RESOURCING OUR SURVIVAL AMID EXTRAORDINARY ODDS

The story of HIV and the AIDS pandemic in Ireland has yet to be told. As Tonie Walsh describes, it’s a story of horror and devastation, courage and defiance, compassion and caring, and what seems, even after all this time, as the never-ending fight against ignorance, shame and stigma.

Over 40 years on from the first Irish diagnoses, you’d imagine we’d be familiar with the story, even if it wasn’t documented in all the excruciating detail of the Covid pandemic. You’d imagine that it would be a (taken-forgranted) part of Irish history; I mean our formal historical narrative, up there with the Septic Tiger, the so-called Troubles, the Roman Catholic sex abuse scandals, the Magdalene Laundries and so on.

An increasing number of academic texts have mined that period from the first diagnoses in 1982 to the advent of life-saving antiretroviral therapies in 1996 but this critical research remains inaccessible to most of the public. Recent publications like Páraic Kerrigan’s LGBTQ Visibility, Media and Sexuality in Ireland (Routledge 2021) and Patrick McDonagh’s Gay and Lesbian Activism in the Republic of Ireland, 1973-93 (Bloomsbury 2021), both products of their respective PhD dissertations, offer concise overviews of LGBTQ+ community engagement during the pandemic and the pushback from agents in mainstream society that was a defining characteristic of the time: a timid, conservative government, lazy, selfserving media and an ossified religious culture.

These recent literary interventions notwithstanding, there’s been a paucity of cultural responses to the pandemic, whether TV or film documentary, memoir, theatre or art. The obvious reason for this is that the people best served to tell us about the pandemic are dead. So it falls to those of us who survived to make sense of those awful times and, as we go, unpick the culture of criminality, taboo, transgression and exclusion attached to HIV and AIDS from the outset.

Perhaps we’re at a sufficient remove to see that period as the history it has become? Making sense of it now that we may have finally been allowed to grieve, and having recently experienced another pandemic, even if the scale of destruction and loss from Covid-19 came nothing near that of the AIDS?

Two generations after AIDS first hit our shores, Philly McMahon’s theatrical script, Once Before I Go, mines the period from a distinctly Irish experience and will appear on next year’s Leaving Cert syllabus.

This year, on World AIDS Day, we also mark the first anniversary of the Irish HIV/AIDS Memorial which was unveiled in a very moving ceremony last year in Dublin’s Phoenix Park.

Having a physical monument is only the beginning of the process of how we ritualise our memory of the pandemic and how we reconcile ourselves to that part of our troubled, recent history. This totem to HIV/AIDS in Ireland, both historical and contemporary, can help us restore the humanity and dignity of those we lost in such unfathomably brutal circumstances. It can also act as a transmitter of stories of resilience, hope and survival. Stories of survival that have an indefinite life span and are as necessary now as they were 40 years ago, even if our circumstances have changed somewhat.

I’ve said this before but it’s worth repeating the strange paradox that we, this rainbow society, have historically lacked a collective memory. Unlike ethnic groups for whom heredity is an innate part of the community infrastructure, we’ve had no such parent-child links. We have been a looseknit collection of newcomers, of pioneers exploring a wild territory of sexual identity, gender and alternative families. And only recently have we begun to acknowledge and accommodate accounts of struggles past, of lives lived and bonds forged in adversity.

Our HIV/AIDS story is one of an oppressed and marginalised community resourcing our survival as best we could and on our own terms, when the state failed spectacularly in its duty of care to its sexual minorities.

Early ‘80s publications like NIGRA News (Belfast); NGF News, Out and GCN (Dublin); and Quare Times (Cork) document with dread the drama that was unfolding in New York and Paris, then the epicentres of the pandemic in the Northern hemisphere. These queer community publications were also invaluable conduits of education and information exchange in a culture full of sex shaming and body shaming. A time when condoms were in limited supply and holistic sex education a fantasy of progressive-minded teachers.

Attuned and armed with new information about the unfolding pandemic, representatives of all the major lesbian and gay groups in Ireland got together in Dublin’s Hirschfeld Centre in January 1985 to plot a way through the crisis. At a subsequent public meeting in Trinity College on February 3, it was agreed to form an umbrella group, Gay Health Action (GHA), charged with countering the public and media culture of ignorance and hysteria that existed at the time.

GHA held its inaugural meeting in the Cork Quay Co-op on April 20, 1985. It was the first formal educational and civil rights response of its kind, entirely unfunded by the state with the exception of a small grant to cover part of the printing of the first information leaflets in May 1985; leaflets aimed primarily at the LGBTQ+ community but, in the absence of anything else, taken up with gratitude by anxious heterosexuals. When the first print run evaporated, a request for further funding to print a second round of flyers was turned down by the Department of Health, under the pretext that even publishing safer sex information would be tantamount to encouraging criminal behaviour as male homosexuality was outlawed at the time.

In its five-year history, GHA seeded the establishment of an island-wide AIDS Action Alliance network; established Cairde, the first non-judgemental support group for people with AIDS; a telephone line (AIDS Helpline); and published thousands of information leaflets and booklets. With the exception of the 1985 leaflet printing by the Eastern Health Board, all of this was financed through flag days, various fundraising events and an extraordinary amount of volunteer labour which in the early days of the pandemic was limited and slow to develop. Indicative of how stretched people’s commitment was, the Dublin Pride parade shuttered to a halt in 1985 and wouldn’t be revived until 1992 as AIDS demanded more urgent and greater focus.

In time, other groups sprang up serving the specific needs of various demographics that were disproportionately affected by HIV and AIDS, whether inner-city injecting drug users, immigrants or haemophiliacs.

Dr Fiona Mulcahy and her peers established the country’s first STI clinic at St. James’ Hospital in Dublin in 1987, no longer a seedy afterthought to some outpatients ward, effectively giving genito-urinary health the dignity and normalcy it had been denied up to that point. Even the dedicated AIDS ward on the top floor of Hospital Five, ground zero if you like of the pandemic, struggled with sufficient funding not only to care for those dying in a lot of pain and distress but also the ability to scale up HIV screening necessary to put a dent in new infections and mortality figures.

It’s a testament to the compassion and steadfastness of GHA and all the groups that followed in its wake that Ireland didn’t experience quite the obscene levels of infection and deaths that were common across much of the globe. Unsurprisingly, some of the pioneers of HIV and AIDS activism and education remain active today in the push to diminish rates of new infections and counteract the lingering culture of shame and stigma.

As a community and indeed wider Irish society, perhaps it’s time to reposition Irish AIDS Day (June 15) and World AIDS Day (December 1) as something more than banging a drum about infection rates and preventative measures, whether in Ireland or abroad. That work continues apace every single day of the year, but these two seasonal markers surely invite us to reflect on our journey and struggle, not unlike that afforded by Pride festivals.

It’s critically important that we recalibrate the memory of those we lost in such shocking circumstances and also acknowledge the grief and anger that many of us have carried all these years, as we continue to make sense of how we lost so many of our friends, lovers and family members. Attempts are underway to digitise the Irish Names Project’s AIDS panels. It’s equally important that we shine a light on the bravery, defiance and determination of activists and organisations that ensured our survival. We could advance that process by digitising the archives of Gay Health Action and other groups like Dublin AIDS Alliance (now known as HIV Ireland), along with the thousands of press clippings and other documents from the period that continue to languish at the National Library of Ireland.

Buried in those archives is the story of how we not only resourced our survival but how Irish society discovered its collective empathy and compassion.

To learn more about the story of HIV/AIDS in Ireland: Memorial -The Story of HIV/AIDS in Ireland aired on RTÉ on November 27 and is available on RTÉ Player. Most of Gay Health Action’s archive is held at the Irish Queer Archive; see nli.ie for details. HIV Ireland’s archive is available for research. Enquiries to hivireland.ie.