Adam Carr's speech presented Friday 12 July 2013

The text of Adam Carr's speech presented Friday 12 July 2013, on the occasion of our 30th anniversary.

The Courage of our Convictions: lessons from the AIDS panic of the 1980s

Not many people get to make history in their youth, and then to come back 30 years later and pass judgement on their own actions. That’s the privilege I have tonight, and I’m very grateful to the VAC/GMHC 30th Anniversary Project Committee for giving me this opportunity. Exactly 30 years have passed since that winter’s night in 1983 when 70 people jammed themselves into the dining room of the Laird Hotel to form ourselves into the Victorian AIDS Action Committee, the body that became VAC in December 1984.

I’m speaking tonight as a participant in those events, but also as a historian. When I returned to university 18 years ago to study history, I had no thought of studying the history of the AIDS epidemic. In fact I deliberately chose areas of study which were as far removed as possible from my life in the 1970s and ’80s as a gay activist and an AIDS activist. This was partly because I wanted a break from all that after a very intense decade, and partly because I wanted to broaden my mind by studying new things.

But, as Paul Keating said, quoting Proverbs 26:11, “just as a dog returns to his vomit, so a fool returns to his folly.” So in the last few years my thoughts have begun to return to the early 1980s, to what we said and did then, what we achieved, what we saved and what we failed to save. Last year, thanks to Graham Willett, Gary Jaynes and the other good people at the Gay and Lesbian Archives, I was able to find and copy of all my journalism and other writing from that period, which was just as well because I had kept none of it. Since then I’ve re-read most of it, and a lot else besides. I’m hopeful that if I manage to survive this election campaign I’ll have time to get back to the project of putting some of that writing into a publicly accessible form.

A 30th anniversary is a good time to look back at a historical event or period. Thirty years ago is far enough in the past for the passions of the time to have cooled and for most of the written evidence to be available. On the other hand, it’s recent enough for most of the participants still to be alive, and their memories not too clouded by senility, to be able to recall what happened, or at least what they think happened, and also to recall their own thoughts and emotions of the time, the kind of things that tend not to be preserved in the written record.

In 1983 I was one of the very few people in Victoria who was working full-time in and for the gay community, as Deputy Editor of OutRage magazine. I was reading the overseas gay press, and I saw the articles in papers from New York and San Francisco describing the mysterious outbreak of “gay cancer” in those cities. The first article on this new disease in the Australian gay press, written by Gary Jaynes, had already appeared in Gay Community News in 1982. But in May 1983 the Editor of OutRage, Danny Vadasz, and I decided that we needed to write something more substantial on what was happening, because the reports from the US were getting quite alarming. So I set out to research and write my first AIDS article.

The result was an article 10,400 words long, probably the longest ever to appear in the gay press, which covered the full gamut of what was then known about AIDS. Just to remind you of how long ago this was, I wrote that article with a pen, on paper, and then had to get someone to type it for me. The process of researching that article was for me a journey into a very dark place. I learned that in the US this new disease, AIDS, had already affected nearly 1,500 people, of whom over 70% were gay men, and of whom 40% were already dead. I learned that the number of cases was doubling every six months. I learned that the average time from diagnosis to death was less than a year. I learned that the cause of this disease was unknown, and that that no-one had any idea of how to treat it.

It didn’t take much imagination to see where this was leading. An untreatable disease with a high mortality rate, doubling in numbers every six months, was a description of a catastrophe about to happen. As I wrote in that article:

“Whatever the cause of AIDS, three things about it are clear. The first thing is that it is spreading, that it is going to go on spreading, and that its rate of spread is going to go on increasing for some time yet. The second thing is that there will be no cure, and probably not even a reasonably effective treatment, for AIDS in the immediate future, and that therefore it will go on killing people at a rate equal to or greater than its present rate. The third thing we know is that, given the realities of travel and the realities of gay life in Australia, it is only a matter of time, and probably not a long time, before AIDS starts to kill gay men in Australia in significant numbers.”

That was my cheerful message to Australian gay men, and the message was rammed home in a grimly timely manner when we saw the first death from AIDS in Australia just as that article appeared in June 1983. By this time the AIDS panic had begun, with lurid stories in the newspapers and the tabloid TV shows about mysterious plagues and killer bugs, spread by unorthodox sexual practices and unpopular minorities. It rapidly became apparent to a lot of people in the gay community that we were in big trouble, and that it was time we did something about it.

The people who did something were the ALSO Foundation, whose health committee met in May and decided to call a public meeting. The members of that committee were Peter Knight, Ian Dunstan and Chris Carter, all later casualties of the epidemic, and Phil Carswell, who is currently on his honeymoon in Amsterdam after marrying Ian Cherry in New York on Stonewall Day. Happy though I am for Phil, I’m very sorry he isn’t here tonight, because I wanted to acknowledge in front of this audience his central role in leading the Victorian gay community’s response to AIDS between 1983 and 1986.

Four-hundred and fifty people came to the Royal Dental Hospital auditorium to hear a panel of doctors including David Bradford, Ian Chynoweth, Ian Frazer, Rex Melville and the late Vaughan Lenny tell us all they knew about AIDS, which wasn’t much. The meeting was only saved from falling into total gloom by the redoubtable Alison Thorne, who, taking her usual clear-cut view of the world, stood up and said “What we need is an organisation!” Now Alison and I disagree about a lot of things, but history must record that she was absolutely right about that.

And so it was that we gathered, 30 years ago tonight, in the dining room of the Laird Hotel to form the Victorian AIDS Action Committee. A committee of twelve selected itself by a simple show of hands. The committee was a balanced selection of people from various parts of the community. I think this meeting should note the names of its members. They were Phil Carswell (Convenor), David Rogers (Secretary), Peter Lademan (Treasurer), Chris Carter, Jamie Gardiner, Chris Gill, Peter Knight, Gary Sauvarin, Alison Thorne, Danny Vadasz, Lee Visser and myself (media spokesperson). We have lost Chris Carter and Peter Knight to AIDS, but I believe all the others are still with us, and I hope most of them are here tonight.

Forming a committee was a fairly obvious thing to do, but that first meeting also did something else more radical. It passed a motion which declared that VAAC was “the sole representative of the Victorian gay community in all matters relating to AIDS.” The extraordinary thing about this rather arrogant declaration was that it was generally accepted, first by everyone at the meeting, then by the gay media and the gay community generally, and later also by the mainstream media and the state and federal governments. This acceptance of VAAC’s leadership role was a mark of how serious the situation really was. The community wanted leadership on AIDS, and it was willing to accept the authority of anyone who was prepared to stand up and assert some.

This unity behind an agreed leadership gave the gay community a single clear voice on AIDS issues, something that was lacking in other states for some time to come. This was to prove invaluable during the difficult early years of the epidemic, when we saw a tense three-sided struggle between governments, the medical profession and the gay community for authority and influence in decision-making. This didn’t become apparent for the first year of VAAC’s existence, which was something of an anti-climax after the dramas of June and July 1983. We had a small trickle of AIDS cases, most of whom disappeared into hospital and didn’t come out again. We debated at great length on what kind of campaign we should launch to try to prevent more cases. We raised some money and wondered what to do with it. But that unity became vitally important when the real AIDS crisis suddenly began in November 1984.

On 15 November, in the middle of a federal election campaign, the Queensland government announced that three infants in Queensland had died of AIDS-related illnesses, after receiving blood donated by a gay man. This unleashed a storm of media sensationalism and political abuse. We found themselves the subject of screaming headlines across the country. Our enemies, led by the Leader of the National Party, Ian Sinclair, were quick to exploit the situation. Prime Minister Bob Hawke ordered the Health Minister, Dr Neal Blewett, to get the situation under control. On 19 November State and Federal Health Ministers met in Melbourne to consider the crisis.

It was at this point that the political and organisational work that VAAC and its equivalent organisations in the other states had done over the previous 18 months paid off. When the crisis broke, we were not taken by surprise. We had a leadership structure in place, and we were able to meet with governments on equal terms. They didn’t know what was going on, but we did. It was the ministers and the professors of medicine who were caught by surprise, and they had to turn to us for information and advice. That was why Phil Carswell from Victoria and Lex Watson from Sydney were appointed to the federal government’s new National Advisory Committee on AIDS, chaired by Ita Buttrose.

Phil Carswell told OutRage “While we may have weathered the immediate crisis, we have to recognise that more and worse is to come. The epidemic has really only begun in Australia, and the gay community will be bearing the brunt both medically and politically for as far ahead as we can see. Now is the time for every gay person in Australia to think hard about how they can contribute. There will be plenty of work for anybody who wants to help, and there will be an urgent need for money.”

In response to the crisis, VAAC held a public meeting on 6 December 1984 to set in train a major expansion. We changed our name to the Victorian AIDS Council, because a “council” sounded more authoritative and inclusive than an “action committee”, and we launched an appeal for money, for new members and for volunteers, and we got an overwhelming response. Almost overnight, we became a mass organisation, and also a well-funded one, able to hire offices and employ people to run them, able to set up support services and train people to work for them, able to develop and implement large-scale prevention programs.

Federal and state governments recognised the central importance of our role by funding us to do things they could not do and did not know how to do, like promoting safe sex practices among gay men, or even more difficult, among men who had sex with men but who didn’t identify as gay. When we said we wanted to promote safe sex at saunas, sex clubs and beats, and among sex workers and drug users, health ministers went pale, but they signed the cheques because they knew this work had to be done and that only we could do it.

But this new prominence brought new risks with it. Senior figures in the medical profession didn’t like being told what they should be doing by mysterious committees of homosexuals. They used their access to ministers to try to marginalise us and shut us out of decision-making. They argued that our strategy based on prevention and persuasion should be replaced with one based on traditional public health measures such as quarantine, isolation and closing down supposed centres of infection such as gay clubs and saunas. This strategy was adopted in parts of the US and proved conspicuously unsuccessful.

The isolation in 1985 of the virus that causes AIDS was a great medical breakthrough, but it brought with it a new challenge to our strategy. The isolation of HIV was followed rapidly by the development of a test which could detect HIV antibody in infected people. This led at once to demands for mass testing of gay men and other people thought to be at risk, or even of the entire population. These demands were hard to resist, since of course many people wanted to know whether they had HIV infection and rushed to be tested. It seemed perverse to argue that testing should not be extended to everyone at risk.

But in both these matters VAC stuck to its guns. Our strategy was to promote a message of safe sex practices for all men who had sex with other men, not for a strategy based on coercion or compulsion, and not a strategy based on segregation of the infected from the uninfected – or the positive and the negative, as these two categories soon came to be called. We argued that there was no point in mass testing when a positive test led not to any effective treatment, because there was none, but only to trauma, isolation and depression. We argued the way to reduce the spread of HIV in our community was to lead a united community towards safe sex practices, not to introduce “antibody apartheid.”

We took a lot of stick for these positions. Even friendly ministers such as Neal Blewett, even our colleagues in the AIDS Council of NSW, disagreed with us. The head of the National AIDS Task Force, Professor David Penington, called us selfish and irresponsible. Doctors such as Julian Gold at the Albion St Centre in Sydney practised a strategy based on testing and counselling.

As it turned out, the dispute over HIV antibody testing didn’t prove decisive. We always took the view that we would revise our position on testing when an effective HIV treatment became available, and when AZT was approved for clinical use in 1988, we duly did so, and I myself took the test at that point. But it had far-reaching consequences. It was the fear of a state-imposed strategy based on testing and isolation that led us to oppose having a government-run HIV/AIDS centre such as Sydney’s Albion St in Melbourne, and to propose instead that we should operate clinical services ourselves. This led first to the Gay Men’s Health Resources Program and then to the Gay Men’s Community Health Centre, funded by the state government but controlled by the gay community. This was a program unique in Australia and almost unique in the world. I should mention here the role of Dr David Plummer, now Professor Plummer of the School of Public Health and Tropical Medicine in Townsville, in providing the leadership and advocacy that gained support for this program.

The dispute over prevention strategy really was decisive, and it continues to rumble along in every HIV/AIDS program in every country in the world where HIV infection is an issue. The conflict everywhere is about whether the state and the medical profession should impose a strategy, leaving those at risk as merely a passive population of subjects or patients, or whether the affected communities should develop and control a prevention strategy of their own, based on the empowerment of people at risk of HIV infection and also of people with HIV infection. This central issue is the same whether the people involved are gay men in Melbourne, sex workers in Bangladesh, drug users in New York or heterosexual women in South Africa.

I believe that on both of these issues, and on many others, we were right, and that we were proved right by the long-term success of our strategy. We said we could stem the spread of HIV in our community, and we did. We said we could do it without resort to compulsion, to isolation, to quarantine or to mandatory testing, and we did. We said we could create and operate a community-based care network for people with AIDS, and we did. We said the gay community could operate clinical services, and we did. We said people with HIV/AIDS could manage their own programs, and they did, and still do.

On all these issues we were right, and if our example had been more widely followed in other places, the toll of death and suffering from the global HIV/AIDS epidemic might have been significantly reduced.

In December 1984 I made a speech at the public meeting that established the Victorian AIDS Council. I proposed that we adopt as our objective the eradication of the sexual transmission of HIV among gay men. If we did that, I said, we would save ourselves and our community. I was rather naïve in believing that it was possible to stop HIV infection completely, by any means. But I believe I was right when I pointed out the political consequences of adopting this strategy.

I said: “We are the only people with the power to stop AIDS, and this is our one great strength, our one ace. The doctors cannot stop it, the scientists cannot stop it, the government cannot stop it, except by helping us to stop it. Only gay men themselves can bring this situation under control, and we have the means to do it. If we publicly pledge ourselves to this objective, and if we achieve it, we will succeed not only in saving ourselves, but in saving the whole community, from the scourge of this dreadful disease. And the political consequences of such a victory will be as beneficial to us as the consequences of our failure to act would most certainly be calamitous.”

Of course, we didn’t entirely achieve that objective. But we did go a long way towards doing so, and we did succeed in saving our community from the consequences of an uncontrolled AIDS epidemic. Viewed from the perspective of history after 30 years, the lesson of the early ’80s is that when community organisations base their work on good science and sound principles, and when they have clear policies, and when they have the courage of their convictions to stick by those policies in the face of opposition, obstruction and vilification, they will succeed, and in the long run their will be proved right.

Of course we didn’t do all that alone. Right from the start, we had friends and allies; lesbian and heterosexual women and heterosexual men, doctors and scientists, public servants, journalists, clergy and community leaders, politicians and parties, who supported us, defended us and helped us. But at the core of our response to AIDS was us – gay men, brought together by a shared peril, working to build an organisation that would provide care and support to those affected, find a way to prevent new infections, and defend our community against discrimination, while at the same time dealing with the shattering impact of this disease on our personal lives.

Over the past 30 years VAC/GMHC has achieved miracles, and I’m very proud to have spent part of my youth working in and for this organisation. I salute all those who have led VAC/GMHC, who have worked for it, who have volunteered for it, who have given it their time and talent and money. You are all heroes. We have lost many friends along the way, and tonight we should remember them. But we should also remember that there are thousands of people now living in this city who would now be dead if it were not for the work you have done. Despite many errors and failures, we had the courage of our convictions in the 1980s, and we laid solid foundations on which you have built and are still building today. You should have the courage of your convictions today. If you do, you will go on achieving miracles. The final victory over HIV/AIDS is in sight, and I hope it will be less than another decade before we can celebrate it together.