, HIV, and World War II, The Washington Post reports. During the last few years, disabled people have coalesced around a shared identity, resisting their long history of marginalization. With strength in numbers, patients and advocates are changing the nation’s perspective on disability care.*

People with Disabilities Unite

With the rapid rise of Long COVID, the disability community has taken an inclusive “big-tent” approach, but it hasn’t been easy. Disability advocacy groups have long clashed over limited resources, and tensions flared once again when people with similar symptoms and disabilities, like chronic fatigue, began seeing coveted research dollars directed toward Long COVID, after decades of having their own advocacy efforts ignored. 

Fortunately, these groups have learned to work together, which has helped advance solutions to long-standing issues. Mia Ives-Rublee, director of the Center for American Progress’ Disability Justice Initiative, says her group is at a critical juncture of public education about disability and structural inequalities. The pandemic has brought structural inequality to the forefront.

Recognizing Disabled People

Data for Progress is a social justice think tank committed to getting policymakers to recognize disabled people like any other voting bloc. A recent poll showed that 70% of disabled people believe Washington doesn’t care about their plight. 

Another analysis found that disabled people are more than twice as likely as non-disabled people to live in poverty, three times as likely to be food insecure, and earn about $.26 less for every dollar nondisabled people make.

Many people want to see economic improvements for disabled people, like investment in services that support independent living. Thanks to the pandemic, disability support seems to be gaining legislative traction, with Long COVID being recognized in 2021 as a disability that’s coverable under the Americans with Disabilities Act (ADA).

A Broad Definition of Disability

Prior to the pandemic, the CDC reported that up to 61 million American adults have a disability. Now, Long COVID is adding another 23 million people to the ranks, with nearly a million of those being unable to work. 

The ADA includes anyone with a severely limited major life activity caused by a physical or mental impairment. “One of the things that is so beautiful about disability is it is big enough to include children in Flint, Black women with alopecia, and Long COVID,” said program officer Rebecca Cokley of the Ford Foundation’s disability rights program.

That said, while Long COVID numbers are expected to rise, not everyone with the condition qualifies for benefits under the ADA. Cokley says her community’s focus is on helping Long COVID patients get the benefits they need. 

‘A Different and Important Face’ on Disability Issues

The pandemic has also highlighted long-standing inequities in care for disabled people compared to other marginalized groups. For example, electronic health records often lack disability information that could support policymaking.

Still, Ken Thorpe of the Coalition to Fight Chronic Disease believes Long COVID presents a unique opportunity to change health policy on disability and long-term care. With “a different mix of people,” including high-profile Long COVID patients like Senator Tim Kaine (D-VA), Thorpe believes “we can be more effective highlighting the policy issues.”

Hope for the Future

Besides welcoming long-haulers, disability groups will need to overcome internal strife over limited resources, and there is evidence of progress being made. In the disability community, people like Lisa McCorkell, who helped found the Patient-Led Research Collaborative, are hopeful about the future. 

“The benefit of millions of people getting sick all at once,” she says, “is we have remarkable access to people and power that others have struggled to get for a long time. I want to make sure that I am representing those people.”

*Stead Sellers, F. (2022, June 6). How long covid could change the way we think about disability. The Washington Post. https://www.washingtonpost.com/health/2022/06/06/long-covid-disability-advocacy