David Menadue and Sebastian Robinson were diagnosed HIV-positive 30 years apart. Here, the oldie and the newbie discuss stigma, disclosure and survival.
Sebastian Robinson: Can you describe the social climate in which you were diagnosed?
David Menadue: The times were very different. The scaremongering and the vilification really started in the mid-1980s. People like Fred Nile carrying on about quarantining us, and [AIDS] being the ‘Wrath of God’. “We always said that decriminalising gay sex would lead to all sorts of pandemonium in society and, look, it has” — that kind of talk. It was social disapproval on a whole new level because people were scared of you; they were scared of the virus but just as scared of people with HIV.
SR: Do you think that’s changed?
DM: I think it’s changed enormously but I think for some gay men it’s still a scary thing in terms of sex. I don’t think too many people think casual transmission is a big issue any more — I hope they don’t. Do you?
SR: What do you mean by casual transmission?
DM: Just touching someone, being in a room with them; kissing them. Just having social contact.
SR: I think people understand HIV is sexually transmitted.
DM: But they didn’t initially. Doctors had never seen a retrovirus like it before. It was actually called HTLV-III then, it wasn’t called HIV. So I had a test for HTLV-III and they were pretty sure that I was positive for the AIDS virus. But I was 32 and I thought I’m pretty strong and robust. I had 950 T cells when they did the test. So I thought I was going to be fine. But of course, as the ’80s unfolded, it was clear it wasn’t going to be like that at all. There was a time when I did not think I would make 40. So turning 60 a few years back I had the biggest party — a huge party with about 100 people.
SR: Do you think HIV affected your confidence levels or your idea of self?
DM: In the ’80s I felt I had to hide HIV from important people in my life — my family, my workmates. And they were people that I really, really valued. But the last thing I wanted was for those people to reject me. The way I coped was hanging about with other positive people — there weren’t many. A whole lot of people wouldn’t get tested. They thought what’s the point? There was no treatment.
In terms of my self-esteem, my face and physical looks have been the most important change. I got lipodystrophy — the “AIDS look” some people might say. But the head space, and what I’ve done with my life over the years, I’m very proud of in some ways. What about you?
SR: I was diagnosed HIV-positive while I was involved in a play called The Death of Kings [Death of Kings is set within the Sydney gay scene during the early years of HIV]. It was like life imitating art imitating life — it was all getting a little too method! I was in a state of shock because I was told my diagnosis at the same time as a rapid test came back negative, so I wasn’t expecting a positive result.
From the beginning, I knew I needed to be public about my HIV. There are a whole lot of young people that live with HIV but few in the public eye. I thought, I can’t see anyone. Who is that person going to be? I guess it’s me.
DM: Being an out, positive man, you’re doing something constructive; you’re making a strong statement and it’s very hard for people to fight that. If you think you’re a victim, if you think you’ve got this weak Achilles’ heel that you’re trying to hide, that’s when…
SR: ..You create the truth. We can define our own reality and my decision to live with a positive outlook is going to be the reality by which I define myself. If I ever have a public profile as an actor, that information has to be mine and not anyone else’s to divulge. I’ve considered the ramifications of being out and gay and successful as an actor and that suddenly became like nothing when I was diagnosed HIV-positive. I thought, OK, I just have to take this on as well.
DM: And, in the same way that gay shouldn’t be an issue, being HIV-positive shouldn’t be an issue. At the end of the day, this is about social norms moving on.
SR: When someone questions why I choose to be out as a positive man, when they ask why I would put things at risk by disclosing, that’s the reason why I need to disclose. Because if people feel like I should be protecting myself, then that is absolutely why I need to be vocal — because there shouldn’t be that fear. And that fear only exists because of the way we protect ourselves or keep ourselves silent.
DM: Do you feel the need to disclose your status to sex partners?
SR: Generally, yes.
DM: Is that nerve-wracking?
SR: It’s not debilitating but it does play on my mind. I’m not afraid of myself so much, I’m OK with the idea of rejection, but the whole thought process does wash through my head every time. It’s a declaration. What I find pops up occasionally is, because my status is on my apps, sometimes I feel like I’m fetishised. Either people won’t talk to me or they will have a slight higher interest in speaking to me because I am poz.
DM: I’m probably too old to be fetishised I expect. Sex was incredibly important to me. To keep having that human contact when I was poz was terribly important. I always put myself out there even when I was relatively unwell. It was just something I had to do. For me, that meant I was normal. I refused to get into, “I’m this AIDS patient and I’m staying at home” mentality. I would absolutely tell people I was positive.
SR: I was certainly more anxious when I was engaging in sex before I reached an undetectable viral load.
DM: So you’re on treatment?
SR: Yeah, I started last year and I was undetectable within a matter of weeks.
DM: Was that a hard thing, to go on treatment?
SR: Not at all. I made sure I was completely informed and I knew it was best to start treatment sooner rather than later.
DM: There were no treatments at all until 1988 and the first one, AZT, was highly problematic. A series of other relatively untried drugs were rolled out during the 1990s bringing their own toxicities and only having a limited effect in stopping the large number of deaths back then.
The ‘protease moment’ in ’96 was the turning point for me and so many other friends. At that time, I had less than 50 T-cells and had had my sixth AIDS-defining illness. I probably couldn't have survived much longer. From the first day I took the protease inhibitors I felt a great relief taken off my shoulders. My body was thanking me to the point that I became a bit elated or manic. Suddenly, there were all these positive people showing bursts of energy, doing their ironing in the middle of the night and other strange things. Anyway, moving on… has becoming HIV-positive changed you Sebastian?
SR: Fundamentally I’m the same person, but absolutely. It has, let’s say, broadened my purpose. I’m not saying it’s a good thing, I’m just saying that it’s a thing. It’s not what I asked for or expected, but it is with me forever. So, you either choose to integrate it or ignore it, because the HIV is there whether you like it or not.
DM: People like yourself — who are prepared to be open about their status — are helping to normalise HIV in ways which were never possible in my time. Having young people say “Look, I’m HIV-positive, I’m living with it, and I’m living confidently”, I’m just so pleased there are people willing to take that point of view because it’s going to change the world.