Cork HIV activist recalls the impact of the AIDS crisis in Ireland

The first case of AIDS in Ireland was reported 40 years ago in 1982, sparking action from the LGBTQ+ community to tackle the epidemic.

AIDS activists marching with a Silence=Death banner.
Image: Twitter: @QueerCultureIre

Will Kennedy explores the history of HIV/AIDS in Ireland dating back to the 1980s. Kennedy, himself a prominent activist in the movement, has worked with ACT UP Dublin, HIV Ireland and Positive Now, and founded ACT UP Cork as well as Positive Cork.

HIV is the most infamous virus of the late 20th century. Its history has an almost Hollywood arc: A mysterious virus struck young, otherwise healthy, gay, bisexual and other men who have sex with men (gbMSM) in the early 1980s. Activism forced scientists, healthcare professionals and governments to conduct research into what HIV really is and find effective treatment. Tireless work from the LBGTQ+ community increased the epidemic’s visibility and it really helped focus scientific research throughout the 1980s, research that led to the HIV medication we have today. Thanks to activism, HIV is now no longer the death sentence it once was, and HIV Positive people on effective cannot pass the virus on.

It’s 40 years since the first AIDS case was diagnosed in Ireland in 1982. It is crucial, for a number of reasons that the LGBTQ+ community never forgets the effects of the crisis, its turbulent history, and the impact it had on the lives of gbMSM, both then and now. One great initiative that is underway today in Ireland is the AIDS memorial project, proposed by trailblazing LGBTQ+ activist Tonie Walsh. It is a real effort to reposition and acknowledge this facet of Irish history that has remained largely invisible.

The initial outbreak of the epidemic resulted in mass hysteria and the spread of damaging misinformation which led to the framing of the disease as some kind of ‘gay plague’. In fact, it was called GRID at first, Gay Related Immune Deficiency.

In national and Leinster newspapers at the time, it was suggested that it was not AIDS but homosexuality that was the killer. Homosexuals were said to have brought on the ‘plague’ through their own behaviour, and so it was their own fault, and they should be left to die. The stigma and discrimination that this caused for gbMSM at first, and then for other groups like sex workers and intravenous drug users, came about because of the fear and bigotry caused by the news coverage of the time. Sadly, this is something that has not changed a great deal even today. The scaremongering and misinformation led people to believe that HIV could be got from kissing, toilet seats, and sharing cups and cutlery.

In a recent survey conducted by HIV Ireland, many young people still believed some of these falsities. 24% thought you could get it from a toilet and 11% thought it could be got from kissing, sharing cups and cutlery.

One thing that must be remembered about these times is that homosexuality was still illegal, it was not decriminalised in Ireland until 1993. This greatly increased the fear many gbMSM were living under in the 1980s. If you came forward for a HIV test you risked being outed. You could lose your job, families might reject you, and your life would be ruined.

It was Ireland’s LGBTQ+ community that provide the first national response to the AIDS crisis. In response to media scaremongering and a lack of Government response, various queer organisations and groups came together and formed The Gay Health Action (GHA) at a meeting in Trinity College in February 1983. They really focused on AIDS education and went on to produce the first AIDS information leaflet in Ireland.

The government refused to fund the GHA. It said it could not be seen to be supporting what were considered to be criminal acts. In fact, in the Irish Government’s attempts to block efforts to legalise homosexuality in the country, it even considered using HIV/AIDS in its arguments. It cannot be said often enough that it was largely due to the efforts of the LGBTQ+ community, that the Irish government was forced to overcome its paralysis and confront the epidemic.

Almost all of the work that should have been done by the government during the outbreak was done by voluntary groups. Among them was AIDS Action Alliance, AIDS Helpline Dublin, Gay Health Action, Cork AIDS Alliance, Dublin AIDS Alliance, Western AIDS Alliance and Women and AIDS Group.

These were the organisations that provided the much-needed care and support for people with AIDS and their families. Due to the fear and stigma around HIV/AIDS at the time many people were very badly treated by the health care services. Many were shunned by their families and would have received the care and attention they needed when they were ill and dying. Even when you died, the stigma did not end. Many funeral homes refused to handle the bodies of people who had died of AIDS.

It was not really until 1987 that the Irish government reluctantly got involved in the epidemic. Since the first case in 1982, by 1987 there had been 24 deaths and 590 positive cases. From 1982 to 1987, if it had not been for the activism of the LGBTQ+ community and their allies, the suffering, distress, pain, and misery of people who got HIV/AIDS would have been a great deal worse.

198os Ireland was not really equipped to deal with the AIDS epidemic. The country’s health service was, to say the least, unprepared for the havoc, devastation, isolation, and loneliness that the outbreak would cause. Four of the main hospitals in Dublin, and St Finbarr’s in Cork, operated what was called special clinics. There were no STI clinics as such.

The social and cultural climate of the time was also no help. The total lack of sex education, restrictions on the sale of condoms and the prevailing influence of the Catholic church along with the fact that homosexuality was illegal led to a total lack of readiness or even willingness to deal with the epidemic. It was as late as 1993 that restrictions on the sale of condoms were removed, and of course, that homosexuality was decriminalised.

However, it would not be until 1996 that really effective HIV medication would arrive. It would prove to be life-changing for people with AIDS. Almost overnight people with no hope and who were very near death recovered. In fact, so remarkable was the recovery of many people who were at death’s door, the effect of the medication became known as the Lazarus effect. Since then, things for HIV Positive people have only gotten better. The advances in treatment and prevention keep improving. HIV is no longer a death sentence like it was back in the ’80s.

We now have all the tools we need to bring an end to new HIV cases. Both PrEP and PEP can be used to prevent getting the virus, with the message of U=U (undetectable=untransmittable), now a proven fact, spreading far and wide. This has been called treatment as prevention, and it is hoped that this will lead to the end of any new cases.

HIV today, while a lifelong condition, is no longer a death sentence, but it is the stigma and fear around the virus that we must fight now. The battle for treatment and prevention has been a long one, fought mainly by the LGBTQ+ community. We must never forget our history. Depressing, miserable, distressing, heart-rending and downright desolate, are all words we can use to describe the not-too-distant 1980s and the story of the HIV/AIDS pandemic in Ireland and globally. But it’s also a history that the LGBTQ+ community can look back at with pride. In a time of death and sorrow, we were united in the struggle to make the lives of people better. We joined together even though we had many different ideas and views on how the battle should be fought, and fight it we did.

We were loud, vocal and most of all visible in our fight, and that is why I for one am visible and vocal today. Silence=death, being invisible allows the world to ignore us, so be loud and visible and help to bring about an end once and for all, not only to HIV transmission, but also an end to the fear and stigma many HIV Positive people experience every day.

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