Disability Visibility is a column on being disabled in a nondisabled world.
BY ALICE WONG JANUARY 17, 2024
Excerpt read more on TEEN VOGUE
Like millions of other high-risk people who are service workers, older, chronically ill, disabled, or immunocompromised, I have done everything I can to remain as safe as possible. Due to neuromuscular disability and respiratory failure, my chances of surviving an infection are slim to none. With the latest JN.1 variant likely even more contagious – or better practiced at evading immune system defenses – than previous ones, I wonder if this is the surge when I will become infected, which is terrifying.
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Public health has deteriorated, with prominent health care professionals, public officials, and policymakers spreading misinformation or minimizing the pandemic. Many are promoting the idea that COVID is not the mass disabling event that many argue it is, that everyone will be fine because vaccines and antiviral medications exist without acknowledging structural barriers and racial disparities, and that high-risk people are inevitable acceptable losses. In an August interview with the BBC, Dr. Anthony Fauci said, “…even though you’ll find the vulnerable will fall by the wayside, they’ll get infected, they’ll get hospitalized, and some will die. It’s not going to be this tsunami of cases that we’ve seen.” Dr. Vinay Prasad wrote the following in his newsletter: “If your child is sick, you should not test them, and you should send them to school if they are mildly ill… Go to work if you feel up for it; stay home if you are too sick to work. Don’t test.”
The condescension of people in positions of authority who are telling the public not to worry dismisses the valid fear of high-risk people who struggle to exist in public spaces without being harassed for masking or requesting accommodations because society abandoned us in a push to return to “normal” while leaving many behind.
For many, the pandemic is not over. People need to continue to wear masks and get vaccinated if they can, in addition to pushing for better air quality and other mitigation efforts, instead of worshiping the individualistic “you do you” philosophy. Even now, with health care facilities in Los Angeles County and other cities reinstating mask mandates, it seems like business as usual with leaders continuing to downplay the pandemic or ignore it altogether. During a press briefing in early January, a reporter asked White House press secretary Karine Jean-Pierre whether hospitals should resume mask requirements and she replied, “…hospitals, communities, cities, states, they have to make their own decisions…that’s not something we get involved in,” essentially abdicating any responsibility by the federal government to keep the public safe.
The messaging is obvious from the top all the way to the local level: The pandemic is not deadly and getting COVID is just a mild flu for “normal” people because that’s just how hypercapitalism, racism, eugenics, and ableism work. The normalization of repeated infections, preventable deaths, and anti-science propaganda is tearing the fabric of society, with the most marginalized hanging by a thread.
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Do disabled people count? Have we ever mattered except when it’s an election year? Disabled people may literally be undercounted if a proposed change to the US Census Bureau’s annual American Community Survey is approved with an estimated 20 million erased, resulting in a decrease in the allocation and funding of critical services and programs they rely on. Being counted and visible is a threat because with numbers comes power.
I don’t know how to convince everyone that we can’t give up. So many people consider COVID to be endemic, or accept that everyone will eventually become infected, thinking nothing more can be done. We can take action to strengthen infrastructure and improve policies if we work together, hold leaders accountable, and shift toward a culture of collectivity that recognizes interdependence, leaving no one behind. It is exhausting to constantly have to defend my humanity, but I know a better world is possible and we will move forward together.
