I first heard the comparison when COVID-19 started to spread through my community: “It’s like a cold,” people would say. The comparison offered a familiar point of reference for a virus we are still in the process of understanding. But the more I heard it, the more it disturbed me. How can millions of people die from a virus that is just “like a cold”? When I myself caught COVID-19 in 2022, it was not “like a cold” at all. Then it hit me: The comparison is based in an abled perspective.
Comparing COVID to a common cold universalizes an individual, able-bodied experience of disease. Even worse, it promotes a false sense of reassurance in the context of a global pandemic that is ongoing and impacts disabled people differently. Because I am immunocompromised, my experience of COVID was — as even the Centers for Disease Control and Prevention (CDC) acknowledges — worse than the experiences of those without a preexisting condition. While I am glad that others were not as sick as I was, I worry about generalizations that center an abled experience of COVID, which remains a leading cause of death worldwide. I also worry about how little U.S. society seems to understand (or care) about the growing immunocompromised population.
As long COVID gains more attention, California has just ended vaccination requirements and masking in health care and other high-risk settings. Meanwhile, according to the People’s CDC weather reports, a significant percentage of the U.S. population lives in areas with substantial or higher transmission. One thing is clear: COVID is not a thing of the past and immunocompromised folks are still among those most at risk.
COVID Among the Immunocompromised
The term “immunocompromised” has become a part of people’s everyday vocabulary. As an immunocompromised person, I have never heard immunity mentioned so much on a mainstream level or among my own friends. Yet, catching COVID was a painful reminder of the gap between my disabled reality and what disabled writer Leah Lakshmi Piepzna-Samarasinha calls “The Great Forgetting” of disability by the state and abled people, including abled leftists. Many people don’t actually know what it means to be immunocompromised and the CDC’s two-sentence explanation — which defines the term parenthetically as having “a weakened immune system” — is part of the problem:
Some people who are immunocompromised (have a weakened immune system) are more likely to get sick with COVID-19 or be sick for a longer period. People can be immunocompromised either due to a medical condition or from receipt of immunosuppressive medications or treatments.
Being immunocompromised is so much more complex than this explanation and the CDC’s seven brief examples of what constitutes immunocompromised that follow its statement. How can we fully understand the greater risk of COVID for immunocompromised people with such a simplified and solely medical understanding of chronic illnesses and disabilities as a physical weakness? Most importantly, how can we protect each other?
In 2020, disability justice activist Imani Barbarin warned us that “COVID-19 is a mass disabling event.” We can’t afford to perpetuate “The Great Forgetting” during a public health emergency that has single-handedly increased the disabled population by millions, not to mention the long-COVID crisis. We can’t simply wait for greater protections from a government that has historically disposed of disabled people. Instead, we need to follow the lead of disability justice activists — whose intersectional understanding of disability is more expansive than a legal or rights-based framework — and shift from the individual to the collective, which means that in addition to the CDC’s directives on “how to protect yourself,” we need to protect each other.
When I say “we,” I mean everybody. Since well before the pandemic, disability justice activists like Kay Ulanday Barrett have reminded us that being able-bodied is temporary. As Piepzna-Samarasinha puts it: “You may be us, or may become us quite quickly.” We need each other to survive and the longer it takes for everybody to practice community care, the more people will die. In an unequal society, mortality rates will continue to widen based on privilege (or lack thereof).
What It Means to Be Immunocompromised
Here are three basic things we all need to keep in mind about what it means to be immunocompromised:
- Immunocompromising conditions are unbelievably varied and include many conditions that the general public is not aware of. I have yet to meet someone who already knows about my autoimmune disease. I myself didn’t know about it until I was diagnosed. Every time I talk to a medical professional who is not an immunologist, I have to explain my autoimmune disease because most doctors have never heard of it either. If the only immunocompromising condition that someone can identify is cancer, then we are in big trouble. These conditions are varied, not always visible, and have their own (often non-linear) temporalities. Some conditions are forever, some are temporary, and some go into and out of remission. The burden of educating others should not fall on immunocompromised people.
- Immunocompromising conditions, like “invisible disabilities,” are not always visible. How would you know if someone is immunocompromised unless they disclosed? You wouldn’t. The fact that we cannot know further highlights the importance of community care. We should not rely on disclosure — what disabled writer Mia Mingus calls “forced intimacy” — or the perceived visibility of disability in order to practice safety, especially since medications/treatments can mask conditions that are otherwise visible. For example, my chronic illness would be very visible on my skin if I weren’t treated with injections. Understanding that some diseases (and disabilities) are not visually perceptible debunks the visibility/invisibility binary, the equation of visibility with validity, and also the ableism underlying vidism, visualism and sightism.
- The “risks” of living with an immunocompromising condition are so much greater than being more susceptible to sickness. Let me give you a personal example. My injections must be administered by a doctor in a doctor’s office. This means that to receive treatment, I must first order my medication through a specialty pharmacy. Then it is shipped to my doctor’s office by UPS Air, though it is initially manufactured in Europe. Treatments like mine are not like the more familiar prescription medications. In the context of a pandemic, this means that risks can include issues related to medical closures, the global supply chain and other manufacturing disruptions. Disability Visibility Project Founder Alice Wong discusses this at length in her recently published memoir, Year of the Tiger: An Activist’s Life, where she writes about the challenges of ensuring that she has access to her ventilator during the pandemic as well as other catastrophes like power outages. Wong talks about being considered disposable/expendable in her book and elsewhere as a high-risk disabled person. The level of anxiety that I and others have lived with throughout the pandemic related to fears about not being able to access the medications or machines that our lives depend on is in and of itself colossal.
What if we centered the perspectives of people who are immunocompromised, chronically ill and disabled instead? What if, in life-threatening circumstances like the pandemic, we abided by one of the 10 disability justice principles and followed the leadership of those most impacted?
Reframing Risk and the Need for Collective Care
The Los Angeles Times recently published an article about the loneliness of being immunocompromised as others “move on” from COVID. I’m not lonely, I’m enraged. Having a non-compromised immune system doesn’t make you lucky, it makes you privileged in an ableist society. We need to reframe risk. In the context of oppression, immunocompromised people and other vulnerable populations aren’t at risk for reasons related to their individual bodies. They are put at risk by systems of oppression that value some bodies over others, an ideology that forms the basis of eugenics. Ableism is compromising our immunity. Oppression is compromising our immunity.
This is a big part of the reason why individualizing safety is so absurd. Immunocompromised people need to be protected. Most of all, we need to protect each other. We can’t wait until the emergency declarations that have been in place since 2020 expire on May 11, 2023. This requires understanding what it means to be immunocompromised and how oppression factors into that. Shifting the focus from the individual to the many oppressive forces against us is at the heart of disability justice, an ongoing activist legacy that we have at our disposal for our collective survival.
Practicing Disability Justice
When I finally caught COVID a couple years into the pandemic, many people questioned my safety precautions. Despite the steady lifting of COVID restrictions, I had continued to follow earlier mandates like masking.
What was all of that for, they said, when you caught it anyways? This is twisted ableist logic. It is precisely because of my capacity to maintain precautions that I didn’t catch COVID until recently, and it is precisely because I am immunocompromised that I did catch it so easily.
What about immunocompromised folks who can’t work remotely? What about immunocompromised folks who are facing the double pandemic of COVID and anti-Black racism? How many people must die before we relinquish ableism?
I close with a line from a panicked email I wrote to my community of friends at the very beginning of the pandemic in 2020: Practice disability justice however you can, whatever chance you get. This is our collective lifeline, whether you’re disabled or not.