Positive Life New South Wales was created by HIV positive people and the affected community in a time of crisis to be a strong voice for the many people who were isolated and disempowered by the epidemic of AIDS. The history of our organisation is based on HIV positive people speaking out, standing up, standing together and doing it for ourselves.
In 2008, People Living with HIV/AIDS NSW changed its name to Positive Life NSW.
The following article from our special 15th Anniversary edition of Talkabout magazine (first published October 2003) provides a unique insight into the genesis of our organisation in the mid 1980s...
The way we were
Julie Bates and Kathy Triffitt Photo:Glenn Flanagan
In Robert Ariss's book "Against Death: The Practice of Living with AIDS", he mentioned, without naming them, two "uninfected women" on the first Committee of People Living with AIDS (NSW). A lot of women have been unacknowledged in our history. Julie Bates and Kathy Triffitt are now the only surviving members of that Committee. In a conversation with Glenn Flanagan, they describe the people and events from that time.
J: I guess I've been around in hiv from the beginning. Initially from the perspective of sex workers and sex worker representative groups, particularly the very real and present danger of hiv being transmitted to sex workers.
My involvement with people of difference over the years brought me into contact with people who recognised the impact of hiv. And I guess Kathy and I being involved in sexual politics and student politics and the like, it was a natural progression. It just happened that we were there and we were concerned and we had positive friends and others who were affected as we were.
K: I suppose my interest was around issues of visibility and discrimination. I remember having an idea about presenting the human face of hiv/aids. The first person who got involved in the project was Paul Young. And it was through Paul that I started attending the first informal meetings of PLWA late 1987. We weren't incorporated at that point, but we were people living with aids determined to make a change.
J: And in those days there was no differentiation between you and I being so called negative women.
K: At the very beginning, no … It was everybody in together to deal with some very difficult issues. And it was only when we became incorporated that those kinds of differences started to emerge …around being positive and negative. Remember we were elected as 'affected members'? That was the language used then.
The first public meeting of PLWA (NSW) was upstairs in the Trade Union Club in Surry Hills. There were more than 120 people. There was a lot of energy and determination. Paul Young, Robert Ariss, Terry Giblett, and his sister Deborah Giblett were there. I remember John who lobbied for a place on the Committee to represent the views of negative people in relationships with positive people. That wasn't supported. It was decided that the majority of the Committee would be positive, and two positions for associate members (affected by hiv). The people standing for election got up and said their five minute piece and we voted.
The first PLWA picnic at Prince Henry 1989; Don Carter (dodge traffic) top row (sixth from left), Paul Young, Kathy Triffit (bottom row third and fourth from left) Photo: Jamie Dunbar
J: And there was a bit of politicking going on even then - getting the numbers on committees as they say... Roland Davidson was an early member of PLWA and elected to the first PLWA Committee. Rowland was also involved at the time with the New South Wales Users and Aids association (NUAA) and wanted to bring to PLWA issues facing positive injecting drug use and I guess from the perspective of a heterosexual man.
K: He was also involved with Talkabout. His concern was having prisoner's voices heard. He collected some interesting stories for the early issues of Talkabout. What was that first Committee like? There was Terry Bell - absolutely amazing …very dynamic. Every meeting was important. There was always something important in policy or funding to discuss.
J: Yes, because every day somebody you knew would die. People were being left outside hospital wards. Bodies being double bagged. Families not being able to see and pay their respects to their lost loved ones. There were many, many issues. I was on many Government Committees and one of the issues was how do we turn around the funeral industry? The double bagging had to stop. Autopsies weren't being done, and so there was no way of studying the progression of aids related disease.
K: I remember being invited as a committee member to visit people in hospital… they were dying. Staff put them in darkened rooms and bagged all their personal belonging. I remember one situation where they had even taken away someone's walking stick because they said he didn't need it. They had taken away his dignity.
J: I think Paul Young was quite instrumental in turning around the way hospital staff treated people.
Paul was loving and caring, and willing to share knowledge and experience - even his drugs (laughs). And it required somebody like that, who was a bit mad, a bit mad-cap, but who else would have been willing enough and game enough to be the first public face of aids. I don't know who gave him the title or if he gave it to himself, but he was known as the Living Legend of hiv. He forced change on the Airlines to accept positive passengers and people working for them.
He was working at the Department of Social Security. He'd been out to lunch one day, and he rang me and said "Julie, I've just come back, and they're fucking disinfecting my office, including my phone."
K: I think when he got up on World Aids Day 1988 and said…
J: I've been a whore, a poofter, a junkie and I don't know how I got this bloody disease but it doesn't matter …or words to that effect. For some people it was too full on. But without Paul, we would have been a lot slower in progressing towards eliminating many kinds of discrimination. He was a one man show in a way, and as this group was starting to grow you have to have channels of communication, and you have to settle down to a particular role as part of this organisation.
He was very direct and painfully honest.
K: He felt rejected by the PLWA Committee. Robert Ariss and Terry had decided because of his sometimes outrageous statements that someone needed to step in. I remember one meeting they started a discussion about Paul's behaviour. They talked about replacing him as convenor without him being present. I remember saying he should be part of the discussion. … He arrived twenty minutes later…
"Talkabout wasn't the glamorous publication it is now."
I remember Robert Ariss calling me each issue: "OK Kathy, Talkabout is here". There you go - staple - top left hand corner. Talkabout was Paul Young's idea. He was the one who named it.
J: And it was to break down this thing about people talking about you or at you, but never with you.
K: And that was Paul again: "Talk with us, not about us."
…There were a number of other dynamic people on the Committee - Terry Bell, Terry Giblett. The Carter twins (Don and Andrew) were also really important. There was also a lot of burnout, and the Committee changed … a lot of people died or moved on.
J: Terry Giblett and Andrew Carter formed the Quilt Project here in Australia. Paul, once again the naughty boy would call it the Doona of Death.
K: And there was Robert Ariss.
J: Robert was an academic. He didn't involve himself in any extra-curricular activities partying and the like. Robert was very serious and focused. And the early days required a whole range of people - solid, hard working people as well as those who were more flamboyant. They were all necessary.
K: One of my memories of Robert Ariss was the May Day March. It had been discussed that we would carry the PLWA banner and we were to meet down at the park near Central Station. I turned up. Robert was there. And that was it. (laughs) I remember Robert turned to me and said, "Come on Kathy. We're going to do this." So there's Robert and me walking up George Street holding the banner, representing People Living with AIDS (NSW). As we walked up the street people joined us.
J: A little later there was Andrew Morgan. I remember Andrew at an hiv youth conference at Kinsela's Nightclub. Andrew was the main speaker, and he gave such a powerful talk reaching out to these kids, getting them to know that they didn't want what had happened to him to happen to them. This was before there was a formalised Positive Speakers' Bureau.
The big issue at that time wasn't so much treatments as more hospital beds - or treatment as in care and respect. And there was also the issue of self-delivery as in ending one's life but this too is another story for another time.
K: And at the time the orgnisation was formed there weren't any support groups. People were given a diagnosis and left to deal with the uncertainties alone.
J: My feelings about that time? Mixed. More sadness than happiness. But you took the sadness with the happiness. Every day was a new challenge. You didn't take time out to grieve too much. I think if we had we would have been overwhelmed by it.
K: Many issues are still here - stigma, discrimination. There was laughter and sadness. I think we were tighter as a group back then. They were very difficult times. Times when you thought you were losing it, but something would just come along and sweep you up and you'd find the energy to go on.
I think there's a feeling of pride.
J: And honour.
K: Yes, pride and honour.