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The early days of HIV - Warren Lindberg

Mon 6 Jul 2015 In: HIV View at Wayback View at NDHA

In a speech delivered at Wednesday night's function in Auckland marking the 30th anniversary of the creation of the New Zealand AIDS Foundation, Warren Lindberg briefly reflected on the earliest days of the HIV/AIDS epidemic. Lindberg spoke after the screening of part one of a three-part video retrospective complied for the anniversary which is linked at the bottom of this feature. “It was the best of times, it was the worst of times.” The speed with which the video hurtles us through a decade of events reflects the turbulence of our emotions at that time. Who can forget the turmoil of homosexual law reform in the 18 months between the Bill’s introduction in March 1985, and the euphoria that accompanied the Parliament’s vote 49-44 on 9 July 1986. And in the background to this great step towards liberty and justice was this plague that has taken away so many of our friends and brothers, has dominated our thoughts for the last 30 years, and changed the way we work together, live in our communities, and love each other. While I was privileged to be appointed the first Executive Director of the NZAF in 1986, I was not involved in the very beginning. So although it was my life for the next 12 years, I want to start by paying my respects to those whose leadership established the NZAF in the first place. I can’t possibly do justice to the many individuals who have contributed to this extraordinary story, and hope that better historians than I will pick up this story before too many more of us who witnessed these events shuffle off. The most notable of the pioneers, of course, was Bruce Burnett, deservedly memorialized in the name of the special AIDS clinic in Auckland. I hope Bruce’s story is being documented by a good historian. It’s one of rare courage. Fortunately, others of our founders are still with us. I’ll name a few. Along with Bruce, there’s the other kiwi who flew in from San Francisco, Ray Taylor, who picked up Bruce’s tour of the gay communities of NZ spreading the word about AIDS and teaching us how to cope with this awful threat. Neville and Noeleen Crichton, who took up the challenge to lead the Auckland AIDS Support Network, recruiting and training volunteers who would be there to provide care, support and friendship for anyone living with – and in those days dying from AIDS. Phil Parkinson, scientist, librarian and archivist, who monitored the ‘gay disease’ as it spread across the world, kept us informed through gay news magazine Pink Triangle, initiated grassroots research in local gay communities and excoriated politicians, bureaucrats and anyone else who wouldn’t listen. Tony Hughes, scientist, gay rights champion and indefatigable condom promoter, whose work on the biology of AIDS and HIV and how to prevent it from destroying our community was ground-breaking research, rigorous science and exactly the right advice for gay men. You saw the traffic lights posters flash past in the video: the advice in those posters from 1985 has been reviewed numerous times since – and what makes them so extraordinary is how little the advice has been changed. At the same time, gay communities in many countries were struggling with the same question: how do you start a social movement in a community that has survived underground for at least the last hundred years, and in the face of a life-threatening plague whose origin we don’t know, and when you don’t know who to trust? I have often referred to the New York writer and activist Larry Kramer for inspiration: Organise. Okay, how do we organize? Well, you start with a group of friends, and they get a group of friends, and then you get all of them to get a few friends. You go from neighbourhood to neighbourhood, then from borough to borough, then from city to city, and from state to state, and then you’ve got the whole country. It is slow, thankless, necessary work, and until we do it – until we have one massive organisation - we’ll still be victims of the system. (Reports from the Holocaust 1989) And that’s what these people did here in New Zealand. It’s what Rob Jacobs did leading the STOP AIDS project – Tupperware parties for gay men - not to discuss recipes (although these were not excluded) but to discuss what was known, what was not known and what we needed to do to remain safe. I also want to acknowledge the leadership of those who constituted the first Board of the NZ AIDS Foundation in 1985. A few are here tonight: I’m delighted to see Kate Leslie, the first chair NZAF, Alan Ivory, and Bruce Kilmister, who we’ve recently farewelled from leading Body Positive. Others unable to be here, have sent messages: including my dear friend Jill Amos. It’s important not to forget that our community’s efforts to mount an organized response to AIDS was in the middle of the aggression and fear evoked by the Homosexual Law Reform campaign. Joining this Board made its members a target for the current of ill-will at the time, and might have been career-limiting for some of these people. For example, the first explicit safe-sex leaflet produced here featuring teddy bears instead of humans holding hands induced outrage in some quarters. As notorious homophobe Norm Jones declared: “It’s our bloody taxes that are paying for this to be distributed”. The HLR campaign drew gay men out of the closet, some very nasty people from under the cover of their purported Christianity, some cowardly politicians out of the woodwork, and a lot of ordinary New Zealanders, whose good nature and humanity supported both decriminalization and the gay community response to AIDS. Among those important allies were many of the volunteers to answer the AIDS Hotline phone calls or join the AIDS Support Network. The Mental Health Foundation found funds to employ Bruce Burnett; Roy McKenzie, later Sir Roy, made the first significant donation to NZAF of $10,000 from McKenzie Trust funds. James Wallace – now Sir James – funded Peter Wells’s extraordinarily beautiful film A death in the family, that broke down many barriers for many people. And I’d like to include in that category of allies Sir Paul Reeves, Anglican Archbishop and Primate of New Zealand at the time. Willing to be appointed to the original Board of Trustees, but knowing he was shortly to become Governor-General, he waited until he could give us his blessing as the Head of State. Governors-General since have maintained that tradition. And then there was the medical profession and the health bureaucrats. Those of us privileged to attend the dinner following the HIV/AIDS Clinical Network meeting in May heard Rod Ellis-Pegler talk about his first patients. Here was real medical heroism – since the medical profession knew little –if anything - more than we did about AIDS at first. The willingness of clinicians like Rod, Mark Thomas, Rick Franklin, Richard Meech, and GPs like Ian Scott, Mike Pohl, Ravi Sandhu and Roy Knill, established an unusual collaboration between the medical profession and what had been hitherto regarded as a ‘hard to reach’ community. At least in 1984 a virus had been implicated as the precursor to AIDS, which allowed us to exclude some of the more bizarre explanations: CIA/KGB plots, a virus from outer space, poppers and excessive sexual intercourse that had featured in many media reports. Without minimizing the impact of homophobia and ignorance in making living and dying with HIV/AIDS so terrible, we also need to recognize and celebrate the importance of the generally favorable social environment we enjoyed in NZ when compared with most of the rest of the world. The Minister of Health attended to opening of the first special AIDS clinic, the Burnett Centre; the Governor-General became our patron; Department of Health funding for NZAF support, research and prevention services went into the baseline budget. But let us not forget that one of our survival mechanisms throughout tumultuous times is our sense of humour. Early epidemiology had little science to go on but able to identify five ‘high risk groups’ all beginning with the letter ‘h’: homos, hookers, heroin users, haemophiliacs and Haitians. Q: if you were a white middle class man in Manhattan with AIDS, what was the hardest thing to tell your mother? A: How to persuade her you were Haitian. one of several Raymond van der Huevel and Neil Trubuhovich posters But here’s a real anecdote to illustrate the absurdity of what we often faced in the 1980s: you will have seen on the video the beautiful range of posters featuring our favourite body-building couple, Neil and Raymond. WE decided it was timely to take one of these posters, designed for gay men, to the general public, so negotiated with TVNZ to screen this poster – showing the boys topless and with Neil’s arms around Raymond above the slogan, Love carefully. We thought it was all set up – with TVNZ and the Listener enthusiastic about it, but at the eleventh hour TVNZ’s lawyers advised that Broadcasting Rules at the time required that exposure of men’s bodies should follow the same rules as exposure of women’s, and nipples were not permitted. We could proceed with the screening if we air-brushed out the nipples. There are two more serious points to make about censorship. One is to recognize the persistence of gay businessmen Brett Shepherd and Tony Katavich to challenge NZ’s censorship laws at their own expense. The other is to recognize the important principle on which our censorship law was based: that is, whether or not the material would be ‘injurious to the public good’; and the support of the censor at the time, who advised us that because NZAF existed to promote the public good, he would approve whatever material we considered necessary to achieve that outcome. There’s two more serious points to make about censorship. One is to recognize the persistence of Brett Shepherd and Tony Katavich to challenge NZ’s censorship laws at their own expense. The other is to recognize the important principle on which our censorship law was based: that is, whether or not the material would be ‘injurious to the public good’; and the support of the censor at the time, who advised us that because the NZAF existed to promote the public good, he would approve whatever material we considered necessary to achieve that outcome. While each case of HIV and AIDS was in itself tragic, and the numbers in NZ remained challenging, the worst case scenarios feared by the Department of Health as well as the gay community, had not eventuated. The Otago University AIDS Epidemiology Group’s considered opinion was that the numbers had plateaued around 1989 because of the efforts of the gay community. But also by 1989, AIDS was no longer a gay disease. A small number of injecting drug user cases had been identified and NZ, along with Australia, had decriminalised possession of needles and syringes and established the world’s first government-sponsored needle exchange scheme. A number of heterosexual men and women had been identified, and the NZ Prostitutes Collective was getting Department of Health funding. Especially since 1986, Eve van Grafhorst’s story had begun to shift the HIV/AIDS discourse. (Why and how New Zealanders rally so effectively around an opportunity to humiliate Australians requires careful sociological inquiry.) By the time I left the NZAF in 1998, the big issues were no longer so much about whose epidemic it was, and more about treatments. But even then, we were becoming aware that another generation of young people would be growing up in a world where HIV/AIDS was no longer the mysterious random killer, nor God’s wrath on homosexuals. New ideas would be required for this new generation. Prevention would no longer be about ‘messages’ but about how all of us – gay or straight – develop and maintain open, honest and respectful relationships. HIV/AIDS changed not only the communities affected, but also the sciences of virology, immunology and pharmacology. It changed the way the health system relates to marginalized communities, how privacy is respected and informed consent obtained, about how can work together as a system that engages all the affected parties, and especially about how we do contract tracing and how we can care for people who are dying. At the end of the first decade the second book on AIDS in NZ was published. The first had been Paul Goldwater’s AIDS: the risk in NZ in 1986, which described what was then known about HIV and AIDS. The second was Intimate Details and Vital Statistics edited by health sociologist Peter Davis in 1996. The time is well overdue for another. Thank you for offering me the opportunity to reminisce a bit today. I was privileged to work for the NZ AIDS Foundation at the centre of a great moment in the evolution of health care and health promotion. My very best wishes to those who now carry this burden. Warren Lindberg - 6th July 2015    

Credit: Warren Lindberg

First published: Monday, 6th July 2015 - 6:20am

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