Disability rates rose sharply during the pandemic. Long COVID is largely to blame

COVID-19 has changed the landscape for disability rights, an issue that is already far too neglected in society

By Matthew Rozsa

Staff Writer

Published July 30, 2023 10:00AM (EDT)

Participants holding signs demanding subway accessibility in Brooklyn, New York. (Erik McGregor/LightRocket via Getty Images)
Participants holding signs demanding subway accessibility in Brooklyn, New York. (Erik McGregor/LightRocket via Getty Images)

Michael was a 46-year-old Black man, Marcie Roth recalled to Salon, and his life was destroyed following a heart attack.

Roth is the executive director and chief executive officer of the World Institute on Disability, an international nonprofit center on public policy. As she recalled Michael's story, her voice was filled with emotion. Michael's heart attack had nothing to do with COVID-19, but because it left him disabled, he was sent to a nursing home. While there, he developed a COVID-19 infection, so the nursing home sent him to a hospital. That is where ableism reared its ugly head.

"The hospital made a decision that they were going to deny care because of Michael's disability."

"The hospital made a decision that they were going to deny care because of Michael's disability," Roth told Salon, who added that his race also appeared to be a factor. "They were having good conversations. Their family was very involved, and all of a sudden, he was determined by the hospital to be not worth treating."

Instead they moved him from the intensive care unit to hospice care. "His wife recorded the conversation, but essentially, they said to her, 'Do we want to be extremely aggressive with his care, or do we feel like this would be futile?" Roth said. Because Michael was paralyzed and had a brain injury, the doctors insisted he had a low quality of life.

"Ultimately the hospital was limiting his care even though they didn't have a large number of patients with COVID," Roth concluded. "I guess they decided that he couldn't survive further treatment, and then a guardian signed off on withholding his care. That guardian was not his wife, and it was not one of his children."

There are far too many stories out there like Michael's. (Salon has chosen to leave out his last name to protect the privacy of his family.) During the COVID-19 pandemic era, more than 3 million people over the age of 18 have so far come forward with disabilities, and many more are expected to follow, according to recent data from the U.S. Bureau of Labor Statistics (BLS.) The COVID-19 saga, which is still not entirely over and is no longer considered an emergency, is inextricably linked with that of disability rights.

This link manifests in two ways: It has disproportionately afflicted disabled individuals and, as that BLS data reveals, it has created a whole new group of disabled people.

Per the first group, Salon reached out to Darcy Milburn, Director for Social Security and Healthcare Policy at The Arc, an organization serving people with intellectual and developmental disabilities

"The COVID-19 pandemic was a complete catastrophe for our community," Millburn explained. "Aside from the death toll, people with disabilities were hit first and hardest, and we're still grieving."

For one thing, health care systems often failed disabled people, from providing inferior care to struggling with accommodating their disabilities in the first place. Although Millburn thought the pandemic had at least raised awareness of pre-existing inequities in the health care system, the status quo for disabled people in 2023 is hardly better than it was in 2020. Millburn and Roth both touched on the same theme — that because disabilities are so individualized, there are countless little ways that ableism can interfere with the providing of quality health care.

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"The COVID-19 pandemic was a complete catastrophe for our community."

"It goes in many different directions for people with disabilities," Roth pointed out. "The challenges of navigating COVID have been in many ways more complex than for other people."

For instance, people who are hard of hearing struggle with the constant wearing of masks. Those who can't maintain personal hygiene like washing their hands without assistance likewise struggled. In fact, many disabled people live alone, and as such were effectively stranded when seeking access to the same help that non-disabled people can take for granted.

"Not having access to personal protective equipment has made [life] more difficult," Roth told Salon. "People who are living in the community with support have had a more difficult time getting people to come into their home. I think among the greatest challenges has been the complete exclusion of those rights-based protections that people with disabilities have to be in the community to have physical access, program access, effective communication access, to be prevented from institutionalization."

Disabled individuals also struggle with societal intolerance. Among other things, there still exists in American culture a pervasive prejudice against receiving public assistance. This is particularly ironic, since scholarly research finds that society as a whole benefits from providing accommodations to people with disabilities. There is also a notoriously long wait associated with qualifying for the Medicare insurance coverage that so many disabled people require to survive, and the assistance that exists is hardly lavish. In fact, some advocates argue it is inadequate for achieving any kind of meaningful financial security. For example, a 2019 report from the Center for American Progress found, "Disabled adults experience poverty at nearly twice the rate of their nondisabled counterparts."

"Disabled adults experience poverty at nearly twice the rate of their nondisabled counterparts."

"The SSI [Supplemental Security Income] asset limit is the total amount of financial resources that someone is allowed to maintain while also being on SSI," Millburn pointed out. "The assets means the total value of cash-on-hand savings accounts, some retirement accounts, life insurance policies over a certain amount of money, burial funds, that kind of thing. People on SSI have not been allowed to have more than $2,000 in assets since 1989. It's a travesty."

From there, they are given the bare minimum of what will be required to provide food, clothes and other necessities, an amount that varies from individual to individual but often is around $600 per month.

There is also the emerging category of patients who develop long COVID, or COVID-19 with long-term symptoms that can last for months or even years. COVID-19 has been found to occasionally cause long-term disabilities including mental health problems (the SARS-CoV-2 virus can change the brain's structure), metabolic disorders, joint pain, respiratory problems, cardiovascular diseases and neurological problems. Even worse, there is scant medical research on the consequences of being a so-called "long-hauler." While there is a comparative wealth of information about people with pre-existing disabilities (since those disabilities have existed long before 2020), COVID-19 is a new disease. No known human has had it for more than a few years.

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"The coronavirus pandemic has certainly caused new long-term disabilities among millions of people," Andrew Wylam, president of Pandemic Patients, a non-profit that works to help people harmed by COVID-19 and post-COVID conditions, told Salon by email. "The outcomes of long COVID are still unclear, but we're seeing that some people do show some recovery while others' symptoms decline or stay the same. The nature of these impairments is blended, with some being primarily cognitive and others being physical or associated with organ damage."

Wylam later offered insight on how to raise awareness of and learn more about long-haul COVID-19.

"COVID-19 is still spreading and still causing disability," Wylam wrote to Salon. "We need to keep working to educate people about the risks of long COVID and how to recognize it. I think a lot of people recover from their acute COVID-19 infection and when they develop long COVID symptoms a few months later they don't attribute it to the prior infection. That makes it difficult for people to make the association between the onset of new symptoms and COVID-19, which can make it hard to persuade people this is an important issue."

By Matthew Rozsa

Matthew Rozsa is a staff writer at Salon. He received a Master's Degree in History from Rutgers-Newark in 2012 and was awarded a science journalism fellowship from the Metcalf Institute in 2022.

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