In February this year, Arbert Santana, my friend and collaborator, died in a hospital in New York City. I miss him. Deeply.

The last time I saw Arbert alive he was lying unconscious in a hospital bed. Tubes and cords ran this way and that across his body, binding him to life support systems that made it impossible for us to get close to him. This was Arbert Agonistes, the penultimate performance to a pretty remarkable life. A week later, at his funeral in El Barrio, one of the oldest Puerto Rican/Nuyorican neighborhoods in New York, his partner David dressed him in a jacket designed by a close friend and fellow House|Ballroom “legend.” Arbert wore this jacket for some of his most celebrated turns on Ballroom runways.
The House|Ballroom scene is a formidable network of mostly African-American and Latino/a transgender and gay and lesbian men and women. It has been around for decades. Its roots almost certainly reach as far back as the Harlem Renaissance, one of the many waves of world-changing creative production by the African-American community. The houses into which Ballroom members organize themselves are a source of support and care. In fact, the leaders of the houses are known as “mothers” and “fathers” and members are referred to as “children.” Mothers are unequivocally the most important figures in this intentional kinship system. Arbert was the founding mother of two houses.
Houses also encourage and support lives of exuberant, participatory creativity, the dramatic and often contentious results of which are shared at “balls.” At these performance events, representatives of the houses compete against each other in categories inspired by fashion, popular culture and everyday life. A great deal of the performance is concerned with gender crossing and gender play. Systems of glamour, class and fame are also very important. “Legend” is the honorific bestowed on those members whose contributions as caregivers and creators stand out from the rest. Arbert was a legend because of his exquisite sense of style and the effectiveness with which he wielded his maternal authority.
In the year-and-a-half prior to his death, Arbert and I collaborated on the development of the Ballroom Archive and Oral History Project. The archive is a process of actively gathering, recording, organizing, and circulating histories of the community within the community. We spoke of it as a project for the rest of our lives and as an investment in the survival of the scene, which we measured, implicitly, in the notion that it would outlive us. This hope was not based on an abstract notion of the end of a community, for the Ballroom community has lost and continues to lose many of its members at very young ages. It is at the intersection of populations that have the highest HIV-infection rates in the United States, is the target of brutal and frequently murderous homophobia and transphobia, and is the target of the social violence that is the condition of the poor. Only in his early forties, Arbert was another of these deaths before his time. My wish was and remains to carry through with this project an imperative I encountered in 1990 scrawled on an abandoned pier on the Hudson River: “Live to be Legend.” The Ballroom scene continues to teach me what this statement means both about living beyond the conditions of one’s own mortality and wanting to live a life that is, in many respects, larger than life.
When Arbert and I embarked on this project, Edgar, a mutual friend, shared with me his sense that Arbert was aware of his failing health and that his investment in the project represented a desire to leave something important for the community. He wanted to make something that would continue to “mother” even after his death. The logic would be, I suppose, that if he took care of the community’s collective memories, memory itself would become a form of care. History will provide a sense of place, a home, a house, and be a source of inspiration. And something to wear to a ball! Our common investment in appropriating history as a site for the struggle to live, a biopolitics we might call it, remains very important to the work we are doing even now that Arbert is gone.
While Arbert never linked his health struggles with his work on the archive in our conversations, he spoke often to me of how the death of his mother a year earlier made him aware, more aware than ever before, of the painful consequences of loss. He grieved his mother passionately. He could be comforted but was ultimately inconsolable in the sense that grief is lonely work. This loss threw into relief his mourning for the Ballroom “children” he had lost over the years. In one of the public presentations of the archive and oral history project—a discussion between members of the Ballroom scene and feminist and queer studies scholars—he referred to the “unnaturalness” of a parent losing a child. The performance of this observation captured much of what is at stake in the House|Ballroom community. After talking about losing a child, he reflected on what he had said and on the fact that it was he who was saying it. He intended no irony in his description of himself as an effeminate gay man and a mother who has lost her children, a number of whom were actually older than him. This is not a drag performance. Like so much else in the Ballroom scene, what is at stake in this mothering is the power defined by the relationship between what “is” and what is “as if.”

The calibration between appearance and what those in the Ballroom scene call “realness” guides investigations into normative notions of gender, sexuality, family, race and class. Performance, specifically mimetic performance, is the method used to undertake these investigations, which places the Ballroom scene in a long tradition of struggle from the margins. I would argue, for example, that it continues modes of resistance, survival and celebration begun during slavery. These were carried forward into the post-emancipation, anti-racist movements of the civil rights era and are found in jazz, hip-hop and the Ballroom world. The substance of memory courses through this all as traditions and legacies are considered and manifest in the very moment in which they are repeated, shifted, and returned within some innovation or other. That we are dealing with the substance of memory is especially clear now that the archive is home to Arbert’s memory.
The question of how to archive this memory, the memory in and through performance, is at the center of our work. We have turned in many directions for guidance and examples and are trying a number of approaches. Working with a small group of Ballroom members and supporters, many Arbert’s surviving children, we developed questionnaires to guide oral history interviews and initiated a process to record and interpret at least three generations of changes to Voguing, the dance form developed within the Ballroom scene. It is called Voguing because it was first inspired by poses in women’s fashion magazines. We also began constructing archives, one of which is developed by asking people to identify the music that most exemplifies the Ballroom scene for them. A small room in Arbert’s apartment became the repository for his personal collection of artifacts and the objects received from the first sixty oral history interviewees. These artifacts are now re-scattered and we are back to addressing questions about the substance and purpose of an archive. Might it be possible to consider objects in the same way we deal with movements in different generations of Vogue, as a kind of embodiment? Is there a difference between caring for bodies and caring for embodiments?
The small group of Ballroom members and supporters who are working on the formation of the archive and oral history project bring different skills and approaches to the table. Two of us, myself included, have training in anthropology and cultural studies. Others, myself included, are artists of one form or another who work with film, photography, fashion, design, and sound. Everyone has been or is currently involved in some sort of social service organization, which means that there is an inevitable consideration of questions of intervention. At their heart, these questions are about both the mundane and sublime demands of living and the practices of care.
We remain at the point where we are developing the initial terms for the project, and the commitment to “caring for” is constantly troubled. We understand that being custodians of memory is a form of caring for something. Emphasizing this form of care tends toward conventional notions of archives as repositories or safe houses. We also consider the project one of several components or strategies in caring for the future of the House|Ballroom community, which makes it an action, tool or method in what can be considered a public health process. A third approach, one that partially bridges these two, is to align our work with learning and teaching. This brings the issue of embodiment raised earlier into dialogue with pedagogical concerns. Thus, we might ask: what are memory, tradition, legacy and all of the other vectors of archiving and history when considered within the context of the multi-generational history of the scene? Or, how does the Ballroom scene sustain itself while also changing itself?
One of the most important lessons I was given by Ballroom members occurred almost fifteen years ago, a few years after I first saw the “live to be legend” graffito on the pier. I was one of a group of researchers based in a prominent school of public health and was asked to contribute to a year-long HIV/AIDS prevention training program for young lesbian, gay and transgender people, almost all of whom were members of or were closely involved in the House|Ballroom scene. The conventions of HIV prevention were well rehearsed and codified by this point and there was a high level of agreement among researchers, medical providers, government officials, and policy makers regarding HIV prevention, especially with regards to sexual risk. The curriculum was pretty clear. We would cover the basic biology of HIV/AIDS transmission, move onto sexual risk practices (basically, the transmission of fluids), prevention techniques, and then, as a nod toward social difference, talk a little about sexual cultures (code for sex work, multiple partners, and various other “non-normative” sexualities). Before beginning the curriculum, however, I thought to ask the group if there was anything in particular they wished to learn and if there was anything they might wish not to learn.
“Do not talk to us about the kind of sex we have,” was one response. This was not a refusal or withholding of knowledge, but an expression of exhaustion with repeated experiences of objectification. As is the propensity in public health, great attention is paid to the health of the poor and the marginalized. It is a paternalism rooted in fears of the poor, charitable care, and commitments to social justice. Despite some fabulous rhetoric in contemporary public health circles regarding empowerment and even liberation, the methodological terms of these studies—almost always in the form of behavioral questionnaires—carries forward a legacy of looking at rather than being with the poor. As mostly young people from poor racial and ethnic minorities and poor families, the people in this group figured out at a young age that they were objects of fascination. They are valued as research subjects although not so much as citizens. And they are feared because they are at high risk, posing threats to themselves and others.
Epidemiological data has shown year after year that infections in the United States are disproportionately concentrated among sexual minorities, with young Black and Latino men-who-have-sex-with-men among the highest risk groups. It was precisely the language of public health used in the last sentence that became the focus of the group’s analysis. They found it either evasive or offensive. “Disproportionately concentrated” was translated into “people who are not middle class, white, and straight,” and “men-who-have-sex-with-men” was dismissed as reductively mechanical and inappropriately applied to pre-operative transsexuals. This was a misreading of the bodies or, more accurately, the embodiments of members of the group.
When I introduced information on research being done at that point into the relationship between “stigma,” “social exclusion,” “social violence,” and risk, its took only a brief time before someone stated that what I was really talking about was hatred, the fact that some people are hated and should simply die. These new terms became the language of the classroom. Incidentally, in the Ballroom scene, this sort of critical dismantling is known as “a read” and is not far from what literary critics or cultural theorists mean when they go about “reading” a text. The sting in the tail of this activity is simply more openly celebrated and valued in the Ballroom community. It is also why two people Voguing on a runway at a Ball is called “a battle.” Each aims to dismantle choreographically the performance of the other in order to construct something more insightful, more entertaining and more thrilling in the process. This dismantling and one-upmanship too is a relation to the past.
The response to the question of what we might learn resulted in two suggestions. First, that we investigate why is it that poor, non-white, queer folks are more infected than others. This initiated a new curriculum concerned with histories of exclusion, discrimination and violence. The second, that we organize classes about love. Not the psychology of love as much as its epistemology. What do we become in love, what does love teach us, and what does it mean to organize as a collective and community bound in love. This curriculum focused on many things, among them the difficult question of why we might risk our lives and the lives of others. Two of the group died of AIDS-related conditions before the year was out and a number became infected in the same period, a sure confirmation that knowledge may be necessary but not sufficient to protecting oneself. A second key focus of this curriculum was our work as artists, for we were all, in one respect or another, artists.
It was through the class on love that I met Arbert. He came to me as a parent of some of the members of the group and in his capacity as the director of an HIV/AIDS prevention project focused exclusively on the Ballroom scene. We were both struggling with the structural contradictions of our roles and the effect this had on the ways in which we cared for the members of the scene. On the one hand our institutional positions and discourses demanded one set of terms, whereas our face-to-face encounters involved another. Given that the terms of analysis determine the terms of intervention, we knew that these contradictions had real consequences.
I was deeply affected by the discussions of love. They raised many questions about why and how we care for others, for each other. These questions were taken up in what I have referred to as our “work as artists.” This work was characterized by an unambiguous sense of necessity, which is what comes across at Balls. The aggressive competitiveness is a way to organize urgent, rapid-fire collaborations, which serve to advance one question or another regarding identity, power, status, reality, and survival. After years of being talked at about sexual risk and a plethora of related concerns, such as drug use, sexual orientation, education and employment, the group demanded evidence of a willingness to risk collaboration. What would it mean to embody the collective struggle regarding life and death, to battle with each other and together to develop new propositions for living? What would it mean to do this work in love? The dismantling and reorganizing of each other’s propositions and, in many respects, our lives became our work. It was sometimes brutal, was always messy, and the position, methods and procedures I had brought with me in my capacity as a social scientist were simply not up to the task. Creative work, a kind of doing, undoing, redoing, became the methodology. One way to describe this is the embodying of time in an object, which might be our bodies as being-toward-something, a video recording of vogue performances or the articulation, through movement, of an item of clothing.
Teaching and learning in this way was not the first time I had considered the Ballroom scene from the position of an artist. My first encounter had taken place a few years before these classroom sessions when I was in a critical theory program at an art school in New York. It was the early 1990s and I was simultaneously shaken by the ravages of the AIDS epidemic and aroused by the militant activism of the first decade of the crisis. AIDS became the focus of my critical work, which I also regarded as a form of art practice (we were very determined at the time to reject a theory–practice divide). As a recent immigrant to the United States, I was also inclined to cling as hard as I could to anything that gave me a sense of place, even something as bitter as the AIDS struggle. Much as now, that work was conditioned by the death of a friend. Jay was my first real friend in New York, a best friend. He died of AIDS. He was twenty-nine years old.
It was when Jay began to get really ill that I first ventured to the abandoned piers on the Hudson River. At the time the piers figured prominently in the gay folklore of the city for they were one of New York City’s most important public sex venues. “Live to be Legend” was spray-painted across a concrete barrier marking the edge of one pier. I read this as an epigraph to the place itself. This was an extraordinary site within which to experience and consider the impact of the AIDS crisis. The decaying structures provided a tempting symbol of collective loss. They materialized the sense at the time that being gay was to live beyond your time, a sort of passing into legend.
On the other hand, the piers continued to function as an incredible place of refuge and intimacy in the face of despair. It was here that I learned something about the political significance of sex. To have public sex on the pier was to put one’s body in time, to draw from and contribute to a long history of refusal of attempts to repress, control, and condemn sexuality. Yet it also meant having to confront the consequences of the new communal regimes formed by this refusal. So it was that I undertook a study of racism on the piers as one of the limits in this particular pursuit of freedom. Late one Saturday night, while doing ethnographic research for this project, I encountered on the piers a large group of African American and Latino/a youth hanging out, making out, and Voguing. They were preparing for a Ball. To make the entrance fee for the Ball, some of the young people had sex with the white men on the piers.
After spending a few years studying critical theory and cultural studies and applying these approaches to the AIDS crisis, I felt enormous relief when I moved into a public health research organization. My studies in anthropology and ethnographic methods bridged these worlds and I began investigating the political economy of health inequalities. Yet the world of public health is always conditioned by concerns of the state. The emancipatory practices inspired by the discipline’s fundamental tenet that individual and collective health are inextricable, is tempered by arcane administrative regimes. The call to love threw these regimes into crisis.
I have spent many years moving between work in public health and my work as an artist. For the past eight years I have been a member of the sound-art collective Ultra-red. “Moving between” is an imprecise description of the overlap and dialogue between these practices. Like public health, art is an interdisciplinary venture, and like art, public health is fundamentally unresolved about its objects and methods, despite the dominance of U.S.-style behavioral science. These similarities aside, there is great antagonism between the approaches of art and public health. Some in the art world have been unequivocally dismissive of the propensity for intervention among artists engaged in public health and other social service settings. My sense is that these judgments are based on a belief that the greatest contribution artists make to social problems is to represent dilemmas, articulate questions or reveal contradictions. It is not the artist’s work to stick around to engage with these dilemmas, questions and contradictions. Public health professionals, on the other hand, often refuse even to acknowledge the legitimacy of artists’ questions. Art and artists are to be instrumentalized, used as ways to make palatable the bitter pills of risk and safety, those limits to freedom. Art comes after knowledge. Artists manage the circulation of knowledge through our systems of representation.
Like most everyone involved in developing the Ballroom Archive and Oral History Project, social service organizations or the institutions of public health are an intermittent source of income. Simply dismissing this as work for income and saying that the “real” work is art is inaccurate. For me, one is an inoculation against many of the self-satisfied claims of the other. I have found it valuable to choreograph battles between the two. This is essentially what Ultra-red invited me to do, when I was asked by the collective to collaborate on a long-term project concerned with the AIDS crisis in North America. The project, SILENT|LISTEN, was situated at the conjunction of propositions of art and public health. It was precisely because we moved between these worlds that the project had critical potential. It also incorporated a number of the propositions that emerged from my teaching and learning with members of the House|Ballroom community, such as the need to see our work as not simply a process of generating knowledge or experience but as collective organizing toward care.
A crucial element of Ultra-red’s work on AIDS was the assumption that through experience with everyday life, people already have access to an analysis of their lived conditions. In place of the conventions of professional research, where the terms of analysis are almost entirely foreclosed by the time we ask the questions, Ultra-red facilitated a collective process of reflection. This critical and deliberative analysis of experience was directed toward the development of new terms of analysis. By repeating the process with the same constituencies, we bring together the projects of analysis with those of world making. Might this be a form of love? One vital contribution art makes to this back and forth is to manifest experience and analysis, even in its rudimentary form, into objects that can then be collectively discussed. Embodiment is a version of this object making. Our discussions do not privilege the aesthetic value of the object, although this is also not suppressed. Collective consideration of critical objects helps produce a critical collectivity and knowledge towards transformation.
A central concern of Ultra-red’s work, which is now also a part of the Ballroom archive project, is the contextual conditions of care. These conditions are determined, on the one hand, by our knowledge of and participation in research and service delivery processes as well as the interests of the art world. On the other hand, they are determined by collaborative investigations involving the repeated making, unmaking and remaking of performances of experience. Thus we shift between forms of care that help drive economies of knowledge, state power and representation, and those that emerge from mutuality and friendship. These different notions of care are directed toward either social management or emancipation. Choreographing the encounters between these two notions of care and their respective concepts of the future is what is at stake in this work. In the terms we set out for the Ballroom Archive and Oral History project, collective survival requires attending to both the continuation of the community and its transforming, its living, and its becoming legend. As we continue this work without Arbert, we are constantly reminded that this requires addressing loss, grief, and the possibility of radical change. By constructing the archive as a pedagogical rather than objectifying practice, we battle with the contradictory conditions of time as continuity and time as a form of living beyond. It is insufficient merely to represent this contradiction, which is what almost all research and art making aims to achieve. It must be embodied and lived through. This requires sticking around to take up the questions in often brutal and always messy projects of love.

This article originally appeared in Actors, Agents and Attendants — Caring Culture: Art, Architecture and the Politics of Health, edited by Marjus Miessen and Andrea Phillips, published by SKOR and Sternberg Press in 2011.