Positive Life NSW

Ross Duffin

Now in his mid-50s, Ross Duffin has been integrally involved in the politics of HIV/AIDS since news of the virus first broke in the early '80s. In this first part of a wide-ranging conversation, Ross speaks to Susan Ardill about his early days at ACON, the antibody-testing debate of the mid-1980s, the 'sero-divide' and the terrible years when the epidemic hit hard in Sydney.

Susan: You grew up in Melbourne. When did you come out?

Ross: In '75, when I was 19. I met a guy at the beat. He was handing out anti gay-bashing leaflets – he became my lover.

I left medicine in 1978. I knew it wasn’t what I wanted to do. So I went to Canberra, worked in the public service. And I lived there on and off until 1983. I liked Canberra, but when HIV came up, I knew I had to come to Sydney.

I'd had a couple of long overseas stays. I went to the national Canadian gay conference in Toronto in 1982 and there were two doctors there who put up this chart that showed the statistics of AIDS. It was like a parabola, it went up and it went down, and they said it’s all over, it’s just like toxic shock syndrome (laughs).

Then I went to San Francisco and there was a group called Bay Area Physicians. They had just had a conference and were given the results of early epidemiological studies. A cluster of men who had AIDS had all been going to the same sex venue in Los Angeles. This was fairly convincing circumstantial evidence about some infectious agent. Basically, all the doctors knew immediately that whatever was going on was going to completely and utterly change our lives. I remember sitting on the steps of San Francisco Town Hall and this doctor was telling me about it and he was almost in tears. In San Francisco, by the time they knew about it, their sero-prevalence was over 40 percent, which was just staggering. Ours [in Sydney] never went beyond 17 percent.

Bigger than Ben Hur

So you moved from Canberra to Sydney when AIDS began to happen?

[From having been in SF], I knew what was coming and I knew it was bigger than Ben Hur. I also knew that we weren't going to cope very well. We didn't know what sort of infection it was, viral or bacterial (which was highly unlikely), or whether... mad cow disease was around at the time and that was a new sort of agent. There was speculation that [whatever caused AIDS] could be some other sort of infectious agent, particularly because blood was involved. But anyway, I knew, whatever it was, it was big and it's going to affect our lives dramatically, so I want to be in Sydney.

Did you see this in terms of wanting to be internally supported as a gay man or wanting to defend against external attacks?

Both! I thought both were important, that "gay" would come under big attack and that, given it came at the particular time where we'd had law reform in most places and gay liberation was sort of dying, there was a renewed reason to be involved in gay politics.

That was before you knew you were positive?

I don’t know when I seroconverted. It could have been in the early '80s. I went and had the test when it first became available [in 1985], then I told my doctor not to tell me the result, because [NSW Premier Neville] Wran had passed those laws [laws that made HIV a notifiable disease and created a database of names]. My doctor unexpectedly told me my result a couple of years later. Like, oh shit – I went to see him for something else and he said, 'by the way, I think it's time I told you'.

Were you shocked? Even though you thought you might be…

I knew there was a chance.

So back to the early '80s and the beginning of ACON...

I was on the first committee/board of ACON and I was convener of the education working group. ACON was formed out of a coalition of six groups.

And ACON was essentially an organisation of gay men, to deal with AIDS?

Absolutely! For the first period of ACON's existence, they had no government funding. When funding came along we went from being a community-based activist organisation to a professional sort of organisation. Completely different environment, completely different ethos.

Minutiae

Let's talk about the prevention/education work you did.

It’s a long time ago so my memory of that is dim. There’s a couple of things that stand out. One was producing reliable information on what is and what isn’t safe. And the level of engagement with minutiae was extraordinary, because people really wanted to know, so we had to produce an incredible amount of detailed information. And a lot of it was just speculation and we got some things wrong. The other stuff about that period was that there was a real coalition between drug users and sex workers and gay men. That simply doesn’t exist any more. Gay men got respectable and drugs users and sex workers didn’t in the same way. But you know, we had a real coalition – there was a whole collective finding-out of what was going on.

The thing about HIV, basically it challenged everything: our prison systems and drug use… I found all of those things interesting. But of course in the end, not a lot changed. It looked like it would have to, but it didn’t.

But what did change was the antibody test.

Yeah. The test became available in '85 and of the first 1000 people in Sydney [in one study], 50 percent were positive.

And then there was a debate amongst gay men about whether to test?

ACON was recommending don’t get tested because it was no use until there were safe treatments [there were no treatments at this time], so why do you need to know that you are – just assume everyone is positive [and practise safe sex]. And the evidence about testing and changing behaviour was very mixed. The doctors were pro-testing, Albion Street in particular, run by Julian Gold. The doctors' line was that, if you got tested, you were more likely to practise safe behaviours.

Sexual ghettos

I wrote, which I’m not so proud of now in retrospect, but I wrote a big two-page feature for the Star [Sydney Star Observer gay newspaper] about why testing is a problem. It’s a very complicated story and the world’s changed. Look, in the '80s we lived in a world where HIV was at the forefront of everyone’s mind. Now in the next generation, HIV is way down the list. So it's much more likely that [today] HIV testing will change behaviour. Whereas then, where HIV was the issue in everyone’s sexual lives, the line the AIDS Council was running was that you should have safe sex with everyone regardless of antibody status. But if you have this testing, you’ll set up sexual ghettos … which is what happened (laughs).

It did happen?

Yes – and in limited ways they still exist. We highlighted the potential for discrimination, which became quite a big problem and happened in all sorts of ways. The line we used was that if you can’t handle the result, don’t take the test.

We also advised gay men not to disclose your positive status to others as it could make you a target for discrimination, including on a personal level within gay communities. When I found out I was positive, I realised how problematic this advice was.

Let's talk about working at ACON in the early days.

ACON started in '84 with one part-time convener and a typist.

Those were the days of typewriters!

Then we had an education officer, a community support worker and a convener (and the typist). So that was four. By 1989 there was 40 or 50 and by 1990 there was about 100. So it went whoosh. All of a sudden I went from being solely responsible for doing educational stuff to having a team.

The prevention assumption

After a while of doing that, I got my positive result. The thing I immediately learnt, because people weren’t open with each other about their positivity, was that the assumption under which we were working was that the world was negative. It was a prevention assumption. And that simply didn’t work when you read it from the perspective of a positive man.

I was sitting in meetings talking about that and I suddenly looked at the body language of two or three other people in the meeting and I realised that they were positive and that they agreed with me. And I thought, 'oh shit, we’ve actually been doing this seriously wrong'. We were telling people to assume everyone’s positive [and to always practise safe sex] whereas we weren’t actually assuming that at all. Let's assume that everyone's negative [and our work is to keep them negative], is what we were actually doing.

What difference did your realisation and being open about being positive make?

People being open about positivity changes the way we have to think about sexual communities. Because the line about 'don’t talk about it', what it said was, here’s all of our friends who have these major life-impacting results and then they’re not allowed to talk about it! The notion that they’re expected not to talk about it was laughable. We were in fact denying the reality. What we were doing was setting up the environment where we could actually pretend it wasn’t happening.

And the other thing is, you meet someone and you’re positive, you might want to get to know them and our rule said 'don’t disclose'. If I met someone, apart from the dishonesty, if you want to develop a real relationship, you need to tell them. It was a fairyland to think that you could just assume it wasn’t there and not talk about it.

When PLWA [People Living with AIDS, now Positive Life NSW] started in '88, you were at the first meeting. You didn’t identify as having AIDS did you?

Oh no. There was the big debate about forming the group – in 1992, the term became 'people living with HIV', which was the change from AIDS as the defining thing. It was people living with HIV and AIDS, PLWHA.

T-Cell Group

There were a number of early positive groups. There was one called the T-Cell Group, which was for people who had less than 200 T-cells. That was before the antibody test. So the T-Cell Group was for people who were sick, generally for people who had AIDS. Less than 200 T-cells meant that they had whatever this disease was.

Was that a defining thing, the 200 T-cells, or people just randomly chose that?

It later became the definition of Category IV of HIV infection, 200 T-cells. The definition was changed from having a recognised AIDS-defining illness to having less than 200 T-cells.

You said that, not long before the formation of PLWA, nobody positive was talking to anybody else who was positive.

It changed really quickly. So in 1986 no-one talked about it. By 1988 we were talking about it, yeah, yeah. And by 1990 there was a huge problem with negative and positive relations inside the movement. That was just incredibly awkward. And there were some really difficult years – the years of the 'sero divide'. There was a lot of tension around … it’s a long and complicated story, that one.

There were quite a few significant HIV sector people who argued vociferously against people with HIV coming out. And the meeting we had at ACON to change testing policy, there was blood in the water!

The testing debate

A change from what to what?

From don’t test to pro test! And I was put on the crossexamination table. Because lawyers who saw the other side, the discrimination and all that, they hated…

They were anti test?

Oh, you bet. And they had good reasons to be…

And you became pro test?

Absolutely. Because if you wanted to go and get treatment… But the other thing was, [testing] changed how I planned my life. Because the reality was, if I'd been negative, I would have left the city and gone and done other things. But now this is what I was going to do for the rest of my life. And I didn’t expect to live, you know. No way I expected to be here this century.

So when did this pro-test debate happen?

In about '87/'88. For a lot of the '80s we were anticipating what was coming, but it wasn’t actually here yet. It didn’t really hit in a big way until about 1987, '88. The '80s was experienced as a virtual epidemic, it was the headline story in the paper, almost every day. We would get the weekly media clippings and they'd be this thick! There were five or six stories on HIV/AIDS in the papers every day. It was nuts, completely mad!

But then it did hit, in the late '80s.

Yes. So I should talk about the HIV support project. Levinia Crooks had been doing a research project [at ACON] interviewing positive men and she had this huge network of positive men who were talking to her. So through her work we set up the HIV support project. We all participated in the first support group just to trial the model. By the end of the third year, there were 15 groups going on at any one time. The project ended up seeing 5000 people, which was half the population of affected people in Sydney at the time. It was just massive. We tended to see people when they were leaving work, getting unwell.

The sero-divide

We trained 500 facilitators. I used to keep the database. During the period '88 through '95, 250 of those facilitators died. We would get The Star [Observer] Tuesday or Wednesday. You would open it up, there was a page of obituaries. Like a full page. And half of them were people who were involved in the project in some way.

The people who worked in the project [at ACON] would go and sit on the couch in the basement, most of us smoked, might open the paper, just have this absolutely dreadful 10 minutes and then have to go back to work. It was hideous. And most of the rest of the organisation didn’t even know it was happening, which was where all of that sero-divide was happening. Here were these people absorbed in this stuff that was just incredibly shocking and we were incredibly unequipped to deal with it. And there was this other lot of people who seemed to us to be living in a fantasy world that wasn’t really attached to [our] world. Eventually the two worlds came together, because a few significant people like Robert Arris [who helped form PLWA], who were well and widely known and liked, died and others started realising the world that we were living in.

For a while it was just torture. That was a very surreal experience. There were very few people who were having that experience, whose lives became completely overwhelmed by the impact of HIV. Sure, there were probably thousands in Sydney where that happened. But the majority of gay men could probably live through the '90s and not have anything like that experience.

This conversation will continue in the next issue of Talkabout, when Ross discusses the HIV movement's relationship to doctors, the advent of anti-retroviral treatments and the re-invisibilisation of HIV.