Introduction

In devising a title for this dossier article, I have riffed upon and borrowed somewhat from How to Have Sex in an Epidemic: One Approach, that path-breaking seminal pamphlet published by Richard Berkowitz and Michael Callen during the early days of the AIDS crisis in New York City. As one may infer from my paraphrased title, “How to Be Irish in an Epidemic,” since the first clinically identified cases of AIDS in Ireland in 1982, this country’s cultural, sexual, and biopolitical trajectory with this disease has differed vastly from other similar Global North anglophone nations such as the United States, the United Kingdom, and Australia. Indeed, the Ireland of the 1980s in which HIV first rose to epidemic levels was a very different country from the Ireland of today: Sexuality of any expression was contained and controlled by an over-reaching Catholic Church, itself propped up by—and often operating as an arm of—a patrician, authoritarian State. Homosexuality was outlawed, as was contraception, with condoms available only to married heterosexual couples who could obtain a doctor’s prescription for them. Socio-economic conditions, too, were grim; the first four years of the 1980s saw Ireland mired in deep recession with soaring unemployment levels as three successive governments won and just as quickly lost power.

AIDS has been shrouded in multitudinous discourses of stigma and shame. Indeed, as I have argued elsewhere (O’Brien 2016), HIV-related stigma in Ireland is invisible by its very ubiquity. In other words, stigma is the primary lens through which HIV and AIDS are viewed in Ireland. Many Irish people are not aware of the differences between HIV and AIDS, while a large number remain ignorant of the treatments available, firmly entrenched in the 1980s rhetoric of “AIDS as a death sentence.” Yet, such people are not entirely to blame; there have been no government-sponsored HIV awareness campaigns since the early 1990s. Therefore, a knowledge-hungry public looks to the culture and to cultural productions that carry representations of HIV or AIDS for information about the virus. Frustratingly, the majority of these cultural productions are anachronistic and rarely acknowledge the existence of antiretroviral therapy (ART), preferring to scandalize and shock the public with AIDS death narratives. There exists of course, mainly in the theatre and visual and performing arts, a nascent yet growing cohort of artists and creatives who push back against these stigmatizing discourses. Yet, because this stigma is omnipresent, their work must tackle it, quell it, in order to tell more realistic stories of what it means to be HIV-positive in 2020s Ireland. In other words, stigma is still a central theme in their work.

Cormac O’Brien

September 2022

Document 1: Gay Health Action remembered

Bill Foley, a now-retired leading AIDS activist who manned the barricades alongside a tiny handful of brave AIDS activists in Ireland in the early 1980s (homosexuality was decriminalized in Ireland only in 1993), offers a retrospective analysis of the fraught times when same-sex desire in Ireland was a crime and resistance to heteronormativity was a truly risky endeavor.

The beginning

It all began in Los Angeles, United States, in 1980, when gay men began to develop rare fatal diseases. Kaposi’s Sarcoma was a skin cancer normally associated with elderly men. But now it was killing men in their 20s and 30s. Pneumocystis Carinii Pneumonia (PCP) was another illness associated with those with immune deficiency that came to be fatal for young American men. These emerging trends led the Centers for Disease Control and Prevention (CDC) in the US to identify a new illness. Initially it was referred to as “the gay cancer” or “gay related immune deficiency.” By 1982, other groups were being identified as suffering from the same complex, including hemophiliacs and Haitian immigrants to the United States. It was only then that the US health system began to take it seriously. This was a new infectious disease that was spread through blood and sexual contact.

Political origins

In Ireland, the gay men who would ultimately establish Gay Health Action (GHA), the country’s first organization to respond to HIV, were busily involved in LGBT+ activism. Most were members of either the Dublin Lesbian and Gay Men’s Collectives (DLGMC) or the Cork Gay Collective. The DLGMC (formerly the Dublin Gay Collective) was founded in 1981 and sprang from the first conference in Ireland to address LGBT+ issues held in Cork in 1980. We (DLGMC) arranged a follow-up conference in Trinity College Dublin in 1982. DLGMC was a collection of gay and lesbian socialist activists who aimed to link oppression of the LGBT+ community with other struggles, such as the women’s movement and the trades union movement. We aimed to make the issue of LGBT+ rights more visible through protest and forging alliances within the left political movement at the time.

DLGMC was responsible for some seminal moments in Irish LGBT+ and socialist history. We organized a protest outside the Garda (Police) Station on Pearse Street against the extensive interviewing of members of the Gay Community following the murder of Charles Self in January 1982. We participated in the unsuccessful Anti-Amendment Campaign in the early 1980s to prevent the prohibition of abortion being inserted into the constitution. We organized the Fairview March in 1983 in protest against the lenient sentence handed down by the courts to young men who had beaten Declan Flynn to death. There were small Gay Pride protests in Dublin prior to 1983, but the Fairview March brought out more people to the annual event. It kickstarted a re-invigorated Gay Pride celebration. In 1986, we published the first book documenting the lives of Irish lesbians and gay men in Ireland, entitled Out for Ourselves. During these years, we had also become involved in every major issue affecting rights in Ireland. These included anti-criminal justice legislation, supporting trades union movements and advocating for LGBT+ rights within them, and supporting the divorce campaign. Out for Ourselves was the last significant action of the Collectives before we disbanded.

Gay Health Action

The news of HIV did not register significantly with us during most of these years. In 1984, some of us began to discuss early reports from the United States about the “gay plague.” The possible implications for the Irish Gay Community were clear. In researching the facts about it at the time, it was clear that it was a sexually transmissible infection, and gay men’s groups in the US were already campaigning about it (Gay Men’s Health Crisis, a New York-based HIV/AIDS service organization, was founded in 1982). They were providing information and advice about the disease to the community stateside. It was clear to us that it would not be too long before it would arrive in Ireland. We decided to organize around it, and Gay Health Action was founded in 1985 (the same year condoms were legalized in Ireland). By then, the disease was understood to affect more than gay men and was given the name Human T-cell Lymphoma Virus Type III, or HTLVIII. However, in the popular press of the time, it remained a “gay plague.”

Gay male sexual activity was still criminalized at the time (decriminalization did not happen in Ireland until 1993). Despite this, GHA decided to launch a national information and education campaign. The aim was primarily to educate the Gay Community of the risks and encourage them to adopt safer sex practices. We also aimed to educate the wider public about the reality of LGBT+ lives and to counter homophobia with facts. Our first leaflet was published in 1985. Taking our lead from our American counterparts, we kept our information sex positive while highlighting risks in vernacular language (see Appendix). Using words like fuck and arsehole in health information was unprecedented, radical, and contentious at the time. It was an uphill battle on so many fronts. We had secured a ridiculously small amount of Health Education Bureau funding for our first leaflet. However, once it was published, there was a storm of media backlash protesting the granting of public funds to promote what was then considered to be illegal activity. It would be many years before we would receive funding for any further information and education programs. There was also some resistance to the information within the Gay Community. Most men had not heard of HTLVIII (subsequently AIDS/HIV). Those that had heard of the disease dismissed it as something that was happening in the US and did not affect us.

It took considerable effort on our part to educate and persuade men of the risks in our regular pub/club leaflet drops. Most media coverage at the time was negatively associating HIV with gay men. It was through dogged determination that we succeeded in getting our information covered in mainstream news media. The work of Gay Health Action began to garner respect. We arranged fundraisers in the form of street collections, private events, and large concerts. This helped to shift opinion in our favor. We were making the point that AIDS/HIV was an illness that could affect anyone. We were providing information to everyone who wanted or needed it—and many did. We made links with drug prevention services and hemophilia organizations as well as educators, including groups of nuns who welcomed our information leaflets as the only thing that was available to help educate teenagers about the risks. Considerable public sympathy was aroused following the death of the hugely popular DJ and television presenter Vincent Hanley in 1987. In 1989, we completed a survey of Irish gay men’s sexual behavior. The survey found that there had been an uptake of condom use by 80% of those surveyed and a widespread move toward safer sex practices.

Under-funding

The reluctance of health authorities to fund our education and information leaflets after our first one led us to devise a strategy of branching out to others affected by HIV. We set up the AIDS Action Alliance (now HIV Ireland) in 1986. This was intended to bring the main at-risk groups together to form a single lobbying platform. It comprised a range of groups that GHA had established (e.g., Women and AIDS, AIDS Helpline Dublin, and Cairde) together with the Irish Hemophilia Society and drug agencies like the Ana Liffey Project and the Merchants Quay Project. Together, we managed to organize workshops and produce generic information leaflets.

However, the Alliance foundered, as individual groups began to feel that they could negotiate better deals without the association of the “illegal gays.” The Irish Hemophilia Society embarked on a court battle that was ultimately successful in securing compensation for their members who had been infected by a blood product provided by the State. Drug programs developed at a rapid pace with the development of methadone clinics and Drug Task Forces throughout the country. This was fed by the idea in health official circles that drug users could present a crossover pathway from gay men to the wider public. By the late 1980s, St. James Hospital had instituted the first specialist genito-urinary medicine hospital and clinic specializing in the treatment of HIV. By 1991, GHA had distributed hundreds of thousands of leaflets, given workshop presentations to agencies, educators, and schools, advised other agencies such as the Irish Council for Civil Liberties (ICCL) and Trades Unions, and successfully lobbied for state-funded services. There were also a range of NGO support groups as well as statutory services providing support to those with HIV. In his book AIDS, the Problem in Ireland (1987), Derek Freedman cited GHA as hugely significant in keeping the number of HIV infections in Ireland low in the early years. Despite the effectiveness of our work in effecting risk reduction among gay men and the legacy of education and information we had forged, we continued to suffer because of inadequate state support. In 1991, GHA took the difficult decision to disband.

Social and emotional impact

Through the years of working with GHA, there was a feeling of working against the tide of institutionalized homophobia. From legal status to the power of the Catholic Church, our attempts to advocate for gay rights and provide sexually explicit information was challenged at every turn. In addition, we were dealing with HIV in our private lives. We, too, were subject to fear of contracting the illness. We had many friends who died over the years from AIDS. In the much smaller gay scene of the 1980s, the loss of another person was devastating, and everyone would be aware of it. There was a constant sense of threat and vulnerability. I remember Ireland was having its “clone” movement at the time—namely, the adaptation of hyper masculine styles by gay men. Body-building, mustachioed, and muscled men appeared in the gay scene. One group of very handsome men regularly socialized together in the burgeoning disco scene of the time. They were regularly seen to be dancing topless at clubs having great fun and providing eye-candy for the rest of us. Almost all of that group died from AIDS by the end of the 1980s. It was devastating to lose so many young, beautiful, and vital people at the prime of their lives, their futures robbed from them. It was emotionally exhausting, and looking back, it’s hard to imagine how we were also able to achieve so much.

“De-gaying” of AIDS

One effect of our campaigning, both here and in other countries (by local gay health groups), was the “de-gaying” of AIDS—that is, the mainstreaming of services provided to all those with HIV, irrespective of route of transmission of the virus. However, gay men continued to be one of the groups most affected by HIV in the Western world. Specialist services were set up for those in the drug communities, for hemophiliacs, and for others such as pregnant women, who were universally screened for HIV. Resources put into gay-specific HIV services have been limited to the Gay Men’s Health Service in Dublin. This service is under-resourced and, in 2019, had to turn away as many people as it treated. Meanwhile, the infection rate among gay men in Ireland continues to rise. We are now the highest risk group in the country again. In 2018, there were 523 new diagnoses of HIV in Ireland; 55% of these new cases were among men who had sex with men. This rise in the rates among gay, bisexual, transmen, and men who have sex with men is likely to continue without adequate and significant investment into STI and HIV services nationally. The introduction of PrEP (pre-exposure prophylaxis) medication as a prophylaxis against HIV is welcome. However, this program, alongside the STI services, needs to be adequately resourced in order to reverse the trend of increasing infections among gay men. Ireland had a good start in the battle against HIV. We need to keep that fight going if we are to succeed.

Bill Foley

June 2020

Document 2: Launching HIV Ireland

The following is a copy of a speech delivered by Dr. Erin Nugent on World AIDS Day, December 1, 2015. This speech marked the launch of the rebranding of the Dublin AIDS Alliance, the longest established HIV/AIDS charity in Ireland, as HIV Ireland. The event was significant for it marked one of the first times the Irish Government recognized the inroads made in treatment by ART and acknowledged PrEP. Most importantly, this re-branding signaled a shift in governmental attitudes whereby the stigmatizing specter of “AIDS” as a moniker was being replaced by HIV, thereby recognizing the many years of patient care and support provided by HIV Ireland to those living with HIV. The transcript below has been minimally edited to enhance clarity of expression.

Good morning, Minister, and honored guests,

Thank you so much for attending today to help us celebrate the launch of HIV Ireland and the second edition of Living with HIV in Ireland.

When I came into this organization in 1992 as a volunteer fundraiser, the fundraising department was a vibrant, energetic, and creative force which seemed to work almost 24 hours a day to persuade—most likely harass—musicians, singers, artists, and poets to give their time and energy in order to help raise funds for the Dublin AIDS Alliance and the organizations under that umbrella at the time, including Cairdre, Body Positive, AIDS Helpline, Irish Frontliners, and Women and AIDS. We also worked closely alongside the Irish Names Quilt who, as Mary Shannon the coordinator pointed out to me recently, also had its fair share of working sleepovers as people sewed memorial quilts for their loved ones late into the night.

Underpinning these fundraising efforts, though, was a particularly unique and poignant dynamic: many of the volunteer support workers within the Dublin AIDS Alliance at that time were also living with HIV. It was often a case of the unwell caring for the very sick. The intimacy of the communities affected by AIDS caused people to lose friend after friend to AIDS and families affected by drug use or hemophilia to lose child after child and sibling after sibling. And couples sometimes faced death together, having to make decisions about the future of their children far too prematurely.

These communities were, of course, our greatest allies at that time. When the late, great, activist Pat Tierney asked us in 1994 if he could help us raise money for Irish AIDS Day, we were absolutely delighted. When he asked if he could stand outside the GPO (General Post Office on O’Connell Street, Dublin City Centre’s primary thoroughfare) wearing a sandwich board saying, “KISS A MAN WITH AIDS £2,” we were even more delighted (if slightly nervous). Pat made £128 pounds that day mostly from the mothers and grandmothers of the north inner-city who, in a time of very heightened stigma, understood exactly how HIV was, and was not, transmitted.

For so long, our work centered on closure for people, but our focus on supporting people with a terminal illness changed dramatically with the advent of the new medications. It was a significant and almost joyful moment, in late 1999, when the term “further education and training” was added to our list of interventions for people living with HIV. This would have been unthinkable three years earlier when those living with HIV had very little vision for their future.

Our service users, then soon began negotiating the possibility of new relationships and careers, of further education and travel, and some even began thinking of buying an apartment or a house. On the surface, these were incredibly hopeful objectives, but this change in fact presented far more complex issues for them and for us, as an organization, than “closure” ever had. People began experiencing the negative consequences of disclosure in these new situations and witnessed the chaos that disclosure could cause in their workplace, in their college, in their CE course, and more surprisingly, in many healthcare settings. People were now fit enough to travel, but because they were HIV-positive, they were barred from entering many countries to see their family and friends. And the question of whether to disclose or not disclose became almost more stressful than actual disclosure itself, as people realized either decision could lead to them not having a home, a job, a chance for education or travel.

While medical advances have been very heartening, the support and advocacy work we do today is not that different from all those years ago. We still work to navigate people through the trauma of their diagnosis, through disclosure, through the repercussions of disclosure. We still inform our clients what countries they are barred from. Unlike the early days, however, we now have the arms of the Equality and Human Rights Commission, the Ombudsman’s Office, and the Garda Ombudsman’s Office to investigate situations when someone living with HIV is treated differently than someone whose HIV status is negative or unknown.

The stigma surrounding HIV is as insidious as the virus itself and, like other stigmas, is complex. Who stigmatizes, how they stigmatize, and why they stigmatize are research questions often asked of people living with HIV. These questions are seldom, if ever, asked of the classmates, workmates, employers, people in the community, the health professionals, police, media, and faith communities, who our service users cite as having stigmatized them, or treated them differently, because of their HIV-positive status.

Some of our recent work has included supporting a man who got a job as a fitness instructor on a cruise ship and who then was fired two days later when he disclosed his positive status, supporting a woman who was told outright by a leading disability agency she could not avail of its services, convincing a crèche manager she did not have to inform all parents of one child’s HIV status, and supporting a woman who was informed by a holistic therapy college that she could not practice reflexology. It also included a doctor in a private health clinic who wanted to know the protocol about informing his patient’s employer about the patient’s recent positive diagnosis and several dentists who, despite the inconvenience to our clients, only give them the last appointment of the day to protect their other patients in terms of cross-infection. These dentists do not realize, of course, that some of their previous patients that day may represent the one in three individuals living with HIV in Ireland who have not yet tested and, therefore, do not know they are HIV-positive. We know health professionals confident in their policies and procedures do not need to rely on disclosure to prevent cross-infection.

Worryingly, HIV-related stigma is now institutionalized in Ireland. When a judge orders compensation of €100,000 to a Garda (police officer) who was spat on by a man whose HIV status wasn’t even known or when a social protection worker has to take six months leave because she too was spat on, the parties held, as Judge Mary Irvine nicely put it, “a significantly inflated view of potential risk.” There was indeed no risk, even if the individuals were HIV-positive. In these cases, ignorance and misconception were not only rewarded; they were rubberstamped.

So, despite the advances in medication, our work is far from over as these examples testify and as the numbers of people contracting HIV continue to increase. We are responding by providing prevention education training to at-risk groups and, more importantly, to those working with these groups—we train the trainers. And our training and policy work and campaigns are no longer just about sexual health or harm reduction. They also seek to challenge HIV-related stigma, homophobia, racism, and drug-user and sex-worker prejudices. They aim to make HIV a health issue rather than a question of morality, culture, or lifestyle.

I like to think of our work over the years as a tapestry with some threads a little bolder than others. Consider our outreach thread, for example. From the early days of providing holistic massages to those dying in Cherry Orchard hospital, to our work with the users of the so-called Night Train evening methadone service in Pearse Street, to our current prevention and training work with youth groups, colleges, and communities, we have always had outreach at the core of our being. That’s simply because we recognize that there are groups which remain under-served in relation to HIV and Sexual Health information and support. There are many gains in doing this. Our street outreach service targeting migrant social spaces and businesses on Moore St. and Parnell St. led directly to the development of our very successful HIV and STI testing service which we run in conjunction with the GUIDE clinic. Those we were meeting on outreach, particularly Africans, asked us over and over again why we were preaching about HIV testing but not actually offering it. A very good point.

The booklet we are launching today, Living with HIV in Ireland: A Self-Help Guide, the second edition, is not only a manifestation of our outreach ethos; it represents perhaps the strongest thread in this tapestry: our human rights ethos which has underpinned this organization from its grassroots beginning. Our great body of work over the years—the support work, the education and training, the campaigns, the policies, and all the literature we have devised centers on — our core beliefs: that people have a right to education, a right to make informed decisions, and a right to be respected.

We are grateful to Janssen, who sponsored this booklet, and we acknowledge their huge patience as we kept stalling production in order to include the most updated information (namely, on the outcome of the same sex marriage referendum and the establishment of the Equality and Human Rights Commission).

I would just like to end by saying that, while we are no longer an alliance in name or structure, we certainly remain an alliance in spirit with all of you here. We are delighted to see old and very new friends here today. Thank You.

Erin Nugent

December 2015

Document 3: ACT UP Dublin

Noel Donnellan’s piece outlines the reboot of ACT UP Dublin, which had lain dormant since circa 1994. The main impetus behind the reboot was to get pre-exposure prophylaxis (PrEP) made free-of-cost available to anyone who felt they needed it through the National Health Service. It was successful.

“Do we want to start a new organization devoted to political action?” asked Larry Kramer in March 1987 at the Lesbian and Gay Community Services Centre in New York (Kramer 2007). Two days later at the first ACT UP (AIDS Coalition to Unleash Power) meeting, almost 300 people turned up in answer to his question.

Over time, ACT UP chapters sprang up around the globe, including Paris, San Francisco, Philadelphia, Boston, Los Angeles, London, Toulouse, and Dublin, which formed in 1990 and reformed in 2016. Although independent of each other, all ACT UP chapters around the world work the same way as they did in the early days. They are all leaderless, consensus based, and in the words of founder Larry Kramer, “democratic to a fault” (Kramer 2007).

Common global goals among ACT UP chapters include not only fighting HIV stigma in general and pushing for accessible affordable treatment and prevention but addressing broader health issues, inequalities, and injustices that perpetuate HIV. Other ACT UP chapters would, thus, have similar mission statements to ACT UP Dublin “a diverse, non-partisan group of individuals united in anger and committed to direct action to end the HIV/AIDS crisis” (ACT UP Dublin, n.d.). All would agree and see HIV as a political crisis.

In its first guise, ACT UP Dublin, or Dublin ACT UP as it was then known, hit the ground running with an action every month for 13 months, including occupying offices in the Department of Health. Three of the ACT UP Dublin members, Izzy Kamikaze, Barry Quirke, and Eoin Freeney, went on to start the reformed Dublin Pride Parade in 1992, which had ground to a halt in 1986 although Pride week had continued throughout. ACT UP Dublin ended long before anti-retroviral treatments became available in 1996 due to other commitments by its members.

In July 2016, ACT UP Dublin reformed in response to the increasing HIV diagnoses in Ireland, which had started to rise largely as a result of sexual health services cutbacks after the economic crash of 2008. HIV continued to be a political issue. One of the first major actions to address this issue was a protest in front of the Department of Health (then at Hawkins House) in the run up to World AIDS Day in 2016. This protest featured a giant green alarm clock “to wake Ireland’s dormant institutions to the need for a renewed effort to address the expanding [HIV] epidemic” (ACT UP Dublin 2016).

Pre-exposure prophylaxis, or PrEP, which is HIV preventative medication, continued to be a major focus over the following years, and campaigns continued including images of “Silent Harris,” which described Simon Harris, then Minister for Health, with a pink triangle over his face to highlight his lack of mentioning HIV at all. “PrEP Now” stickers were handed out in their thousands at Dublin Pride in 2017 along with information leaflets and educational outreach in LGBT+ venues. Two PrEP forums were organized, and the second one, “Preparing for PrEP,” held at Outhouse LGBT+ center in late 2016, was oversubscribed with speakers, including Dr. Paddy Mallon and Pierre-Cédric Crouch, then Director of Nursing at the Magnet Center in San Francisco. The forum was moderated by ACT UP member Thomas Strong. ACT UP Dublin has continued pressuring for free PrEP via social media. A second visit to the Department of Health at Hawkins House in 2017, which consisted of a sit-in masquerading as a teach-in and was streamed live on Facebook to push for a long overdue and promised meeting with the then Minister for Health, Simon Harris, finally led to the beginning of a PrEP program in Ireland.

As mentioned earlier, although ACT UP chapters are independent, they have common goals and, from time-to-time, collaborate on specific issues. For example, in March 2018, members of ACT UP’s New York chapter at Stonewall questioned then Taoiseach (Irish Prime Minister) Leo Varadkar on the sidewalk about expanding PrEP access during his St Patrick's Day trip to New York City after behind-the-scenes planning between ACT UP’s Dublin and New York chapters.

Along with PrEP, the other major ACT UP Dublin project was and continues to be the “U=U” message—“Undetectable = Untransmittable”—meaning that people living with HIV on effective treatment with an undetectable viral load cannot transmit the virus to their sexual partners. This message was also covered in the 2017 short film Love & Suppression, featuring HIV activist and ACT UP member Robbie Lawlor and his partner Maurice, who were members of the PARTNER study that helped provide evidence to support the “U=U” message. The message was very much evident at Dublin Pride in 2019, led by ACT UP Dublin, and also leading up to it, with a coordinated public campaign with MASC.LIFE featuring on Micromedia screens throughout Ireland, from gyms to street-front displays.

The use of high standard imagery across different media has been adopted by ACT UP from the very beginning, co-opting the “SILENCE=DEATH” posters and working with Gran Fury, other artists like Keith Haring, and filmmakers. ACT UP Dublin continues to do the same, whether through wheat-paste posters on the street, short films, or theatre pieces, such as RAPIDS, which was written and performed by Shaun Dunne and explored instances of disclosure and the presence of stigma in the lives of men and women who are HIV-positive in Ireland today.

In March 2018, ACT UP Dublin held a sold-out screening of 120 BPM (Beats Per Minute) (120 Battements Par Minute in French), directed by former ACT UP Paris member Robin Campillo, at the Irish Film Institute followed by an after party at the LGBT+ dance club MOTHER. The event was also an educational and outreach event with members discussing “U=U,” HIV stigma, PrEP, and the history of ACT UP with members of the public. It also attracted many new members to ACT UP Dublin, which now has a membership who have experience in medicine, HIV science, art, film, education, law, and student unions.

ACT UP Dublin is currently focusing on people living with HIV, HIV stigma, the full return of sexual health clinics (which have essentially stopped since staff were reallocated to COVID-19 testing), the continuation and expansion of the PrEP program, and peer support for those living with HIV.

Neil Donnellan

August 2020

Document 4: Militancy becomes melancholia: A reflection from a moment in-between

In his essay, Thomas Strong, HIV activist and Associate Professor of Anthropology at NUI Maynooth University, offers a polemic on the frustrating vicissitudes of Online App Hook Up Culture and its links with PrEP and guys who come online claiming to be “Neg on PrEP seeks Neg on PrEP.” This constitutes one of the most powerful recent publications dealing with the negative effects of the culture of secrecy that emerged as a result of the AIDS pandemic.

Why are there HIV-negative people on BarebackRT.com? The question pops into my head as I scroll past the same 45 profiles that I have been staring at on the website for the last ten years or so. And the answer is PrEP (pre-exposure prophylaxis). The advent of PrEP has shifted our perceptions of the HIV epidemic and its consequences. As an activist, one among many who agitated for Ireland’s national PrEP program, I, of course, welcome this change. In recent years, ever so slowly, gay men have begun to glimpse a world most of us have never known: a world where sex did not carry the risk of death. It’s true that we’ve long known that HIV is treatable, and this fact has even been used to allege that it has made gay men cavalier again about sex: reckless, irresponsible. Of course, ironically their rhetoric itself contributes to the gamut of moral messages about HIV—above all, that it is socially discrediting, that it says something bad about you. This can turn an HIV diagnosis into a kind of social death, if not a biomedical crisis. For, even though it is treatable, even though the new drugs often have zero side-effects, even though there are allegedly places in the world—sexual Shangri-Las—where (we are told) people don’t really care about your HIV status because they know about PrEP and treatment as prevention (TasP) and all the good things that Pfizer brings to life, being HIV-positive, for many of us, means settling into a form of social and sexual isolation that corrodes the body into a lifeless (because sexless) lump. Blocked on Grindr. (I know, we’re all blocked on Grindr, but it’s worse when you’re HIV-positive, trust me). Or you get to experience, right before sex, being asked, “You’re clean, right?” You stammer out words: “…undetectable.” A form of humiliation. (I know, we’re all humiliated by sex, but it’s worse when you’re HIV-positive, trust me.)

In that social context, BarebackRT.com was like an oasis: a world that wasn’t care-free, as the stats were still communicated, but generally where the worry and invidious separation of sexual actors according to sero-status is what seemed problematic, not the presence or absence of this or that microbe one encounters during the course of sex. Of course, this was mainly because almost all of us were already HIV-positive there. But in the last year, there have arrived explorers to this dark continent of lascivious libertinism: HIV-negative men on PrEP. And my reaction to seeing them so often feels protective and antagonistic. “What are you doing here?” For this small space online had felt like a respite from a world that defines itself as HIV-negative, while marking the rest of us with stigma(ta). Can’t we have a space that is our own?

That specific emotional feeling—get out!—when seeing negative men in a positive space was a smaller instance of a larger resentment, or lament, I have sometimes felt. For many years, when people have displayed sympathy towards me after I’ve told them about my HIV-status, I’ve cheerfully replied, “At least, I don’t have to worry about getting HIV anymore. I feel sorry for HIV-negative people.” This is, of course, something of a facetious bon mot, while also being, well, true. To live in a world where being HIV-positive is unclean—indeed, monstrous—but also an ever-present risk to gay men who are sexually active, well, I can only sympathize. What a fate: to have the thing in life that feels most life-affirming—indeed, that is intrinsically linked to vitality—also be shackled with the almost innate horror of contagion sucks. The thing is I remember what it feels like, because I used to be HIV-negative once. I wouldn’t want to have to feel that afraid again. And so, if we had to endure stigma as well as social and sexual rejection, at least we had our corners of the online orgy to ourselves, or at least we could take heart in the knowledge that a HIV-positive diagnosis wasn’t lurking around the corner for us. Ironic, I know. At least we could have bareback sex without worry. (Yes, other STIs, we know. But that’s moving the goalposts of what is really a moral argument, not a public health one.)

And thus, the resentment I have felt at times at the new sexual dispensation: these kids get to have raw sex without worry too. That’s not fair. A dim green bulb illuminating my jealous underside flicks on in the basement of my brain, while the frontal lobe dutifully turns on a PowerPoint demonstration: “Hey, this is what you fought for.” Reason is about to win out, when I encounter the following discourse on Scruff: “Negative on PrEP for negative on PrEP.” And now what was but a dim jealousy or a childish possessiveness becomes instead self-righteous anger. If you don’t know that PrEP obviates the question of the sero-status of your partners, you shouldn’t be taking it! My legally wedded husband tells me, when I yell out the text of this profile to him across our two-bedroom apartment in Dublin 1: “The only thing that should disqualify you from PrEP is having that on your profile.” And so, even those technologies that we hoped would vanquish the linkage of sex and fear get recruited to the project of tightening the link with more or better chains.

I have been an AIDS activist since 1991. Indeed, in high school in rural Nebraska in 1989, I chose Harvey Fierstein’s On Tidy Endings as the script for the “duet-acting” category of the speech meets I used to compete in (we went to State). Awareness of AIDS was somehow, even in rural Nebraska, seared into me, decades before I acquired the virus (in 2006, from condom-less sex during a slutty hook-up. So there). AIDS activists have helped to bring about the world where sex wouldn’t have to be chained to death. And so, in sharing these counter-intuitive thoughts, I do so knowing they might be unflattering, seemingly at odds with the public face of the activist and academic I fantasize myself to be. But I do so now, because in fact we are in a different moment again, one that replaces cautious hope with confusion and anguish. I am writing on September 30, 2020, in Dublin. We are on what some would call “Level 3 Lockdown”: subject to major restrictions on social life but not the quite in-the-carceral isolation chamber that was our first experience of lockdown. I am writing in the time after COVID-19. Those other thoughts up there, they were way back in the BC era: before COVID.

Melancholia—a state of (pathological) grieving that results from the refusal to let go of a loved object that has been lost (Freud 1922)—has been a productive figure for people given to thinking deeply about queer love and loss. But the putative pathology of the melancholic disposition has been questioned, especially by those who have made grief—or grievability, rather—a political matter. Not grieving is not the same as being disallowed grief. And it was the odious moral and political ideology that said that a death from AIDS was shameful because those who suffered it deserved their fate and that, therefore, queer grief at the loss of our loved ones could not be socially recognized, because it was morally illegible, that provoked Judith Butler (The Psychic Life of Power, 1997) and a generation of queer scholars (e.g., David Eng) to think about the constitutive role of loss in the formation of queer subjects under late capitalism. These were the politics of sexuality at the turn of the twentieth century, indeed at the time of the new millennium.

But today, a kind of resentment reappears; now “the general public,” that phantom population that had to be educated about HIV back in the day, now they, too, will intimately get to know the corrosive, punishing, and inhuman morality that blames victims for their fate. Instead, the headlines retail scapegoat narratives: it is the partying college student who earns public reprobation. Plus ça change…

As for us queers, something else emerges or, rather, escapes us: that sexual future I mentioned above, the one where sex wasn’t about fear. Yes, COVID-19 changes the question of sex and risk for everyone. But for gay men, the loss is perhaps more intense and more historically significant. In Ireland, our national PrEP program was but months old when the novel coronavirus arrived. What’s more, this is not a “conceptual loss,” this sexual future I am talking about. It’s also material. I learned today that the PrEP program is at serious risk due to the fact that all the human capacity to deliver it has been moved to working on COVID-19. And so, not only must we come to terms with COVID-19 and the gamut of risks it appears to present to us (“shopping could kill you”) but perhaps we will have to be happy once again with a world without PrEP. It seems overwhelming: they feel like losses I can’t process. I would rather die than live in a world where I can’t breathe on a lover, let alone have him in me. And Ruth Bader Ginsburg died. A cloud of confusion accumulates over me: about sexual ethics and conduct in this new time, about political priorities and action, about the vocation of anthropology today, indeed about the very basic things I’ve always cared about. And the self-aggrandizing “militancy” of the activist loosens up a bit, crumbling at the edges. I almost feel as though I can’t leave the apartment anymore for any reason. Closed-in on the self. Bon soir, melancholia.

Thomas Strong

September 2020

Appendix: Gay health action leaflets

“AIDS.” Information Leaflet 1, May 1985 (front).

figure a

“AIDS.” Information Leaflet 1, May 1985 (back).

figure b

“AIDS. The HTLV3 Test.” Information Leaflet 2, December 1985 (front).

figure c

“AIDS. The HTLV3 Test.” Information Leaflet 2, December 1985 (back).

figure d

“The Joys of Sex.” Information Leaflet, undated (front).

figure e

“The Joys of Sex.” Information Leaflet, undated (back).

figure f