1,190,953 and Counting

A tough love letter on solidarity

*The CDC COVID data tracker reports 1,190,953 COVID-19 deaths as of May 11, 2024. The title of this piece is a nod to Larry Kramer’s 1983 piece for the New York Native, “1,112 and Counting,” in which he called for gay men to respond to the unchecked spread of HIV in gay communities. The cover photo contains a poster created by the Silence=Death Project formed by Avram Finkelstein, Brian Howard, Oliver Johnston, Charles Kreloff, Chris Lione, and Jorge Socarrás.
Image Description: A poster displayed the words “Silence=Death” with an upward-facing pink triangle floating above it.

Isolation has been a throughline of my experience as a Mad[1] disabled person. I can’t filter out background noise to focus on one particular sound, so I hear every sound in a room at the same time. My experience in public spaces ranges from challenging (trying to figure out what the checkout worker at the grocery store just asked me) to physically painful (the cacophony of a bar or a 1L doctrinal classroom shortly before class starts). As a result, like many disabled people, I spend a lot of my free time at home. Outside of those forcibly confined by the State, the rest of the world got a taste of what isolation and confinement to one’s home is like during the COVID-19 lockdowns in 2020[2]. It was a scary time, but seeing non-disabled people acknowledge how difficult it was to be isolated and not have access to public spaces was oddly affirming. For the first time, a lot of my friends and neighbors understood the mental toll that isolation brings, and my own isolation didn’t feel as lonely. But as the State dropped masking and isolation guidelines, I watched non-disabled people return to their normal without realizing or caring that not everyone could follow them back into the world. Non-disabled people got a taste of the routine isolation disabled people experience and ran from it at the first opportunity without stopping to ask who was left behind.

Like race, sex, or gender, disability is socially constructed in that while there are biological bases for how human bodies differ, the way we categorize people is socially determined. One classic example of the social construction of disability is that we think of wheelchairs as disability aids in a way we don’t think about glasses or braces as disability aids.

The social construction of disability has long been used to naturalize group degradation and oppression. For example, sexual orientation-based diagnoses were in the Diagnostic and Statistical Manual of Mental Disorders (DSM) from 1952-2013.[3] Homosexuality was classified as a disease, and AIDS was thought to be a related disease that could only occur in gay men. In fact, physicians and journalists initially referred to AIDS as Gay-Related Immune Deficiency (GRID). The result was that even those who didn’t believe that AIDS was a divine punishment for queerness still believed that AIDS was a natural and inevitable result of the disease of homosexuality. And why would you look into something that everyone knows is inevitable? Why would you try to stop it? The medicalization of queerness didn’t save queer lives. It made it easier for the general public to sign off on the State’s abandonment of gay men.

**Created by Gran Fury, an artist collective associated with ACT UP.**
Image Description: Image of the arms and hands of two people who are wearing suits shaking hands in front of a building. At the top says, “WHEN A GOVERNMENT TURNS ITS BACK ON ITS PEOPLE, IS IT CIVIL WAR?” At the bottom says, “The U.S. Government considers the 47, 524 dead from AIDS expendable. Aren’t the “right” people dying? Is this medical apartheid?” In small cursive font at the very bottom is signed “Gran Fury.”

Today, we’re seeing a similar disability-naturalized apathy toward people who have died from COVID-19 or who are living with Long COVID.[4] COVID-19 has disproportionately impacted marginalized communities, particularly communities of color. The reasons that communities of color are more vulnerable to COVID are sociological.[5] For example, relative to Non-Hispanic white Americans, Indigenous populations see a 1.6 times higher SARS-CoV-2 infection rate, 2.5 times higher hospitalization rate, and 2.0 times higher mortality. This outcome is explained in part by barriers to care like “socioeconomic constraints, historical trauma[6], and discriminatory policies.” Barriers to care are often very literal for Indigenous people. For example, there are no Indian Health Service (IHS) hospitals in California, Washington, Oregon, Nevada, or Idaho. COVID outcomes are also influenced by social determinants like minority stress, poverty, lack of control over social distancing[7] and “increased risk of chronic conditions [e.g. asthma, chronic obstructive pulmonary disease (COPD), cardiovascular disease, diabetes, and obesity].”

Increased risks of chronic illness are in part socially determined. For example, people of color are more likely to be exposed to environmental contaminants in their homes and workplaces, which can lead to higher rates of chronic illness. However, this social context has been absent from public discussion of risk factors for COVID. The post-vaccination rollout message has been “Americans don’t need to worry about COVID because only disabled and chronically ill people are getting seriously ill or dying.”[8] I have three problems with this message. First, it’s not true. So-called healthy Americans aren’t impervious to serious illness, death, and Long COVID. Second, decontextualizing disability and chronic illness from their social determinants naturalizes the group degradation and oppression that contribute to higher mortality rates among marginalized communities. The message that dying from COVID is a natural result of being disabled is logically identical to the message that dying from AIDS is a natural result of being gay. Group death isn’t acceptable just because the chain of causation feels attenuated. Finally, even if disability and chronic illness were not deeply intertwined with group degradation and oppression, disabled and chronically ill people deserve to live. We deserve to do so in public, just like so-called healthy people. We don’t deserve to be left for dead just because our bodies are tainted by the stigma of disease, just like gay men don’t deserve to be abandoned because of the belief that their gayness foretells their demise.

I understand that comparisons between AIDS and COVID bother a lot of people, so let me be clear. I am not saying that HIV and SARS-CoV-2 are the same virus. I am not saying that the public response to their spread has been identical. I am saying that we are failing the same people who are failed by state apathy toward AIDS. I mean that literally, because outcomes from COVID infections are worse among HIV+ people. But I also refer to the fact that social determinants of health leave similar populations vulnerable to HIV and to SARS-CoV-2. I’m not the only one saying this. The AIDS Coalition To Unleash Power (ACT UP), one of the most well-known groups to advocate for the end of the AIDS crisis, has demanded that the CDC reinstate isolation guidelines that were abandoned in March 2024. Queer people with Long COVID, like Themme Fatale, have called for queer people to resume layered precautions as a form of community care and have started campaigns to make their communities safer.

Before I started researching for this post, I had a pretty rosy (read: whitewashed) view of AIDS activism. I expected the message of this post to be “Let's come together to present a unified front to advocate for a better State response to COVID like we did when we fought for the end of the AIDS crisis.” But the AIDS crisis never ended. The State continues to abandon Black gay men in particular, who account for “39% of HIV diagnoses attributable to male-to-male sexual contact.” Also, AIDS activism wasn’t unified. It did not consist of people with common goals and life experiences uniting to do “The Thing” they all agreed needed to be done. ACT UP was a coalition of many different sub-groups working to end the AIDS crisis in a variety of ways. In the 1980s and 1990s, ACT UP actions included both negotiating with pharmaceutical companies and illegally exchanging needles. This structure created a huge opportunity for solidarity, but the predominantly white leaders of ACT UP did not always rise to the opportunity. ACT UP members of color have said that when they raised the disproportionate impact of HIV on communities of color, white members pushed back, saying that discussions of race weren’t relevant to ACT UP’s work. The internal dynamics of ACT UP provide a great example of what happens when (often white) organizers assume that their priorities are shared by everyone in a movement.

Image Description: Screenshot of a post by Andrew Gurza (@andrewgurza6.com) that writes, “gay culture is somewhere being wheelchair inaccessible while a big banner hangs above it and reads: ‘Everyone is welcome.’”

Predominantly white queer communities are replicating this pattern in their (lack of) COVID response today. Isolation from other community members is a common experience for many queer people, and that intensified during the 2020 lockdowns as public queer spaces were closed. I understand the drive to return to community spaces, but there is more to queer community than going to a bar. Bars have long been central to some queer communities, but they have historically excluded disabled and chronically ill queers, poor queers, and queers of color. Limiting our imagination of queer community to crowded indoor spaces with $20 cover charges perpetuates historical gatekeeping and facilitates the transmission of a virus that’s killing and disabling us.

I am particularly frustrated given that the people statistically most vulnerable to COVID are some of the people we fight hardest for. For example, outcomes of COVID infections are likely worse for trans people than the average person because trans people on average are more vulnerable to poor health outcomes.[9] Queer people of color are more likely than white queer people to have tested positive for COVID-19, tested positive more than once, and reported that COVID-19 still impacted their lives as of summer 2022. Queer activists, attorneys, and policymakers should rally against the unmitigated spread of SARS-COV2 for the same reason that they fight against restrictions on gender-affirming care: it is a life-threatening public health issue that disproportionately impacts queer people.

To me, queerness isn’t about my liberty to do whatever I want. It’s about cultivating the collective autonomy of my community.[10] This includes taking steps to keep myself from getting COVID because choosing to increase my risk of exposure would mean forcing the people around me to increase their risk of exposure as well. I don’t view choosing not to mask in crowded indoor spaces as liberatory because that so-called “liberation” endangers the lives of people around me. Dead queers can’t access gender-affirming care, get married, or hold political office.

I want for us to use what has worked in AIDS activism and learn from what hasn’t worked instead of just repeating it. Can we treat chronically ill and disabled people like full-fledged community members? Can we root our idea of queer liberation in community care, not just the ability to make choices as individuals? Can we do these things now instead of waiting until white people make up a larger percentage of the dealth toll? And even if COVID didn’t disproportionately impact queer communities, why should that prevent us from using the knowledge of our elders to help groups whose liberation is bound up with ours?

I understand why many queer people are reluctant to acknowledge that we’re still impacted by COVID, but I’m angry. Some days, I think I know exactly how Larry Kramer felt while he wrote “1,112 and Counting.” I want to stand on a chair and yell “I am angry and frustrated almost beyond the bound my skin and bones and body and brain can encompass. My sleep is tormented by nightmares and visions of lost friends. . . How many of us must die before all of us living fight back?” I want to rewrite my email signature to include “I am sick of everyone in this community who tells me to stop creating a panic. How many of us have to die before you get scared off your ass and into action?”

Let’s honor the legacy of the queer elders fighting for an adequate State response to the AIDS crisis by building from the foundation they laid and keeping each other safe. To quote Themme Fatale, “We are all we have. We are all we need.”

Footnotes

[1] From Madness Network News: “To be mad is to take pride in the mental states that have been deemed criminal and deficit.”
[2] According to the Prison Policy Initiative, there are over 1.9 million people confined in prisons, jails, juvenile correctional facilities, immigration detention facilities, civil commitment centers, and state psychiatric hospitals.
[3] The first version of the DSM (DSM I, 1952) referred to homosexuality as a “sociopathic personality disturbance.” The characterization of homosexuality was updated in subsequent DSM versions, but was not removed from the DSM until the publication of the DSM V in 2013. The DSM still contains gender identity-related diagnoses.
[4] The CDC has defined Long COVID as “signs, symptoms, and conditions that continue or develop after acute COVID-19.” The CDC recognizes symptoms as Long COVID if they persist for four weeks or longer after infection. Long COVID can manifest in a variety of ways, but many people with Long COVID report new or worsening fatigue, respiratory symptoms, cardiac symptoms, gastro-intestinal symptoms, or neurological symptoms (including worsened memory, changes in smell or taste, and depression or anxiety). Symptoms may persist for anywhere from weeks to years, and sometimes “emerge, persist, resolve, and reemerge over different lengths of time.”
[5] One study found that after controlling for social determinants of health, COVID outcomes did not differ between hospitalized Black and white Americans, meaning that being Black in and of itself doesn’t make someone more likely to die from a “severe case.”
[6] For example, the Indian Health Service, the agency currently responsible for providing healthcare to Indigenous people, forcibly sterilized about one in four Indigenous women without their knowledge or consent in the 1960s and 1970s.
[7] See Clyde Yancy’s discussion of social distancing as an issue of privilege.
[8] For example, in September 2022, President Joe Biden stated in an interview, "The pandemic is over. We still have a problem with COVID. We're still doing a lotta work on it. But the pandemic is over. If you notice, no one's wearing masks. Everybody seems to be in pretty good shape. And so I think it's changing. And I think this is a perfect example of it."
[9] Trans people tend to have more risk factors for poor health outcomes, like co-occurring conditions, barriers to care, and discrimination from providers, so we would expect trans people to experience worse outcomes from COVID-19. However, the impact of COVID-19 on trans people is virtually unstudied because public health data typically only collects a binary sex, not whether someone is cisgender, trans, nonbinary, intersex, genderqueer, etc. I think it’s telling that I wasn’t able to find a death rate or infection rate for trans Americans to include in this piece. See Health Affairs for more discussion about gathering public health data about trans people.
[10] No one has said it better than bell hooks did in all about love: “‘Queer’ not as being about who you're having sex with (that can be a dimension of it); but ‘queer’ as being about the self that is at odds with everything around it and that has to invent and create and find a place to speak and to thrive and to live.”

A tough love letter on solidarity

Footnotes

Informing Intersections