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This article originally appeared in the September 2022 edition of Inside Equal Access.
Written by:
Haifa Alsaab, Staff Writer, Division of Information Technology
Immunocompromised people were and are significantly impacted by COVID-19. There are millions of people in the US with a compromised immune system. A considerable number of them do not respond to COVID vaccines. Those who did get a vaccine fear it gives them little or no protection.
COVID policies such as mask mandates, vaccination requirements, and flexible working options were helpful for immunocompromised people. To a certain extent, they were able to cope with the exceptional situation. But much of the United States dropped COVID restrictions months ago. This means policies that protected immunocompromised people, including mask mandates, are disappearing. Additionally, accommodations that benefited them, such as flexible working options, are being rolled back. Although much of society is trying to return to pre-pandemic regularity, many disabled and immunocompromised people feel forgotten.
In her article, "Many try to return to normal from COVID, but disabled people face a different reality", Shruti Rajkumar presents some cases of immunocompromised people whose lives are still at risk after the pandemic. Beth Kenny is immunocompromised, and her daughter Vyla, who is four years old, has autism. With COVID-19 precautions, Kenny was able to develop a routine that worked for their family. Social distancing measures, mask requirements, and vaccines helped their family to participate safely in indoor and outdoor activities without putting their family's health at risk.
Although much of society is trying to return to pre-pandemic regularity, many disabled and immunocompromised people feel forgotten.
Kenny’s daughter Vyla was able to take swim lessons thanks to their community’s COVID-19 measures. Vyla was able to go to her lessons and the library and to use public transportation. She was able to join an outdoor preschool and safely continue her education. After mask mandates were removed, the family had to stay home and withdraw from all activities. The 4-year-old child struggles to understand this new situation and feels scared. "The damage that it's caused to my family is [that] my child is having nightmares about my death," Kenny said.
Jay Justice is a director of LGBT HQ, a group that supports queer creators in gaming. Justice is also an immunocompromised person. During COVID, she could travel to speak on accessibility at events such as the annual Game Developers Conference (GDC). This was only possible because masks were mandated on planes. The conference was hybrid, but Justice realizes that many opportunities are lost in only virtual attendance. "It is absolutely demoralizing to feel like if I hadn't risked my health, I wouldn't have had the opportunities that I've gotten,” she said.
Justice is no longer able to perform necessary everyday tasks now that mask mandates have been lifted. "All we're really asking for is for a masking policy that will allow us to be able to go to the store, to go to the doctor, go get the mail, without risking [our health]," Justice said. Many immunocompromised people feel forgotten because no one cares about their protection. "One-way masking does not work, and no one seems to care outside of our community,” Justice expressed.
Although much of society is trying to return to pre-pandemic regularity, many disabled and immunocompromised people feel forgotten. The way COVID is measured does not help disabled and immunocompromised people assess risks. The Center for Disease Control and Prevention (CDC) started determining COVID-19 community levels based on the hospitalization data of COVID-19.
Matthew Cortland, a senior fellow at Data for Progress, says that this policy is inaccurate. When someone gets COVID-19, it does not make some people sick immediately. So, they may spread it before feeling any symptoms and requiring hospitalization. "If you're using that hospital data for your public health interventions, you're always going to be behind the curve, you're always going to be playing catch-up. And with a disease like COVID that can spread so easily and rapidly, that means if you're behind the curve, there's going to be uncontrolled spread." Cortland added.
This way of measuring along with the removing mask mandates can risk immunocompromised people’s lives. This keeps many of them locked in their homes because they are unsure how safe their environments are. Using public transit is vital for them, but many must avoid it to remain safe. Disability advocates think that reinforcing COVID safety measures becomes unlikely with economic and social pressure to remove masks and push people to return to their offices. Disability advocate Imani Barbarin says that these pressures have contributed to the back-and-forth COVID policies. "We can't keep treating people like this and expect progress and continuous upward trends in economics and economic policy, if you don't take care of people first," she added.
A selfie of Beth Kenny (foreground), their wife Adina (middle), and their child Vyla sitting in their backyard in Alameda, Calif. Photo by Beth Kenny.
Cortland believes that people with chronic illness and disabilities should be protected when creating pandemic policies. Keeping this group of people safe means that everyone is safe. "We do not need to be locked into this cycle of preventable suffering and death," Cortland, who is an immunocompromised person, said. Cortland provides some steps that could help in stopping this change and avoid spreading COVID. For example, he believes that people need to keep wearing N95 masks. He also suggests that money should be allocated for wastewater data monitoring, which can give more accurate data on COVID-19 community levels.
Barbarin thinks that the changing discussions of COVID policies made people think it's a personal choice. However, public health is not only about personal responsibility. "I think there is an understanding that seniors and high-risk folks are being lost to the virus… [but] maybe they're losing the thread that they're just one COVID infection away from … being as disposable as people with preexisting conditions are under the current COVID policies," said Beth Kenny, a member of Senior and Disability Action (SDA).
COVID-19 is expected to increase the number of people with disabilities in the US. Nevertheless, the mitigating of COVID policies makes people with disabilities feel neglected. Advocates continue to represent the disability community, but even the advocacy process stalls when immunocompromised people cannot safely protest after lifting mask requirements. Jay Justice and other advocates are concerned about the world moving on without assuring safety for everyone. As she puts it, "It feels like an uphill battle constantly fighting for someone, anyone to care.”