30 Years of Despair and Hope
The Irish Times
It has been three decades since the discovery of HIV and Aids, and in that time it has had a horrifying global impact. Diagnosis might no longer mean a death sentence, but the thousands of Irish people with the virus still suffer from stigma and discrimination. Here, some of them tell their stories to Cian Traynor.
Hanging behind an unmarked door in Dublin’s inner city is a sign with a simple code: “What I see here, what I hear here, let it stay here.” This is Open Heart House, a confidential support network for people with HIV and Aids, where roughly half of its 1,025 members, aged between 18 and 77, have kept their medical condition secret.
Thirty years after HIV first appeared as a mysterious new virus, the condition is no longer fatal. With as little as one pill a day, the viral load can be reduced to non-infectious levels and those diagnosed early can expect to live into their seventies.
Yet the depth of isolation has remained largely unchanged as stigma and misconceptions linger on. Where many once avoided testing for fear of a death sentence, now it's for fear of how they will be perceived.
James O’Connor was diagnosed with Aids in 1991. He grew up on a small farm in the midlands and moved to London in 1981, at the age of 18, to work in catering. Within two-and-a-half years, he contracted HIV through unprotected sex.
It began with flu-like symptoms that wouldn’t go away. As media coverage of Aids intensified, James clung to denial. But back in Ireland and mourning his father’s death, thoughts of his own health became harder to shut out and, eventually, his recurring black-outs made a hospital visit unavoidable.
Diagnosed with toxoplasmosis, an Aids-related illness, James confided in his family and insisted it go no further. Though he would develop a soft tissue disorder – “I’d get up one morning and my lip would still be on the pillow” – and a form of septicaemia, he went back to work within six months, never telling colleagues.
“What I feared, and what a lot of people with HIV fear, is what people may think. Did I get it through drugs? Am I a gay man? That’s what we call self-stigma. It forces people like me to close down. I could deal with the medical side but it was the social side that got to me. Hiding away nearly crushed my spirit.”
By the time a breakthrough medical treatment known as HAART (highly active antiretroviral therapy) came on the market in 1996, James had almost given up.
“People don’t want to end their life through suicide; they want to end the pain. That’s exactly what I wanted: to end the pain of isolation. Then on the 22nd February 1997, I woke up and my body felt different. That was the day the medication started making me feel well. That was the day I thought, ‘this is not going to kill my spirit.’”
Within two months, James dropped into the newly-opened Open Heart House and found the kind of empathy he had craved for years. “It doesn’t matter what leads you here,” he says, smiling. “You’re accepted for who you are.”
James is now the membership development manager at Open Heart House, which is free to join and funded through State bodies as well as donations. Across the spectrum of members’ backgrounds, the issues are universal: deliberating at what stage in a relationship to disclose your condition, what the consequences of living on medication for the rest of your life may be, and whether it’s relevant to be asked ‘have you tested positive for HIV?’ on job applications.
As James glides through a tour of the building’s facilities like an upbeat, spiky-haired headmaster, his rapport with passers-by hints at a greater objective. A future once seemed unimaginable for many here and now their experiences help to nurture the kind of resilience in others that saw James go from contemplating suicide to partaking in a United Nations delegation on HIV policy in just 10 years.
“People with HIV experience five to 10 times more depression than mainstream society,” he says. “And while we don’t know what 30 years of living on the medication will mean, I see the glass as half full. It can get quite heavy from time to time, but it’s still half full.”
Brendan was an inmate in Mountjoy during the prison’s outbreak of HIV in 1985. He grew up in Crumlin and, through the influence of an older crowd, began using heroin at 15.
“I turned into a slave for this drug,” he says, recalling his path to prison. “I needed it to function. I had to do ridiculous things in order to support the habit.”
Not long after his incarceration, Brendan lay in his cell listening to a radio interview with the first HIV-positive prisoner to be released. “When he described the syringe he used – a homemade one with a pencil for the plunge – I realised I had used it as well.” He falls quiet: his jaw clenched, muscles tensing, breath held. “That’s how I knew.”
One day in January 1986, when Brendan’s test results were due, the cell door flung open. He was flipped onto his back, handcuffed and taken to the separation unit with 46 others who had tested positive. Given that the modes of transmission were still unclear, prison guards wore spacesuit-like protective clothing when dealing with suspected cases. Panic and confusion reigned until, a week later, a medic gave the prisoners a crash-course in HIV.
“Somebody asked, ‘how long do you think we have to live?’ He said, ‘maybe two years at the most’. People looked around at each other, going ‘but I’m in here for another 10 years.’”
The inmates were taken to Arbor Hill prison where a wing had been cleared for them. Brendan recalls being given paper pillowcases and sheets, while at meal time food was pushed over to them across several tables. Those who died were put in body bags, he says, their possessions burned rather than passed on.
“There was a lot of anger at the treatment. I don’t hold any resentment against the authorities because they didn’t know. They didn’t have the information. But it actually killed a couple of people there because they went totally into themselves. The situation just ate them up. Before long, some prisoners realised, ‘well if that’s how they’re goin’ to treat us, we have this virus in our blood to retaliate with.’ The only thing I can say is that blood was spilt up there.”
When Brendan was released in 1987, he sought a “geographical cure” by emigrating, only to realise that Dublin wasn’t the problem. The same pattern of drug use, petty crime and prison took hold until 1991, when he returned home after a successful drug treatment programme in America.
“I remember sitting in my mother’s home thinking I should go down to my friends and tell them how well I was doing. Within half an hour, I was back using drugs. That’s how cunning, baffling and powerful addiction is.”
Though he was pronounced clinically dead from an overdose not long after, the old routine resumed. This time it lasted until 2001, when he decided to confront his addiction by going ‘cold turkey’. Brendan went back to college, began a relationship and became a drug outreach worker, using his experience to guide others.
The first time Brendan felt compelled to tell a select few that he was HIV-positive, he could hear his heart pounding. Though the experience helped him accept who he is, his extended family still don’t know and for that reason, he wishes to protect his identity.
Now 46, Brendan’s viral load remains below the detectable range of 50 copies per ml. “This is how I would explain it,” he says, holding up a fingernail and squeezing it with his other hand. “That’s how much HIV is in my blood. I like to think that the medication keeps it there.”
When Brendan and his partner saw a consultant at St. James’s Hospital about the possible ways of conceiving a child – sperm washing, IVF, pre-exposure prophylaxis (PREP) or natural intercourse – the response was encouraging.
“We were told there was a 0.3 per cent chance of me passing the HIV virus on the natural way. My partner wanted to take that chance… and it happened. Throughout the pregnancy she was being regularly tested for HIV and the tests came back negative. The child was born three years ago and he’s HIV-negative. I think that sends out a bit of hope. Being diagnosed HIV-positive doesn’t mean you can’t do anything normal people can do.”
At 16, Liz Martin was three months pregnant and three months away from her Leaving Certificate when she discovered that her boyfriend was using heroin. It was 1983 and the drug was sweeping through inner-city Dublin. What was already a fractured relationship began to collapse.
They would break up, he would get clean; she would take him back, he would relapse. As the cycle intensified, so did the violence. By 1986, Liz had just had her second child with Simon when he discovered he was HIV positive. When Liz got tested, however, the results were negative.
At the time, the virus known as ‘the gay plague’ was widely perceived as an act of God ridding the world of undesirables. As Simon showed no signs of illness, he refused to accept the diagnosis. Likewise, Liz chose to ignore it, convincing herself she was immune.
“There was a total lack of education around HIV,” she says, nodding gravely. “The feeling was, ‘It happens to other people. It can never happen to you.’”
Liz became pregnant again, and then again, before fleeing to a woman’s refuge in Galway. Her fourth child was born in August 1991 and soon after, Liz’s health deteriorated. “There was always a little niggle in the back of my mind that every time I got sick, something was wrong in the bigger picture.”
After another test confirmed she was HIV-positive, Liz became consumed with thoughts of who would look after the kids if she died, and whether she may have passed HIV on to them. Every cough and sneeze from the children wracked her with guilt.
Eventually she had her eldest three kids tested but her youngest, Gareth, was so frequently ill that she couldn’t face up to it until he contracted pneumonia at 15-months. Thankfully, Gareth had developed his own antibodies to the virus and all four children proved to be negative.
Having found support in AIDS West, a voluntary organisation in Galway, Liz became involved with local HIV awareness campaigns. Yet going public meant that word of her illness quickly circulated, as did prejudice. One afternoon, when her daughter Rachel was playing with other kids, another mother raced over to summon her child, shouting, “I don’t want you playing with her. There’s bad blood in that family.”
Rather than risk her children being upset by rumours, Liz leveled with them. “I explained it as if it was a little cold in my blood and that sometimes I’d need to be in hospital. My daughter’s response was to go the fridge and point to her cough medicine, saying, ‘that medicine was able to make me better and someday, mammy, they’ll find medicine to make you better.’”
She was right. On December 12th 2002, Liz began treatment after two years of homelessness and unemployment. She was rapidly losing weight, her viral load had soared and Simon had returned to family life – as had the violence. It didn’t take long for her condition to stabilise but Simon, still in denial and refusing treatment, died a month later.
The experience of feeling cast out from society with a virus she couldn’t speak about inspired Liz’s 2007 autobiography, Still Standing, the first in-depth account of living with HIV in Ireland. Today, she speaks reticently about her condition, explaining that it causes people to either act overly sympathetic or avoid her altogether, though her experiences have spurred her to help the homeless and continue campaigning about HIV awareness.
“HIV has become somewhat invisible. It’s gone back under that lovely Irish rug of ours and there’s an awful lot of complacency now. It’s something that happens in Africa but not here. Well, I’m living proof that it can and does happen to ordinary Irish people.”
It's a sentiment shared by Prof Fiona Mulcahy, who sees four new cases of HIV diagnosed every week at the Department of Genito-Urinary Medicine and Infectious Diseases in St James’s Hospital. Prof Mulcahy established a sexual health and HIV service there in 1987 – an era when homosexuality was illegal, there was no access to contraception on a wide scale and sex was not openly talked about. HIV changed all that, she says, but while progress continues, so does the pandemic.
“None of our new patients have witnessed the death we would have seen in the late ’80s and early ’90s. There’s no scare factor out there. The problem with giving everyone good news about lifetime expectancy is that we’ve veered away from anything negative, which means people are less worried about it. While the message is positive for anyone affected, it’s still difficult to manage and there are side-effects. You really do not want this disease.”
Fighting Discrimination Head On
On June 15th 2006, Irish Aids day, Jimmy Goulding saw a chiropodist, having experienced difficulties with his toenails as a side-effect of stopping and restarting his HIV medication years earlier. The chiropodist asked Goulding why he, a young man, was entitled to a HSE-issued chiropody card. Though the questioning seemed inappropriate, Goulding disclosed his HIV status. The chiropodist told him he needed to be seen by a practitioner who specialised in treating people with HIV and, after a brief look at his feet, told them they were fine.
“If it was a few years earlier, I probably would have smashed up the surgery or taken my own life,” he says, pausing to compose himself. “When you’re feeling vulnerable, discrimination can trigger that. But what pissed me off was that on that same day, Bertie Ahern was in America speaking about how he was going to stop stigma in Ireland.”
Goulding took a prima facie case to the Equality Authority, who ruled in his favour in 2009 and acknowledged that people living with HIV are incorrectly perceived as being unhealthy or a threat to public health.
“People won’t take a case like that if they’re married, have kids in school or a job they don’t want to lose,” he says. “I knew if I did it for the right reasons, we’d get the right result. But it’s still happening today. I heard of a case recently where a girl was refused a tattoo because she had HIV.”
Goulding was diagnosed with HIV in 1990, at a time when he believes he was in self-destruct mode. “I had no value on my life. When I was diagnosed, it was like, ‘here’s what you’re looking for: a death sentence, your ticket off this planet.’”
Since turning his life around during the late 1990s, Goulding has been campaigning for the rights of and services for those living with HIV through Positive Now, a new lobbying group, and through his monthly column for Gay Community News.
“It’s not talked about in the gay scene... There are even still people out there looking for unprotected sex with a gay man,” he says. “The clinics are full with a younger generation. I mean, okay, there’s a treatment for it but there are horrific side-effects: constant fatigue; bowel trouble, joint pains. It feels toxic. People think, ‘ah, I’ll do it just the once’, but taking that one chance could be your last.”
'I Really Have No Clue Why I Was Spared'
Sitting in a café near his film production company off Dublin’s Baggot Street, Bill Hughes recalls how the Aids pandemic wiped out his entire college peer-group through the 1980s and early 1990s.
“It was always a mystery that I never caught the virus. I really have no clue why I was spared,” he says. “It swept through the gay social scene in Dublin like a scythe. One friend came back from a holiday in the Canaries and said, ‘I can tell I’ve caught it.’ He was dead within a couple of months. I can honestly say it stopped me going out for five years. Some people must have thought I died as well.”
Hughes saw many gay men leave Ireland for more accepting communities in San Francisco, London and Sydney, only for them to contract HIV and come out to their parents on their deathbed.
In 1987, Hughes was one of a small group that helped nurse the DJ and presenter Vincent Hanley as he lay in St James’s Hospital during the final stages of an Aids-related illness. The conditions were antiquated, Hughes remembers, with HIV patients assigned their own utensils and the ward itself signposted with a Foxford rug that had ‘quarantine’ written on it.
“Those who had the virus craved human touch and they suddenly felt like outcasts, like lepers. It was a case of just running your fingers on the back of their hands to assure them that you were there and you weren’t afraid of them.”
When Hanley passed away in April 1987, aged 33, he became the first prominent Aids-related death in Ireland.
“The last few days were particularly distressing because he had gone blind, the Kaposi's sarcoma covered his body; he had legions everywhere. He just lay in bed, saying, ‘no, no, no,’ for hours, denying it until the end. That was very hard to take.”
Hughes says it took years for people to grasp the full reality of the Aids pandemic – mainly because its portrayal in the media bred widespread distrust. On the morning of Hanley’s funeral, Hughes says one newspaper questioned whether Hanley should be given a Christian burial in case he might bring something into the ground.
Yet despite what we know about the virus today, Hughes believes unprotected sex is commonplace, even among those who are HIV-positive.
“Anecdotally, people tell me things like, ‘I suggested we put on a rubber and he said, ‘Why? I don’t have the virus. We look like healthy guys. We don’t have it.’ That is the highest form of stupidity in the world today. Ignorance is no line of defence. All freedoms come at a price and the price is: rubber up. It’s not a big price. It’s really a very simple thing to do.”
- 1981: The first study recognising a pattern of opportunistic infections characteristic of Aids is published.
- 1982: the first Aids-related deaths are reported in Ireland.
- 1985: NGO Gay Health Action forms in Dublin.
- 1986: 112 haemophiliacs test HIV positive.
- 1987: Dr Fiona Mulcahy is appointed the first consultant in sexually transmitted diseases at St James’s Hospital, Dublin.
- 1989: the first Dáil debate on Aids is held.
- 1993: the Government launches its first media campaign promoting condom use.
- 1994: 418 cases of Aids and 1,517 cases of HIV are reported in Ireland.
- 1996: Highly Active Antiretroviral Treatment (HAART) is introduced free-of-charge to every person living with HIV or Aids in Ireland.
- 1999: 190 new cases of HIV are diagnosed in Ireland.
- 2001: Junior Minister for Health, Dr Tom Moffat, announces that ‘straight sex is now spreading more HIV than gay sex or IV drug use’.
- 2007: The Stamp Out Stigma campaign is launched.
- 2009: 395 new cases of HIV are diagnosed in Ireland. Jimmy Goulding wins landmark case with the Equality Authority in relation to HIV discrimination.
- 2010: The cumulative total number of HIV infections reported up to the end of December is 5,968.