How Does It Feel To Be Seen As Needing a Cure

“The world is brown,” writes José Esteban Muñoz in his posthumously published book, The Sense of Brown, edited by Tavia Nyong’o, and Joshua Chambers-Letson, “and our challenge is to attune ourselves to this aspect of worldliness.”

Through a series of essays, Muñoz illuminates how one can understand brown as a holy container, a collective experience in which we may find and recognize ourselves and each other. Key to his argument is his use of the commons, the space where brownness is. This book has become helpful to me in thinking about a HIV related collective I co-founded, and the role the virus plays in our communion.

In 2015, I was attending Union Theological Seminary, when I  hosted an off-campus, one-day symposium regarding HIV related medicine, culture, and activism which included a session entitled, What Would an HIV Doula Do? At that point I was almost 15 years into my vocation as an AIDS organizer and educator, primarily focused on art and culture. I attended Union because I needed an additional framework—or language, one could say— to continue my HIV work. Funnily enough, the word doula had come up in a Church history class as an example of an old Greek word that is still in circulation. While it once exclusively was used to describe a handmaiden who helped in the process of birth, in more recent times, a doula is someone who can be active in end of life care, abortion support, and around the institutional processes of gender transition.

To the symposium session, I brought my previous AIDS experience, what I was learning at Union, and what I knew of the word doula. Over a few hours that day, the artists, activists, doulas, social service employees, fellow seminarians, and others that I invited shared ideas around how a doula could relate to HIV community care.

After the symposium, attendees kept in touch, and together, we released a transcript of the session. Months later, many of us reunited for a panel where we were invited to further consider the question of a HIV Doula. The event turned into a very interactive conversation, with the divide between audience and panel, melting away.  That day forward we were a collective.

We took as our name the question around which we first gathered: What Would an HIV Doula Do?. Among our first tasks was to think about the words we were using. We came to define doula—with the historic and recent uses in mind—as someone who “holds space during times of transition,” and, as we saw it, “HIV is a series of transitions that start long before someone gets a diagnosis, and continues after death”.

These definitions were hard won. It required talking, for hours, over snacks in classrooms, waiting rooms, and other spaces we had access to through our jobs, as we uncovered feelings, fears, prejudices, triumphs, and questions about the virus; while we navigated difference across HIV status, gender, race, belief, class, disability, age, and more.

This was important work because we crafted the language we needed to talk about ourselves as a collective. And yet, it was not until I read The Sense of Brown that I could put into words our relationship with HIV.

In the book, Muñoz writes, “the brownness that we share is not knowable in advance. It is not reducible to one object or a thing, so the commons of brownness is not identifiable as any particular thing we have in common.”

Similarly, the collective’s bond is not, in Muñozian terms, reducible to HIV. The commons of our making, is rooted in how, regardless of our HIV status, we have attuned ourselves to a world with an AIDS epidemic: we come together through specific yet connected relationships with our bodies, love, justice, sex, media, government, illness, medication, informed by HIV. You see this in our work as we:

• host writing workshops about the interaction between the spirit and the state;
• use performance to push back against problematic curatorial representations of HIV;
• partner with organizations to nuance, extend, and update AIDS programming; craft and share downloadable resources to help people think through the limits and possibilities of considering COVID-19 and HIV together; and
• curate exhibitions that center the life-saving activism of Black women with HIV.

With our work in mind, Muñoz becomes helpful putting into words what has been for the collective, largely instinctual. In Chapter 5, “‘Chico, What Does it Feel Like to Be a Problem’’” Muñoz echoes W.E.B. Du Bois’ line to frame modes of minoritarian recognition, diving into his concept of “feeling brown”, an experience of feeling together in difference. “Brownness,” he offers, “registers a mode of affective particularity that a subject feels in herself or recognizes in others,” and “receives value through the negation projected onto it by a racist sphere that devalues the particularity of non-Anglo Americans.”

Feeling brown, which is to say, feeling like a problem, is not in fact the problem. Yet at the same time, being labeled a problem can not be dismissed. Therefore, brown is not in need of being solved. Instead, Muñoz states, “a more reparative move is required, which is holding on to the problematic, fractured, and negated status of self within the social and working through such a position, striving to find new ways of living in the world that are pleasurable, ethical, and indeed tolerable.”

Similarly, we could ask, what does it feel like to be seen as needing a cure? HIV is not the only problem for many people with a diagnosis and access to health care since the arrival of life saving treatment in 1996, nor can living with HIV, or the ways people living with HIV are situated as a problem be dismissed. Yet, so often, HIV work becomes about ending AIDS, or fighting for a cure, with so little attention paid to the stated needs, desires, problems, and priorities of people living with the virus, for whom the cure may be less urgent than housing, food, safety, autonomy, public health law reforms, and much more.

This is where the collective comes in. As chaplains, activists, archivists, social workers, artists, sobriety sponsors, health care workers and friends our reparative move is to transition ourselves, each other, and communities away from seeing the virus as crisis. Instead, we share what it means to live with HIV, to exist in a world with HIV, and from there we investigate, create, and broadcast action around the ways responses to HIV help individuals and communities, while also working to to eradicate harms that exacerbate an HIV diagnosis, such as anti-black racism,  the prison industrial complex, misogyny, ableism, economic inequality and more.

Reading The Sense of Brown has made the collective’s work less ineffable to me. While I do not think that brown and HIV are analogous, I do find thinking about the brown commons, and our HIV collective alongside each other instructive. While it would be wise for me to proceed by considering the differences, and the limits of my thinking here, for now, I am grateful for Muñoz, and feel further indebted to him and the spirit of brilliance he let flow through him and back into the world.