The answers lie in poop. Based on the latest national sample of wastewater taken on January 13, 2024, the concentration of the SARS-Cov-2 virus is 1,132 copies/mL of sewage, an alarming increase compared to 280 copies/mL six months ago. This is one sign that cases of COVID infections have been rising, resulting in more hospitalizations, deaths, and people developing long COVID.
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.
In 2022 a series of medical crises left me even more vulnerable: I now have a tracheostomy, a hole in my throat where a tube enters that is connected to a ventilator full-time. Since I can no longer breathe through my nose and mouth, masks are less effective, and the filter attached to my ventilator does not provide the same protection as a K95 mask. When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling and a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.
I was filled with fear when San Francisco announced an order to shelter in place on March 16, 2020. Just a few months shy of four years to the day, I am more scared than ever and full of rage at how the state discarded high-risk people. President Biden betrayed his voters. He made campaign promises to end the pandemic and take an aggressive approach compared to the previous administration. Two years later he said the pandemic was over in an interview on 60 Minutes. His administration ended the COVID-19 Public Health Emergency last May, resulting in changes in vaccine and testing coverage which has contributed to potentially the second-largest surge to date. And at least 15 million people were disenrolled from Medicaid as of early January.
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.
There is also a lack of funding and political commitment to researching long COVID, developing treatments for it, and learning from the significant population in the disability community who have post-viral illnesses. My friend Tinu Abayomi-Paul, who has multiple disabilities and developed long COVID, told me, “Long COVID has stolen my life. I can barely work. I had all the vaccinations, my family masked. There’s no treatment. I am afraid of getting it again. This wave or the next, it will kill me.”
Long COVID advocate Angela Meriquez Vázquez shared with me, “This wave is most alarming. I was recently reinfected by this new variant and the psychological toll of trying to keep ourselves safe with no institutional support, and, in fact, quite a bit of institutional propaganda that we are being hysterical, is an ongoing source of trauma. It feels like I’m screaming into the void.” Disabled and sick people have been gaslit about their lived experiences throughout history and the same is happening to this growing generation of people with long COVID.
We need more disabled people in public service and all the health professions. In a 2022 essay by Christine Mitchell, a disabled public health researcher, she wrote: “The ongoing rate of COVID cases, hospitalizations, and deaths we are seeing in the US isn’t inevitable; it’s a policy choice… We can choose a different way forward, a way that protects the health of all of us, starting with disabled people… We must create pathways for disabled people to enter the fields of public health and medicine and to help shape the policies that affect us. We must invest in public health research that addresses gaps in data about disabled people so that we can create inclusive, evidence-based policy toward health equity.”
This election I will not vote for any presidential candidate. “Progressives” like Jon Favreau, cohost of Pod Save America, recently ignored the concerns high-risk people shared on Twitter about Senator Bernie Sanders’s announcement that he would work from home while infected with COVID, concerning to many people with long COVID and other chronic illnesses and disabilities about what they saw as Sanders’s inadequate message. Many people do not have the privilege to work from home; even minimal activity can be detrimental to recovery for some; and vaccines cannot be the only source of mitigation, especially as the senator is chair of the health, education, labor, and pensions committee. Democrats exhorting their base to “choose the lesser of two evils” will not persuade me this fall because both Biden and Trump are morally repugnant. The Democratic party does not care about the politics of being disabled while expecting disabled voters to turn out.
As with people of color, Arab and Palestinian voters in particular, it’s no wonder marginalized communities are cynical, feel taken for granted, and turned off from any kind of political participation. COVID should be a major policy issue this year and I am watching to see which candidates, if any, will include it in their platform. One day, a candidate who deserves my vote will receive it.
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.
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