Making the [Private] Public: Resonances between Art/Activism/Caregiving (1980 – 2080)

If pandemic logics bring about a rupture in lifestyles, curator Eduardo Carrera reviews the relationship between the artistic and the political around pandemic milestones, such as SARS and HIV/AIDS, to question how we may dismantle social control over bodies and move towards a health system that allows us to take care of ourselves and others in fairer ways.

What has been the link between AIDS and artistic practices? What critical or subversive uses have artists found to resist the State’s interference on bodies? How do these practices transform the sense of public space? What other possible encounters do artistic practices between individuals and communities allow? Can activism be a tool to support ourselves when life is at risk? In what ways have these practices intervened in public legal and health systems? What is the relationship between bioethics, dissident bodies, and social control? What feelings matter in public life? What happens with grief when it is impeded, prevented, taken away, denied, and deferred? How can we re-elaborate this space of mourning, no longer individual but collective, and re-inscribe it in the space of the political and the public?

With these and other questions in relation to certain specific milestones of the “LGBTIQ+ community and activism and its relationship to contemporary artistic practices” in mind, I seek to review different ways of bodies interacting with the public sphere, especially regarding legal and health aspects. In order to explore how these affective networks sustain political, cultural and sexual communities, I am interested in reflecting on activism and artistic practices in their affective and even therapeutic dimensions, to question the sectioning between the public and the private, the affective and the political, on which such distinctions respond to binary colonial logic.

In the video Heaven by the artist Luiz Roque, set in the second half of the 21st century (in the year 2080), the existence of a saliva transmitted disease is announced. A threatening epidemic in Brazil that primarily places the trans* community at risk. Activists reject this theory, claiming that it’s a déjà vu of the strategies of segregation and social control that emerged during the 1980s, linked to the HIV/AIDS crisis. It is no coincidence that the story takes place one hundred years after the beginning of the 1980s, a decade marked by the discovery of the virus.

An epidemic of meaning, nothing will ever be the same after them: a resignification of multiple aspects of life in common, from the way we relate to each other, to inhabit public spaces, to the way we love and express affection and build eroticism.

In the video, the imaginary of fear is fed by the media; at the same time, control measures are announced: condoms that cover the whole body, drones that monitor the behavior of “infected” bodies and physical spaces that separate “healthy bodies” from “sick bodies.” At the beginning and end of the film, we see one of the actresses escape from what appears to be a hospital. In a hurry, she removes her health registration bracelet and intravenous drip, starts a car, and at full speed escape from the place where her body is being classified as an infectious object of medical study, and where any caregiving space is nullified by control and surveillance. In that gesture of flight lies a re-appropriation of bodily agency that reminds us that biopolitics and its pharmacpornographic devices can also be under our control and desires.

With a cast made up of transsexual actresses, Heaven reflects on the State’s power over bodies, in a setting where bureaucratic borders lead to violent dissociation between biological life and existence. This way, the film raises the discussion on bioethics and State interference on bodies as a form of political and social control. The virus as an agent that exerts control over bodies, and that depoliticizes them from the condition or category of “sick body,” “contagious body,” “dangerous body.” It also depoliticizes the collective, demonstrations, and participation. It deactivates public spaces, and social encounters are now a reason for risk and contagion.

In 2003, Hong Kong became the epicenter of the SARS[1] crisis. The closure of a “first world” city and the segmentation of society and quarantine led to an unexpected change in the political awareness of Hong Kong citizens. Just after the end of the epidemic, a large number of people mobilized to protest against a new internal security law, which caused the emergence of a new active political community.

The ambivalence in the identity of the people of Hong Kong was reflected, and to some extent still is, in the figure of Leslie Cheung, an iconic queer actor and singer who attracted international attention for his performance of Cheng Dieyi, the androgynous star of the Beijing Opera, in the film Farewell My Concubine, which won the Palme d’Or at Cannes in 1993. In 1997 he starred in Happy Together, directed by Wong Kar Wai, a classic of gay cinema about a couple struggling to find a peaceful coexistence. At the 1998 Hong Kong Film Awards, they described the film as one that would make the audience want to vomit. A music video directed by Leslie, in which he appeared half-naked in the company of a male ballet dancer, was also censored by the main local television channel. It wasn’t an easy time to be a fag. Homosexuality was still seen by many as an illness and abnormality in Hong Kong, especially after the first local case of AIDS appeared in 1984. It was not until 1991 that homosexuality was decriminalized in the territory and the LGBTIQ+ movement finally became visible.

Cheung committed suicide during the height of the SARS crisis by jumping from the Mandarin Oriental Hotel in central Hong Kong. His shocking death played an important role in mobilizing Hong Kong citizens in order to attend Leslie’s funeral, ignoring the health warnings in place at the time (politics of fear, illness, and the specter of pollution in society and culture). Despite his queer subjectivity, Leslie’s life and career have helped forge a strong sense of identity for Hong Kong’s local culture.

The current pandemic can be reflected in SARS and also in AIDS. These epidemics unleash what Élisabeth Lebovici called an epidemic of meaning,[2] nothing will ever be the same after them: a resignification of multiple aspects of life in common, from the way we relate to each other, to inhabit public spaces, to the way we love and express affection and build eroticism.

For Ann Cvetkovich, AIDS–along with the Holocaust, the Vietnam War, World War I and other events that define the nation and the world–has achieved a status of what she calls national trauma by having a profound impact on history and politics from the uniqueness of the experiences involved. There is no doubt that state attention (and public health policies) to AIDS constitutes a considerable victory—given the early association of AIDS with gay men—and takes a central place in the development of policies against homophobia. On the other hand, AIDS has produced renewed forms of radical politics of sexuality and eroticism through its links to “vices” and “perversions,” such as the fetishistic possibilities surrounding non-penetrative sex, drug use and sex work. Due to issues such as immigration, the prison system, and the national and global capitalist economy of health care, it has also required an analysis and political strategy that connects sexuality with race, class, and the construction of a nation. But only a few versions of AIDS seem to make it into national public life or the popular culture archive, including cultural products such as the red ribbons,[3] Rent[4] and Philadelphia,[5] as well as the recent FX series, POSE.

POSE is a series about “Ballroom or Ball Culture”[6] and its relationship with the Black and trans* community set in the late eighties and early nineties in New York City. In one of its episodes, it recreates one of the well-known actions of the ACT UP[7] collective that occurred in 1989. Die in consisted of occupying St. Patrick’s Cathedral with hundreds of fainting bodies on the floor protesting the role of the church and its intervention in public health policy regarding HIV/AIDS. The episode offers a sensitive and heartbreaking account of ACT Up and AIDS activism in New York, detailing how the movement broke into churches and the media to get the state to start researching effective treatments for the virus while producing images that still insist on collective resistance, the common body and caring for one another.

AIDS activism represented a significant instance of post-1960s movement activism. It built on the models of direct action established by the civil rights, antiwar, women’s, and gay and lesbian movements, thus proving they were still viable; but it was not simply repeating the past since it also created new forms of cultural and media activism, and incorporated a distinctive flair for the visual and performative.[8]

Elisabeth Lebovici stresses that the inaugural equation SILENCE=DEATH[9] has remained associated with the pandemic for its power to mobilize. After that, explains Douglas Crimp,[10] a kind of graphic epidemic emerges that accompanies AIDS activism and affects all its actions in public space, as well as the supports for its communication: the very bodies that wear T-shirts, badges, stickers, banners; the photographs and videos that are made of them. The theatricality of the bodies in action, their cries, their songs, their sounds, are inseparable from the images they transmit. They are media professionals, artists, graphic artists, and art historians who are committed to the activist practice and their own experience.[11]

In Ecuador, sexual dissidence was considered a crime with a sentence of up to eight years of imprisonment. It was not until 1997 that article 516 of the Penal Code, which criminalized homosexuals, was considered unconstitutional. Only in 2018 did the World Health Organization (WHO) excluded transsexuality as a mental disorder. In May 2019, the Frente de Transfemeninas y Gays del Ecuador ‘Nueva Coccinelle’[12] [Transfeminine and Gay Front ‘Nueva Coccinelle’ of Ecuador] sued the Ecuadorian State for the “grave human rights violations” perpetrated by the criminalization of the LGBTIQ+ community in Ecuador, especially trans* women, during the process of decriminalization of homosexuality. Fifty years after the demonstrations in Stonewall, in the year 2019, Ecuador approved the same-sex marriage law, offering equal rights to its “citizens”. A us distorted by the gay pro-marriage agenda in tune with the heterosexual regime.

Currently in Ecuador there are “dehomosexualization clinics or centers” whose “medical treatments” are illegal. According to the testimonies and complaints of young people and women who have been forcibly confined, such “treatments” include involuntary confinement and isolation, physical and psychological torture, humiliation, sleep, and food deprivation, as well as corrective rape. In the legal sense, homosexuals are no longer considered criminals but sick people.

For our sexual communities, desire, autonomy, and decriminalization are deliberately health issues.

In June 2011, in the Parque del Arbolito in the city of Quito, a “People’s Trial” was held to show the country and the world the serious human rights violations suffered by lesbian women who are admitted to rehabilitation facilities, that, in a clandestine manner, seek to modify their sexual identity and orientation. The demonstration was a call for attention to public health and human rights policies. In the central square of the park, chairs, tables, and other objects were installed to simulate a courthouse, an agora. Feminist activist and rapper Cayetana Salao, actress and activist Paula Castello, and a lesbian woman (a clinic survivor) begin the trial. They read testimonies, make their pain public, and challenge the State and civil society with public verbalization. There are several empty chairs with the names of State authorities who were invited to attend the public event. Also present were civilians who supported the cause. Making these traumatic stories public serves as a reminder that the experiences being documented are historically significant and shared. Returning to these stories to see what is left of them does not have to be a traumatic act; it can be a therapeutic resource to heal the present and project a future.

In the Juicio Popular contra la homo-lesbo-trans-fobia estructural del Estado y la sociedad [People’s Trial against the State’s and society’s structural homo-lesbo-trans-phobia] the organizations, activists, artistic collectives and those affected publicly denounced the omissions of the State. This ethical-political act of expression of feminist popular power and political actions such as Die ins have also been promoted from an artistic, feminist, and critical production, one nourished by the symbolic heritage, the documentation of cases, and the same advocacy actions. These are processes that were also conceived as a mechanism for healing or mourning for those affected, as well as for public awareness and information and as a direct intervention on the public policies of the State and the disinformation of the media and the church.

For Ann Cvetkovich, these public manifestations of affection add a new layer of meaning to the expression of the intimate public sphere, counteracting the invisibility of the feelings of loss and indifference that they arouse, making them extravagantly public and building collective cultural practices that can recognize and show these feelings. Grief and loss are multiple and diverse; Crimp points out that trauma takes many forms, that AIDS does not just mean the ghost of death, but the loss of particular forms of an erotic-sexual and cultural contact, and that one could mourn the loss of unprotected sex as much as the death of friends, the prospect of death itself, confinement, family violence or emotional breaks and separations.

In the near future, the relationship between life, body, health, illness, community, caregiving, laws, and rights should be increasingly promiscuous. We need socio-community health to sustain each other. A resilient public health that guarantees certain care when faced with life-threatening emergencies and that escapes the control, violence, and vigilance of the cis-hetero-patriarchal-racist regime. We also need a legal system that puts life first; one that, for example, forces architectural spaces or infrastructures used for de-homosexualization clinics to be re-appropriated as community spaces, houses of coexistence, places of refuge and caregiving so that sexual dissidents and vulnerable bodies have access to housing and health. For our sexual communities, desire, autonomy, and decriminalization are deliberately health issues—in the words of Luke Disalvo.[13] To speak of caregiving in our communities is to recognize our political link to desire, eroticism, and sexuality. There arises the possibility of weaving common, affective networks that allow us to emotionally and materially sustain our existence from disobedience.

The text was translated from Spanish to English by Carla Canseco and copy-edited by Isabel Ruiz Cano.


  1. SARS (severe acute respiratory syndrome) is an atypical pneumonia that first appeared in November 2002 in the province of Canton, China.

  2. Élisabeth Lebovici, SIDA (Spain: Arcadia, MACBA, 2020).

  3. The famous red ribbon originated in 1991 when a group of New York artists under the name of Visual AIDS Artists’ Caucus decided to look for a symbol that would show solidarity with those who carried the virus. So they organized themselves and distributed them among the participants of the Tony Awards of that year.

  4. Rent is a 1995 musical that describes the lives of various subjects and their struggles with sexuality, drugs, paying rent, and living in the shadow of AIDS. It takes place in the East Village of New York City from 1989 to 1990.

  5. Philadelphia is a 1993 American film directed by Jonathan Demme and starring Tom Hanks and Denzel Washington. Young lawyer Andy Beckett’s (Tom Hanks) life changes when he discovers he is living with HIV and is fired from the law firm he works for.

  6. Ballroom or Ball Culture was born in the twenties in the Harlem neighborhood as a queer scene: a space of articulation of LGTBQ presence in the Black and Latino community of New York. The definitive birth of this movement took place in the 1980s as a response to the AIDS epidemic.

  7. ACT UP is the acronym for the AIDS Coalition To Unleash Power, a direct action group founded in 1987 to draw attention to the AIDS pandemic and the people who suffer from it, in order to obtain favorable legislation, promote scientific research and care for the sick, until all the necessary policies are in place to achieve the end of the disease.

  8. Ann Cvetkovich, An Archive of Feelings: Trauma, Sexuality, and Lesbian Public Cultures (London: Duke University Press, 2003).

  9. The poster SILENCE=DEATH (1987) was also used by the group ACT UP (AIDS Coalition to Unleash Power) as the central image of their campaign of activism against the HIV/AIDS pandemic.

  10. Douglas Crimp (1944 – 2019) was a historian, critic, curator, and activist. In 1987, he edited a special issue on HIV/AIDS in October, entitled AIDS: Cultural Analysis/Cultural Activism. In the introduction to the article, Crimp advocated “cultural practices that actively engage in the fight against HIV/AIDS and its cultural consequences.” During this time, he was an active member of ACT UP, a militant group against HIV/AIDS in New York.

  11. Élisabeth Lebovici, SIDA (Spain: Arcadia, MACBA, 2020).

  12. The Coccinelle collective was one of those that actively participated in the decriminalization of homosexuality in Ecuador in 1997. The members of the Coccinelle Collective were victims of torture, sexual violence, sexual abuse and cruel, degrading, and inhuman treatment. The State violated their rights and they demand just and comprehensive reparations. It is fundamental to show solidarity with their struggle, which is an open door for other people to take courage and denounce the events that occurred before the Dirección de la Comisión de la Verdad.

  13. Lucas Disalvo, “Un futuro para el sexo,” in La protesta sexual. Periódico anarquista discontinuo; year III, issue 18. To consult the archive visit: <https://protestasexual.hotglue.me/>

filter by


Geographic Zone