In March 2020, right before the United States began to shut down due to COVID-19, I woke up so sick I could barely stand. My joints were inflamed, and my throat felt like it had been mangled by barbed wire. When I looked at it in the mirror using my flashlight, the deep crimson color I saw did not reassure me. Neither did the intense chills I felt rippling through my body, though my digital thermometer told me I had no fever. I emailed professors, arranged to be in class virtually — so that I wouldn’t miss out on important meetings — and made myself some hot tea with honey, which I choked down with difficulty.
By the time Brown suspended classes and moved to remote learning, I had already been at home, sick and then slowly recovering, for two weeks. I had already been granted the accommodation of virtual learning that we would all soon participate in as COVID-19 ravaged the globe and made gathering in person dangerous.
As someone with several chronic illnesses — of which that episode represented just one — a world with COVID-19 has made living with my illnesses worse. I, and others who are immunocompromised, have had to endure intense uncertainties and live with fears beyond the worries of people without these issues. We are “less likely to receive care, and more likely to die.” These words have haunted me since I first read them two years ago in The Seattle Times, when COVID-19 was new and I did not yet know that my isolation — and the accompanying loneliness and depression — would become seemingly never-ending. Rochelle Walensky, director of the Centers for Disease Control and Prevention, recently said on Good Morning America that “the overwhelming number of deaths — over 75% — occurred in people who had at least four comorbidities," adding that "really these are people who were unwell to begin with and yes, (this is) really encouraging news in the context of Omicron.” Walensky insisted her remarks were taken out of context and that the whole statement discussed how a recent study found that only a tiny percentage of fully vaccinated people became severely ill and died from COVID. Of this tiny percentage, she continued, the majority had several preexisting conditions.
Context has done nothing to reassure anyone with a chronic illness or disability, however. Vaccinations do not offer the immunocompromised the same level of protection they do for the rest of the population. Because of this, we have had to remain more cautious than many others. We have had no respite, no period of leaving a mask at home, of feeling safe in restaurants, schools or even visiting friends and family. We have continued to treat COVID-19 as the serious threat it was perceived as in the early days.
We must keep up this vigilance because the institutions and systems that are supposed to protect us have only considered us in terms of our deaths. This is a void of care. A void of care through health care rationing that has in some cases discriminated against people with disabilities. A void of care through the refusal of so many Americans to follow basic precautions like masking and distancing. And a void of care through the new isolation guidelines that state that on day five, a person may go out as long as their symptoms are gone, without confirming that they are COVID-negative. These guidelines instruct to “avoid people who are immunocompromised or at high risk for severe disease, and nursing homes and other high-risk settings, until after at least 10 days.” How, if someone is asymptomatic, are we to tell whether they are still contagious? How, too, are they to tell who is and who is not immunocompromised? Our unwellness is not always visible. The entire burden of keeping ourselves safe and alive falls on us. The only way for us to be safe is to remain in isolation forever, rendering us even more invisible than before this pandemic.
In COVID-19’s early days, universities like Brown appeared to put the health and safety of the entire community first. Campuses shut down, learning happened remotely and staff worked from home. In the two years that have followed, we’ve seen advances in treatment for COVID-19 that can mitigate the severity of infection outcomes, learned how to take precautions that minimize the risk of spread and developed vaccines that reduce the risk of infection for most people by 95%.
While it may be safe for most people to return to campus and participate in life as usual — with the addition of a few precautions — the same cannot be said of people who live with chronic health conditions. This is why it was deeply upsetting to see that in Executive Vice President for Planning and Policy Russell Carey’s Jan. 12 communication outlining Brown’s plans for students to return to campus this spring, there was no mention of disabled or immunocompromised community members at all. Last semester’s petition to work and study remotely — a form I only learned existed from another disabled student — I can no longer find on the SAS website. Our presence at Brown has been erased, and along with it our unique needs during this pandemic.
To be rendered invisible by Brown has immense repercussions for immunocompromised community members. For instance, in Carey’s communication, he discusses how highly transmissible Omicron is, while minimizing its effects as most commonly “mild” — a debatable categorization. If we simply follow the precautions outlined in the communication, Carey indicates severe illness on campus will be minimized. Since Brown has decided to stop publishing positivity rates, we are no longer equipped with the information we need to make an informed decision about our personal risk on campus. These plans fundamentally exclude people who are immunosuppressed.
The result is that people like me with immunity issues have become increasingly isolated and alone, disconnected from communities and relationships that once enriched our lives and provided us with stability and a sense of belonging. We’ve lived with constant uncertainty, fear and anxiety that public health policies have done little, if anything, to assuage. Though we are as anxious to return to "normal" as everyone else is, normal remains an impossibility for millions of immunocompromised people. As long as our existence is ignored and devalued — and until policy and care centers take into account our unique vulnerability — the world is an unsafe place where isolation remains the only option.
Amanda Votta GS can be reached at amanda_votta@brown.edu.
