Sarena Ruediger

AIDS COUNCIL OF CENTRAL AUSTRALIA, HIV/AIDS coordinator, Dept of Health 1988–1994

    It was really the power of everybody coming together that made it at all possible to respond to what we were having to deal with... It was very urgent, it was essential to respond respectfully and it had to work. It was time to do a lot of things that was challenging for everyone, especially people who were at risk or already affected... there was lots to do, it required everybody to act.... we managed to put on the first HIV/AIDS conference in Central Australia to bring everyone to attention, to take part. It couldn’t just be a talkfest, it wasn’t... We did a lot of really amazing stuff out bush... We had to break through the whole thing about, "It’s not cultural. You can’t talk about sex or any of those things out in Central Australia", and we blew all those myths apart. 

    My name is Sarena Ruediger. I timed my moving and living in Alice Springs with the beginning of the HIV/AIDS epidemic - an urgent, timely response was needed. What was critical to that was supporting the already significant efforts that had been going on by a small group of gay men, largely, to develop a really strong community response, and to set-up an AIDS Council.

    That must have been about ’86 to ’88. I was working with the NT Health Department at that time. Neal Blewett, the Commonwealth Health Minister at the time had initiated and established a Commonwealth consultation process that contributed and informed the way to move forward. This created a supportive policy environment and mandate for us to work from. A Time to Care, a Time to Act as I recall. My involvement, along with everyone involved, was helping to set that up and deliver. It was such a collective effort at the time with everybody being part of ACOCA. ACOCA was vital. I got to know and admired their commitment, passion and smarts. Even though we had to think on our feet really. My main role was working in the Health Department but I was an ordinary member on ACOCA from about 1988 to about 1994.

    HIV/AIDS was new. It was the Grim Reaper time, so there was a lot of not knowing or misunderstanding about HIV/AIDS. People need to get accurate information and challenged about their values. We were starting to see people affected by the illness, mainly gay men were becoming sick. It was kind of urgent to do a lot of things at the same time and, from the Department, we couldn’t have done anything well without the AIDS Council of Central Australia. We had to work together. We were like one big family.

    We contributed to the response needed in Central Australia. We had to set up HIV testing and counselling services; there was a big avalanche of that going on as people became more aware. Those days, everybody was worried about HIV and AIDS affecting Aboriginal people and their communities, so we did a major response to that working with Congress, CAAMA, the Alukura and community leaders throughout central Australia. I remember at that time we needed to promote condoms. That was new business for most. We had to do a lot of PR work and we did a lot of education workshops. We worked with Congress really closely: we helped spray paint the Congress car, we worked on promotional material, and we worked on employing people to work with us. We worked on men’s business and women's business. Frank Djana, Geoffery Tjungurai Barnes, Paul Rivalland were instrumental in Men’s Business, while women’s business I really remember Jennifer Thompson, Julie Turner, Susie Bryce, Family Planning mob, Pam Lofts and many others who made a big difference through their commitment and support.

    Funny stories and adventures with condoms. 

    I remember one day going to somebody’s house, he had an interesting toilet roll holder. It was a perfect sized penis, and I think Kerry Leitch spotted said, "Oh, that’d be great for us to use as a model for teaching purposes", - we only had bananas through Family Planning. Who was going to take safe sex seriously with only a plastic yellow banana? We tried out some other suggestion that someone had said to us from Darwin actually. I think Dino Hodge was around then. Alexa Young and Kerry Leitch did a dash to the sex shop in Darwin and bought a thousand wax candles. They were all good until they had an inappropriate droop in the hot sun on the way to Uluru and we received some feedback from the many remote clinics we had distributed to. Live and learn exercise. One of the gay boys was a potter and made us a thousand skin coloured and black clay penile models that stayed up. That was just amazing because we actually had a really, excuse the pun, useful tool to use.

    We led on everything, really. We really had to start caring for people. At that time it was just shocking. People were very young. We had a number of gay men and we actually had a really beautiful young straight woman who had gone for a trip to Africa and come back. So we were dealing with setting up all of the things that needed to be set up to care for people – and that was just learning on your feet. We actually did care for all of those people, and we were busy at the same time dealing with people that were returning HIV positive results and/or at risk, in linking them with the AIDS Council and trying to create some sort of supportive environment for them.

    There was a lot of discrimination and not really understanding it. So the whole thing about infection control and about getting people to the best quality care that was available, which at the time were specialist services mainly in Sydney. While we had to do a lot of demystifying, those people living with HIV and AIDS were their own advocates along with ACOCA. We supported them and their families and their friends as best we could. 

    I remember one person who died and the mortuary and the funeral directors wouldn’t take his body, which was pretty distressing. The doctors wanted to put patients in isolation and make it public that they had HIV and AIDS, so we did a big role in advocating for their privacy and discrimination and confidentiality issues around their HIV status and their sexuality. We had to work with the church and other powerful community groups and some of their responses, etc.

    We had the Commonwealth strategies and AFAO behind us. That was essential in supporting privacy and confidentiality. We set the system up to protect that but even within the department, people wanted us to tell names because it was a notifiable disease. I remember being asked to disclose, because actually our team were the only ones that really knew their names. We never disclosed, so we had a little bit of a hoo-ha with certain individuals at the time.

    I think we had it a bit easier, for some reason, in Central Australia than in Darwin. It was easier to have a faster collective effort and response in a smaller sized community. It was really the power of everybody coming together that made it possible to respond to the issues, so much better. The NT AIDS Council were doing a lot of advocacy work that made it easier for us too, like around setting up a needle exchange program – that was pretty challenging. Even addressing issues around legislation for sex workers and trying to create safe sex working environment for them was a really big one at the time because of the NT legislation – there was no official brothels. God, there was so many issues and solutions to find. 

    The Aboriginal response – I think the AIDS Council really helped with that because we managed to put on the first Summer of Safe Sex and the first HIV/AIDS conference in Central Australia, and that was a joint effort between ACOCA. In fact, they did a lot work in getting it all ready. That was in about 1991 and a lot of things came out of that. It was called The First Central Australian HIV/AIDS conference. It was held at Araluen. We had a full house – it seats 500 people, and we did it on six grand. I got the money for that to fund it and to employ Di Lynn through ACOCA for a time to coordinate it. We pulled in a lot of speakers. Fred Hollows came up – he was interesting because he wanted to put gates into all the communities to stop people coming in with HIV. Malcolm Cole was instrumental in that conference because he was really the centre stage as an Aboriginal man deeply affected. He came up willingly and I think at that time he was probably starting to feel a bit unwell, yeah.

    We were very, very sad. You’re dealing with people dying, bravely, in front of you all the time. I wasn’t part of the gay community but I was considered part of their family. It was a tough gig. We started to make quilts then.

    We did a massive joint community education effort in Central Australia - The Summer of Safe Sex. Di Lynn did a great job organising it for ACOCA. 

    We made a massive giant condom. It must have been at least twelve foot long and about three foot wide. We took it in the Henley-on-Todd, the boat race held in Alice every year. We had all these baby condoms all dressed up around it, and we were throwing condoms out to the crowd. We did pretty well in the Henley-on-Todd; everyone else had boats and we had a giant condom with little legs out of the bottom of it.

    I worked pretty closely with Tony Hand. He was fabulous. He did a lot of the beat work, a lot of the setting up of the needle exchange, just everything. Kerry Leitch was amazing because she’d worked with AFAO. So she had really good corporate governance skills, and she was a laugh a minute and just charmed everybody really. Alexa Young, who I worked with, was fabulous. She did a lot of all of the hospital work and nurse education, protocols around health care worker education and safety stuff. She really contributed to breaking down barriers and enhancing quality work and tackling and dealing with conservatism and fear.

    Don Dale was the NT Health Minister at the time – if he hadn’t had given the go ahead, it would have been really problematic. We were surprised, it being a conservative government, that he gave the go ahead to the needle exchange program. Instantly. And he got the police on side. We – me, Tony, Kerry – had a meeting with Don Dale and the police to set up and get the needle exchange at ACOCA working. It was well used, discreet access, confidential and safe. 

    One person who I cared for really closely wasn’t part of the gay community, as such. They were a very private couple. I became very close friends with him and his partner and helped them through their journey until he died in Alice Springs Hospital. I remember night after night being up there. We tried to keep him at home for as long as we could. I remember he said, "I just want to die watching Tony Barber’s Sale of the Century with x." Blow me down, that’s what happened. He sat up there and said, "Prop me up on these pillows and turn on the tele please, I’m watching Sale of the Century,’ and they were difficult words for him to get out. He just passed away watching Sale of the Century.

    We did a lot of really amazing stuff out bush. There was an Aboriginal man, Frank Djana who passed away some time ago. He was profound in his ability to bring men along in Central Australia. And an Aboriginal woman, Kerry Arabena, who we did work with in Women’s Business that got pretty down and dirty when we did it properly out bush. We had many laughs, and honest and open education opportunities with women. The NPY Women’s Council made great women’s only business videos, that we used to great effect in every community with our portable telly on in private women’s spaces. We developed women’s resources, like streetwise comics with a local flavour, they helped in explaining a lot of important information for women. We had to break through the whole thing about, "It’s not cultural. You can’t talk about sex or any of those things out in Central Australia", and we blew those myths apart as best we could. We went on that journey with a lot of people too. I didn’t do the men’s stuff but I certainly did the women’s stuff. That was really important at that time. I think we did it respectfully and properly according to law for women, and that was just another world really.

    Paul Rivalland worked with Frank and Geoffrey, getting black coloured condoms that Aboriginal men wanted. Tony Leitch, an artist, worked with them in making a community storyboard to talk about important issues for men. It travelled to every community and the stories travelled with it. Dave Batty and Frances Kelly made films and promos, they were great, through CAAMA Radio and viewed on Imparja. The list goes on.

    We had some great dance parties as well – setting up a gay and lesbian friendly venue for people to come together as a community. That was just a full-on initiative by ACOCA and by people there. They were great nights, even though I think we had to shift venue a couple of times. One got closed down because of the public backlash, and then it re-opened around the place and they were great. I remember Magda Szubanski came up, and Tiddas. We had good music and it brought everybody together - even if you were just passing through Alice. All welcome.