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DAVID MENADUE POSITIVE
ALLEN & UNWIN
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First published in 2003 Copyright © David Menadue 2003 All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without prior permission in writing from the publisher. The Australian Copyright Act 1968 (the Act) allows a maximum of one chapter or 10% of this book, whichever is the greater, to be photocopied by any educational institution for its educational purposes provided that the educational institution (or body that administers it) has given a remuneration notice to Copyright Agency Limited (CAL) under the Act. Allen & Unwin 83 Alexander Street Crows Nest NSW 2065 Australia Phone: (61 2) 8425 0100 Fax: (61 2) 9906 2218 Email:
[email protected] Web: www.allenandunwin.com National Library of Australia Cataloguing-in-Publication entry: Menadue, David, 1952– . Positive. ISBN 1 74114 064 1. 1. Menadue, David, 1952–. 2. Gay men – Australia – Biography. 3. AIDS (Disease) – Patients – Australia – Biography. I. Title. 306.7662092 Text design by Chong Weng-Ho Typeset by Pauline Haas Printed by McPherson’s Printing Group 10 9 8 7 6 5 4 3 2 1
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For Bridget and Colin
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Contents Preface 1 Acknowledgements 3 Prologue—No Visitors Allowed 5
PART ONE 1 2 3 4 5 6 7 8
A Secure Place 15 Testing Times—1984 23 A Soulmate 31 Panic 47 Turmoil 59 Leaving Work 66 Living with a Prognosis 76 Attitudes to Death 83
PART TWO 9 10 11 12 13 14
Sandpits and Building Blocks 95 Bullies 109 The Golden Nine 117 Secrets 136 Lucky Breaks 146 Love and Lust 159
PART Three 15 16 17 18 19 20
Celebrations 171 AIDS Politics 187 New Hope 205 Education 217 Support 229 Positive 236
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preface
Being positive about being HIV-positive has been one of my saving graces over the last twenty years. While I don’t subscribe to the view that you can defeat something like AIDS with affirmative thought alone, taking an optimistic view about your prognosis is an important ingredient in survival. I have lived with HIV since the early 1980s, through a period when people were stigmatised by the media, right-wing politicians and church leaders, among others. Even some people in my own gay community, where I expected support, were frightened and unsure how to treat those of us willing to admit we were positive. There were trying times in the late eighties and early nineties, when so many friends were dying from AIDS that it seemed we were experiencing a holocaust, our own private war, with hundreds of our friends being cut down. I developed my first AIDS-defining illness in 1989 and was given two to three years to live by my doctors. I have managed to 1
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survive for many years beyond this prognosis. Incredibly, I am now one of the longest-surviving people with AIDS (as opposed to HIV) in the country. There may be factors in my life and character that have helped in my approach to adversity. Certainly I think it has helped that I have been out as a gay man and person with HIV. There is a stigma around HIV/AIDS, and I have sometimes wondered if this was a factor in the deterioration in the health of my positive peers. But I don’t have a particular answer to explain my survival. I believe that a fortunate mix of luck, medical expertise and improved treatments, support from friends and family—as well as an almost blind optimism on my part—has helped me to stay alive and tell my story. HIV/AIDS remains a problem in Australia today, with a recent small but significant rise in infections perhaps pointing to a sense of complacency about the disease. In many countries around the world, it has become an epidemic of catastrophic proportions. Only a massive change in political will can change the path of what is already one of the most devastating epidemics in world history. I like to think that the stories of positive people will play a role in overturning the ignorance and bigotry often associated with HIV/AIDS. If in some way my story can help to keep the issue alive, or help others with their way forward in understanding or living with the virus, then it will have been worth the effort.
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Acknowledgements
Bridget Haire and Colin Batrouney inspired me to write about my experiences of living with HIV/AIDS in the magazine Positive Living. Without their initial encouragement, I would not have got this far. I would also like to express my gratitude for the inspiration and guidance given to me by the late John Iremonger from Allen & Unwin. Without John’s patience and direction, I would not have persevered with this book. A big thanks also to Sophie Cunningham, who took over the publishing task so adeptly after John’s death, and to Bruce Sims for his intelligent and sensitive editing. Thanks also to Rachel Lawson and Sandy Webster for their help with the final editing process, and Chong Weng-Ho for the book and cover design. Thank you to my friends Rosemary Noble, Bridget Haire, Tony Keenan, Sandra Gregson, Max Niggl and Greg Horn, who all read the manuscript and provided me with feedback. Thanks
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to Gary Jaynes, Graham Willett, Helen Pausacker, Jamie Gardiner, Peter McEwan, Richard Fuller and James Spence for their help with photographs and research. Thanks also to John Sharp, Jenny Brown, Lyn Harper, John Andrews, Ian Edmondson, Paul Attard, Allan Stewart, John Henshaw, Dale Withers, Alan Mayberry, Peter Carroll, Marjory Gardner, Louise Merryweather, Ed Brumby, Barry McKay, John Daye, Kevin Guiney, Mike Kennedy, Jo Watson, Leslye and Fred Thiess, Graeme Brewer, Darren Gaut, Dr Jonathan Anderson, Dr Jennifer Hoy, Eric Timewell, Richard Walters, Dennis Muir, Barry Horwood and Jim Hyde. And thanks to my sisters, Julie and Lyn, and brothers, Alan, Phillip and Trevor, and their families, for their support.
The research findings quoted in Chapter 20 are from Steven Cole, ‘Accelerated Course of Human Immunodeficiency Virus Infection in Gay Men who Conceal their Homosexual Identity’ in Psychosomatic Medicine, 1996, Vol. 58, No. 3, pp. 219–31.
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Prologue No Visitors Allowed
I am told that I have AIDS at Fairfield Hospital in early 1989. I am not all that surprised. I tested HIV-positive in 1984 and have spent five years watching friends get sick and die from this virus. But as I lie in my hospital bed and wrestle my first serious AIDS illness, I am unprepared for the mental turmoil. There it goes again. Banging and thumping noises that keep me awake at night. They’re coming from the room opposite. Is it the hospital morgue? There seems a lot of activity over there—maybe they drag the bodies there, after they die from this horrible plague. The corridors must be awash with blood. The cleaner must try hard to keep the floor clean. But the blood keeps coming back, filling the ward with a never-ending tide of death.
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And it’s all my fault. Since I was admitted, people have been falling like flies. I hear a groan or a sigh in a nearby room: oh yes, another one’s gone. I’ve brought death into this place and now no one can control the madness. I can kill people just by looking at them: one glance from my little eye and people—nurses or friends—are in mortal danger. I cannot be trusted and cannot even trust myself. I must not make eye contact with anyone. The hospital will have to get rid of me. One night three or four nurses stand around my bed and stare curiously at me. I am not put off by their kind smiles: they have come to get me. One of them has a hypodermic behind their back and wants to inject me with a lethal dose. They need to get rid of me, to let the hospital return to peaceful times. The doctors say that I have AIDS—and I know this means I am going to die soon. It might be tonight. I cannot go on much longer. I pray to God that I be lifted to Heaven in a peaceful, dignified way. I levitate, lifting up to meet my Maker. But no, I must see my family one last time. The hospital has set up barricades outside the ward, with police and firemen to stop my relatives from getting in. I’ll beat them somehow.
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Then a miracle—a closed-circuit television has been set up for me in a corner of the room. In my last moments on earth, I am able to see each of my brothers and sisters, and my mother and father, one last time before I die.
This madness is embarrassing to reveal. But it shows the level of physical and mental distress I was experiencing. Physically I was suffering from a serious, AIDS-defining illness called pneumocystis carinii pneumonia (PCP) and was being treated with huge doses of the antibiotic Bactrim. Strange mental reactions can happen to people who take what is a fairly toxic amount of this drug. But the highly paranoid and bizarre thoughts that were going through my head were also founded in deep psychological scars about having AIDS. Friends come to visit me and are shocked at my disturbed mental state. ‘How did you get through all the bodies in the corridor?’ I say to Graeme, who has just arrived at my bedside. His look of stunned disbelief doesn’t really register with me. I’m sure there are bodies out there, but even a good friend like Graeme has obviously decided not to talk to me about it. We continue our conversation about what he and his partner, Darren, have been up to over the last few weeks. Another friend of ours is very sick with AIDS and we talk about him as if there’s nothing particularly wrong with me. The same thing happens when John, a friend for more than twenty years, arrives the following day. All I can think about are the barricades I believe are stopping my family from entering the hospital to see me. They are elaborately constructed steel and wooden fences guarding the stairs to Ward 4. Policemen ask 7
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individuals for ID: if anyone connected to me is identified, they are banned. They can’t come in. ‘So how did you get past the barricades?’ I say to John, wondering how he slipped past the authorities. He mumbles a reply but clearly has no idea what I’m talking about. My brain then steadies itself, and John and I chat on as if everything is relatively normal. The melodramatic scenario with the nurses and syringe might indicate that I watched too many Alfred Hitchcock movies in my youth. But I had also never gone through such trauma in my life. I can remember every bit of this experience, this temporary madness. During the worst period, my behaviour had led staff to place a sign on the door of my ward, no visitors allowed . My recovery is slow, with the treatment taking about ten days to finally conquer the infection in my lungs. When I am put on a reduced dose of Bactrim, some of the delusions and madness begin to subside. I feel like I’ve been through a psychological marathon, where mental demons have tried to drown me in fear and paranoia. When I am lucid enough to understand and trust the opinions of my doctors (no more fear of hypodermics), they tell me that I have suffered a ‘temporary psychotic episode’. It is not the beginnings of AIDS-related dementia or a sign of some serious problem with my brain. I am in a precarious health situation now, they say, and will have to take great care of myself in the future. When pressed about my prognosis, the nervous young registrar stutters out a response. ‘Well, on current figures, you might have two to three years to live. But there may be new treatments on the scene soon, so you can never be sure about these things.’
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Two to three years. And I know that is optimistic: the current average life expectancy for someone after suffering PCP is eleven months. Why should I be any different? My close friend Michael has just spent three months getting over a second bout of the pneumonia himself, and is still very weak. He’s been in and out of hospital on a constant basis, and a doctor has told his mother that he probably has only a few months to live. If this is true, and Michael is to die, my friends must be thinking, It will be David’s turn next. Of course I am feeling scared. I am a 36-year-old man with a good life, a career in children’s publishing, a large, supportive group of friends, and lots of reasons to live. I don’t want to die. I’ve thought a bit about death and dying since the diagnosis, but the reality has never confronted me so starkly before. In many ways, I realise, I have lived in denial, thinking I would be one of the lucky ones who would somehow be spared from developing AIDS. I would remain asymptomatic. While the shock of having this delusion stripped away explains some of my distress, it isn’t the only reason I had gone through such mental torture. I have been worrying about being ‘an agent of death’. I can only interpret this as evidence that I have internalised the social stigma of being HIV-positive. Clearly there is still an acute concern lurking in the back of my mind about my ability to pass the virus on to others. I have been particularly concerned about the risks of passing it on during sex, even when using condoms, and at times over the past few years I have chosen celibacy. Rejection from friends unable to cope with the idea of knowing someone with HIV has hurt me deeply, as have rejections from sex partners.
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I have also spent years listening to negative messages from right-wing journalists and church leaders about AIDS, claiming it was a scourge visited on homosexuals and other sinners with ‘promiscuous’ lifestyles. For fundamentalist preachers like Fred Nile, from the Festival of Light in NSW, or Jerry Falwell from the Moral Majority in the USA, AIDS has been truly manna from Heaven. Moderate church leaders are far more compassionate and reasonable, but this negativity has affected me. Maybe this disease is an indication of God’s wrath and a sign that I should reject my lifestyle. My rational mind knows this is nonsense. But my vulnerable, neurotic side is not so sure. For the media, this disease is newsworthy, guaranteed to provide sensational headlines. It has everything a shonky tabloid journalist dreams of: sex, gays, prostitutes, drug users, moral outrage and innocent babies infected by blood transfusions. The government gets in on the act, too, with its prime-time AIDS awareness campaign screened on television in 1987. A faceless, hooded Grim Reaper bowls balls at a little girl in pigtails to convey the wake-up message that ‘AIDS is here’. As a positive person watching this, I feel like I am the Grim Reaper, the harbinger of disease, the agent of death. Unfinished business with my family has also come to the surface amongst all this madness in hospital. Perhaps the ‘police’ that stopped my family from visiting are a device my mind has invented to protect me from my fear of their rejection. My brother Alan has been visiting me regularly. But the fact that he has managed to break through the barricades does not register with my screwy mind. The rest of my family, most of whom live in northern Victoria, quite a distance away, have been contacting the hospital and enquiring about my welfare. And they’ve been told that I am not seriously ill. This is true in one sense because I 10
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have responded to the treatment. But they haven’t been told about the mental anguish I’ve been going through. Later, they’re upset to learn the truth. There is something cathartic about what has happened to me during this stay in hospital. I’ve heard others say that coming face to face with your own mortality can have this effect. You look with harsh, savage eyes at the life you are living and resolve to make the best of the time you have left, if you can be allowed the luxury of a few extra years to fulfil your plans. Around me, I see an urgency creep into the lives of friends once they have an AIDS diagnosis: they rush out and try to complete as many life projects as they can, before their health deteriorates. I’m not saying that I’m in a flat panic about imminent death as I leave Fairfield Hospital in February 1989. But I’m pondering my life, how I will adjust to this new illness. And how I will survive into the future.
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part one
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Chapter 1 A Secure Place
In early October 1982, I was celebrating my thirtieth birthday with some of the staff from the Publications Branch of the Victorian Education Department, where I worked. Ann James, one of the artists I worked with to produce colourful magazines for schoolchildren around the state, had made an ‘Over the Hill’ cake to mark our joint birthdays and the fact that it was all downhill from here. I reflected later that I was over the hill in a positive way. My thirtieth birthday was a milestone—I could confidently say that I was as happy and secure as I’d ever felt. I had a job that I adored and a supportive work environment, including a gay boss and a remarkably liberal bunch of fellow workers. I was a lot less neurotic than I had been during most of my twenties, when I was coming to terms with being gay, trying to find the right career, learning how to be a confident and successful individual. During my nervous, awkward adolescent years, I had spent much of my 15
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time avoiding bullies who wanted to bash me up or taunted me for being a ‘poof’. My family life was finally starting to sort itself out, after my parents’ divorce and the trauma of several nervous breakdowns suffered by my mother. My personal life had been relatively settled since the break-up of my first meaningful relationship. In late 1981 I had purchased a house in the inner-west suburb of Kensington. A large, fourbedroom Edwardian weatherboard, it was soon filled with friends looking for accommodation, and I was establishing what was to become a fairly close-knit and amiable household. There was something exhilarating about owning my own property. Along with the satisfaction of having a material asset that would hopefully help to give me some financial security, it was also good to establish my own roots and build the kind of security I once felt about my family home. I enjoyed the company of my housemates immensely. John Sharp was an incredibly funny, easygoing friend who I had met in a sharehouse in Kew after he had been picked up by one of my housemates. Danny Vadasz was my first-ever boyfriend, who I’d met in the mid-seventies. Like many of my ex-romantic partners he was now a good friend, and involved with me in gay politics, including the group that produced the activist newspaper, Gay Community News. How some gay men are able to form close, ongoing friendships with former lovers, without too much jealousy involved, surprised a lot of my heterosexual friends. But it often worked that way for me. Megan McDonald was someone I met through my work, when I visited the NSW School Magazine staff in Sydney. An incredibly tall woman with a deformed spine and overly large features, she had a condition called giantism, which affected her health and her confidence in public. She did look intimidating to 16
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people who had not met her before, but in the short time I worked with her, I saw that she was a charming, witty, highly intelligent and loyal individual who I could happily live with. She was coming to Melbourne in early 1982 to start a year’s placement with the magazine I worked on. When Megan turned up one morning to move in with us, she must have got a bit of a shock. I hadn’t told her that I was a gay man. As the doorbell rang, people ran everywhere to put their clothes on. John was entertaining his teacher boyfriend, Michael, visiting from Adelaide. I’d also had a visitor for the night, a train driver who I had picked up at the Laird Hotel in Collingwood. ‘Oh Megan, I forgot to mention that we’re all gay here,’ I spluttered out. ‘Yes, well, I’ve worked that much out,’ came her reply. The train driver left with a promise that whenever he was driving a train past our house, he would give a big toot to let us know he was thinking of us. It became a household joke that whenever a train tooted on its way past us, it was a reminder of Megan’s introduction to Melbourne. In many respects these three people, and my good friend Michael Chambers (a schoolteacher I had known from university days) were to become the basis of my social life for the next few years. We were always having people over for dinner or parties and occasionally the crew from GCN would meet to discuss upcoming issues. Our collective published this fairly dry but nonetheless substantial activist publication that had developed out of the National Homosexual Conference in Melbourne in 1979. The paper struggled to get a readership in Melbourne, with the gay scene much preferring the glossy bar rags that gave them lots of scene gossip and photos of young spunks out at the discos. 17
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One day in a GCN meeting, Adam Carr, one of the founders of the paper and a features contributor, pointed out a small article that had appeared in a gay newspaper in the USA. It was about a ‘fatal homosexual disease’ affecting gay men in New York. A small number of men had come down with this disease that devastated their immune systems and led to their deaths. Theories about the disease included the possibility of a link between the sexual stimulant amyl nitrate and a cancer called Kaposi’s sarcoma. There was little more information available and I guess most of us thought it was one of those isolated incidents you read in a news brief from time to time, one of those things that happens in a faroff place. I remember it set me wondering whether amyl nitrate really could be harmful. Amyl is a stimulant some people enjoy using during sex—‘the icing on the cake’, as one friend described it. It is often handed around on dancefloors to give people an added rush, to elevate their mood. In the early eighties the discos would often end up smelling like crushed ants by the end of the night. I was not rapt in it, as it made my heart flutter. And as for using it during sex, I always found it had a rather deflating effect. If it was found to cause a dreadful cancer, then thank goodness I was not sniffing it for hours on end every weekend. The stories about this fatal disease would not go away. We read more news bulletins at the GCN meetings, and began to realise there were serious implications for all of us, and not just a few gay men in New York and San Francisco. Nothing much about AIDS made the newspapers in Melbourne, although GCN did run an article by Adam in February 1982, which asked the question, ‘Will we all die of gay cancer?’ Adam wrote that while the cause of Kaposi’s sarcoma was not known, the possibility that it was sexually transmitted had some doctors in the US recom18
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mending gay men ‘reduce their sexual contacts and get the names of people they had sex with’. Gary Jaynes’ feature in the magazine in December 1982 reported that the virus was not restricted to gay men and had in fact been first noticed in a group of heterosexual men in Haiti. There was a rumour circulating that a person had been diagnosed with the disease in Melbourne as far back as 1981. There was much secrecy around this news, for fear of provoking a hysterical reaction in the gay community. No one ever really got to the bottom of that story. Even when the first Australian case was officially diagnosed, at St Vincent’s Hospital in Melbourne in May 1983, there was little palpable fear that the virus could actually be living with us in Melbourne, circulating through people’s bodies and beginning its work of destroying immune systems. No one had identified the route of transmission this virus took, if indeed it was a virus. A friend, John, reported that he had been asked to use a condom by a partner. He remarked on what a curious request this was. Why would a gay man want to have sex with a condom when everyone knew you couldn’t get pregnant from gay sex? He thought it was a huge joke but went ahead with the process anyway. He said it was fine, although he couldn’t come at using rubber for oral sex. The person he was having sex with, I was to find out several years later, was a man named Ian Goller. Ian was an immunologist who had been living in the USA for the previous few years, and he had theorised that the disease could be transmitted through sex. Hence his caution about sex and his use of condoms. Ian was later to play a major role in educating gay men and the wider community about safe sex and how to stop the transmission of HIV. He was to die from AIDS in 1993. He had already picked up the virus before he began to practise safe sex. 19
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In 1983 some gay community leaders felt concerned about the possible implications of this new disease, now called Gay Related Immune Deficiency (GRID). Members of the Alternative Life Style Foundation (ALSO), a gay community organisation, decided to call a public meeting at the Royal Dental Hospital Hall in July. My friends John Sharp and Michael Chambers accompanied me to the meeting. Michael and I wanted to go on a trip to the USA later in the year and we were interested to know if there was anything we could do to avoid picking up this thing. The room was packed with several hundred people chatting away happily. The relaxed attitude was shattered by the serious words of the doctors and community leaders assembled on the stage. Dr David Bradford, the director of the Communicable Diseases Centre in the city, spoke about what the medical profession knew. There was a strong line of thought that this condition was caused by a virus, and that it was probably transmitted by sex. An American tourist in Sydney had been recently diagnosed, as had an Australian man in Melbourne. We could no longer deny that this virus was amongst us. AIDS was here in Australia and it would only be a matter of time before we had friends affected by it. ‘If you are travelling to the United States,’ said one of the doctors, ‘you will need to restrict your sexual contacts. Maybe put off going until we are totally sure about how this thing is transmitted.’ Michael and I looked at each other with pained expressions, realising that we might have to cancel our trip. And we were also being told that perhaps we could pick this thing up quite easily. All this and no one really knew whether it was transmitted by a virus or a bacteria, or if there were other factors that affected the immune system. Something else unsettled the crowd that night. A well-known 20
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lesbian activist, Alison Thorne, got to the microphone during question time and made a statement that, while she was at no risk from AIDS herself, she and all gay and lesbian people were at risk from the homophobia that the AIDS scare would generate. ‘What are we going to do to protect the gay community from abuse and harassment as the AIDS hysteria becomes more and more out of control in the wider community?’ she asked. Others commented that this virus could destroy all the advances we had made in gaining acceptance and tolerance from mainstream society. We might be lucky to have a gay community at all, if no cure was found. I’m not sure that many people really believed in this doomsaying, but we were clearly in for a difficult path ahead. A psychologist, Bruce McNichol, spoke of the need for people to establish their own support networks to get them through the fear and hysteria likely to prevail. And those who were infected with the virus would need support from others. It was decided to hold another meeting in a month’s time, to set up an action group (a term very much in vogue in that activist period) to speak for the gay and lesbian community on all matters relating to AIDS. The group would try to control some of the expected backlash against the community and attempt to counter it with accurate information as it came to hand. The meeting, held on 12 July 1983, was held at the Laird O’Cockpen Hotel in Collingwood, my favourite cruising pub. It was a surprise to see that bar turned into a venue for a public meeting. A range of community activists, like Danny Vadasz, Adam Carr, Jamie Gardiner, Chris Gill and Phillip Carswell, put up their hands to be on the new Victorian AIDS Action Committee. Members from ALSO, including Peter Knight, Lee Visser and Gary Sauvarin, were also elected to the committee. 21
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I thought about putting my hand up when the time came for nominations but I held back. I was doing volunteer work for a new newspaper, OutRage, which was about to replace the old GCN. I also knew I had increasing responsibilities at work ahead of me. This decision meant that I missed being a part of the pioneering days of the Victorian AIDS Council. As events were to unfold, this probably had some benefits for me in the long term. I don’t think that I seriously considered the likelihood that I had come into contact with the virus. All the public meetings I attended, most of the articles I read, and in discussions with friends, the focus was on what to do when the virus eventually came to town. I ignored the possibility that it was already here. The reports in the media spoke of a very small number of infected Australians, and it was thought that they had been infected during time in the States. The idea that these individuals had been having sex since they returned, and that there were probably many people harbouring the virus, did not really figure in my thinking. The concept of a viral infection lying dormant didn’t fit with my experience of medical conditions. If I contracted a sexually transmitted disease, like gonorrhoea, the symptoms usually came on within days—and after a dose of antibiotics, they would go away. A blood test had picked up the fact that I had come into contact with Hepatitis B, but my immune system was strong enough to create antibodies that kept me asymptomatic. I felt strong and I was doing fine. Nothing could break the secure shell I had built around my life. I was still a reasonably young and healthy gay man who had good prospects for the future. There was a chance of promotion in my work, I was a home-owner, I had lots of wonderful, supportive friends, and I was sure that I would soon find the life partner I would settle down with, at long last. 22
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Chapter 2 Testing Times—1984
The lead-up to the Melbourne Cup and all its festivities gives people a lift, with lots of celebration, extroverted behaviour and dressing up to the nines. It’s one of my favourite times of year, which might explain why I was feeling in a buoyant mood when I walked to the Communicable Diseases Centre in William Street to get my test results. Innocence and trust had me walking into the clinic thinking about the lavish Cup party I had been invited to, and not the possibility of a positive result to the test I’d taken several weeks before. As a sexually active gay man, I had been accustomed to attending this clinic for check-ups and had ultimate confidence in my doctor. Many of my gay friends felt the same—a visit to the STD clinic was a part of your life if you indulged in a fair bit of casual sex. It was nothing to be ashamed of. The seventies and the era of gay liberation had taught us that our sexuality was no longer something to be reviled and hidden away—and we 23
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rejected the Victorian-era notion that having an STD was a blot on your morals or your reputation. And medicine provided an answer to the health problems we had. My doctor, David Bradford, pronounced, ‘David, I’m sorry to have to tell you this, but your test is positive.’ So much for my friends who claimed there was no way this virus had reached Melbourne yet. So much for my general practitioner, who had said several weeks earlier that the swollen glands in my armpits were probably the result of a transient infection, and that I didn’t need a test for this new virus. ‘What does that mean, do you think?’ I asked David, still not sure whether to be distressed by the news. ‘Well, we don’t know a lot about this virus yet. We’ve only just been able to test for it in your blood. At the moment we think it will be a bit like the hepatitises. Many people come into contact with Hepatitis B, for instance, and never actually develop the illness. They just carry the antibodies that protect them from ever getting sick. We think this might be the same case with HIV and AIDS. You may have one chance in ten of going on to develop full-blown AIDS. And most people will probably build their own resistance to it.’ One chance in ten, a 90 percent chance of not developing the illness: I can live with that, I thought. It wasn’t quite the same as walking out of the clinic with a handful of antibiotics to fix an STD. But I felt okay. I could learn to live with these odds and adapt to the fact that I was carrying the virus. What about friends with similar sexual histories to me? Would they be in the same boat? The test had only been available in Australia for a few months, and hardly any of my friends had chosen to be tested yet. Some were afraid to find out the result. And others couldn’t see the point. As one friend put it, 24
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‘What’s the value of knowing you’re positive? There are no treatments, it’s likely to cause you added stress, and who knows, you might suffer discrimination if people find out your status.’ I didn’t want to live in denial if I had come in contact with the virus. I had lived with the trauma of hiding my sexuality from my friends and family for so long that I was not prepared to go through the same process with this test. Coming out hadn’t led to seriously negative repercussions. Taking the open and honest path was the natural thing to do. I had to have the test. A counsellor at the clinic asked who I wanted to tell the news. I was about to reply that I was sure all my gay friends would support me, when he advised caution. ‘Even people in the gay community don’t understand much about this virus yet. Some people may harbour some real fears about catching it from you, whether that’s realistic or not. Think carefully about who you tell and how you handle it.’ It was finally starting to dawn on me. This was not news that would necessarily invite acceptance, understanding or compassion. This was not the same as revealing my sexuality. Even the gay community, my support base with whom I had developed my sexual identity over the past ten years, might not embrace this news. This was about disease, infection and death. There was no telling how people would react. Would I tell my workmates, who had been remarkably supportive about everything else in my life? I decided not to go back to work that day; I would think of an excuse to explain my time away. I had to go home and think. I wasn’t in a flat panic. Somehow I trusted my doctor’s prediction of a one-in-ten chance of getting sick; the optimist in me decided I could manage those odds. I was more concerned about being rejected or shunned by friends who couldn’t handle the news. 25
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My first test was telling housemates, John and Danny. Their response was supportive and comforting, as I had expected. I detected a slight look of fear on John’s face—perhaps he realised that if I was infected then he too might have a high chance of being positive. Danny was composed, as is his normal response to difficult situations, but he expressed surprise too. I guess none of us had really thought this virus would be amongst us so soon, despite knowing it must have crossed our borders by now, particularly through the entrenched Sydney–San Francisco connection. We had all heard of people getting sick and dying in Melbourne and Sydney, but most of the details of these people’s illness, and even their funerals, had been kept quiet, such was the concern of relatives and friends about the AIDS secret getting out. Then there was my workplace to consider. My workmates had become an essential part of my life. Any negative response there would have been devastating. My fellow editors on the student magazines had become confidants, and there were few secrets that hadn’t been shared during our tell-all afternoon tea sessions. Every sexual deviancy, every peccadillo that we had discovered in our lives, had been discussed at some stage and I would normally jump in and volunteer any new information which had entered my life. This was different. This was highly personal, traumatic news, both for me and my friends, and I had to think about the best way of breaking it. There had been the odd, half-jesting comment about catching HIV from coffee cups. Of course the joker knew I was in a high-risk group for HIV, and she might have wondered about the possibility of the virus being transmitted by me. I ultimately had confidence that my workmates would cope with this news in the same accepting manner that 26
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they had dealt with other aspects of my life. But the words of warning from the counsellor at the Communicable Diseases Centre stayed in the back of my mind. I talked to my own counsellor at some length about how I should approach telling my workmates. While I realised that they didn’t need to know about my status—I was certainly no health threat to them—I might need their trust and understanding if my health took a turn for the worse in the future. I decided to tell each member of staff one by one. I was in a middle-management role, with a small private office off the main floor. I asked each member of staff in for a private chat over a period of a few days. Despite my fears, it was a remarkably painless process, with each of the six staff offering me enormous support and showing only concern about my future welfare. Even one of the more conservative-minded members of staff, the one who had joked about coffee cups, did not harbour fears about transmission. She said she’d read articles on the subject recently and knew that it was not casually transmitted. Later, as events unfolded, I was to be incredibly glad that I had told everyone. In the meantime I found that my private chats had produced the desired effect: if there was any behind-the-scenes talk about my situation I was not aware of it. Taking my workmates into my confidence had strengthened my rapport with them. But not every revelation was to be so trouble-free. Walking down Little Collins Street during lunchtime one day, I ran into a friend I had not seen in a year or so. I wasn’t sure if he and his partner knew about my positive diagnosis, but I knew how quickly news travelled in relatively small gay community networks. After the usual greetings and chatter, I asked why I hadn’t seen them for so long. Perhaps we could arrange dinner some time. 27
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‘Well, David, we’re worried you might be infectious.’ My jaw nearly hit the pavement. How could two gay men I had been so close to, shared so many wonderful times with, be so cold and heartless towards me, and so ignorant about the facts on HIV transmission? Did they think they could catch it just from being in the same room as me? From the cutlery, from a toilet seat, or what? Sadly, I have never seen these men since, but hope they have come to terms with HIV. At this time I was a regular at the Laird Hotel and would meet up with friends and acquaintances on the weekends. One night I was standing in a group of about ten people—some knew me well, others hardly at all. There was a lull in the conversation when Neil, known for his acid tongue, asked me, ‘And how ARE you, David?’ The emphasis made it clear there was more to his question. ‘I’m fine, Neil. And yourself?’ ‘Oh, you know what I mean,’ came the reply. ‘I hear you’ve had THE TEST!’ ‘I don’t know what you’re talking about,’ said I, blushing crimson. Who in god’s name had told this vicious gossip that I had been for a HIV test and that I was positive? And how was I going to stop the rumourmongering now that it had been launched in such a public place as my regular favourite drinking hole? I had images that night as I went home of people discussing my status after I walked out. I imagined people saying, ‘ I won’t go near him in future’ or ‘Don’t have sex with him. He’s got AIDS.’ These were irrational fears in one sense, because life is never quite as black-and-white as your fears might have it. I wasn’t shunned in gay venues, or by most of my gay friends. But my fears were not so ridiculous given some of the horrible attitudes 28
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shown towards positive people in the media. In 1984 the Queensland Health Minister reported that four babies had been infected by the blood of a gay male donor. Too bad that the man had no idea he was positive and was only giving blood out of his sense of civic duty. Headlines like DIE, YOU DEVIATE! appeared in the Melbourne Truth, a scandal rag, but the story also got some biased coverage in the mainstream press. The climate was generally hostile in the broader community and there was a kind of uncertain fear exhibiting itself amongst the gay community. Gay men were starting to feel the barbs of a society that was treating all of us as likely AIDS carriers. An increasing sense of tolerance had been exhibited towards our community after law reforms were passed by the Victorian Parliament in 1981. This seemed to be a setback and caused resentment amongst some gay men. It is understandable, although hardly fair, that some gay men expressed anger against positive people. They saw this virus as a threat to their being accepted by the mainstream community. I was spared much of this anger, but I did hear accounts from positive friends of being openly shunned at bars, of individuals refusing to accept drinks from them. (Presumably because they thought they might catch the virus from the glass they’d handled.) One friend told me he had been with an openly positive man at the Laird one night and an angry man had walked up to him and poured a beer over his head, muttering something about how his type shouldn’t be drinking at the pub. At the beginning of 1986 I was not in such a positive frame of mind, even though I was receiving support from a number of close and constant friends. It was a time of great uncertainty around AIDS. My doctor’s early prediction that only one in ten people with HIV would develop AIDS had been clearly debunked. It was now thought more likely that all people with 29
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HIV would eventually develop AIDS. Even in downtown Melbourne we were starting to regularly see deaths and visible evidence of people getting sick. In many ways I hadn’t really thought much about the consequences of getting sick and even dying. My mortality seemed a less pressing concern than the possibility of rejection and isolation. I know this was not the case for a number of my friends, who lapsed into deep depression soon after their positive diagnosis, feeling bitter that their lives were to be cut short and that sickness and death seemed imminent. For them the real battle was about fighting for their life and standing up to the growing perception that AIDS was likely to be a death sentence. As one wry friend observed, telling some people they have AIDS is like pointing a bone and telling them they are about to die. Trying to challenge that notion and beating the negative thoughts that went with it was to be a very difficult task. I also started to be affected by these very real fears. When the people at my work learnt that a former colleague—Dave Sergeant, who had moved to Sydney—had come down with AIDS and had only months to live, our immediate circle was left shocked and distressed. While none of my workmates were tactless enough to say it, I’m sure a number of them were thinking, Will it be David’s turn next? Unsurprisingly, I was becoming increasingly nervous and neurotic about the consequences of living with this much-feared virus in my body and I soon realised that I would have to seek help to address these fears.
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Chapter 3 A Soulmate
What I had been missing most since discovering I was positive was a close friend who also had the virus. I had been stunned to find that very few friends who’d been tested had come back positive. I was beginning to feel like the odds of picking up HIV were a form of Russian roulette. For months there was no one to share the experience of the test and its aftermath; no one I could confide in about my fears and uncertainties. My housemates both tested negative. John in particular was surprised, having been a sexual adventurer with me in the seventies and eighties. He said he almost felt guilty that he had missed out, that I had been the unlucky one. I responded that he should forget about feeling guilty: I might well need the help of some sturdy, healthy friends in the future and I hoped dearly for his sake that he would stay uninfected. My isolation was considerably alleviated when my close friend Michael informed me in mid-1985 that he too was 31
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positive. He had noticed swollen lymph nodes under his arm over a period of several months and had known this was a possible sign of HIV infection. As soon as he discovered his results, he was around at my place with a bottle of Scotch and a cache of dope (or his therapeutic weed, as he called it) to commiserate and discuss what being positive was going to mean. I had met Michael some fifteen years before when we were staying at Warwillah, an Education Department hostel in Melbourne catering for student teachers. He was short and blond with a reasonably thick-set body. He always felt as if he was overweight: no amount of comments like ‘That’s the way you’re built, Michael’ ever seemed to help him get comfortable with his perfectly normal body shape. He seemed a bit of a prickly character to people on first meeting, and he had a notoriously bad temper. I loved his wicked humour as I got to know him over my student days. His mischievous sense of fun and love of food, for instance, often had him tracking down the hostel residents who had just returned from a weekend with their parents, loaded with supplies. Michael would always help unload them of their booty. In those student days, discovering our homosexuality was a shared experience that was to bond us for years to come, even though Michael was slower to come to terms with it all. He was part of a group of gay students that I came out to in the early seventies. Most of the others revealed how they, too, had hidden the truth of their sexuality. All except Michael. He must have wondered why he had become an integral part of our group. But he raced home to his mother and said, ‘Mum, what am I to do? All of my friends are gay!’ It wasn’t until several years later that he started to come out to gay bars with us and learn the ropes. He later said that it wasn’t his style to rush into making decisions. 32
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Michael’s approach to telling others about his HIV status was similar. When he turned up at my house that night to tell me his news, he was in a distressed state. Michael wasn’t so much concerned about whether he was about to die or get sick; he was worried about what would happen if others found out about his positive status. He was prepared to tell John and me, but we were not to tell anyone else until he had decided who was ‘safe’. He was particularly worried about the possibility of losing his job if anyone at the school where he taught was to get a hint that there was something awry with his health. ‘Would the Education Department be likely to sack me?’ he asked, with a pained look on his face. As someone also employed by the Department, I took the view that it would surely have to act with some compassion on the issue. ‘The government is going to have to take the lead in showing employers how to treat people with HIV/AIDS,’ I replied, knowing that the Equal Opportunity Act had recently been reviewed to outlaw discrimination against people with HIV/AIDS in the workplace. Michael and I were to take very different approaches to the issue of disclosure. Partly because I was fortunate to be in a supportive work environment, and partly because my nature is to be a little more up-front, I was much more open than Michael about being HIV-positive. There were few people in my circle of friends and at my workplace who were unaware of my situation. Unfortunately this was not the case for Michael. Whether his keeping the truth from a good number of his friends and most of his work colleagues added stress to his health is hard to say. Both Michael and I realised that we needed to meet other positive people somehow, to gain the reassurance that comes with numbers so we wouldn’t feel so alone with our 33
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predicament. In July 1986 I learned of a group that was being formed with the help of a counsellor I was seeing at the time, Eric Timewell. He had been helping an increasing number of positive clients and saw value in a group of positive people getting together to discuss their issues. The group called itself Melbourne Positive Friends. It met in the lounge room of a member’s St Kilda flat and was to become a regular meeting place on Thursday nights. The convenor of the group, Morden, acting under Eric’s advice, laid down some ground rules. Respecting people’s privacy was the golden rule. If anyone broke this rule, they would be asked to leave. Membership would be open only to gay positive men. This provoked a heated debate one night when a member asked why he couldn’t bring his negative partner. ‘Why can’t he be here to discuss these issues? He’s going through them as well.’ Another guy, also in a relationship, piped up. ‘I don’t want my partner here. There are things I don’t want him to hear, like how difficult it’s been living with the stress that I might infect him one day. I need some breathing space to get that stuff off my chest.’ Eventually it was decided to go with the positive-only policy but to have occasional social events when members could bring their partners. The issue of positive-only meetings was in some ways about bonding. We had a particular concern in common. It was not something that we felt many others could ever really understand, whether they were partners or not. If you didn’t have the virus, the fear and uncertainty that we had faced on diagnosis (or soon after) could not really be understood—or felt as deeply. This bonding was an incredibly powerful feeling for many in the group. Positive Friends was our once-a-week debriefing session, where we could keep each other up to date 34
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with the latest treatment news we had heard on the grapevine, and support each other through periods of anxiety and depression. We organised weekends away to the country and the beach. We held social nights when we put on silly plays that gave us a laugh or two. We ran special dinners for people’s birthdays and we had a good time. The obvious was going to happen sooner or later. People started to become ill around six months after the group began. It should have been something we were expecting, that we had prepared for mentally, but when it happened it had a devastating effect. Maybe most of us were in a form of denial, but I remember having a discussion one night early in the group’s life when we talked about what we would do if somebody developed AIDS. ‘They will have to go to another group. Or maybe they’ll be too ill to come along anyway,’ said one guy in a manner which sounds incredibly callous on reflection but which seemed quite sensible to us at the time. We all felt pretty well and there were no visible signs of health problems amongst us, although a couple of people had lost weight. It was difficult to envisage a rapid turnaround in someone’s health until we came face to face with it. We didn’t realise how ridiculous our rule was until quite a number of us developed AIDS. Our rigid position was immediately discarded as we responded with compassion and support to friends now in serious trouble. Paul was the first to get sick. A member of a very religious family that had not coped well with his diagnosis, he had been depressed about his health for much of his time in the group. There was no doubt that the reaction of his family had played a major role in his general discomfort. I remember having a quiet 35
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chat with him one night. ‘My family doesn’t like it, society doesn’t like us. It’s a pretty hard place to be in. I’m not sure if I can cope if I get too sick.’ He died suddenly, after a couple of days’ hospitalisation with PCP. His condition had been undiagnosed for several weeks, as few of us knew the telltale signs that distinguish a bad cold from a bout of PCP. Paul’s funeral was a reality check for our group. An individual who had been chatting comfortably enough with us on the couch at a meeting only a month before was now dead. We were learning about the devastating speed with which this virus could strike. Inevitably, as we filed into the church in the southern suburbs, we were thinking about who amongst us would be next. The service hardly helped to soothe our gloomy, depressed mood. The relatives had cordoned off a part of the church for Paul’s ‘other friends’, right at the back, as if we were to be ‘out of sight, out of mind’. No one greeted us or spoke to us: if we were not known as a close family friend, we were shepherded into this roped-off area. The minister seemed almost as embarrassed as the family, who sat at the front of the church clearly wishing for the agony of the experience to be over. No mention was made by the minister of Paul’s disease, or much at all about his life beyond his schooldays. Clearly his life as a gay man, his illness and his last days were not to be referred to. Paul’s memory lived painfully with us as a group for some time afterwards. Not only because he was the first death in the group but because we felt cheated by his relatives. They hadn’t celebrated his life in an affirming way at his funeral service and had not given us the closure that more magnanimous and compassionate people might have seen fit to do. 36
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One night in mid-1987 the group was watching television— the last episode of Dallas, which we couldn’t resist turning on—and the Grim Reaper AIDS commercial came on the screen. As Darth Vader hurled bowling balls, the message ‘AIDS could affect every one of us’ boomed out of the TV. People felt that the Grim Reaper image, while incredibly effective in scaring people out of their wits, was not going to make life easier for positive people. ‘People are going to think we’re the Grim Reaper,’ one person commented. ‘It really makes me feel like I’m something that people have to watch out for. I’m the carrier of this disease,’ said another. AIDS featured in the media on an almost daily basis. Group members would make light of it at weekly meetings, calling each other ‘tragic victims’ or ‘diseased pariahs’ to try to reclaim some of the language being used so thoughtlessly by reporters. We started to look closely at some of the more sensationalistic reporting and to laugh at its melodramatic language and slanted tone. But this was a defence mechanism and we soon tired of it. It seemed far better to try to ignore this hostility and get on with enjoying each other’s company. Underneath, I think this ‘shock! horror!’ approach to AIDS did affect us quite deeply. I know the feelings of being stigmatised, and of being infectious, remained buried in my subconscious no matter how hard I tried to remove them with rational thoughts. The main issue on the agenda with my counsellor in our weekly meetings was this stigma—how it affected my feelings of sexual attractiveness and even my social confidence when I was with people who did not know about my status. I was glad when Michael started to come along to Thursday night’s meetings after I convinced him that the group took the issue of confidentiality seriously. I felt he needed to release the 37
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tension that built up after he chose to conceal his status. ‘They’re in the same boat as you,’ I said to Michael, ‘and there’s a few cuties in the group as well. You might get lucky.’ I said this quite seriously, as the issue of sexual relations with others had become vexed for us both. Many members of the group had had similar experiences to me at gay venues around town when the subject of having sex with a positive guy had entered the conversation. Almost as if no member of the conversational group could possibly be HIVpositive, individuals would talk about what they would do if they found out a sex partner was positive. ‘I’d go to the police’ or ‘I’d throw him out and make sure everyone knows he’s got it’ were some of the lines. The prospect of meeting someone who would react calmly and comfortably if you told them about your status seemed increasingly remote. The only safe option seemed to be to look for a positive sex partner. And the one place that presented such an opportunity was a group specifically for positive guys. Not that I ever did very well for myself in that respect. I had a one-night stand with a very flighty young student who was doing a grand tour of Australia, trying to find himself after the trauma of his diagnosis. From Perth, he’d landed in Melbourne for a few months before heading off to the real Big Smoke or Sin City, as gay men referred to Sydney. He was escaping from the painful realities the virus presented and looking for a new start in a shortened life. Others in the group did form incredibly close and loving partnerships with people they met in the group and in one case, with convenor Morden and a young guy called Michael, their partnership lasted for the duration of the group—until their deaths in 1996, several months apart. I would have loved to have the support that a close, loving relationship could have offered through such difficult times. I did 38
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have a soulmate in Michael and a good number of supportive friends who were prepared to hold my hand and listen when I let down my guard late at night after a few drinks, confessing the real fears I had about my prognosis. News from America about treatment breakthroughs was thin on the ground until the drug AZT (Zidovudine) burst on the scene with much hype in 1988. It was a gloomy period, with deaths rapidly increasing. The AIDS Council care teams drummed up volunteers to deal with the crisis, as people were now starting to call it. Melbourne Positive Friends had helped me to share some of my thoughts and fears about having the virus and to realise that I was certainly not on my own with this struggle. I had made a lot of new friends, but that really wasn’t enough. I was starting to realise that some of the ‘grand picture’ I had in the back of my mind—the deep and heartfelt yearnings I had always carried inside, about the way my life should pan out—might not happen. I saw bitterness in other positive people who would come into the group crestfallen that their health or their youth had been suddenly snatched away from them. For some the focus was on the pain and suffering they were likely to go through. For others it was about the unfairness of not being allowed to fulfil their lifelong dreams. A surprising number, and I include myself here, were more focused on the immediate challenge to our sex lives. I don’t believe this was a particularly facile response—it was as much about wanting to attract a partner to share the journey. We were concerned that likely partners would reject us as soon as they knew we were positive and that a lonely life without intimacy was a possible future. The gay scene has always been remarkably competitive when 39
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it comes to sexual attractiveness, and the threat of illness and physical deterioration hanging over our heads seemed too much to bear. It was not just about vanity and looking good. It was about being a valued commodity in the sexual marketplace. For some positive people, the physical changes they had seen in others (the thinning limbs, the sunken cheeks and wispy hair) haunted them and fuelled their fears. An incident in mid-1985 helped sap my confidence. It showed me how difficult it was going to be to find a partner. It was a regular night at the Laird Hotel and I was in a good mood after hearing some encouraginng news about a promotion at work. After a number of years vying for a senior editor’s job, I had been confirmed in my role in charge of a magazine for middle primary students, called Explore. The position was the equivalent of a senior teacher’s position. After all those years of doing what comes naturally in the pick-up game, all of a sudden I was nervous about sexual encounters. Needless to say, this was about the uncertainty of disclosing my status in this new unpredictable climate. If I suppressed my anxiety and engaged in the usual late-night eye games, I usually got one or two responses. A guy in his midthirties—what some might call ‘straight acting’, with the look of a young suburban dad—caught my eye. He was not wearing the standard flannelette shirt, moustache and faded blue jeans. I guess I hoped he might be a bit more down to earth and sincere. He was incredibly approachable and had his hand around my back within a minute of me introducing myself. A fast mover. I sure didn’t have him worked out! He was drinking spirits and asked if I’d like one. ‘Sure, a gin and tonic for me.’ He turned out to have a pad in Carlton, a comfortable Victorian terrace loaded with antiques and original artworks. 40
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Make someone a good husband, I thought, as I rolled back on his Chesterfield couch. He was attractive and amorous and we got down to business without much conversation, until I suddenly had to stop him. I just had to tell him that I was positive. I’m not sure why, as I’d had sex with a number of people without saying anything—assuring myself that as I was having safe sex, I wasn’t putting them at risk. This guy seemed warm and accepting, incredibly easygoing, and I thought I’d be able to have guilt-free sex with someone for a change, if they knew and accepted me for who I was. This guy jumped back off the couch and froze. He thought for a minute, trying to compose himself for a response. This was just too much information. Why hadn’t I told him this before? Why hadn’t I told him before he’d bought me my first gin? ‘Oh yeah, sure,’ I replied, incensed. ‘Hello, my name is David and I’m positive. Is that what I should have done? Why does it make any difference? I would have made sure we’d had safe sex anyway, but I guess that’s out of the question now?’ ‘Well yes, this does make things different,’ he replied, waving me towards the door. ‘I’m not prepared to risk it.’ I know this was only one negative experience. But it hurt me and jolted my confidence considerably. I had made the effort to be honest and been rejected. There was always going to be the fear that it would happen again. The search for a partner who could handle my status was not going to be easy. I was grateful that at least I had good friends like Michael and the people at Positive Friends, who would understand how it felt to be rejected by a sexual partner because of my status.
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Just when I thought it couldn’t happen, a relationship whirlwind came along and turned my life on its head—for a little over a year. His name was Billy, a tough and stocky ‘Broady boy’, as he called himself, after the working-class suburb of Broadmeadows. I have been always attracted to boys that my middle-class friends would say were ‘from the wrong side of the tracks’, and it isn’t just because they have a more masculine way about them. I am a country boy myself, brought up in a fairly rough rural environment, and while I could hardly match the rough and tumble energy of my high school peers, I was attracted to them. They had after all taught me the little I knew about sex as I listened to their dirty stories during woodwork class. Billy was a curious mixture of rough and camp, I was to discover as our relationship progressed. He told me that, in his adolescence, he used to ride the trains at night from Broadmeadows to the Fitzroy Gardens where he and a couple of hoonish friends would bash gay men doing the well-known beat there. ‘We wouldn’t rough them up too much: just enough to give ’em a scare,’ he’d say, without a trace of guilt or shame. He had decided this was a part of his misspent youth that he didn’t want to dwell on. He had grown up since then, and acknowledged that the bashing was part of his desire to be around gay men in some way; the culture he came from made it very difficult to be introduced to the gay scene and he was struggling to come to terms with his sexuality. Billy was introduced to the gay scene in an awkward way, through a lawyer who had taken him as a lover. The lawyer regarded it as his lot to ‘sophisticate’ this young roughnut from Broady and teach him the finer things in life—as if Billy was his Eliza Doolittle and they were living on the set of My Fair Lady. Whenever Billy decided that he was dealing with someone with 42
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an education, he would put on a toffy accent that I gather his former lover had encouraged him to adopt in polite company. I much preferred his real voice, which you only got to hear after you got to know him—or in my case, after I’d slept with him a few times. Early in the piece Billy and I had to have a discussion about safe sex. His response when I told him I was HIV-positive was totally unexpected. ‘Oh, that doesn’t matter,’ he said. ‘I’m a Hep B carrier. If you can handle my Hep B, I can handle your HIV.’ ‘Yes, but I’ve got antibodies to Hepatitis B. I can’t catch it from you. You can catch HIV from me and I couldn’t live with myself if you did.’ ‘Forget about it. I’m not using condoms and that’s that.’ I’m not sure why I let him get away with that dangerous statement. For twelve months we had unsafe sex and condoms were never mentioned. As someone who was then very much aware of the need for safe sex, I still don’t understand how I could live with my conscience in doing such a stupid thing. In some ways, on reflection, I think the full import of the safe sex message had not hit me. Maybe, I reasoned to myself, Billy wouldn’t catch it because he was always the active partner in penetrative sex and therefore not at such a high risk. As research was to reveal several years later, the risk for an active partner is considerably lower than for the passive partner, but the risk is still there. I have since met plenty of positive gay men who have only ever played the ‘top’ role and who have become infected. Fortunately for Billy and me, he was to test negative several times during our relationship and several months after we broke up. It was a close call and I would hope that, given the grief and angst I have been through over the loss of friends since, I would never be so silly again. 43
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My relationship with Billy was like being caught up in a whirlpool, an eddy of events and emotions over which I had no control. For starters an edict was announced by Billy very early on. ‘The weekends are mine. You can do what you like during the weeks, as long as you’re not having sex with anyone else, but the weekends have to be for me.’ ‘What about my friends, my life before I met you? Don’t they get a look-in?’ ‘We’ll see,’ was the tightly clenched reply. Why did I allow this man to give orders like a little military sergeant and, as his willing private slave, agree to anything he said? Well, of course, there was his charm and the domineering side of his personality, which had me attracted to him in the first place. But we were not going to be playing the sadomasochistic sex games of master/slave or daddy/boy that I’d seen other gay couples do as part of their sexual repertoire. I guess I just enjoyed being told what to do—some of the time. After a week at work giving orders to my staff, maybe I liked the turnaround of roles. Maybe I accepted it because I knew he was organising my life in ways that were ultimately for my own good, in the material sense at least. My house in Kensington needed some renovations and Billy offered his not-so-expert advice on what should be done. ‘This wall needs to come down,’ he said, pointing to a wall in the kitchen. ‘We need to take it down to let some light in.’ I didn’t disagree but was worried about how difficult it might be to heat such a large open space. ‘I’ll get a builder in to talk about the options,’ I said, and left to go down the street for some groceries. I returned not half an hour later and the wall was lying on the floor in the middle of the kitchen. ‘Billy, how could you?’ I 44
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said, in a fit of rage. ‘It’s a wonder the whole wall didn’t come down on top of you.’ ‘Oh no. I sorted out that it wasn’t a load-bearing wall. See how much light it’s let in?’ What do you do with a boyfriend who rips your house down when you step out for a bottle of milk? We both ended up rolling around the floor, laughing at the absurdity, but it was not the brightest idea in the world. The house was never warm again after that afternoon’s renovation, and without the funds to afford a new central-heating unit, our household was to spend a few chilly winters. My relationship ‘episode’ with Billy—and it was never to be a long-term coupling—had many more unpredictable moments but none more amazing than the little surprise he sprang on me one night at the Duke Hotel in Abbotsford. I was going to get the shock of my life, he said. I would meet someone that night who would completely knock me over. I was to turn up at the bar about 9 pm on Saturday night. He would be there to meet me. Billy’s brother Gary worked in theatre and I wondered if Billy had arranged for an acquaintance of Gary’s, a theatre star, to meet us at the bar. It was something Billy would do, such was his pride at having a brother who was part of the glitzy world of the stage. Nine o’clock arrived and I was bar side, squeezed amongst the thronging crowd, waiting for Billy to show. Nine-fifteen, nine-thirty—I’m getting annoyed. Suddenly the music starts up, followed by an announcement over the mike: ‘It’s showtime at the Duke. Tonight we have a new duo to entertain you, the Twisted Sisters.’ There was Billy, wrapped in the tightest corset possible, wearing an incredibly tight silver lamé-number and a neat little 45
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brunette wig. He was a little plump in real life and balding, so the transformation was remarkable. His partner in crime was a good mate who had done drag several times before. I suppose I shouldn’t have been all that surprised that Billy would be tempted into the limelight. He did run a fabric shop in the city, where drag queens regularly dropped in for their latest frock supplies. At the end of the number Billy dismounted the bar to riotous applause and walked straight up to me, gave me a kiss and put his hands around my waist. The whole bar was staring at us and I was hugging this very unfamiliar, squashed-in body that seemed ready to burst out of its prison. My boyfriend, the drag queen. The butch drag queen, what’s more. Billy was not interested in exploring his feminine side or even playing the role of a woman for the night. He was not really on stage to wow people as a drag queen. He was up there to perform, to show people that he could twirl and mime and capture their attention like the best of them. He could be a star like his brother’s stage friends, and we would applaud and love him for it. Which we did, kind of. After a year I finally had enough of Billy’s rule over my life. There was an element of tyranny creeping into the orders about what we could do on the weekends and with whom. I finally snapped, returned his friendship bracelet and ring, and moved on. It was an important interlude in my life. Billy gave me the confidence that I could be loved and cared for, regardless of the HIV nightmare. For much of my year with Billy, HIV was rarely mentioned, and for better or worse it was not a factor in our sexual relationship. It was like being normal again, in a refreshing and uncomplicated way. I have to thank him for that because nothing enduring was to happen in my sexual relationships for quite some time afterwards. 46
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Chapter 4 Panic
It was 26 January 1988. I was lying on an expanse of lawn at Lavender Bay in Sydney, looking over a sea of people to a flotilla of boats gathering under the Harbour Bridge. A group of us from Melbourne had come up to witness the arrival of the tall ships that afternoon and the night-time fireworks display that was going to be launched from the bridge. It was part of Australia’s Bicentennial celebration and it seemed that millions had converged on Sydney to celebrate. Maybe it had something to do with attending a 200-year celebration, but I was thinking in big-picture terms—thinking about my previous 35 years, my achievements, the highs and the lows. Would this amazing scene before me be a high point in my life? Would I get to see the turn of the century? Would I even get to reach the milestone of 40 years, in four years’ time? It did not seem likely as my recent blood results now had me below the dangerous T-cell marker of 200. Only a month before, my doctor had informed me that my T-cell count had suddenly dropped 47
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from a relatively healthy 400 only six months previously. He tried to reassure me that things would be okay. ‘There’s a new drug being trialled in the States,’ he said. ‘It’s called AZT and we’re hoping it will be available in Australia soon. There are talks going on with the government about funding a small number of patients to go on it. Because your counts are below 200, you would qualify. I’m going to see if we can get you in.’ There had been no treatments whatsoever to that date. I had been put on a prophylactic drug called Dapsone, normally used for malaria patients, to try to prevent me from developing the most common AIDS-defining illness, PCP. Friends had been trying a range of alternative therapies, often with a desperate zeal. I helped a friend, Tony Crawford, brew up a recipe from Israel called AL-72, which was said to have immune-boosting properties that would lift people’s T-cell count. It didn’t work and neither did the myriad other ‘miracle cures’ suggested over the years, ranging from shark cartilage to the bitter-melon fruit that, amazingly, people had to insert as an enema. The only alternative regimen that seemed to have some success was the macrobiotic diet. A wealthy friend in Melbourne, John Marriott, followed a rigorous daily routine that involved making juices, eating an extremely restricted diet of special foods and ingesting every immune-enhancing vitamin and mineral he could lay his hands on. He was living a relatively normal, healthy life, despite being diagnosed with the AIDS-related cancer Kaposi’s sarcoma several years before. He was an exception though, and few people, including myself, could afford this array of treatments or manage the discipline required to follow macrobiotics. The accumulated grief of the previous few years had started 48
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to take its toll on me. By 1988 I had been to over twenty funerals, including six from Melbourne Positive Friends. Often people became sick and died so quickly that you hardly had time to factor in the reality that they had gone. Others had frequent stays in hospital and it became difficult to know what to say to them after the illnesses just kept on coming. Was it worth putting on a brave face and saying that things will be all right? Or better to talk about the reality of the situation: they were dying. Some, the braver ones maybe, did want to talk like that, to really come to terms with what was happening to them and the effect their death would have on friends and family. It was probably just as bad, if not worse, for those AIDS Council carers who looked after one dying person after another. At least some of us with the virus had support groups where we could regularly debrief. Not that I think any of us really knew how to deal with this kind of unrelenting grief. I was feeling very vulnerable while I lay there watching the tall ships. This was a special moment, but how many other special moments would I have in my life? I had been confident that I would avoid developing AIDS, thinking I would be one of those who would keep doing fine, without any symptoms. But my lowered T-cell count had shocked me, as did the realisation that I was now in the danger zone to pick up PCP. The symptoms for PCP are shortness of breath, raised temperatures and night sweats. I’d had a night sweat the night before (forgetting the fact that it was a particularly hot and humid night) and I had a sneaking feeling that I was developing breathlessness, not that the hills around Lavender Bay aren’t enough to make anyone breathless. I’m not sure that Michael, who lay on the grass beside me, was too impressed with me introducing a note of panic into the celebration. 49
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‘Michael, I think I’m developing PCP.’ ‘Rubbish, your breathing’s fine.’ ‘But I had a night sweat last night. And I’ve been breathless walking here today.’ ‘Stop panicking. If anything happens we can get you to hospital here. Relax and get over it.’ I was obsessed though. Even during the night’s unbelievable fireworks display, I was convinced there was something wrong and that my life was going to take a much more serious turn from here on in. At one stage, with my friends John, Michael and Megan lighting sparklers, I was having a weep to myself. A few days later I talked Michael into driving me back to Melbourne a day earlier than we’d planned. I wanted to be checked out at Fairfield Hospital because I was certain I was developing PCP. This would be my first hospitalisation in the famous AIDS ward that I had visited many times to see sick friends. I had always hoped I would avoid it myself. It was a welcoming environment, with nurses taking time to get to know me. A special camaraderie existed between the doctors, nurses and patients. The hospital was a series of rambling brick buildings built at the turn of the century. Ward 4, where I was spending time, was a series of single-room wards with a balcony view over beautiful, manicured gardens. Peacocks strutted the grounds. It was a particularly restful environment. In the past, people with diseases like tuberculosis or polio had spent many months recuperating in its gracious surrounds. My fears were soon allayed. I did not have PCP. I was quite healthy in fact. The experience gave me mixed feelings. I felt reassured that if I did get sick, the standard of care would be high. But there were numerous faces I knew in the wards. Most 50
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people had skeletal frames and pallid, sunken faces. One friend, Mark, a highly trained doctor working in AIDS research, stopped me in the corridor to talk. His work had not found the answers to save his own health. ‘Trust me to end up researching my own disease, frantically trying to find a cure. It doesn’t look like I’m going to be around to see any success.’ He was to die a few months later, followed shortly afterwards by his partner, another Michael, who was a good friend of mine too. In the world of fleeting gay relationships that I had been a part of, I’d had a short affair with Michael. There was a bond between the three of us and it was about to be broken with an obscene rapidity. Once you got to the stage of requiring a wheelchair to get around the hospital, it meant that things were looking very grim. And unless I kept a close eye on things, friends would be gone before I could see them again.
It was a terrible irony that Michael, my dearest friend, who had rightly told me to stop panicking about having PCP, would develop the disease only a few months afterwards. Michael had probably been going through the same doubt and speculation as me. He had just been doing his best to not show it. The reality of getting sick was something you attempted to dismiss as you tried to get on with life. Michael seemed to have convinced himself that he didn’t need to make any particular concessions to the business of living with HIV. The best advice that doctors and allied health experts could give us, in the absence of treatments, was to eat well, to give ourselves extra reserves for when the virus started to take hold. Michael, who had spent much of his life battling weight gain, had finally 51
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become svelte and he was not going to give up that achievement because his HIV doctor thought it advisable. Dieting was still on his agenda, and giving up cigarettes was not a wise thing to do either, given the weight gain that followed. He started on AZT in about July 1988, several months after his doctor had recommended it and only after his T-cells had got to a low of 100, very much around the danger zone for opportunistic illnesses. It was too late for him to benefit from the drug. A month later he was hospitalised with PCP. Greg, one of my close friends since university, and his partner Paul, Varna and myself rallied around to help Michael keep the pieces together in his life. He was to be a difficult patient, grumpy and demanding during his bouts of illnesses, but with a dry, sardonic sense of humour that allowed us to have a laugh with him occasionally and relieve the tension. After his hospitalisation in Fairfield it was clear that he could not live on his own any longer. He had lost huge amounts of weight from an already lean frame, he could only walk with a stick, and he was in no state to look after himself. The fiercely independent Michael gave in with little fight and moved in with Greg and Paul in their large and cosy house in Malvern. There was a look of trepidation on Greg’s face as the decision was made. It was a necessary move given the circumstances, but he knew that Michael was a volatile housemate at times, and this next period was probably not going to be all smooth sailing. How right he was. Michael, suffering the indignity of being weakened in mind and spirit, and the chronic misery that often went with the illness, found it difficult to be diplomatic or accommodating about his new living environment. Until his strength returned, after bouts of different illnesses he endured over the next few months, he was hard to get on with. Greg, a particularly 52
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house-proud individual, would regularly be affronted by Michael’s comments on aspects of the household that he thought should be changed to suit his tastes. His memory was often poor, a symptom of the state of his health, and he would regularly throw small tantrums when the right brand of cereal did not present itself to him for his breakfast. ‘I told you yesterday that I hate Weetbix and I want Corn Flakes,’ protested Michael on a typical day. Relating this story to me, Greg said that the same scene had occurred the previous day, with the brand names reversed. It was impossible to keep up with the changing demands and after six months Greg and Paul asked friends if they could provide some respite and accommodate Michael for a while. A number of options were advanced including his moving in with Varna in East Malvern. Her flat was on the top floor and had treacherous iron stairs that Michael would certainly not be able to climb on his own. Michael’s family lived on the Mornington Peninsula, some 80 kilometres south of Melbourne, and couldn’t get him to the regular treatments he needed at Fairfield Hospital. Despite friends’ concerns about my own health, I offered him the spare room in my house. It was the end of 1988 and my own health had started a slow process of decline. I had not suffered an AIDS-defining illness like Michael, but I was losing weight consistently and my T-cells had dropped from 200 in February to around 60 at the end of the year. AZT had failed to prevent deterioration in my immune system, as it had failed Michael. I suffered severely from its toxic side-effects at first, feeling nauseous and enervated for several months before my system gradually got used to the drug. We had been instructed to take the drug every four hours without fail, which involved waking up at 4 am to shove down a couple 53
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of nasty pills with water. This alone upset our sleep patterns and made the business of getting a regular night’s sleep nigh on impossible. A year later scientists were to discover that the four-hourly doses were not necessary and he regimen became manageable. They also discovered that the dosage could be effectively halved. Individuals like Michael and myself who endured this toxic period were arguably made more ill because of this confusion. My work had not been without its stresses, as the interminable cycle of job restructuring that seems to occur in the public service was in full swing in late ’88. I was fortunate to have had my position as manager of the student publications unit confirmed earlier in the year but now I had to sit on selection panels to appoint staff. Staffing decisions are without a doubt the greatest source of conflict and trauma that can occur in a workplace. Most of the staff in our area, including myself, were officially classified as teachers. If our period of appointment in this central office environment was to come to an end, we were to report back to a teaching post. Many of us had not been in a classroom teaching for over ten years. To send individuals who had developed their skills in publications back to the chalkface was difficult and provoked howls of protest and some fairly nasty scenes from some of the disaffected. The rule of ‘select the best person for the job’ might be something that all selection panels should work on, but it is not so easy when you know the people you are interviewing well and regard them as personal friends. Faced with a couple of bright new talents who seemed likely to inject new energy into our magazines, the selection panel made some hard decisions and displaced a couple of people. When the news got out, I was hit with the combined wrath of two people—for not just one day or 54
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one week, but for a total of three months. One refused to speak to me at all for this period, conveying notes or messages via others. They began ‘go slow’ or uncooperative work schemes that made my life hell, given I was responsible for meeting deadlines. I mention this not because it is particularly unusual in the scheme of things but because it did place an enormous strain on my health. I knew that my energy levels were getting lower because I found myself falling asleep on my desk or rushing off to the sickbay to catch a nap during lunch. I found myself unable to go out much socially and virtually gave up the pleasures of alcohol as my treatments didn’t agree with it. As a result, probably, I also had little opportunity for sex or intimacy. The issue of telling my family about my status was also playing on my mind. I didn’t know that I was about to get sick, but I felt the need of their reassurance and support. I’m not sure what my mother thought about my weight loss on my visits home to the country but she had an idea that something was awry. She had met Michael at my place in October and she could tell from his frailty that he was very ill. On this visit home Mum asked if Michael had AIDS and I said yes. Perhaps this was the opportunity I had been waiting for, to tell Mum that I was gay and that I had HIV. Her next comment stopped that idea in its tracks. ‘I don’t think you should be mixing with those types of people,’ she said. ‘It could be dangerous. You could end up with the same thing.’ Oh dear. I had to work on this situation a bit. All my life I have known my mother to be a highly compassionate, Christian woman who would help anyone in trouble. She had been a warm, tender and loving mother who had always been there for me through all of my childhood predicaments and I loved her 55
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dearly. So why did she say something like that about Michael, who was obviously in need of enormous support? Shouldn’t she admire me for looking after someone who had AIDS? It was to be months before I was to sort through these fears and misunderstandings. Likewise I could not tell my sisters the truth because I feared a similar lack of understanding about sexuality and AIDS, and from my brothers-in-law in particular. While I had developed a new relationship with my father after his divorce from Mum many years before, I was not ready to tackle this sensitive detail with him just yet. My three brothers were a different story. They were all city-based and knew that I was a gay man. I had told them one by one that I was HIVpositive, and they handled it well. For some reason they had not shared this with the rest of the family. Michael moved in after Christmas and I soon found myself completely out of my depth, caring for someone with an advanced illness. He was forgetful and would leave the gas on without lighting it. I needed to watch his moves closely for his personal safety. He was sleeping poorly and would wander around in the dark without knowing where he was going or what he was doing. His doctors were later to confirm a level of cognitive impairment in Michael, a condition common in people with advanced AIDS and which usually leads to AIDS-related dementia if the patient lives long enough. He was working hard not to be crabby with me, but the strain of trying to be nice was almost too much to bear. Michael had a bitchy side that his friends had come to love: he was the master of a good putdown (a skill many gay men learn only too well) and he was in his element when someone responded in kind. But illness, as I was later to discover myself, makes you less able to manage aspects of your personality—your wit, your sense 56
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of humour and your spontaneity. What might start out as a joke becomes a personal slight. You don’t know how to continue your normal repartee because your brain and your body don’t always coordinate to bring it off. I tried to bear the brunt of the criticisms that came my way during this period but we had our tiffs and it was a tense time for both of us. When I arrived home from work one afternoon in early January 1989, I called for Michael but got no response. I found him lying on the back terrace. He had fallen off the banana lounge and was unable to get back up. He was dazed but not unconscious and couldn’t tell me how long he’d been on the ground. He’d had a couple of episodes like this in the past and it was clear to me that we couldn’t leave him alone for long periods any more. I made efforts to organise home nursing and for the AIDS Council to organise a care team of volunteers to drop by during the day. Unfortunately, these things couldn’t be organised quickly. I decided that I would have to take time off work to look after Michael until the necessary arrangements were in place. I was angry that support wasn’t available when we needed it. I was tense about the responsibility of looking after Michael— maybe he needed more proficient care than I could give. Work had been a kind of respite from the care situation and now I didn’t have that break during the day. On Australia Day I woke with severe back pains after a restless night’s sleep and a couple of heavy night sweats. I’d had these occasionally over the past year and wasn’t too concerned about them. My backache, I thought, was probably from sleeping on an unfamiliar bed, as I had given Michael my bed. As the day progressed, I realised there was something wrong. I was developing a hacking cough and had no energy to do even the 57
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slightest task. I rang my doctor, Dr David Bradford, who immediately organised for me to be admitted to Fairfield Hospital for tests. It looked likely, with a T-cell count below twenty, that I had PCP. Arrangements had to be made for someone to look after Michael. Varna stepped in. She would get around the stairs problem somehow, if she had to carry him herself. It was not for me to worry about, as I had to concentrate on looking after myself. It’s hard to know if the stresses of the last few months—the dramas at my workplace and the worry of caring for Michael— contributed to me developing an AIDS-defining illness. And it doesn’t matter to me in the slightest. One can never put an exact calculation on these things, and no one with a health risk can completely avoid stress. I was glad to help look after Michael and the time we spent together was incredibly precious, as these were to be the last months of his life. My own life was in turmoil. I was to go through some of the trauma that Michael and many of my friends had experienced when they were diagnosed with PCP.
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Chapter 5 Turmoil
My time in Fairfield Hospital was undoubtedly the most traumatic of my life. The only trauma that compared was a three-day trip on LSD that I took in my university days, when some of my hallucinations threatened my sanity. As I went through the process of recovery I was desperate to explain why this experience had been so intense and frightening. Many of my friends had developed AIDS without this terrible confusion and I wanted to know what it was in my make-up that had contributed to it. I had been seeing my counsellor, Eric Timewell, at Fairfield Hospital for several years before my AIDS diagnosis. He had unfortunately been on holidays during my stay at the hospital. Later, he listened with fascination when I described the psychotic episodes. He was not all that surprised that my mind reacted this way under a situation of extreme stress. In his years of counselling me, he had found me to be remarkably protective 59
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of my weak spots, with a powerful urge to control emotions. I did not want to show too much anger, jealousy or hate; I wanted to always appear as a stable individual to the outside world. My life as a gay man had contributed to my desire to be master of my own environment, and my experiences with HIV had undoubtedly added to this. This desire for control had been challenged in hospital by the fact that I could not stop what was happening to my body as the pneumonia weakened me. Worse still, I could not control the fact that I now had AIDS. I had deluded myself that it was not going to happen. After I left hospital, a meeting was arranged with my mother and two sisters at my home. The sight of me as I greeted them at the door must have scared the life out of them. While I had been losing weight gradually for the past year, possibly because of the toxicity of AZT, nothing could have prepared them for the scarecrow figure that I now was, having lost ten kilograms during my stay in hospital. I now weighed 58 kilos, and on an 180 centimetre frame, that looks scary. I guess they must have expected me to be frail, as I was greeted with mountains of Tupperware containers full of food. These were signs of their preparedness to comfort and help me overcome this health crisis, and I appreciated the gesture even though I was hardly interested in food. I began the conversation with an apology. I was sorry that I had not prepared them by telling them I was HIV-positive, or gay. I told Mum that I became uncertain how she would handle it after she told me that I shouldn’t be mixing with people like Michael. In her overwhelming desire to protect me from a similar fate, she had thought a negative warning would help me to keep away from the risks of being infected, and I guess from being gay. But Mum was not here today to continue that line of argument. Whatever 60
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had happened before was not important now: it was a matter of how we could all work together to beat the virus, Mum said. I felt I needed to apologise to my two sisters as well. My eldest sister, Lynette, was married to a dairy farmer, Alan, and my younger sister, Julie, to a plumber, John. While I’m sure my sisters had had strong suspicions about my sexuality (and maybe had picked up hints from my brothers), the subject had never been discussed with me. Christmas dinners were a massive charade for me as I had to fend off ribbings about when I was going to bring a girl home. One year John told an offensive joke about poofters to lighten up the conversation and I froze, partly in anger, partly in fear. Should I respond with a ‘hey, that’s not fair’ comment to protect my pride, or shut up and hope that no one noticed my reddened face? As always I couldn’t cope with the confrontation and just let it slide. While neither my brothers-in-law would have persecuted me, I was still afraid of that macho side of the Australian male that I had so feared since primary school. Both sisters assured me that their husbands would not react negatively and were genuinely concerned for my welfare. Julie mentioned her own fear about the impact this news might have in her community if people found out and gossiped about it. ‘It’s not easy having to deal with having a brother who has AIDS,’ she said. I agreed that there was potential for embarrassment, but in a city the size of Shepparton it was unlikely to cause much of a stir, particularly as I was not living there. Lyn took a long letter I’d written to my father, also living in Shepparton, to explain that I had AIDS and was gay and that I hoped he could accept the news. It was difficult to explain such heavy truths in a letter but in many ways I thought Dad would prefer to take time and consider the issues rather than go through the confrontation of hearing about such sensitive subjects face to face. 61
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By the end of our three-hour conversation there was a palpable release of tension. A lot of pieces of my life were starting to come together for my mum and sisters—the lack of girlfriends, the secrecy about my Melbourne life, the distance that I had placed between us over the past ten years or so. My mother said that she had always suspected I was gay and it came as no surprise to her, but I was not so sure. Mum still didn’t really understand much about why people were gay. She hadn’t met many gay people in her life in a fairly insular country town, and certainly not someone who was open about it. My family left with assurances from me that I would keep in touch on a regular basis and that I would let them know if I needed their help. Mum would be down again in a few weeks’ time to stay with me. I was sure that I would be fine on my own and farewelled them without qualm. I was used to handling my life and my health. I didn’t need any extra care at this stage of the game. This did not turn out to be the case, however. I was still in a much more vulnerable mental state than I realised. While I should not have been surprised that there were after-shocks from having endured a fortnight of physical and mental anguish, I was unprepared for the manic episode that began. My body was still weak and my mind seemed to be working overtime to try to get on top of the situation. My thoughts started to speed through a range of different reactions to my AIDS diagnosis. At one time I would be imagining my funeral and my distressed family wondering why it had come to all this. Then I would counter that with a burst of positive thinking: contrary to all predictions, I would survive this death sentence. I would think of a way to overcome this illness. I was running around the house picking out paragraphs from an article about the immune system in a 62
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health magazine, putting together clues from an ancient medical dictionary on the bookshelf and moulding them together with a new, incredible insight that I had just been granted (assumedly from some higher power). I was going to find the cure to AIDS then and there and stop all this suffering for myself and for all the millions of people infected around the world. When an AIDS Council volunteer, Sister Rita, arrived on my doorstep to pick me up for a medical appointment, I greeted her with open arms and news of my fabulous discovery: a cure for AIDS. An ageing Catholic nun, with a reputation for getting patients lost because of her poor navigational abilities, she knew bullshit when she saw it. ‘It’s a lot of nonsense,’ she said. ‘You’re still not quite over your illness.’ I think I lasted ten days at home, trying to recuperate, trying to lie back on the banana lounge, read the papers and lead a nice leisurely existence. I just couldn’t do it. I was not ready to be retired from the workforce, to sit at home and contemplate my navel. I was keen to go back to work and when I mentioned it to Dr Bradford, he vacillated. ‘I think you need a bit more time yet. PCP is a nasty illness and it will take you some time to restore your strength,’ he said. I didn’t agree. I was raring to go, keen to get back into the fray at work. In fact I felt keener and more energised than I had been about work in a long time. During my days at home, my mind worked overtime, coming up with fabulous new projects that I could get the staff to do. Exciting new publications that I could do in my spare time. At one stage I prepared drafts for a dozen different books. I started to research the books and spoke to people with what must have been a manic enthusiasm. I was still wound up, still trying to protect my inner self from 63
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the trauma that had happened to my body over the previous month. While some artist friends were to say later that they knew there was something wrong and that my speedy behaviour was abnormal, they were still impressed by my level of creativity and mental energy. I cornered a good friend, Marjory Gardner, in my first day back at work, to solicit her to do some drawings. She agreed on the spot and started to draw rough sketches. Normally I would never have been so bold or indeed so pushy to ask for that level of response from an artist who was a work client. It was not in my nature to be so demanding and overbearing. Marjory was to say to me, much later, that she was a little taken aback by my urgency but she was also amazed at my creativity. ‘There were good ideas and you seemed to be so full of them at the time. It was amazing to see that change in you in that period.’ My first day back at work, I was in an elevated mood, partly because of my pleasure at being back in a normal space, away from sickness and hospital walls. I bought each member of staff an orchid, to thank them for their work, and I guess as a sign that I wanted them to trust me to be in full control of my faculties. They had been very supportive, having visited me in hospital several times (hopefully when I was in my more lucid moments). My boss, Alan Mayberry, had been particularly supportive. He was a gay man who understood the impact of HIV, having lost a dear friend and fellow workmate, Dave Sergeant, to AIDS in the mid-eighties. I felt like I was back in a relatively safe environment. It wasn’t long before some people reacted to the new, slightly more aggressive, less patient me. On top of my normal workload I was initiating meetings with other managers to start new
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projects. I had plans for an art-and-craft resource to be developed. When I had a senior producer from the audio-visual area up to discuss an idea I had for a television program based around our magazines, he was taken aback by my forceful tone. He had to call my bluff. ‘David, what is going on with you? You’ve changed. No one is going to want to work with you if you take this aggressive, pushy tone all the time.’ This was a wake-up call. I hadn’t realised I was coming across in such a negative way. Alan called me in at the end of the week to say that he had to defend me from talk amongst the managers. He said that I was behaving this way because I was still not over my illness and it had hyped me up. I would eventually get over it. Now I knew what the problem was, I did start to slow down and relax. Traces of the psychotic episodes I’d experienced in hospital were still with me. I had to wind down properly to return to my former self.
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Chapter 6 Leaving Work
The room was full of media. Television crews from every local station, the three major newspapers and a couple of suburban weeklies. People with AIDS were fighting the local council over the right to have a community house in Caulfield. A spokesperson for the community, a person with AIDS, was prepared to front the cameras. It was July 1990 and I was the person speaking at the media conference, on behalf of the Victorian AIDS Council. A year before, still a bit jolted by my AIDS diagnosis and my physical weakness, I nonetheless became involved with the fledgling People Living with AIDS group that was set up as part of the Council. I’m not sure why I had this interest: was it because of my earlier activism with the teacher unions or the collective that organised the 1979 Homosexual Conference? Was it because I wanted to understand more about my identity as a person with AIDS by becoming involved in fighting for the rights of a stigmatised group? Before long I was made convenor of the 66
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group, taking over from a brilliant positive advocate, Keith Harbour, who had put the structure, constitution and membership in place for me to build on. Being the leader of this organisation involved being media spokesperson. Appearing before the cameras at the vacant Caulfield house was my first media experience. I was sitting beside Joan Golding, a calm and dignified grandmotherly figure who had lost a son to AIDS several years before. I was dressed in a suit, having rushed from work, and together Joan and I were trying to present ‘the respectable face of AIDS’ to the mainstream community. The subject had certainly received a lot of media attention but there had been few people with HIV/AIDS prepared to go public. I’m not sure that I had adequately thought about the consequences of appearing on the evening’s news bulletins. I remember wondering whether I should give my family a call to warn them of the possibility of my image being beamed into their lounge rooms at six o’clock that night, along with the caption ‘AIDS sufferer’. The journalists’ questions were sympathetic and I warmed to the task of selling the need for people with AIDS to have our own drop-in centre in a location close to treatment facilities and public transport. The Dandenong Road property was about the thirtieth we had investigated in the past year and one of the few that met the local council’s rigorous requirements for on-site parking. The government had committed the money to a centre some three years earlier, and we were desperate to get the project underway. But the house was in a very expensive residential area. Residents were loudly complaining to the council and had lodged objections to the planning permit. Objections included the impact on parking in nearby streets, suggestions that there would be noise problems and loud parties, and fears that there 67
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would be drug users visiting the centre and disposing of needles inappropriately, threatening the lives of children in the street. No one mentioned the rather obvious issue of fears about property values falling, which many of us thought was probably the major motivating factor behind the objections. A journalist asked me how I felt about the resident’s objections. ‘Well, I think we’d make quite good neighbours. We are not exactly loud party animals. I’d like to think that we can have a place of our own to come to, to learn from each other and be able to live positively with this virus.’ Joan spoke about the last months of caring for her son Martin and about the terrible problem he had with depression. ‘We were able to see a difference when we got other young people into the house,’ she said. The reception of the media was favourable. Many of the journalists now had my home and work numbers in their address books and I was to be contacted numerous times in the future when they had need of a comment from someone living with the virus. Whether I was ready for this newfound media spotlight or not, I was now thrust into it. The committee members of People Living with AIDS Victoria were delighted that someone was prepared to be their media spokesperson. Some had concerns about their workplaces, families or even their friends finding out about their status. I understood the reluctance of others to disclose so publicly. Incredibly, I didn’t pick up any negativity, even though photos of Joan and me were prominently displayed the next day. I didn’t have people in the street recognising me and pointing me out as ‘that AIDS sufferer who was on the telly last night’. Media is a transient medium. At least I didn’t suffer from its glare. 68
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Sadly, we didn’t win the battle with the Caulfield council. It was council election time. The residents group pulled in state and federal politicians who criticised the AIDS Council for failing to follow due process, because our application was faulty or other such nonsense. As it turned out, the loss was a blessing in disguise. The following year we won the lease on a property at 46 Acland Street, St Kilda. It was a backpackers’ hostel that had fallen on hard times. It was a relatively modern building and in the perfect location for our constituency. St Kilda has a high percentage of gay male residents and a high percentage of people living with the virus as well. Considerably larger than the Caulfield house, the centre had a large kitchen, plenty of room for the AIDS Council’s medical clinic, and it was in a commercial zone. Few residents were to complain about us this time, partly because staff from the AIDS Council contacted complainants and talked through their fears. The arguments about drug use could hardly be trotted out this time: St Kilda already had a high rate of street drug-use and we were not going to do anything to add to that.
My health had its up and downs during this time. My energy levels were problematic, necessitating regular lunchtime trips up to the sickbay. More than once I fell asleep during management meetings and would have to be gently reminded of where I was. I was coping quite well otherwise, having returned to my normal self after the initial manic period. I loved my work and my workmates. But I was restless to move on, to complete the grand travel plans I’d had in the back of my mind for so many years. If I dropped out of a 9 to 5 routine, my health might just get a boost. 69
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A number of things helped to crystallise my decision to retire. In May 1990 my dear friend Michael died. It was a traumatic experience for all of his friends, seeing Michael incontinent and showing signs of dementia. He was feisty to the end, which I was pleased about; something of the real Michael was there when I visited, even if a lot of the conversation was highly confused. He was constantly berated by the nurses for smoking in bed. ‘Have you been smoking in bed again, Michael?’ said a nurse, looking at the telltale burn marks on his pillow. ‘No, I wouldn’t do that,’ said Michael, with a wicked grin. ‘I’m a good boy.’ One day he asked a friend, John, to go down the street and buy him some slippers, size 8, and they had to be brown. Fortyfive minutes later, John returned with the slippers. ‘Well, yes, they fit perfectly, but I don’t like the colour much. I think I’d prefer blue,’ said Michael. John was about to protest that he’d specifically asked for the colour when he thought better of it. Go with the flow, he said to himself, go and get him the blue ones. It’s the least you can do. In the normal course of events, Michael wouldn’t care, but at that moment this was a significant and important thing to get right. The last time I saw him he was having trouble getting back into bed after actually obeying a nurse’s command that he smoke outside. He was incredibly weak and I lifted him into the bed, gently trying to avoid touching his feet, which were causing him incredible pain from peripheral neuropathy (nerve damage related to HIV). He gave me a rather lovely smile. ‘Thank you for helping to look after me,’ he said, in a very uncharacteristic way. He was showing vulnerability, admitting that he needed help. But he must also have been thinking about his prognosis, reckoning it was time to say thank you to the people who had 70
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been closest to him for a good part of his life. It was an important last memory of a friend who had meant a lot to me, a companion who had been with me through the coming out process, who I’d shared my fears with, and the good times, over the past twenty years. When I stood at the dais to deliver the eulogy for Michael’s funeral at Springvale Crematorium, I knew that many in the audience were wondering if I would be next. My mother was in the second row, behind Michael’s mother, Peg, and his two sisters and their husbands. Mum had been spending a lot more time at my place. Many of my friends from the last two decades were there, too, having been friends in common with Michael. When I got up to speak I sensed that people were willing me to do a good job, to get through the experience without falling in a heap from grief or frailty. I did look frail, having lost a lot of weight in hospital in February and only gradually managing to put it back on. I didn’t have any doubts that I would make it through. I wanted to do a good job as a tribute to Michael. This supportive gentleness that came from people at that time was something I would experience many times over the years of my illness. I felt people willing me to survive. It’s this love and support that—if you acknowledge it at the time it is given—can give you real succour and strength to get through hard times. At Michael’s wake I had a chat with my positive friend Morden. He and his partner Michael were thinking about retiring and travelling around the world, making the best of what time they had left together. ‘But you both look so well, Morden,’ I said. ‘Won’t you miss work and get bored?’ ‘When you think of the number of people in our group who have died or gotten sick so far, it’s better to act sooner rather than later. I’ve got a superannuation package I can draw on and 71
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Michael and I really want to travel around Italy for a few months.’ I blushed when he referred to people who were sick. Clearly I was one of them, and here we were, at another funeral. Ideas about retirement had been in the back of my head but I hadn’t really given them that much thought. Despite my fearful time in hospital, when the prospect of death preoccupied me, I had not focused on the big picture, just survived on a day-to-day basis. Michael’s death woke me up to the need to plan for all possibilities. What would I do if I left my work? I got a great sense of achievement and reward from my role as an editor of children’s magazines. I was busy working with creative people to brighten young readers’ schooldays. I was passionate about my job. If I left work I would need to fill in the gaping hole that would be left. I found it hard to imagine my days sitting at home in front of daytime television or struggling to the hospital for treatments, as some of my friends were doing. I don’t think I thought of my role as convenor of People with AIDS as an alternative career, but I did think that I could do something useful and constructive if I moved down the path of retirement. I had become close to the general manager of the Victorian AIDS Council, Dr Jim Hyde, and the president, Tony Keenan. The three of us would often discuss ideas about how the People Living with AIDS movement could expand its role if we could convince government that we had the leadership and ability to carry through our plans. The rapidity with which some people’s health could deteriorate did play on my mind. I would only have to attend the daycare centre at Fairfield Hospital one day a month, to inhale a drug called Pentamadine to stop a recurrence of PCP. Other 72
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patients were attending three times a week to have intensive treatment for a condition called cytomegolavirus (CMV) retinitis. CMV is a common virus that is passed on by kissing, but it is a problem for people with an impaired immune system. In people with HIV it can attack organs, including the eyes. If your sight started to deteriorate, you were placed on a strict regimen of antibiotics that had to be infused three times a week. Those placed on toxic drugs to counter CMV saw the quality of their lives change dramatically. The necessity for regular infusions meant that people had a portacath surgically placed in their chest to deliver the drug into their body. These portacaths had to be treated with the utmost care to avoid infections, and a lengthy procedure had to be followed by the patient (or nurse) every day to ensure that everything was sterile. Many patients had trouble with the portacaths getting infected, which could be life threatening. Others found the process too difficult to complete at home and had to go to the hospital every couple of days for their two or three hours on a drip. Inevitably this got people down, despite the warm and caring environment that the nurses tried to foster. Most of the patients I saw on drips became sicker and sicker from the side-effects of the harsh drugs. Their liver or kidneys would eventually fail from the toxicity. I would arrive for my monthly treatment and ask about Bruce or Graeme or whoever and be told that they’d passed away. I started to learn not to ask. There was also Kaposi’s sarcoma, a fairly rare cancer until AIDS arrived on the scene. People would be covered by raised purple lesions all over their bodies. One positive guy I got to know around this time, Les, learnt to send up his confronting appearance, with large purple spots all over his face. ‘I tell kids who stare at me in the street that I’m a clown. It’s bloody difficult 73
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to go anywhere looking like this,’ he said to me once. A nurse at Fairfield, Tess Slater, taught patients with lesions on the face how to apply make-up, to lessen the trauma of going out in public. But there were limits to how often people were prepared to go through that as a daily routine. I saw KS patients after their chemotherapy, suffering intense nausea, and I hoped and prayed that whatever awaited me, this cancer was not one of them. In September 1990 I discussed the idea of leaving work with my doctor. David was supportive, saying that while he did not agree with every positive person who came to him looking to retire, he thought that I would make productive use of my time in retirement. ‘Some patients come to me when they are very well, with 500 T-cells or more, and I think they’d be better staying at work, getting the benefits of a good income and a career. But with you, you’re going to have a reasonable income with your superannuation and you’re involved in lots of community work. I think you’re probably not going to get bored.’ ‘And what about my ten T-cells? Would they be a good reason to retire, too?’ ‘Well, it’s important to do whatever you think necessary to protect your health. I’ve still got people working with that level of T-cells but they do struggle a bit. It depends a bit on your work and the attitude of your employer if you need time off,’ said David. I made plans for retirement by selling my much-loved house in Kensington and moving to beachside Elwood. I had found a lovely 1930s unit with a garden, only two streets from the sea. I imagined spending some of my days walking along the beach and enjoying the vista. It was an improvement on the industrial environment of Kensington, even if I left many happy memories there. 74
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I talked to my boss, Alan, about the idea of leaving work and he was supportive. They didn’t want to lose my years of experience, but if he was in my shoes, he’d be retiring and making the best of the times when I had good health. My farewell from work, after fourteen years of the best job in the world, was a sad but pleasant affair. When they rolled out the suitcase that was my farewell present, I cheered up and focused on the round-theworld trip I’d planned for the following year. Life was not in a holding pattern quite yet.
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Chapter 7 Living with a Prognosis
Travelling to the United States of America when you’re HIVpositive is a nerve-racking experience. The country’s laws forbid any foreigners with HIV from entering, except in a few rare and exceptional circumstances. Experienced positive travellers had told me that I had a couple of options to get around this law. I could ignore it and take the risk that Customs wouldn’t check my bags and discover my pills—their computers would tell them the drugs were HIV-related. I could package the drugs in vitamin containers or I could send them to a friend’s address in America and hope that they were not intercepted. I chose the vitamin containers option when I prepared to travel to America in April 1991. I was taking a relatively small number of AZT pills at that stage and hoped that the Customs officers would accept that I needed quite a lot of vitamins to get by each day. An American friend said that if there was any country in the world where they would believe in this, it would be anything-goes, health-nutty America. 76
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As I prepared to land at Los Angeles Airport with my friend Ken Wright sitting beside me, I contemplated the scene if the officers suspected that we’d told a lie on our entry forms about ‘not having a communicable disease’. Would they recognise our tell-tale blue and white AZT pills and send us packing on the next flight to Australia? It had happened to people we knew, although they had stupidly confessed to being positive on their forms. As the tall black Customs official stood eyeing off the queues of tired, straggling passengers lining up for clearance, his eyes settled on me. ‘What’s going on?’ I said to Ken. ‘Do you think he can hear the pills clattering in my suitcase?’ A few steps closer to the exit door and he walked straight at me, lifting his arm as if to usher me off for a search. But then he settled on an elderly, greyhaired lady in front of me. I could not believe my luck. My heart was racing, my hands were sweaty, but I made it through the barricades and into the delights of the Land of the Free—off to San Francisco, Los Angeles, New Orleans, New York and other amazing places. My health was passable—hopefully good enough to hack a leisurely pace through the States, then on to London where I was to meet other friends and travel around Europe. My ultimate destination was Florence, where the International AIDS Conference was to be held in July. I had rehabilitated my frail arms and legs, which had become wasted during the episode of PCP, through training at the Fairfield Hospital gymnasium. I had restored my weight with drink supplements and a determination to eat constantly, every high-kilojoule, high-protein food I could find. Even so, I had a last-minute scare before my departure. A large lump had developed on the side of my leg. It turned out to be a virulent staph infection which I’d almost 77
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certainly developed while being treated in the hospital. The alarmed look in the admitting doctor’s eyes told me my problem was serious. After a few days of massive doses of antibiotics, the doctor informed that I was lucky I hadn’t lost my leg or indeed my life from the infection. For someone with zero T-cells, such an infection was often a recipe for disaster. Ken proved to be a challenge to travel with. He had lost his partner, Ivan, to AIDS the previous year. After selling the house they had owned jointly, he was cashed up to enjoy what he thought would be his final around-the-world fling. I had met him and his partner at Melbourne Positive Friends and had supported Ken through a very painful grieving process after Ivan’s death. He had moved in as my flatmate. I knew he was a volatile character, having witnessed some very rowdy, abusive phone calls to his family over the months he had lived with me. I was spared any such behaviour but knew that if I was to ever get on the wrong side of this fiery little fellow, I would be in trouble. In a wonderful week in San Francisco, Ken’s gregarious nature soon had us invited to parties and soirees at locals’ houses. In Los Angeles the week after, Ken looked up someone he’d had a one-night fling with when we had visited Honolulu together the previous year. This friend had a wealthy contact who owned a luxury pad in the Hollywood Hills, where the rich and famous lived. This man was apparently, at one stage, accountant to Barbra Streisand. We were to be treated to a touch of Hollywood glamour in a palatial mansion with a spa bath that could take twenty hot men, we were told. Maybe it was to be a night of depravity. The taxi wound its way up the Hollywood hills, past the houses of the rich and famous. Our host’s place reminded me of the rambling sixties facade used in the TV sitcom Father Knows 78
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Best. An ordinary-looking chocolate brick house, it was in an extraordinarily expensive neighbourhood. Inside, the trappings of wealth abounded. The balcony led to a magnificent swimming pool and spa overlooking the lights of LA and the famous HOLLYWOOD sign in the distance below. The house had a guest suite, gymnasium and private theatre. Ken was intoxicated with this slice of gay nirvana. We began our meal with anecdotes about life down under, quashing some of the myths about Australia that the film Crocodile Dundee had created, even for these intelligent gay men. No, the majority of people in our country did not live rural lives, or fight off crocodiles or wild kangaroos. Things went along pleasantly enough until Ken announced that he was changing our travel plans. We were going to stay here for the next three weeks, to lap up the luxury of this high life with our new, glamorous Hollywood friends. I resisted, suggesting that it would be very difficult to change all our travel plans just like that. ‘How could you?’ He glared back at me across the table. ‘I trusted you to be a good travelling companion and now you’re copping out on me when I need you.’ ‘I just want time to talk about such a drastic change, Ken. I don’t want to be told that this is what we’ll be doing.’ Our hosts tried to smooth things over but the looks that I continued to receive from Ken built the hostility between us. When the meal finished, the idea was to move to the bubbling spa out on the balcony, disrobe, and continue the conversation there. Ken, who was eyeing off possible sexual conquests around the table, led the way out to what he hoped would be a night of sexual frivolity with well-heeled partners. Never one to cope well with confrontation, and feeling 79
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vulnerable in a strange place, I hid away. I found a twelve-seat theatre where a porno movie was playing and sat down to contemplate my immediate future. Unlike Ken, I did not think that these people were prepared to hang around with two Aussies for several weeks, showing us the delights of their high life. I sensed we were a one-night curiosity and that they would go back to their busy lives come the end of the weekend. I wanted to go to Palm Springs, New Orleans and New York. I wanted new travelling experiences. I had little time for LA and its mad traffic, heavy pollution and general ugliness. And we would be losing large amounts of money if we cancelled all our pre-paid travel bookings. The ride in the cab to our accommodation was murderously quiet. We were both preparing for a tirade as soon as we got into our shared bungalow. ‘How dare you ruin my holiday like this. Those guys really wanted to show us a great time,’ spluttered Ken, looking as if he was about to burst a blood vessel with anger. ‘How dare you make decisions like that without asking me first. Who do you think you are? My keeper or something?’ So it went on, two angry queens trying to get the upper hand over what should have been a relatively minor matter in the scheme of things. Our friendship never really recovered. I won the final battle and the trip proceeded as arranged. Later, Ken was to part from me in London where he met, believe it or not, a wealthy American positive guy who offered to take him for a romantic fortnight in Venice. What my relationship with Ken showed me was the difference in our approaches to mortality. Why Ken wanted to hang about with our Hollywood acquaintances, he said, was to fulfil a fantasy he’d always had about mixing with the rich and famous. ‘The guy 80
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who owned the house was an accountant to Barbra Streisand. God knows who he might be able to introduce us to,’ Ken said during our argument that night. ‘I have only got a few months to live and I want to live it in the most exciting, fantastic ways I can.’ That was the nub of the issue. From the day I first met him, Ken said that he believed he didn’t have long to live. This was understandable, given the death of his partner. He felt his destiny was tied to his partner’s, and while I doubt that he had religious convictions about meeting him in another place, he did miss their relationship enormously. He saw his own death as inevitable, probably within a year of Ivan’s, and no amount of persuasion on my part would convince him otherwise. I was frightened of the possibility of death, and with less T-cells than Ken and a history of illness, should probably have been more anxious than him. I didn’t feel such a sense of urgency, however. I never quite had a finite term pictured in my head—I allowed myself to think ahead to my fortieth birthday for instance, which was over a year away. Looking back, I feel a little guilty that I didn’t give way to Ken’s wild whim and live out a Hollywood fantasy for three weeks. I was not unknown to do things spontaneously or to go with a crazy idea for the thrill of it. For some reason I was more cautious this time. Sounds boring now but I guess my illness had made me clip my wings a little. I knew that I had to get to London by a certain date to have my monthly Pentamadine inhalation at Middlesex Hospital. This seemed more important to me than living the high life in LA. Ken was to move out of my flat back in Melbourne before I returned from Europe. He moved in with a nursing friend and became ill within a very short period. He suffered a cruel stroke 81
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that was to leave him totally incapacitated. He had been diagnosed with AIDS lymphoma and had a very short time to live. I tried to contact him to express my support but he refused to take my calls. I found this hurtful, thinking it was because he could not forgive me for LA. His flatmate told me that it was nothing to do with that. Hardly anyone was allowed to visit or even talk to him. He was so upset by the physical changes caused by the stroke that his pride would simply not allow it. He had always been a vain man, who worked hard on his looks and his body, and I suppose I shouldn’t have been surprised. I went to his funeral and tried hard not to think about our catfight in the bungalow in West Hollywood. There were many other, pleasant memories that I could savour of our short friendship.
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Chapter 8 Attitudes to Death
That sense of urgency which motivated Ken Wright in the last year or so of his life was not uncommon. With no particularly effective treatments available in the early nineties, there was an acceptance that the chances of survival were small and that it was better to live life to the full while you had your health. It was common for people to fulfil travel plans, as I had done, even if it involved going into debt. As a result it was not uncommon for some positive travellers, who were still fairly well, to arrive home from their around-the-world tours with huge credit-card bills and a life of poverty awaiting them. More than a few found this poverty trap stressful and perhaps it contributed to the development of illness. My greater concern, which I would sometimes discuss with members of Melbourne Positive Friends, was the ‘pointingthe-bone’ syndrome. One positive long-term survivor, Bill O’Loughlin, told me how guilty he felt when he told a friend diagnosed with PCP that he probably had twelve months to live, 83
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given current figures. ‘He had asked me to be honest and I told him what the doctors were saying. I tried to say that others managed to survive longer and not to treat that as gospel. But I was shocked when I learnt that he died twelve months to the day after I gave him that prognosis.’ Another long-term survivor, John Marriott, used to run small groups for positive people in an attic room that was part of a Catholic church property in St Kilda. His story of surviving AIDS for six years—since 1986—through alternative therapies was a source of inspiration for a number of us who participated in his six-week discussion sessions. John told us of the rigorous dedication to his regimen of macrobiotic food and juices and of his huge daily intake of vitamins and herbs. He also believed that a major part of surviving AIDS was about avoiding the ‘pointing-the-bone’ syndrome. I have mixed feelings about the truth of this. Some people left work when they were very healthy, not long after they were diagnosed with HIV. Without the structure and purpose of a work routine, they found themselves doing a lot of thinking— and waiting. Waiting for symptoms to occur and for the inevitable to happen. Sometimes they had insufficient resources to maintain their lifestyle, found themselves in public housing and on a disability support pension of less than $200 per week. They underestimated the importance of work to their sense of self-worth and for its social contact. Social isolation perhaps affected their health. Some people become attached to their illness, almost to the point of it becoming a new identity. In our group, we talked about our fears—for our mortality, for what might happen if we got sick. For some, it became the central theme of their lives to the point that they had few other contacts but other positive 84
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people. In a curious but understandable way, some regarded each new condition or illness as something ‘special’ to talk about. It was a reason for people to care for them and show concern when nothing else had attracted such attention before in their lives. Maybe, as part of this, some people did become so attached to their illness that the concept of death became a necessary part of the process. This was not a simple issue. A new range of life-saving drugs were to arrive in the mid-nineties, and it was not unheard of for some people to tell their counsellors, ‘Give me back my early death.’ Death was a promised part of the process of living with AIDS. Most of my friends fought this virus with tenacity and bravery. They took a positive outlook and said that they would outlive their doctor’s prognosis, regardless. They fought to the end against an incredibly strong virus, which the best of western medicine and science was unable to conquer—and ultimately they couldn’t conquer it either. I remember with admiration my neighbour in Kensington, Tony, who had been a student of mine at Rochester High School many years before. He would have just turned thirty when he became ill with his first AIDSdefining illness, CMVretinitis. With his partner, Ross, as his major support, Tony made the trip to Fairfield Hospital’s day-care unit for his infusions of drugs to stave off the CMV-related blindness for as long as possible. Tony knew that the toxic drugs used to treat the condition were sometimes enough to kill people. He knew that many fellow patients at the unit had died during his time of treatment and that when he reached the milestone of four years as a patient with CMV retinitis, he was heading towards the hospital’s record books for survival. 85
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When I taught Tony he was a fairly quiet student, lacking in self-confidence. He was undoubtedly going through the usual self-doubt that a young gay male in a rural high school experiences—as I had done a few years previously—and I should have realised this. I was surprised and admiring of the fortitude he was to show during his very trying time with AIDS. When he went blind in the last year of his life, he kept the same cheerful demeanour and positive attitude. He had worked out how many steps it took to get to my place from his house three doors down the street. He could look after himself if Ross had to leave him for a time and he was good company. I know the staff at the daycare unit missed him greatly when he finally died and I would often quote his attitude to living with serious illness as a source of inspiration and admiration. People at this time were afraid but they were also fearless— what did they have to lose if death was only a short time away? They were angry and frustrated about the lack of a cure. What better way to take out this anger than to target the government and wealthy drug companies for their tardiness in coming up with the answers? The group ACT Up (AIDS Coalition to Unleash Power), which had begun in the USA, was established in Melbourne and Sydney in the late eighties. I’m not sure why I didn’t get involved with their anarchic protests, because I did support the need to change the drug approval process in this country. New antiviral drugs developed in the United States were taking far too long to be approved in Australia because the Therapeutic Goods Administration (TGA) demanded further trials. Bureaucrats from the TGA would point out in their defence that, ‘We stopped the wide introduction of the drug Thalidomide into this country through our careful procedures and we’re not about to change for this illness.’ 86
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I was involved in my own form of activism, working as the convenor of People Living with HIV/AIDS Victoria and also with the National Association of People with HIV/AIDS. We were trying to put pressure on the government through more conventional measures. Ultimately it was groups like ours that forced two reviews of the drug approval process in 1991: one led by Professor Peter McDonald and another by Professor Peter Baume. They recommended that Australia accept the treatment standards developed by the USA rather than wait for the results of Australian trials. The Baume Report allowed people with HIV/AIDS to import therapies under a ‘special access’ scheme. Both measures were to be incredibly important in bringing treatments more quickly to people. Activists like Bill Whittaker, then the Treatments Spokesperson for People Living with HIV/AIDS NSW, and Rolf Petherbridge were instrumental in bringing change about. They helped convince the Health Minister, Brian Howe, of the critical importance of reform. To his credit, Howe listened and acted when countless ministers before him had not wanted to rock the boat. The ACT Up protests helped to give these issues a strong profile. One protest was held at the National AIDS Conference at the Australian National University in August 1990. There Brian Howe was faced with noisy ACT Up protesters during his speech to open the conference. Soon afterwards he announced Baume’s review of the system. Later that year there were discussions about the possibility of closing Fairfield Hospital, then the major hospital providing medical services for people with HIV/AIDS. While the Victorian AIDS Council was to mount its own, ultimately successful campaign to save the hospital, with public rallies 87
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putting enormous pressure on the Labor government, ACT Up’s role was important. A protest about the future of Fairfield Hospital—on the steps of the Victorian Parliament House in late 1990—saw the president of the AIDS Council, Keith Harbour, arrested. The charge was later dropped but it raised the issue of whether the AIDS Council was behind the workings of ACT Up. There was no doubt that a considerable numbers of AIDS Council staff and supporters attended ACT Up meetings and probably some took part in their direct action stunts, which ranged from arranging loud protests on the steps of Parliament House to posting graffiti around the suburbs and sending abusive faxes to politicians. Officially the AIDS Council and People Living with AIDS Victoria had nothing to do with ACT Up. The dismantling of the floral clock in St Kilda Road in June 1991 was the most outrageous and undoubtedly the most publicly condemned of their stunts. It was timed to publicise the tenth anniversary of the first diagnosis of AIDS in America. In the middle of the night a small group of ACT Uppers had plucked out the floral display and replaced it with an ACT Up symbol and multiple crosses to denote the number of deaths from AIDS. The outcry from the media and public through chat shows and letters columns suggested that a major act of vandalism had been committed, nothing short of criminal behaviour. There was no doubt it was naughty and deserving of reproach, but it did very little damage. The purveyors of this little stunt had found out from gardeners at the Melbourne City Council that the flowers were due to be changed that week anyhow and they figured the damage they were doing was minimal. Another high-profile stunt had been staged at Parliament 88
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House in Canberra a year before. Called the D-Day demonstration, ACT Up members from around the country lit bright red flares. One of the prime movers of Melbourne ACT Up, Bill Hathaway, played a prominent part in the day’s activities. He managed to avert the attention of security guards in the House of Representatives so that two people could hurl themselves down from the visitor’s gallery onto the floor of the chamber, carrying an ACT Up banner. Bill managed to get away with his role in the incident without being charged or fined. I knew Bill Hathaway fairly well, having worked with him at the AIDS Council for a year or so. He was the Council’s HIV Education Officer and a bright, ebullient activist with a high profile in the gay community, both for his education work and his extroverted party boy status. He had dreamy looks, blond hair, blue eyes, a lean attractive body and the most engaging sexy manner. Although he did not have the most accomplished CV when he applied for the AIDS Council job (having failed to complete an academic degree) his energy and enthusiasm— and probably, if we want to be honest, his good looks—swayed the interview panel, of which I was a part, to take a risk on his abilities. He took up the challenge to change the way both fellow AIDS Council educators and positive people thought about the role positive people could play in preventing other gay men from contracting the virus. At that time if you were HIV-negative, you would probably want to work with other negative guys in the prevention area, designing education campaigns. If you were positive and well enough to work, you would probably be more interested in the care and support area or in working on treatments information. Bill was mentored by Keith Harbour, who had served as president until 1991 and had pressured the Health 89
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Department to come up with funding for Bill’s position. Keith’s health was failing in 1992 but he kept up his interest in this pet project. Our committee came up with a series of posters that worked on the principle of including both positive and negative people in the sexual negotiation process. No longer was the message aimed at negative guys only: it had to be recognised that positive people were part of the sexual equation. The slogan for our campaign became ‘Positive or Negative: We Use Condoms Every Time’. Similar campaigns came out of the AIDS Council of New South Wales at this time, including the famous HIV-positive artist David McDiarmid’s colourful posters. After the successful launch of a campaign of safe-sex posters, with actress Sophie Lee as the drawcard media personality, Bill’s work capacity slackened off markedly. It soon became known that he had a lymphoma on the brain similar to the one that had killed Keith in August 1992, several months previously. The random horror of how AIDS claims its victims is always devastating, but with someone as young and seemingly healthy as Bill, it was a particular shock. Over the next few months, Bill had a team of friends as support as he tried radiation therapy for the lymphoma and battled the nausea and side-effects. In early February 1993 Bill died. The death of an activist, educator and wild party boy at twenty-seven years of age. It was said that only a few days before his death Bill had done cartwheels on the dancefloor at his favourite gay nightclub, Mandate, proving that despite his health problems he still knew to have fun. The fact that he could show this energy then had some people suggesting that he must have taken his own life. I don’t know whether Bill took steps to shorten his own life or not, but it is understandable that some people would want to 90
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take this course and avoid more suffering. To some people, such as Ken Wright, there was also the issue of vanity. To the best of my knowledge Ken did not take any steps to end his life but there were many people I knew who had done so, believing that their illness was terminal. Euthanasia is a sensitive issue and difficult to discuss openly. People fear charges of manslaughter or even murder. But there were many anecdotal reports of people putting themselves at some risk to end the suffering of a loved one. Euthanasia was a difficult issue for the AIDS Council. It would have been wrong to impose any one view on the many volunteer carers who were looking after people in their homes as part of the AIDS Council support teams. Many had strong Christian views about euthanasia and the sanctity of life. In 1994, seven Melbourne doctors, most of them HIV practitioners, declared openly to the press that they had helped people with AIDS to die because their patients wanted to die with dignity and end a life of pain and misery. I had been asked my views on euthanasia by the press on several occasions. I learnt to be very wary of implicating anyone, including myself, in what was an illegal activity that could theoretically lead to a jail sentence. When I was asked by a reporter from Melbourne’s Herald Sun whether I would consider doing it myself, I caught myself out. I told the reporter that, if it was necessary, I could find a doctor at Fairfield Hospital who would help me. The next day I was harangued by the hospital’s doctors, wanting to know who would do this. The haranguers were good Catholic doctors who were horrified to think that their hospital could be associated with this issue. In future when asked my opinion on the subject I would say what I now believe: if the situation arises, I will 91
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consider my options. As a Christian I will not be taking the easiest and quickest exit. I will be likely to use my faith to help me deal with the pain. You cannot be sure until you are in the situation, and no one should rule euthanasia out, in my opinion. My life at this time was full of meetings and functions associated with HIV activism. It was fulfilling in many ways, particularly being able to represent the views of positive people to the media. But on one level I think I was filling in time, trying to keep my mind occupied before the predicted AIDS illnesses started to affect me. In quiet times at home in my peaceful flat in Elwood, I looked back through my photo albums from the past and reflected on my almost forty years on this planet.
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part two
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Chapter 9 Sandpits and Building Blocks
My first memory of childhood was of being bullied in the schoolyard. A stocky little roughnut called Peter Maskell pushed me over in the sandpit. I bolted for the gate. With faeces streaming down my legs and tears welling from my eyes, I rushed home to the comfort of my mother and a hot bath. I was only four years old. The headmaster at the primary school had asked my mother if I could start school early, to bolster the numbers and keep the infant teacher. Peter Maskell was in Grade 1 and looked intimidating to me, with my spindly legs and slight frame. Despite having a younger brother, I had never been roughed up or roughed anyone else up. As I got older you might think I’d learn to give a bit of my own back in the sandpit wars, to assert my superiority over the schoolyard bullies. But it was not to be. I’m not made that way. I hated contact sports and getting into rough and tumbles with 95
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other boys. I was much more interested in spending time with the girls, and was often passing notes between this one and that, depending on who was my girlfriend of the moment. I more than once proposed to the clever girl in our class, Lynette Mapletoft, who I walked with hand in hand and who I was definitely going to marry one day. This preference was to change pretty significantly when I grew up! Not that I didn’t have good mates at school. I was always having lots of boys (and some girls) over to our place to play in the big backyard behind our house, building cubbies and fighting incessant cowboy and Indian wars, sometimes using the chooks as our advancing cavalries. We lived in a small rural town called Wunghnu in northern Victoria. The town was named for the indigenous people’s word for ‘boomerang’—perhaps because of the curve of the creek which wound its way past the bottom of our block. Locals liked to make fun of the town’s curious name. It’s pronounced ‘One Ewe’, and it became a local joke that the town was the ‘biggest sheep station in Australia’. Even today the joke is carried on, with a large comic drawing of a woolly ewe adorning the town’s water tank. It felt like a ghost town, the main street being lined with deserted buildings. Set up in the 1880s as a farming hub, it was once a thriving settlement with farmers bringing their produce to the wheat silo for transport by rail to the cities down south. Now the rundown, two-storey mechanics institute dominated the main street. The building was once the town hall, with a dancefloor, piano and room for the Wunghnu Town Band. Other evidence of former glory included an old hotel and bank, now derelict. In my youth the town had a population of less than a hundred people and services like the post office and railway 96
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station were always threatened. We were seeing the beginning of the rural recession that has become a strong feature of modern society. In the early days I remember steam trains passing through on the way to Numurkah, eight kilometres to our north. These noisy, smoky but somehow charming monsters gave way to diesel engines in the sixties. It was my mother’s job to meet the train twice a day to organise tickets, parcels and the like. It was fun to hang around the old railway station, a cavernous wooden building filled with contraptions, signal changers, weights and measures and other curious memorabilia from a bygone era. My dad, Donald, was a shearing contractor who ran teams of shearers around the local farms. He had a stocky, broad-shouldered body but he was not tall like his sons were to be. He had the nickname Nugget during his days studying agricultural science at Dookie College and to look at photographs of him then is to see an athletic, nuggety character: one with a bit of grit and determination who often won running events at athletics competitions. Dad had to be fit and strong for his work. Shearing was a pretty tough, back-breaking job which started very early in the morning and had him coming home weary and sore, often late at night. Dad took me out on a shearing run with him when I was about eight years of age and I can’t say I was enthralled by the experience. Big burly men running here and there, throwing bucking ewes onto their backs to be shorn. I had to dodge out of the way as the rouseabout grabbed the wool from the floor and threw it over the classing table. Dad gave me a handpiece to hold but there was no way I could hold that throbbing thing still. It would take someone with a lot more strength than me and I wondered if I would ever be strong enough to do the type of 97
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things my dad and his workers did every day. I did not connect with my father much during this time and I’m not sure he knew how to engage with his young sons, particularly one like me who was not totally in the masculine mould. My Mum, Dulcie, was a pretty young brunette with long wavy hair and a penchant for smart dress suits, according to photographs in her album. She had first worked as an assistant to a dairy farmer’s family near Shepparton and there had met my father, in the late forties. I gather Dad was her first boyfriend and Mum may well have been his first girlfriend. She has a beautiful English complexion in the old photos and a beaming smile. They look radiantly happy, strolling confidently together at the local show or standing in front of Dad’s pride and joy, his latest Ford. By the time I knew my mum she was still a slender, attractive woman with plenty of energy, but I can’t say that I remember her as being totally happy. She often seemed worried, whether it was over finances, our welfare, or later, her relationship with Dad. But she was not sad or moody with us children. Mum was devoted to providing for us, making sure we had everything, from the latest bike at Christmas to piano lessons and the best clothes. I was to have three brothers and two sisters born after me, over a nine-year period. We were a reasonably close bunch of siblings, with the usual rivalries and jealousies. I guess I was most threatened by my burly brother Alan. He was eighteen months younger than me, but clearly much stronger and more athletic from an early age. He seemed to be everything I was not: good at football and cricket, a very masculine individual who had his share of scraps and fights with other boys at school. I would run for shelter if one of the school thugs came after me. Lynette was the eldest daughter and made an impression on 98
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people for her beautiful olive skin. As the child of two fairskinned parents, it was a surprise attribute but was later to be shared by cousins on my mother’s side. She was to become the family’s organiser, a role she played with a little competition from me, as the son with an especially close relationship to Mum. Both my sisters were to become a little competitive with and critical of Mum as they moved into their teenage years. Maybe that is a normal mother/daughter thing that I didn’t quite understand; maybe my sisters felt we boys got a better deal from her. Phillip was a jolly roly-poly baby and slightly plump child, who always seemed contented, quiet and unobtrusive. Many years later he talked about the frustration of being the middle child (fourth-born, to be exact) in a large family where he was not always noticed. Little Miss Independent, Julie, arrived next and was to make her mark early on, becoming dux of the school at eight, a testament to her intelligence and determination to succeed. She was undoubtedly Dad’s favourite, being asked to comb his hair while we watched TV on our rare Sunday-night-together sittings. In the days when Dad was to take up heavy drinking, Mum learnt that the easiest way to get money for the family was to get Julie to ask for the chequebook to be produced. Dad then wrote the cheques. I had a particularly close relationship with the last-born, Trevor. I formed a special bond with him, almost a father/son relationship. We called each other pet names like Yogi and Boo Boo, after the Yogi Bear cartoons we watched together in the mornings. When I left home for university, it was Trevor who would eagerly meet me at the station when I visited for the weekend. I like to think that Trevor had a good experience of an 99
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older male figure taking a nurturing role, something the other kids missed out on because Dad was not involved much in our care. Our house, an old weatherboard, was rundown. The wind would whistle through the floorboards and the carpets were threadbare. The walls were covered with the thinnest plaster, which easily crumbled when my brothers had a rough-andtumble fight or when Dad came home drunk and took out his frustrations on the loungeroom walls. There was never a functioning hot-water service—having a wash involved lighting a fire in the briquette heater in the laundry and running dirty creek water through a hose into the bath. We must have only washed once a week, when a bath was drawn on Sunday nights. Four boys were cramped into one room, with two of us in bunks; the two girls had a tiny little room mostly taken up by bunks. The kitchen was the largest room, with a big wood stove dominating. My mum would stand there during the winter with her skirt lifted up to the warmth of the fire, keeping her bum warm in the dreadfully cold house. Dinnertime involved the six of us kids competing for space on two long benches pulled up to the chrome-edged laminex table. Our staple diet was lamb chops or sausages with spuds and peas. Occasionally Dad would bring home a leg of lamb from one of the farms where he’d been shearing or from our uncle who owned a sheep farm nearby. Mum might make a pudding to go with the evening meal, but to be honest there wasn’t a lot of variety. Frozen foods hadn’t arrived and the quality of canned foods was deplorable. We ate the produce of the few vegetable growers in the district and we ate lots of lamb. Our evening entertainment when I was in primary school included Snakes and Ladders, Scrabble and listening to comic 100
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radio shows like ‘Life with Dexter’. Cards were forbidden, from memory—some of the Methodist anti-gambling values stayed with Mum. In the late fifties, television came along, and our own set went into the front lounge. Previously we kids had not been allowed into this room as it was reserved for visitors and formal occasions. But the black-and-white picturebox took over our lives. Hopalong Cassidy, McHale’s Navy, Leave it to Beaver. Family life turned around the little wood heater and the television in the room where Mum kept all her best crockery and silver in cabinets. We had a happy enough childhood, surrounded by lots of playing space, lots of animals and plenty of things to do. Our house was situated on two hectares of land, with low-branched trees suitable for cubby houses. The largest tree shaded the woodheap where Mum could regularly be seen splitting wood for the oven or lounge fires. Over the dirt road (which posed as a street) in front of our house was a pile of drums where Dad had set up a petrol bowser as a sideline business. It was amongst these drums that one day a girl called Cheryl and I played that childhood game of ‘You show me yours and I’ll show you mine’. I was just about to use my stethoscope (a stick) to examine Cheryl’s ‘what’s it’ more closely when Mum interrupted. I was in shame. I had done something unmentionable, something particularly naughty. I had tried to look at a girl’s private parts. From now on, Mum warned, I would have to stay away from girls like Cheryl. But I was in love with Cheryl. My family didn’t understand me. I was so angry (or guilty) that I ran away from home. I decamped over to the box forest behind the railway station. I think I lasted there for about an hour. Until teatime, anyway. I didn’t get up to much mischief. At school I was probably more of a goody-goody or teacher’s pet who loved being blackboard monitor or bringing in the milk from the front gate every 101
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morning. I would rather spend my school recess doing a job to help my teacher than running around letting off steam in the playground. I was enamoured of my teacher, Mr Russell. He organised all the upper school in one room of the weatherboard schoolroom with its high ceilings and quaint little wooden desks. We used fountain pens with inkwells, which was incredibly messy, with most children getting ink over some part of their body or clothing every day. For the mischief-makers, flicking ink across the room was a great way to pass time. Mr Russell was well liked and respected by the community for his teaching and involvement in community life: he was a Sunday school teacher, a member of the Wunghnu Progress Association, the tennis committee and numerous other civic groups. I looked up to him as an important figure in my primary school life and saw him as a firm but fair teacher. He gave me good literacy and numeracy skills through his focus on rote learning of the times-table and spelling. I was so keen to remain in his good books that I burst into tears one day when he threatened me with the strap for not having listened to some instruction or other. I think I was in grade 5 at the time and probably should have been a bit more grown up in my response, but it was the first time in my school life that I’d done something wrong and I couldn’t handle it. The other boys in the class probably thought I was a bit of a sissy. Most of them had got the strap at least once and regarded it as a rite of passage, even if they winced or cried in front of the class, as much from embarrassment as from injury. I don’t know what the other boys thought about my lack of interest in footy and cricket. Any boy growing up in a country town in Victoria in those days was expected to play Aussie Rules in winter and cricket in summer. I couldn’t play either. I used to dread sports 102
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day, the dreadful moment when the footy captains decided who they wanted on their teams. The selection process would invariably leave me and a couple of other non-athletic types unpicked and I would have to run the boundary or take the oranges out at halftime. I’m not sure what my dad thought about my lack of interest in contact sports. He was president of the local football club and must have expected his oldest son to mix in with the local lads. Alan was a big, broad-shouldered guy by age fifteen and became a star of the sporting field and was selected for state football squads. I can remember feeling pretty jealous of my younger brother’s sporting prowess and his ability to get patted on the back by the locals for his Saturday afternoon achievements. While I didn’t really want to be a footy star, I did want the approval of the adults around me, particularly my father. I vowed that I would show them all by excelling academically. If I couldn’t make it on the sportsfield, maybe I’d win approval by going to university one day. Every home match at the Wunghnu Football Club would see me bundled up in the back seat of my Aunt Gladys’ car, watching the action from its safety. The last thing I wanted to do was go out on the footy field and make a fool of myself with my lack of footy prowess. I preferred to drink tomato soup and eat chicken sandwiches while listening to my one-eyed grandmother. She would tell the umpire what to do when he didn’t give Alan a free kick or when the other side was playing it too rough and dirty. My mother’s sisters and my maternal grandmother spoilt me rotten as the first-born nephew and grandson. They were there for me at important moments in my childhood. They watched when I got awards for excellence at school, they picked me up 103
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after Cubs or Scouts and helped with a bit of extra cash. They didn’t care if I couldn’t kick a football and certainly never told me to go out and play with the other boys when I clearly preferred spending my time having afternoon tea with them. My greater affinity with women throughout my childhood and youth was undoubtedly grounded in my close relationship with my mother. As the first-born I had a certain favoured status in Mum’s eyes that probably rankled with my younger brothers and sisters. I was the first to face every childhood challenge: going to school, going to Scouts, learning to play the piano, things that Mum thought were an important part of growing up. She wanted me to do these things with the right clothes and the right resources. If I became an okay child, I think Mum felt that the others would follow. In truth I did a lot of things to please my mum, like learning the piano, which I loathed. I knew how to win her approval and that of the female members of my extended family. As the eldest I was entrusted with responsible tasks like paying bills at the butcher’s shop or general store and questioning the shopkeepers when they hadn’t done their adding up correctly or filled the order as my mother had wished. I learnt how to deal with adults in what seemed to be a terribly grown-up way and not with the mischievous backchat my peers were more likely to display. I was taken into confidence about some of the difficulties Mum faced with this or that person around town, hearing bits of gossip and detail that might usually have been reserved for adults. I knew I was favoured when it came to discipline. I guess I got the strap (a little piece of garden hose hidden in the second drawer of the kitchen cabinet) a few times but I more than once persuaded Mum that I was not the villain—when I was—and one of my brothers collected the punishment. I didn’t do it often 104
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but I still feel guilt about those little betrayals. As I grew older Mum placed a lot of trust in me. I think this contributed to my reluctance to tell her the truth of my life in later years—I was scared of weakening our bond. My relationship with my father was awkward and not particularly close. I think I was a little scared of his very physical, masculine world of shearers and rough rouseabouts. He was not someone to touch us at all and I gather had played no role in our rearing as babies: changing nappies and attending to a child’s squealing was woman’s work in Dad’s view of life. Later, in my teenage years when Dad became a heavy drinker, his violent temper and remonstrations with my mother made him so intimidating that we children did our best to avoid him. Not that he actually spent much time at home anyway: the local pubs were his preferred night-time hangouts. My father’s own family did not seem very open or communicative with each other, reflecting an austere, Protestant set of values, and I’m sure this influenced my dad’s reserve and hesitation when it came to intimacy with his own sons. The influence of my paternal grandfather, however, was a different story. Frederick Bice Menadue was an upright, Christian gentleman with a strong will and sense of conviction about what was right and wrong. His family had been brought up in a miner’s hut on the goldfield at Eganstown, a small settlement near Daylesford, Victoria. His father had eked a small living from the mines in the surrounding forests and from occasional farm jobs. The family had come out from Cornwall in the 1850s, leaving behind their lives as coal and tin miners. Protestant and Methodist values were strongly imbued in my grandfather and his siblings and he was very keen to impart them to each of his grandchildren. 105
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While I was to have some serious problems with my grandfather’s inflexibility on a lot of social issues as I grew into adulthood, I found qualities to admire in him. He would often relate stories of the difficult times his family lived through in the early 1900s, when life was a matter of subsisting on produce you grew, shot, trapped or bartered. In their teens, the girls took in sewing so that their brothers could further their education, with my grandfather studying science at the Daylesford School of Mines. ‘Mark my words, David,’ Grandad said to me when I was about twelve, ‘it takes a lot of discipline to succeed in life. I didn’t have much in the way of resources to help me through my education but I kept at my studies through dogged determination, working over a gas lamp late into the night. At school I resisted the temptation to go down to the pubs like the Irish boys all did. They all failed their exams and I passed mine with honours. I succeeded because of my faith in God, and my desire to help my family and do something constructive with my life.’ Such a ‘pulled up by your own bootstraps’ philosophy must have helped these Menadues to escape a childhood of relative poverty. The discipline of my grandfather and his brother John led them both to high-flying careers. My grandfather became a successful industrial chemist and his brother a highly respected secondary school principal. The sisters, while denied an education, were very much of the same stock. The great aunts were resolute, proper women with strong personalities and religious values. They believed that the way to succeed in life was through faith and discipline. I’m not sure how much these Protestant values influenced my early life, as my own parents were a little more relaxed about religion, although we did trot off to Sunday school for much of our childhood. An episode with my grandfather early in my mid-teens 106
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unsettled me for many years to come. Grandad was an occasional lay preacher at the local Methodist Church and I was taken along to hear his sermon one Sunday night. I was proud to think that it was my grandfather who was up there holding the attention of all these serious-looking churchgoers. Until I heard his sermon. It was a full-on fire and brimstone lecture about good and evil, right and wrong and the terrible consequences ahead if people didn’t follow the Bible. My grandfather was a considered, well-read man but the tone bordered on melodrama. He ranged over issues including censorship, the declining morals of society and the problem of homosexuality. I’m not sure if I really knew what a homosexual was, much less that I was one, but I sensed an element of unfairness. I thought about an art and craft teacher I had at high school who other students claimed was gay. Although I didn’t really understand what that meant, I didn’t think he deserved to be the butt of my grandfather’s high moral tone. It was clear that Grandad had firm views on society’s problems. He believed that people could change their ways and become better people if they applied themselves. My mother once told me that Dad had been made to change from being lefthanded because being right-handed was ‘proper’. One day Grandad sat me down and said I should do voice-deepening exercises. Apparently my voice was too high-pitched and I needed to ‘sound more like a man’. While staying at my grandparents’ place for the school holidays I had to do voice exercises to lower my pitch. Now I can see his concern was about the feminine side of my nature showing itself. I know something of my grandfather is still with me. He was interested in politics, as I have been. He was constantly writing letters to the Age, railing against individuals and groups that he 107
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thought were trying to undo the Christian mores of society. He was a prominent Liberal Party man, being a member of Sir Robert Menzies’ branch in the seat of Kooyong and was later branch president when Andrew Peacock and Tony Staley were the federal members. I venture more to the left in my political thinking, taking an interest in social justice and unionism, but I think his example figured in my choices. He was a man of words, hence his writing and lay preaching, and I pursued a career in publishing. And I would learn a lot about public speaking when thrown into the role of media spokesperson many years later.
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Chapter 10 Bullies
As a nervous child, I found the transition from a small, supportive primary school to secondary school a real challenge. There were many more bullies to contend with, too, only some of these were the teachers themselves. I was shocked and intimidated by the line-ups we had to endure at assembly as the school’s commandant, Mr Toomey, blasted us. This gaunt little man, with heavy black spectacles poised on his large nose, would bawl out the biggest and toughest boys and have them cowering in their boots. He made regular cock-of-the-walk inspections of every male student’s uniform, checking that their shoes and socks, ties and general demeanour were just right, with offenders sent off to his office for six of the best. His opposite number, prim and proper Miss Glover, measured the length of girls’ dresses. Numurkah High School had a population of about 600 students. The town was at the centre of a prosperous wheat, 109
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sheep, dairy and fruit area, but the school offered a full range of arts and science subjects at senior level. Later a technical wing was added to cater for the farmers’ sons who wanted to learn a trade. I enjoyed the academic focus of the school and worked hard to gain my teachers’ approval in subjects like French, history, science and English. I loved writing essays and doing assignments and I don’t think I ever missed submitting my work on time in my entire school life. My diaries from my schooldays note the marks I got and whether I managed to beat other contenders to be top of the class. This was my way of coping with not being one of the boys on the footy field. I was trying to get the message to would-be bullies that I had something on them. It was possible to intimidate a few of the guys with the idea that I had a better brain than them. English classes were memorable. I developed a schoolboy crush on my Form 2 (Year 8) English teacher, Miss Pascoe. She was an extremely pretty, slender woman in her mid-twenties who would sweep into the class with a coquettish flick of her long hair. She sat on the front desk. I liked her because she was pretty and she seemed to like me, often asking me questions in class, and because she taught my favourite subject. For other boys, there seemed to be different things going on. Miss Pascoe’s presence did strange things to them. Their hormones went into overdrive as they stared at her rather beautiful legs or bright red lipstick. I would find myself regularly being molested under the desks during these classes. I didn’t enjoy having my penis groped and didn’t respond in kind. Whether these boys wanted sexual experimentation with me or whether Miss Pascoe just got their sexual urges stirred, I’m not quite sure. 110
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If I loved the humanities, I despised physical education class. This was not only because I was uncoordinated and lacking in confidence but also because the classes were run by a bully of a teacher, Mr Moore. He had been a prisoner of war in Japan and we were told he only had one lung. But he was a big burly guy who scared the hell out of most of the kids, particularly me. He would get us all in line for the pommelhorse and watch us try to vault over it. If you failed, down would come this huge, bear-like hand on the horse. ‘Try harder or I might not miss next time.’ If you did something stupid in class, which I seemed to know how to do often, you were lined up for ‘tickle torture’. Everyone in the class had to tickle you until you couldn’t take it any more. What sounded like a fun form of punishment quickly became physical assault as the rougher boys dug in their nails or the odd punch. There were also Wednesday afternoon’s compulsory sport periods. I held my breath and endured that time of waiting on the sidelines to see who got picked for the footy or cricket side. I would usually end up playing with the leftovers in a game of volleyball or tennis, which was fine with me. But I had the feeling of being somehow inferior for not being a sporting hero, or even being passingly competent at something which seemed totally natural to other kids. I developed close friendships with several like-minded individuals who loved academic achievement and were not particularly interested in sport. One of them, Russell, was someone I was to spend an enormous amount of time with, staying weekends on his family’s dairy farm and eventually working in his family’s supermarket during school holidays. Russell had a dry wit, and what some people would call a camp sense of humour. He had the hand gestures to go with it and was 111
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to gain the nickname Pansy at school. One day one of the lads in woodwork class said that I was more of a pansy than Russell ever was. I feigned a look of shock but secretly I knew he was right. Russell was to go on and get married whereas I, as the best man at his wedding several years later, was still sitting on a secret about my sexuality. I continued to have trouble with bullies throughout my secondary school life. I travelled on the school bus every day and was unfortunate enough to have a bully as bus prefect one year. His name was David Farrar and when I discovered that he became a policeman, I was hardly surprised. His regular entertainment on the ride home was to place me on the wheel rump in front of his prime seat. I was his little toy that had to stay seated and wait for his command. To add to my misery, he pulled my shorts down in front of all the other kids to provoke a laugh. From memory, some of the kids would laugh but a lot would not. I think they hated him almost as much as I did. Occasionally physical violence occurred in the classroom. One of the tough but not very bright Andrews boys shirt-fronted a teacher in Woodwork. I guess I’d worked out that Mr Stokes was effeminate and certainly that he was uncomfortable taking this boisterous lot of boys but I didn’t realise he might be gay until this boy had him against the blackboard. ‘You’re a fucking poof,’ he yelled, to everyone’s amazement. ‘Don’t tell me what to do.’ Poor Mr Stokes ran out of the classroom and before long Toomey appeared. Andrews was instantly expelled but it didn’t save Mr Stokes. He had some sort of breakdown and left the school soon afterwards. He was the first person I’d come into contact with who was probably gay and it was the first time I’d heard gayness mentioned. When one of my friends explained to 112
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me afterwards what gay men did together, I was shocked and disgusted. I felt sorry for Mr Stokes though, and have often wondered if he came through that experience all right. My scouting days played an interesting part in my adolescent development. Lord Baden Powell believed that scouting made men out of boys. I developed my masculinity in Scouts. I quite liked going camping with my pack at the Murray River, putting up our tents with poles bound by specially learned knots. I became patrol leader of my pack of five likely lads and I thrived on it. Once we did a gruelling thirty-kilometre walk through hilly terrain, competing against other Scout groups, and managed to get to the destination first. My group won that competition called the Hoadley Hide and my own decision-making and map-reading skills had a lot to do with it. I enjoyed being a leader and saw that I could get respect from other males without being a football hero or the top dog in a fist fight behind the shelter shed. Of course there was a sexual undercurrent in Scouts, which I didn’t quite understand but undoubtedly enjoyed on some level. One of the more embarrassing moments in my life would have to be the time I was ‘nuggeted’ on my first-ever camping trip. It was a well-known initiation ceremony for newcomers to the troop: you had to have your testicles covered in boot polish. Nugget was the popular brand in those days. The raiding party would arrive just on bedtime and you’d be held down while the dirty deed was done. I was worried that they’d think my penis wasn’t going to measure up. I pictured the group standing around and having a laugh when they pulled my pyjama pants down. In a curious bit of childhood logic I decided that I would will myself to have an erection, to make it look big 113
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enough. I’m not sure what the other guys thought—I have no doubt it must have turned on a few of the more sexually adventurous boys. I thought about my own sexual feelings in quiet moments alone and I was not really sure what was going on. I did have girlfriends for much of my later school years but they were friends who I’d walk home and have pleasant conversations with. They didn’t get me going like the boys’ stories in Woodwork. I was to realise much later that I got turned on seeing the sexual responses in the guys as they told me about their exploits. I was sexually interested in boys rather than girls but there was no one at all in my group of friends to explain that home truth to me. High school did become more enjoyable the older I got. Prejudice was less prevalent in the senior years. I was one of the higher achievers and gained some respect for being intelligent and articulate in class debates. I developed quite a flair for public speaking and my English teacher pushed me into entering a competition called ‘Youth Speaks for Australia’ on the local television station. I won the competition by giving a speech about the need for youth to take responsibility in the local community and to show leadership. I’m not sure where those sentiments came from, but I had become more aware of my ability to take leadership roles. On my initiative we set up the Wunghnu Teenage Citizen’s Club to organise dances and social nights at the mechanics institute. One such event was a fancy dress ball that a small group of us organised and which I compered. Here I was, dressed in one of Mum’s long flowery frocks, with a scarf tied around my head, parading as Sadie the Cleaning Lady. I guess I would have been fourteen at the time, just young enough to get away with wearing 114
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women’s clothing to a fancy dress ball without being scorned. Now I wonder how I got away with blurring gender roles. In my final year at high school an almost unbelievable thing happened. I was elected captain of one of the best sporting houses in the school, Christie House. That the House should decide on one of the most unathletic students in the school to be their captain was bizarre. I egged the students on to greater things on the sporting field and became their number one supporter. My final exam results were good enough to get me into Melbourne University with a studentship for teacher training. I looked forward to going to the city and mixing in a world where ideas and study were valued, where sporting achievements were not mandatory and where life would not be regimented by cranky old senior masters or bullying Phys Ed teachers. I was surprised by how few of my peers harboured similar ambitions. Only one other girl went to university, with the remainder of the class preferring to pursue employment or further education close to their families. I think I was keen to leave town for other reasons, too. Some of the young lairs had started to give me a hard time whenever I walked down the main street of Numurkah. They would sit in their hotted-up cars and yell out comments like ‘poofter’ and ‘pansy boy’. Not everyone was like this, of course. I had good friends that I’d known from high school or Scouts, who seemed to accept me without question. There were particular individuals though (some frustrated bully boys, maybe some latent gay men themselves, I don’t know) who enjoyed singling me out for this treatment. I didn’t know of anyone else, except Russell, who was harassed. But many years later I met two guys who had lived in 115
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Numurkah at this time. They were obviously gay and copped vilification because of their difference. The local police sergeant decided, in his ignorance, that because they were gay, they were probably paedophiles as well. He banned them from visiting the local swimming pool because they might molest young boys. One of them, I later discovered, committed suicide in his late twenties.
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Chapter 11 The Golden Nine
The cultural divide between the country and the city seemed huge in the early seventies. I had become familiar with the city in regular trips to my grandparents’ home in suburban Camberwell during the school holidays. As a child sitting in the back of my parents’ Ford Customline, I would be a little frightened by the volume and noise of the traffic and what looked like huge multistorey office towers. The green Commonwealth building on Victoria Parade (since demolished) seemed to be so tall when I was a young boy, it made me giddy. Years later I was surprised to note that it was only about fifteen storeys high. Over the years I adjusted and enjoyed travelling on trams, visiting the bustling shopping centres and the theatre. The pantomimes that my grandmother took us to on school holidays were a little bit of magic, a world apart from the country. There were many pleasant aspects to life in Melbourne that I settled into once I’d gotten over the fear of being in a big city and the change of pace from dear little Wunghnu. My experience as an undergraduate fronting to classes at the University of Melbourne was unsettling. My lectures and 117
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tutorials seemed to be filled with ‘Prues’ or ‘Phoebes’ from some of Melbourne’s finer private schools, apparently taking the Arts option to fill time in their social schedules. I had little in common with most of them and at first was embarrassed to mention that my old school was Numurkah High: it was hardly an entree to a barbecue at Prue’s or Phoebe’s place. Later, as my political and social awareness developed, I was to be more proud of my background. Then I enjoyed telling others that I came from a small country town. I had made it into these supposedly hallowed academic halls despite the class divide. University life was saved for me by the friends I met at Warwillah. Set up to house country boys with teaching studentships, the hostel was a refuge and a place to develop close, nurturing friendships. It was run by a rather pompous supervisor, Mr Taylor, who wore his academic gown to dinner, called us ‘Mr’ and tried to create the impression we were at a hall of residence. He once asked us not to talk to the housemaids as ‘the staff are beneath us in the scheme of things’. Of course we were having none of this nonsense. We were young country boys with no interest in standing on ceremony. I was instantly attracted to a core group of nine individuals. We became so close-knit that we called ourselves the ‘Golden Nine’. Most of us hated sport and were much happier heading off to the pictures or to the local pub for a counter lunch than we were about running around Albert Park Lake or going to footy training. We had a lot in common and the fact that a number of the others were excellent students helped immensely with my studies. In my second year I discovered sex. It is hard to explain how I started to suspect I was gay. The mere fact of being physically attracted to someone of the same sex was not enough to give me 118
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the idea that I might have a different sexual identity from most of society. You assume you are the same as everyone else until something momentous happens to change that view. This happened for me one frosty July night when I found myself walking down Toorak Road after going to the movies. I have no idea how I knew that this was the place to meet another male to have sex with him but I must have looked like a likely candidate as the lights of a car flashed to high beam. I didn’t understand anything about this code or what I was in for but within minutes I was sitting in the car with an attractive enough man in his early thirties who whisked me off to his flat in Caulfield. The next day, as my conquest drove me back to the hostel, I felt a sense of shame and embarrassment that took some of the gloss off the exciting discovery of last night. There was something right about what had happened, but I couldn’t bear the thought that one of my friends would see me getting out of a car driven by an unfamiliar older man. I asked him to stop several blocks away and rushed inside my room. The loneliness and confusion of that time had me seeking out reference books in the medical library at university. Was homosexuality an illness or a normal part of life? Was I going through a stage that would eventually resolve itself? I was too frightened to discuss my fears with any of my friends for fear they would not understand or might condemn my behaviour. Surprisingly the topic of gayness rarely came up, even in the latenight, alcohol-sodden, deep and meaningful conversations we had in each other’s rooms. It seemed like a taboo topic. Coming to terms with my sexuality was slow and tortuous but it was focused by a misadventure with LSD. My naivety about drugs was so great that I didn’t know the difference between marijuana and LSD. I was keen to at least try 119
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something a bit different from alcohol. A friend organised a night where four of us would try drugs at his apartment. I thought we would be trying the relatively harmless marijuana. Instead, I was presented with a small piece of tissue paper and told, ‘Enjoy your trip.’ I was tentative but went ahead anyway. An hour into the experience I was starting to realise what I’d done. This was not marijuana—how could I be so stupid? I had read enough about people developing schizophrenia after LSD that I started to become fearful. My friends were rolling around the floor laughing uproariously about the way the cups and saucers were moving on the table and marvelling about how beautiful their hallucinations were. I was in mortal terror. My mind went into overdrive to maintain my sanity. As my friends’ hilarity started to wind down and they made moves to go home and sleep it off, my nightmare began to pick up pace. On my way home, the weird jangling sounds of the trams became mixed with distorted, scary images which jumped out of trees or from behind fences. I was incredibly frightened and seemed to have nowhere to go. My friends were all in a mellow, rosy mood, desperate for sleep. I guess they thought I would sleep it off as well. Fortunately a friend, John Andrews, was still awake at the hostel and he stayed up with me the whole night as I tried to come to terms with the demons within. That trip lasted for three days and included the added nightmare of my relatives turning up unexpectedly in the middle of it. They had come to surprise me and take me out to lunch. My aunt had a huge distended witch-like nose, my cousin had blue hair and very wild eyes. I played with a T-bone steak at the restaurant but couldn’t cope with eating, given the turmoil in my mind. The nightmares and hallucinations subsided but my fears did not. I was traumatised by this experience and convinced that my 120
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mind had been permanently damaged. Something had changed in my head. I was never going to be the same person again. In my desperation I went to see a psychiatrist at university. He put me on an anti-anxiety drug, Serapax, which he said would help with this type of experience. Before long he put his finger on what he felt was the real source of my vulnerability. It wasn’t drug-related at all and I would recover completely from it. My real problem was in coming to terms with my homosexuality. Several months later my psychiatrist finally had me admitting that I was probably gay—maybe bisexual, but probably gay. He told me it was a perfectly natural, normal way to be and he had many patients who came to him with similar issues about their sexuality. He acknowledged that life was difficult for gay people, given the attitudes of society and the lack of law reform to decriminalise homosexual acts, but he was sure things would change one day. I was incredibly grateful for his analysis and his words of comfort. Homosexuality was still rarely talked about at that time and I was fortunate to have found an enlightened man who had broken through the hypocrisy that existed even in medical circles. The liberation I felt—the sense of acceptance about being gay—led me to take bolder steps. At the beginning of my third year, one of my friends moved out of the hostel and into a flat to start his teaching career. We went around to visit with copious bottles of Stone’s Green Ginger wine, which was cheap and popular with students then. When everyone was inebriated I took the plunge and told the group that I’d had sex with a man. The floodgates opened. Seven of the nine of us had been doing the same thing in secret for the past couple of years. We were all gay—even the two who didn’t admit it came out later. The relief on everyone’s face was palpable: someone had confessed to the 121
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secret and now it was all right to talk about it. I was pleased to have been the catalyst for that breakthrough. The group delved into a much more active exploration of the relatively hidden gay underworld that existed in Melbourne.
The gay liberation movement had begun in earnest at the Stonewall Bar in New York in 1969, when the gay clientele, reacting against harassment by the police over many years, began a riot. In Australia there was little militancy happening beyond the establishment of gay liberation groups at universities and law reform groups such as CAMP (Campaign Against Moral Persecution). CAMP began in Sydney and was one of the first groups to fight against antiquated laws around Australia which made homosexual acts between men illegal and punishable with prison terms. In Melbourne a group called Society Five fought the same battle. Years of oppression from police and by the law had forced a lot of the gay bars in Melbourne to be fairly discreet about their publicity. To find them you had to be part of informal local networks as there was no gay media at the time. There were a few places that were relatively well known as being gay and these were usually (although not always) tolerated by police. Our group decided to brave a visit to the infamous Woolshed Bar in the basement of the Australia Hotel. There we discovered a potpourri of types, classes and individuals that I had never seen before in my life. The ‘white-shoe brigade’, as we called them, were the older gay men who came out decked in smartly ironed gaberdine slacks, cashmere sweaters and pointy, often white shoes. The queens or the highly effeminate guys were often dripping with jewellery, stones the size of small boulders and 122
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chains and bracelets jangling everywhere. There were men in suits trying to look as anonymous as possible, almost as if they might blend into the furniture. And there were the rough butch guys in flannel shirts who looked like they’d just stepped off a building site. These people seemed a collection of extremes to our group of innocents. In many ways we were seeing the last vestiges of the camp world which had existed for those decades when sex roles seemed black and white, much as they did in the straight world. In both worlds, people identified as ‘butch’ or ‘fem’ and played along appropriately. Everyone was called ‘camp’ rather than ‘gay’, which was a modern word with a slightly political overtone. Some of the butch guys looked positively dangerous and I was told later that it was common for prisoners newly released from jail to make their way down to the Woolshed to pick up a queen who would put them up until they got on their feet—if they didn’t frisk their hosts of their possessions first. I gather that the camp scene had been centred in the city for much of the sixties, with hotels like the London, the Australia, the Graham and even the Windsor attracting a crowd of city workers and people coming in from the suburbs. In the era of six o’clock closing, the bars operated as a meeting place for people to find out about private parties in people’s homes, which was where most gay life occurred. The suburbs didn’t have anything resembling a camp pub, with the exception of the Prince of Wales Hotel in St Kilda—which my older gay friends say was always a watering hole for homosexuals, as it remains today. South Yarra was a more tolerant suburb where gays could feel comfortable. I can remember entering Her Majesty’s Hotel in Toorak Road, South Yarra, to attend their famous Saturday-night bash. 123
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The bar was owned by a gay man called Ron Phillips whose camp nickname, ‘Maisie’, gave the pub its name in the gay community. I can’t remember much about the experience except that it was so crowded and smoky, I could hardly relax and have a conversation with anybody. Gay people seemed to like being in the highly crowded places deemed to be ‘in’. And there were so few relatively safe places for gay men to go. People like myself were creating a demand that would be catered for only when gay nightclubs started to open later in the seventies. There was also the Tok-H, short for the Toorak Hotel, in Toorak Village. This had a semi-regular gay crowd, where I’m told the odd league footballer visited from time to time. I was taken to a classy piano bar called the Treble Clef in Toorak Road where the more well-heeled and pretentious queens were known to gather. As a young student teacher I was in awe of the glamorous lifestyle when an older businessman took me there after picking me up at the Tok-H. I was still a novice when it came to all things gay, including sex. I was still living in an Education Department hostel, a new one called Alan Ramsay House in Queens Road. It was impossible to bring a sexual partner back there and I’d hardly have wanted my fellow residents, largely conservative country boys, to have found out I was gay. My student-teacher salary did not permit me to have a wild social time, and with the exception of the odd pick-up at a bar or some occasional toilet sex, I really had very little intimacy, even of the briefest kind, in my life. Prompted by the confessions of my friends on that night when I broke the ice about being gay, I explored the basement of the university’s library to see if their stories about toilet sex—gay beats—were true. It didn’t take me long to see that the writing on the walls was not there as a joke. If you hung around long 124
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enough in a cubicle and looked through the little holes that had been miraculously drilled in the walls, you soon found some action. It was furtive, ever so brief sex, always conducted with one ear listening for a sign that someone suspected what was happening. One side of me thought this was all dirty and disgusting—what would my righteous grandfather think of all this?—but at least I knew that there were others like me walking around the campus. Some of them happened to be incredibly hunky as well. The ‘Golden Nine’ continued to be close. While most of us were a sexually adventurous lot who had no trouble picking up at the bars, we were not (to the best of my knowledge) interested in each other sexually. This was important, as I saw many young gay men arrive on the scene with few supportive friends around them. If you were young and attractive, people wanted you for sex and not necessarily for companionship. You could become quite lonely and depressed, thinking that the only way you could develop trusting friends was to become someone’s sexual partner. I was grateful that I had these friends to discuss the gay scene with, in an objective and sometimes critical way. It was not and would never be my whole world. But I feared this was not the case for other young guys I saw at the venues.
This social whirl and the discovery of my sexuality came to an abrupt end (for a while at least). In 1974 I had graduated as a trained English and history teacher and I was bundled off to the bush, to Rochester High School in northern Victoria. As someone brought up in the country, I had a fair idea of what to expect, including what the locals might think of any so-called ‘deviant’ behaviour. 125
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I had to hide my sexuality, and my city friends, from the residents of this small dairy-producing town that was in many ways similar to Numurkah, and only 80 kilometres away from Wunghnu. I had not told my family that I was gay and I was certainly not about to announce it to this conservative community in Rochester, either. My solace was to be a couple of members of staff who I confided in and who were totally accepting. In many ways a lot of the staff—largely young, city-bred individuals—identified as outsiders in this community too. They had been to university through the liberated sixties and seventies, and lived a relatively promiscuous lifestyle courtesy of the contraceptive pill and sexual liberation. Rochester was a little suspicious of these ‘city ways’ and teachers were regarded with a cautious eye. We were a scruffy bunch. A good number of the male staff had long hair down to the shoulders and wore beards or goatees. I had grown a goatee to look older than my 21 years, to try and command some sort of respect from my students. We were dressed in outrageous clothes, fashionable in the city maybe, but a little way-out for a quiet rural lifestyle. Young male teachers would regularly front for school in wide flares, tie-dyed shirts and high, stack-heeled shoes, with the females often wearing something similar. Bright colours and swirling psychedelic patterns were worn without a second thought. These were the fashions we had picked up during our university days, the fashions that went along with rock groups like the Beatles, Rolling Stones and Cream. Concessions were not to be made because we were now in a respectable profession like teaching. Ties and jackets were certainly out for younger members of staff, and while these liberated values were accepted by the school community, some of the locals were undoubtedly concerned about the example we were setting for their children. 126
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I moved in to a delightful cottage to the north of town, overlooking the picturesque Campaspe River. Problems started when the local Presbyterian church got wind of the fact that I was sharing the house with a female teacher, Lyn Harper. ‘What an outrage!’ members of the congregation said to our landlords, the Slootegraafs. ‘As parish members you shouldn’t allow such immoral behaviour,’ was the tone of their objections. Our landlords stood their ground and refused to succumb to this moral blackmail. In fact they decided to leave that particular church and take their worship elsewhere. If only the parishioners had known the true nature of our relationship (platonic) and the details of my sexuality. There was some conjecture about my relationship with Miss Harper amongst the students, too. While a few of the rougher kids around the school had me tagged as a ‘poof’, there was an element of doubt because of my living arrangements. Lyn overheard a conversation in the girls’ toilets at school one day, with two girls discussing whether Mr Menadue was gay or not. ‘Oh no,’ said one authoritatively. ‘He’s living with Miss Harper.’ ‘That randy old bull,’ said the other. One Saturday morning I rose from my bed and opened the curtains to find Christian, a third-form student, sitting on her horse and straining her neck to see if I was in fact sharing a bed with her typing teacher. Poor old Christian was never exactly sure what she saw as I eyeballed her in my pyjamas. She fled across the paddocks but was never able to confirm or deny that I slept with women. Even though I was almost certain that I was a gay man, I did not knock back an opportunity that presented itself in my first year at Rochester when a young female set her sights on me. A 127
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girlfriend of another teacher arrived on my doorstep one Saturday afternoon. She’d told her boyfriend that she needed to use the stereo at my place, which was better than his old contraption. I was at first ignorant of her intentions but was soon alerted to what was going on when a hand rested on my leg. My first instinct was to recoil and explain that I was gay, but I thought better of it. Why not use this opportunity to explore my sexuality? Maybe I was bisexual. How could I go through life having never had sexual intercourse with a woman? The experience was exciting enough, I guess. I certainly climaxed without a problem and my partner for the afternoon was impressed enough to want another round a few weeks later. To arrange a meeting she contacted me in the staffroom during recess one morning and asked if I’d consider going away with her for a weekend in a caravan at nearby Lake Eppalock. Her boyfriend was sitting nearby and I answered in mumbled tones in the hope that he had no idea who I was talking to. I liked this man very much and felt some guilt about what was happening, although I think that they had an agreement not to be monogamous. The experience this time was less than exciting. I was embarrassed to be spending this supposedly lustful weekend in a caravan that happened to have the most dodgy suspension you could imagine. My partner thought that this weekend was to be about sex, sex and more sex. I imagined what the elderly couple fixing their fishing rods next door were wondering while we were playing at sex games in this rocking caravan. I wanted to leave by the end of Saturday, now convinced that I was definitely a gay man. If I was turned on by the female body, I would have responded to this sensuous and attractive woman. If I’d been excited by female breasts, I’d have had nothing to complain 128
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about as she was very well endowed. It just wasn’t right and I didn’t have my heart or libido in the whole event. I received a phone call in the staffroom several weeks later. Her period hadn’t come and she thought she might be pregnant to me. Lordy, lordy, I was going to be a father. What a development that would be: my first taste of heterosexual sex and my sperm had done what nature intended it to do. Fortunately this turned out to be a false alarm. I was grateful for that. I have sometimes wished I could have been a father but that wasn’t the right union. Gay men can successfully organise fatherhood but an unplanned one like that would have had lots of hassles, probably for the rest of my life. I had always had a strong desire to be a teacher: I wanted to help others, particularly to show people how to express themselves well. But I was not ready to discipline difficult teenagers who thought English was a ‘play subject where you had to talk about your feelings and other bullshit’. I’d had little experience in commanding a class of 30 to keep quiet. The more wily members sensed that I didn’t have the strength to pull the trouble-makers into line or the experience to play the dynamics of the classroom to my benefit. I used to marvel at the way diminutive female teachers with tiny voices were able to maintain perfect discipline and quiet in their classrooms. They had learnt techniques that I never really managed to master and had certainly not been taught at teachers’ college. More than once my 2B English class came close to a full-on riot. I walked into the class on a hot February afternoon and was stunned when there was absolute quiet. Something was up. I saw Number One mischief-maker Susan Pollett stifle a wicked grin. I commenced the lesson and then, ‘thump’! Pint-sized Brian Letcher had hidden himself in the coat locker. He gave the door 129
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a kick and the whole locker came tumbling down with him inside it. Needless to say the whole class erupted into laughter and riotous behaviour. Pencil cases were thrown and desk lids were banged in appreciation of the great victory over ‘Mildew’, as the class had not-so-affectionately decided to call me. My only consolation was the dent on Letcher’s nose as he extracted himself from the locker. I lasted for two years at that school. I got some satisfaction from teaching the senior classes in literature and English, where iron-fisted discipline was not necessary. The intimidation of having to pass English as a compulsory subject seemed to make students considerably more attentive in class. I enjoyed mixing with a bunch of young, enthusiastic teaching peers and we clubbed together to protect ourselves from a not always empathetic local population. After two years, though, my nerves were taut from trying to get on top of the junior classes. I was lonely, and restless to explore my sexuality in the more tolerant and relatively anonymous city.
The trials and tribulations of my career took their toll on me but events in my family life in the mid-seventies were more traumatic. My first year’s teaching was punctuated with fairly regular trips over to Wunghnu where my parents, two sisters and youngest brother still lived. Usually my father was away, having decided on a career change in his early forties, leaving the back-breaking work of shearing to become a meat inspector for the Department of Primary Industries. The purpose of my visits was to check on my mother’s deteriorating health, caused by severe asthma. As an adolescent I would listen anxiously as Mum sat in the kitchen to all hours of 130
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the night, coughing hard and trying to catch her breath. While there had been some recent breakthroughs in treatments for asthma, Mum was spending increasing periods of time in hospital after episodes that put her life in danger. The central reason why Mum’s asthma was so bad was clear to all of her children. We knew that it was a result, in no small part, of the enormous tension in my parents’ marriage. As a child I had listened to my father’s often drunken ramblings about how hopeless my mother was, how she was off philandering with the neighbour or causing all sorts of problems for the household. It was hard for me to have much sympathy for Dad. I lay there and cringed as the obscenities flew through the walls of their bedroom, and flinched as I heard screams of fear when Mum thought she was about to be struck. I felt helpless to intervene against my strong burly father. It’s hard to know when the difficulties began in my parents’ marriage but I became aware of the tension in my early adolescence. My father doesn’t figure strongly in my childhood memories although I do fondly remember him driving the whole family in the Ford Customline to Lorne for summer holidays. We would hire a caravan, go swimming and eat fish and chips on the beach. It’s a vague but pleasant memory in a childhood largely dominated by my mother, who was always there, organising my schooling, my clothing, my social life and supporting me through pretty much everything else. Dad was a fairly quiet and unobtrusive figure in our lives when he was sober, occasionally breaking into moments of jolliness when he would cook some amazing frypan concoction for the family on a Sunday night. That was unless alcohol was involved. Perhaps he drank because he mixed with a heavy-drinking bunch of shearers, 131
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perhaps because of the physical demand of his work or because he felt like he couldn’t cope with the difficulties life presented him with. I don’t know. Maybe he wasn’t cut out to handle alcohol. When he was drunk he became a verbally violent, extroverted individual. We would try to avoid him when he entered the house late at night. To the best of my knowledge he was never actually physically violent towards my mother. He would occasionally criticise one of his offspring, but never threatened us with any kind of harm. It was the verbal brawling that intimidated us along with the occasionally cruel episodes when he would lock my mother out in the cold, causing the onset of serious asthma attacks. At one stage my father was transferred to work in Tasmania for six months. I breathed a sigh of relief that Mum would have some freedom from the nightly tirades at last. But a curious thing happened. Dad’s absence only seemed to make Mum’s asthma worse and her periods of hospitalisation more frequent. I went to pick her up at the Numurkah Base Hospital one day to be told by her treating doctor that Mum had only just survived the previous night’s attack. ‘She’s lucky she has a strong heart because we were close to losing her,’ he said, ominously. Mum’s weight had dropped dramatically and her skinny arms and legs made her look like a scarecrow. Her wheezing and coughing meant that she could hardly walk any kind of distance. We decided that Mum was going through heightened tension around the times Dad was due back for a visit. The period apart from Dad had not allowed her to relax or pick up her strength again. Rather, the fact that she no longer had that daily tension caused her to drop her defences. Contemplating her precarious situation, she ended up in an even more stressed condition. 132
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As the oldest in the family I felt I had to do something, somehow, to protect my mother’s health. I figured, rather simplistically, that the way to make Mum better was to write a letter to Dad and tell him not to come home any more. When I reflect on this, it hardly makes any sense. Why would Dad up and leave his house, the town he knew so well, his friendship networks and, his family—all because of a rambling letter from his eldest? He let me have it when he finally arrived back home one night. But he wasn’t as ferocious as I’d expected. Deep down, I’m sure he knew that the family was hurting and that my letter was an emotional plea for something to be fixed, for my mother’s sake. During my first year of teaching at Rochester, Mum’s health deteriorated further and asthma pretty much ruled her life. As the summer holidays approached in 1974, a couple of aunts, my eldest sister and I went to visit a lawyer’s office with Mum to discuss her legal options. The lawyer, a brusque young smartsuited type, made much of the newly legislated Family Law Act, passed by the Whitlam Labor Government. ‘Divorce is a much simpler proposition now. After a year apart your application for a divorce will go through unless there’s an appeal by your husband in the meantime,’ he said to Mum with unsettling precision. And what about the process of leaving the family house? ‘Just up and leave and take all the furniture. It’s the only way as you will be still looking after a number of children, Mrs Menadue.’ It seemed so straightforward and yet so cold and calculating. This was a momentous and highly emotional decision and Mum was expected to make her mind up on the spot. The lawyer had more customers in his waiting room and he was busy. She agreed to instigate divorce proceedings without time to reflect on the consequences. 133
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It was a decision expedited by my mum’s sisters and their husbands, who made a flat available in Numurkah for Mum and my siblings. It seemed like an act of stealth to me, to be removing all the furniture without my father’s knowledge while he was away in Tasmania. It was incredibly difficult to just walk out of a place that had been my home for close to twenty years. As creaky and rundown as it was, it had many happy memories. As the last load of furniture was placed on the trailer, I decided to leave a short note for Dad. ‘Mum can’t handle it any more. Love David.’ I knew it was going to be a devastating experience for Dad to walk into the emptiness, and I couldn’t bear to think he would have no communication from any one of us, however brief and inadequate. Such things could not be dwelt on now as I tried to focus on restoring Mum’s health and getting her established in her new home. Any restoration of my relationship with Dad would have to come later, if that was possible. The next few years were hardly much of a relief for Mum and Julie and Trevor, all living in a cramped little flat. Eventually a Housing Commission house was found for them. I wondered if Mum was heading for a major nervous collapse. She claimed she had seen Dad in the driveway, trying to knock the door down one night. She was worried that other women in the town would not like her—as a divorcee, they would think she was after their husbands. Mum was admitted to a psychiatric hospital in Shepparton and I spent as much time as possible visiting her in this rather intimidating, antiquated facility. There were large wards of ten or more beds, with all sorts of deranged behaviour going on at night. There seemed to be no privacy or peace in this environment, which was supposed to settle people down and help them recover. I wondered whether it was really the right place for 134
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Mum, who was in a highly fragile state, trying her hardest to control the paranoia and disordered thoughts running through her mind. I sat with her, holding her hand or stroking her hair, trying to help her find moments of calm. I had just completed my second year of teaching and I was feeling a huge degree of self-doubt about my own direction in life. I felt somewhat of a failure for my inability to control classes. I suppose I had always known that I was highly strung, and it was commented on more than once that I had a similar nature to my mother. I felt able to connect with what Mum was going through in the several visits to the hospital that she was to have over the next year or so. Mum was eventually to find her feet again when a psychiatrist at the hospital introduced her to a mental health support group called GROW, and to AL-ANON, a support group for families of alcoholics. Mum found strength in realising that many people experience anxiety and use a number of techniques to help them through difficult periods. AL-ANON taught her that alcohol is a destructive force in some people’s lives and that it is not always the alcoholic’s fault when it takes over their life. It is a curious experience, to help your mother through a nervous breakdown, particularly when you’re reasonably vulnerable yourself. Your mother, who has appeared as a source of strength and order in the world for most of your life, is suddenly weakened and clamouring for support to stay sane and rational. You reach inside and ask what you have to offer. What you have to offer is your love, compassion and the comfort of just ‘being there’. That you are sitting there caring and not making judgements is enough. Mum was to return that love, patience and reassurance to me many times in my later life, when I was to go through my own health crises. 135
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Chapter 12 Secrets
Many gay men compartmentalise their lives. They develop stories to explain away the fact that they haven’t married or even create a girlfriend when someone inevitably asks questions. They adopt a certain tone of speech and much more controlled language when they are mixing with a straightlaced crowd unlikely to appreciate their camp sense of humour or the particular form of in-talk they might share with gay friends. This was very much the situation for me in the seventies— even for much of the eighties—when I was hiding my sexuality from my family. I would just smile politely when an aunt would eagerly ask me when I would be bringing home a girl. I was not even prepared to reveal I was gay to my brothers and sisters, who I felt quite close to and I guess wouldn’t have been particularly shocked or upset by the news. My sisters were courting with their would-be husbands. You had to use ‘straight talk’ with 136
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these guys over Christmas dinner—discuss cars and tractors, ask interested questions about farms and farming, footy or cricket. I was neurotic about my great secret and ever so careful about letting anyone pick up the slightest clue that I might be gay. My greatest fear was that Mum would not cope with this news, even though I was sure she would never reject me or stop loving me because of it. With Mum’s mental and physical state, it was not the right time to tell her. She had so much to deal with that such news would have to wait until a time when she was stronger and I felt a little more confident about myself and my sexuality. While I was close to Mum during her nervous breakdowns, and had always felt a strong bond with her, I was placing a distance between my family life and my social life that was to continue for many years. My visits to the country would be limited to relatively quick trips during Christmas or Easter or to attend family functions such as funerals or weddings. When I was finished with a family function I couldn’t get in the car fast enough to get back to my social life in the city, to immerse myself completely in the gay bar scene I rediscovered after my spell at Rochester. I don’t think I spent many nights at home in front of the television for the rest of the seventies. In 1976 I was 24 and once I’d shaved off that horrid goatee. I looked attractive enough to be in demand with the sexual cruisers who circled the bars on closing time. I was making up for my forced abstinence in the country and found it fairly easy to have sexual liaisons. Large dance parties were organised under the name Spangles and were held at the Rembrandt Room in Hawthorn or at the Windsor Regis ballroom in Windsor on a monthly basis. Bigname pop stars like Johnny Farnham and Marcia Hines would perform and the dances were packed to the rafters. Even straight 137
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people wanted to get into these popular events, which were a precursor to the much larger warehouse parties of the eighties. There was also the Dover Hotel, opposite Trades Hall in Carlton, where hundreds of gay men and some lesbians would gather upstairs on Saturday nights. My first visit to the bar was a horrible experience that almost had me cut across the arm by a broken beer glass. Two very butch dykes were having an extremely violent stoush in the crowded bar and gay men were streaming everywhere to protect themselves. While this was not to be a regular occurrence, the stereotypical view of lesbians as being rough and tough, man-like people who would pick a fight with little provocation was confirmed for men like me who had not met many other lesbians. There was a strong separatist movement happening at this time, with many lesbians preferring to identify with the emerging women’s liberation movement rather than gay liberation. Gay men were part of the oppressive male culture—if not more misogynistic in some ways—we were often told. It’s true that the gay male subculture was heading in different directions to lesbians’ interests at this time. The development of men-only bars was a symptom of this divide. The Union Hotel in North Carlton opened around this time and introduced men-only nights on the weekends. Disco was taking over, with artists like Donna Summer, Thelma Houston and Gloria Gaynor dominating our nights out. Memorable songs like ‘Don’t Leave Me This Way’ by Houston and ‘I Will Survive’ by Gaynor were adopted as anthems that seemed to speak about the difficult life mainstream society had forced on gays. There was a sense that much of this music was written with the gay scene in mind. Certainly the disco artists made a strong pitch to the gay market. Gay men, ever ones to ride the crest of music fashion, immersed themselves in this music. It was an extroverted, 138
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joyous kind of music and the dancefloors were brimming with gay men rapturously enjoying the sound. The Village People, an outrageously gay pop group from the USA, consisted of five fetish characters, all plucked from gay men’s sexual fantasies: the leatherman, the construction worker, the cowboy, the policeman and the Indian. Their popularity was a mainstream acknowledgment of a trend in the gay scene, with men breaking away from the effeminate stereotype that had dogged them for years by dressing in butch take-offs of straight society. It was about replacing old stereotypes with new, equally ridiculous ones, but it grabbed people’s attention. In the late seventies, a lot of gay men were dressing in the ‘clone’ look— flannelette shirt, jeans and boots, with the mandatory moustache and short hair. Or the leatherman’s leather outfit and cap, or the military or policeman look. The Village People’s ‘San Francisco’, ‘YMCA’ or ‘Give Your Love to a Cowboy Man’ belting out on the dancefloors was the soundtrack to a celebration of a new confidence in being gay. In Melbourne a male-only nightclub called Mandate opened in St Kilda. A small and cramped venue in a fairly seedy part of town (above a notorious hang-out called the St Kilda Aquarium), the bar and dancefloor were packed with the new macho look. But there was also a fad for fan dancing, which complemented swirling disco dance routines—although this hardly fitted the supposedly masculine ambience. I was a regular at these bars and revelled in the sense of energy and newfound freedom that the music was communicating. I was also pleased that there was increased recognition, at least within the media, that gay life existed. But in reality, society had a long way to go to reach understanding and acceptance.
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One Sunday afternoon in March 1976, I was coming home from a visit to my grandparents. I was feeling the tension of having gone through the usual charade involved with family visits. I wanted to immerse myself in something gay. My strict Protestant grandfather regularly wrote to newspapers condemning homosexuals and the threat they posed to decent Christian values. I needed to find some solace from that view of the world and an affirmation of my sexuality. I stopped outside one of Melbourne’s notorious beats. I was not a regular beat-goer, usually relying on bars to find sexual partners, but this was a Sunday afternoon. I knew there was the danger of bashers who would pounce after one of them enticed you with the promise of sex. I knew there was also the risk of police. It was against the law to have homosexual sex and an offence to be caught soliciting for it in a public place. I sat quietly in my early model Holden outside the toilet block, trying to build up the courage to go inside. Two plainclothes policemen suddenly appeared and ordered me out of the car. ‘What are you doing here?’ said the taller, thick-set guy in a very aggressive tone. ‘You know this is one of Melbourne’s haunts for homosexuals, don’t you? We reckon you were just about to go in there looking for sex.’ ‘No, I was just sitting here, trying to collect my thoughts,’ I stuttered back in reply. ‘Look, we know what goes on here. We’re just trying to protect you guys from being bashed up. If you tell us what you were up to, you won’t come to any harm,’ said a more attractive, younger blond guy, adopting a conciliatory, almost sympathetic tone. ‘Or if you’d prefer,’ said the nastier one in a menacing way, ‘we could take you back to Russell Street and get it out of you there!’ 140
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I knew he was threatening me with a beating at police headquarter’s a few city streets away. Mr Nice-Guy asked what I did for a living. At this stage, feeling increasingly frightened of being bashed up and thrown into a city lock-up, I told him the truth, to keep on his good side. ‘I’m a teacher.’ ‘Well, wouldn’t the Education Department like to find out about what you’ve been up to here?’ said the nasty one. ‘We’re going to let you go this time,’ said Mr Nice-Guy, ‘ but if we ever see you here again, you’ll be in for big trouble from us.’ In an about-turn that took me by total surprise, he then spewed out, ‘But take my advice, go and see a psychiatrist about your problem. You guys are sick. I wouldn’t want to have my child taught by someone like you. You need help, you do.’ I had been the victim of a well-known police tactic: the Good Cop, Bad Cop routine. Bad Cop makes me scared enough to go along with their line of questioning and Good Cop pretends to be on my side if I tell him the truth. Then Good Cop turns at the end and delivers the most devastating blow: a particularly cutting comment that hurts your self-esteem so badly, it makes anything Bad Cop came out with seem relatively tame. This incident disturbed me deeply. While I was intelligent enough to work out that this hateful behaviour was not representative of all of society, it still played on my lack of confidence about being gay. Rarely would a day go by when I wouldn’t ask myself why I was gay—was it some sort of weakness or failing, was I doomed to have an unhappy unfulfilled life, as some rightwing Christian groups would have me believe? I hadn’t had time to develop my confidence and I was vulnerable to this kind of personal attack. When Good Cop came out with his comment about needing to see a psychiatrist, I was shocked at his 141
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vehemence and his ignorance, but also by my own internalised homophobia. Was I really the ‘sicko’ that this cop thought I was, would I ever feel really good about being a gay man in this society? This incident confronted me with the question of my safety as a gay man. If I couldn’t rely on the police to support me, then I was on my own. I had been a law-abiding citizen, conservative in many ways on ideas about maintaining law and order. Having two bullying cops flex their muscles on me for a minor misdemeanour should not have affected me as it did. I vowed that I would not let the police get me into that kind of vulnerable situation again. I had certainly heard some horror stories about the behaviour of police towards gays in the fifties and sixties. Baiting ‘poofters’ was a cruel game that many members of the force used to participate in, knowing full well that gay men had no recourse to the law. Homosexuality was illegal and any charge coming before the courts was likely to incur a jail sentence, a steep fine or major embarrassment for the individual involved, including the potential loss of employment. A friend of mine, Barry, who lived through this time in his twenties and thirties, said that he would brace himself as he walked out of the Australia Hotel in Collins Street to face the police hanging around outside ready to hurl abuse at guys leaving. Sometimes, just to increase the angst, they would take your name and address and the details of your employer and promise to contact your employer on Monday. On one occasion they did carry out their threat and rang Barry’s boss at TAA, a domestic airline that was later to become part of Qantas. According to Barry, the conversation went something like this: Police officer to TAA boss: ‘Are you aware that you have a 142
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homosexual on your staff? He was seen coming out of the Australia Hotel last Saturday night.’ ‘Really?’ said Barry’s supportive boss. ‘There wouldn’t be many of my staff who aren’t homosexual, so it doesn’t bother me.’ As Barry said, if you worked for Myer or TAA you were relatively safe from the sack but for most other employees this kind of revelation would lead to instant dismissal. The police hung around the gay bars to find out the addresses of parties at people’s homes. When the police found out the address, they would wait until the party started to get going, then they would stage a raid. Trumped-up charges would be laid against those caught at the party but most people would make a run for it over the back fence and into the night. This cruel harassment of gays, undoubtedly supported by the right-wing Christian moralists and probably not opposed by the majority of the population, made life incredibly difficult. By the late seventies, you would occasionally hear stories of enlightened police attitudes, with individuals doing the beats being told to move on to other venues such as the saunas and nightclubs that were beginning to open at the time. My experience on the beat in 1976 was repeated for others many times, until law reform was finally introduced in Victoria in 1981. In fact in the late seventies there was an increase in police entrapment and arrests on the beats, an increase that was to be a catalyst for the law reform campaign. While the general public was uneasy about the idea of people visiting toilets to procure sex, there was a growing feeling that gays should not be persecuted. It should not be surprising that people seek out furtive, anonymous sexual encounters when society neither accepts nor 143
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legitimises their sexual identity. In a society where gay sex was not only illegal but discussed in negative ways in the media, the psychological pressure on many men was intense. We didn’t often see positive role models of gay men in happy, secure relationships or affirming messages from social institutions such as the church or the education system. Because of this, some were less likely to see their sexuality in the positive light it deserved. They tended to look for quick sexual liaisons because establishing something more intimate and long-lasting was going to take a brave and sustained effort on the part of both partners. I felt there was a lack of self-esteem among a lot of gay men at this time. The very fact that something has to be a secret implies an element of shame or wrongness. How could you be the best person you could be—at the top of your career, the manager of your workplace, the leader of an organisation or political party—if you had a deep dark secret that threatened to destroy your public persona? For all the feeling of liberation in the emerging disco culture and fabulous gay nightlife, I knew there was something incomplete about the world I was inhabiting. Events still happened behind closed doors and usually at one-night-a-week venues because the owners didn’t want their places to be known as totally gay venues. Occasionally we would let straight friends into our exotic display of drag queens and wild parties and they would marvel at the fun everyone was having. In a way we were enjoying ourselves and having a pretty good time sexually, but there was a nagging self-doubt and insecurity in many of us. I was still a nervous and unconfident man as I tried to establish myself in a teaching career. On Friday nights, at the end of a week of teaching at Fitzroy North Primary School in 1976, I 144
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would go over to the local bar with other teachers and try to join in the social reverie. Things were always strained though, as I wasn’t prepared to talk about my weekend or give any hint that I was not in the business of chasing girls. I didn’t think you could come out as a gay man in a school then. Maybe there were instances where this happened, but I’m fairly sure the social cost would have been significant, if not disastrous, for your career. But I had some lucky breaks. I was to find a job that turned my life around and gave me creative opportunities I could only have dreamed of. Before long I would also be able to play my part in making life for gay men in this state a little easier. Through involvement in gay activism, I played a small role in helping advance social attitudes to homosexuality and in the process helped make myself a happier and more stable person.
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Chapter 13 Lucky Breaks
One of the luckiest breaks I was to receive in life was to be employed in a job that I absolutely adored. After my souldestroying introduction to secondary teaching at Rochester High School I decided to make a major change and transfer to a primary school in the city. I coped reasonably well with the easier discipline regime and the younger children. But I missed the stimulation of the more academically minded secondary staff and was looking around for alternative jobs. My opportunity came one day when someone who worked on the Education Department’s student magazines arrived in my classroom to survey my pupils’ reactions to the publications. Casually, I asked Sandy what one needed to do to corner oneself a job like hers. I had always wanted to be a journalist and editor and this would fulfil a life-long ambition. Sandy replied that there was a job going at the moment for a teacher who could prove they had some ability as a writer. 146
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I rang the Publications Branch, and spoke to a woman called Barbara Mills who managed the school magazines. She requested that I write a 500-word piece to show that I had an ability to write for children. My fairly amateur attempt at chronicling some famous ghost stories from the past gained me an interview and I was soon advised that I could start at the beginning of the school year in 1977. This job had everything I ever wanted. I was part of a production team for four magazines, Comet, Explore, Challenge and Pursuit, which went out to schools around the country. I was writing and producing a magazine called Explore, for middle primary students, with the responsibility of creating the ideas that would capture inquiring young minds. While I took a little time to adjust to the editing guidelines— carefully explained to me by the arbiters of publications style—I soon felt totally at home in my new environment. One of the other bright spots was that a good number of the staff were gay and the rest seemed totally unconcerned about my sexual preferences. It was liberating to know that I could be totally open about myself in this workplace. Not only was I not going to be condemned for my lifestyle but some workmates were fascinated by it. Our morning-tea conversations, our numerous social events, our regular lunches at the nearby pub all contributed to an enjoyment of my workplace that I had never experienced. Work was socially and professionally rewarding. Countless letters arrived from appreciative students who seemed to love the magazines as much as we enjoyed producing them. To add to our fun, we were funded to visit country schools two or three times a year. A group of us, sometimes the whole department of Junior Publications, would spend the best part of 147
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a week travelling around Victoria asking students what they thought of our magazines and collecting their contributions. At night we would raise merry hell in the local restaurants and drink into the wee hours in our motel rooms. This bonding experience with fellow editors like Alan Mayberry, Peter Carroll, Mary Pershall, Rosemary Noble and Sharon Hurst was to make these people friends of mine for life. We told each other almost every story about our lives and that trust and confidence in each other has never gone away. I’m not sure that Peter Carroll appreciated being stripped nude one night when Mary, who was sharing his motel room, decided that he should be undressed after passing out from a night of drinking. Mary had heard that people could suffocate in their clothes if they slept in them. A lot of nonsense I’m sure, but Mary believed it and it made for yet another embarrassing story to throw around at afternoon tea for weeks to come. The stable work environment contributed to my growth in confidence on a number of levels. I knew I had a career that would give me a reasonable income and tenure for a number of years to come. I was developing confidence in my abilities as a writer and editor and soon was to use these skills in areas of interest beyond my workplace. In 1978 I was asked to join the publications group of a gay and lesbian newsletter put together to publicise the forthcoming National Homosexual Conference that would be held in Melbourne the following year. The collective for the conference was a left-leaning group of activists, many of whom had cut their teeth on university politics or as members of campus-based gay liberation groups. They were quite different from the gay men I had mixed with at bars or my peers at university. I enjoyed mixing with these more radical, politically savvy individuals. 148
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They challenged some of my more conservative values and developed my confidence about being gay. The very notion of a conference for homosexuals was a public statement. Every time we dealt with a venue manager or talked to the press, we were stating our identity as gay men. I was working for an unashamedly upfront cause. We developed a slogan ‘We’re not all straight in the Garden State’, taking off the Liberal government’s ‘Garden State’ logo. When I first fixed our sticker to the back of my old Renault, I worried that I would get abuse from passing drivers or maybe a rock through my windscreen. Nothing of the sort happened and I survived what was probably my first public statement about being gay. The conference was one of the first major public gay events to be staged in Melbourne, and the organising collective had devised a media strategy to ensure extensive coverage, in particular to help the law reform cause. A huge pink triangle flag flew above the Universal Theatre workshop where the conference was held, with a banner proclaiming: ‘Come Out, Be Active, Fight Back, Educate!’ During the week of the conference the Age ran a series of sympathetic articles on being gay in the seventies and how opposition to homosexual law reform was now waning even within the more conservative elements of the governing Liberal–Country Party coalition. The tone of the conference was overtly political with the microphone at the final session being taken by people allied with a range of left-wing groups. They talked about smashing capitalism, the sexism of the male conference participants and the need to conduct ongoing campaigns to fight discrimination. The Sydney group Gay Solidarity proposed a Summer Offensive of demonstrations around the country to fight oppression against gays and lesbians. Some members of the Melbourne organising 149
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collective, such as Jamie Gardiner from the Homosexual Law Reform Coalition, were concerned that these protests might undermine the ‘reasonable’ approach they were pursuing to gain law reform. Fortunately the demonstrations, led in Melbourne by the fledgling Young Gays group that had grown out of the conference, did not deflect law reform. Relations between lesbians and gay men during preparations for the conference were strained, with some women deciding to run a separate women’s conference concurrently. A conference cabaret at the Pram Factory caused uproar because it included a bare-breasted performance by an actress that was dubbed sexist and anti-woman, and it was condemned in a final plenary motion. Gay men were asked to recognise their level of sexism and misogyny and work with their peers to overcome it. These were politically correct and ideological times. I now wonder whether there were more divisions amongst us than ideas that united us. I do remember enjoying the social events. They included a ride with conference-goers on hired trams down Collins Street on the Saturday night. The trams had been painted by local artists and included one with the quirkily appropriate phrase ‘Mother Knows’ emblazoned all over it. This public display of our gayness to a curious crowd achieved some of the conference’s aims: to increase our visibility and proclaim our right to be heard. I spent many hours writing and producing a magazine called Conference News. It brought together the team who decided to set up Gay Community News after the conference. The magazine soon developed credibility as a serious commentator on gay and lesbian community matters, with editorials addressing issues such as the slow pace of law reform, the relationship between feminism and gay liberation, paedophilia, relations with the 150
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church and so on. I regularly wrote articles and had no hesitation in using my name. If there were people out there who wanted to have a go at me for acknowledging my sexuality in print, then let them try. This process of coming out in public involved a fundamental change in my psyche. From being a fairly timid person, who as a child was careful to do the right thing by adults, to get all my assignments done in time and abide by society’s rules, I had become someone prepared to make a bold statement about who I was. I attended a couple of gay rights demos in the late seventies, including a famous ‘kiss-in’ outside the Woolshed bar, where two guys encouraged the police to arrest them as part of a campaign to point out the absurdity of the state’s laws against homosexuality. While I had been a part of the anti-Vietnam marches at university—sitting down in the Bourke Street protest of 1972 to listen to Jim Cairns speak about how Australia should withdraw troops—I was a tad conservative when it came to my political views. I had made the big move to voting Labor during my university days (which involved some introspection because my family were all Liberal or Country Party voters) but I was not a natural leftie. My gayness was making me break out of that mould and challenge some of society’s strictures. I spent hours standing outside the door of gay Melbourne’s favourite Sunday nightspot, Pokey’s, at the Prince of Wales Hotel in St Kilda. I was trying to sell the magazine to a largely uninterested clientele. The schism between the activist perspective and that of the bar-goer was blatantly obvious. Inside, drag queens were twirling around on stage in glamorous creations to lavishly choreographed disco numbers, and outside was this lonely-looking activist selling material which criticised the bar scene more than applauded it. Some bar owners would support 151
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our efforts with the occasional advertisement to help defray our costs, but we were not considered part of the ‘mainstream’ gay world at the time. Some of the friends I’d met on the scene would obligingly purchase a copy but I doubted whether they found much to interest them in its pages. Activism appealed to a small but crucial section of the community. These included people like Jamie Gardiner, who was helping to draft sample law reforms for the Liberal government, as well as Gary Jaynes and Graeme Carberry, who had established the Gay Teachers and Students Group in 1976 to work with the unions to protect gay teachers. Danny Vadasz, one of the driving forces behind the running of the conference, talked me into being involved in the collective to run the magazine. There were also Adam Carr, Gary Jaynes, Graham Willett, Alison Thorne, Helen Pausacker, James Spence, Sinon Hassett, Phillip Carswell, Ron Thiele, Peter McEwan and other individuals who were to play a major role in gay politics in Melbourne for many years to come. This group was one of the first joint gay and lesbian collectives in Melbourne. Our collective worked on the issues that united rather than divided us. An example of one of the areas of tension that existed between gay and lesbian activists was the discussions we had about images that might offend women in GCN. Could we run an advertisement featuring a naked man to advertise a sauna? Some women felt this was objectifying the male body and since we had a policy against doing that to the female body why should it be any different for males? But part of the celebration of being gay was about publicly acknowledging our love, and even our lust, for other males. Gay male imagery had been stifled and sexually interesting photos were something we had to include to retain gay male readership. 152
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A lot of the women on the collective understood these issues and did not push a hard line. Unfortunately, this made them targets of the more radical women’s liberationists. When GCN evolved into the more commercial publication called OutRage several years later, there was a conflict that saw the end of lesbian involvement in the collective. There was pressure from other lesbians for the publication to be ‘more ideologically sound’. This meant an equal amount of copy for lesbian issues as for gay male issues and a limit on male sexual imagery. Such demands could not be sustained in a publication that needed widespread gay male support to be viable. A gay and lesbian publication was an ideal that was probably ahead of its time in the early eighties, as relations between lesbians and gay men were not as close as they now are. Gay men and lesbians learnt to work together in the late eighties and the nineties. The Sydney Gay and Lesbian Mardi Gras is one example of this, as is the support of lesbians for HIV/AIDS causes. My social life was to become a balancing act. My ‘gay scene’ friends would make asides about my ‘political causes’. I couldn’t go for a night out at a disco without wondering if I was participating in a commercial/capitalist world with sexist, and misogynistic qualities. My favourite night out was Pokey’s, especially when I didn’t have to sell GCNs at the door. This spectacular high-camp drag show had been a feature of Melbourne’s gay scene since 1977 and was run by two larger-than-life gay characters, Jan Hillier and Doug Lucas. Jan had started work as a baker’s delivery person. She became an entrepreneur of dance parties, most of which encouraged gay men and lesbians to mix together socially. Doug had been the compere of shows at the Union Hotel and was a talented drag performer, despite his large frame. 153
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Jan and Doug organised a bevy of drag performers, incredibly expensive costumes and sets and wonderful choreography to produce a professional show that rivalled theatre shows like Sydney’s Les Girls or Capriccio’s. Jan used to get on the microphone at the beginning of the show, and in her deep, gravelly voice talk about ‘the Pokey’s family’ and how she wanted the venue to be a place you would be happy to bring your mother. I occasionally picked up at the end of the night. It was the wrong night to take someone home, as it was work the next morning, but my energy levels were up to the task then. Some activists disapproved of drag. I felt ambivalent. As for wearing drag myself, I was never really comfortable with the idea, perhaps because it required just a tad too much extroversion to carry off, or perhaps because I didn’t have a clue how to put on make-up or fluff up a wig. I knew that a number of my gay friends loved the idea. They would talk endlessly about frocks and prepare them months before an upcoming ball or Sydney’s Mardi Gras. It was perhaps easy for my activist friends to put down gay men who dabbled in drag as being misogynistic and bolstering stereotypes of women as vampish, big-breasted sex objects. But drag had its roots in much earlier times when gay men felt obliged to be either butch or femme in mimicry of strict gender roles in the straight community. Activists pushed the idea that gay men were as ‘normal’ as the next person. The idea that people wanted to dress up in women’s clothes for a lark at the weekend did not quite fit this picture. I thought drag allowed people to play out a part of themselves that they needed to explore. Maybe it was something to do with escaping from the reality of your life for a night. Maybe it was just about looking glamorous and wearing as much glitter and 154
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lamé as you could lay your hands on. Or maybe it was about developing the feminine side of your personality in a permissive gay world. The couple of drag parties I attended early on in my coming out were uncomfortable experiences. One was held in a garage in Brighton. I clattered along in broad daylight, wearing an excruciatingly tight pair of high heels and a terribly unstable wig. I was one of a threesome with friends Marcus and Chris and we were dressed up as Diana Ross and the Supremes. I’ve blotted much of this out of my memory but I think it’s likely that we were wearing blackened faces. My god. If my activist friends had discovered this aspect of my past, I would have been thrown out the door as a sexist and a racist to boot! Even the butch, muscle-bound attendees were wearing frocks. They looked ridiculous, their efforts to dress up halfhearted, as if their boyfriends had forced them to dress up. I drowned myself in sweet Vermouth and dry, one of the drinks of the moment. But I can remember the embarrassment of trying to get back home to North Fitzroy dressed in make-up and wig later that night. A couple of lads who stopped at the lights and peered over at these strange creatures in the car opposite were fascinated, and one suspects a bit sexually interested. My work colleague, Alan, loved to stage fancy dress parties with a good percentage of friends in drag. He looked great in drag himself and would spend a huge amount of effort getting into character. As an exercise in donning fancy dress, it was a bit easier to take and not quite the serious gay rite of passage that I’d felt in that garage in Brighton in 1976. When I lived in a grand deco-style house in Kew in 1978, my two flatmates, Michael and Greg, were keen to have a big fancy dress party for New Year’s Eve. It was about this time that I was beginning to meet some of 155
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my activist friends. In normal circumstances I would have invited them to any party at my place and let the incompatibilities sort themselves out. But I felt unable to invite people who had condemned drag. I had to play a censoring role: this side of my life could not clash with another. But I was to stay involved with political causes. It was vital to address injustices that affected me to the core. I wanted to feel safe and have a sense of dignity as a gay man in society. I didn’t want to continue the level of self-doubt, even verging on selfhatred, which I occasionally felt when powerful figures in society decided I was a deviant or defective in some way because of my sexuality.
It was a natural transition to become active in the union movement, most particularly in the teacher unions. As a registered primary teacher I was now part of the primary teachers’ union, the Victorian Teachers Union (VTU), and I became their representative at my workplace. I was particularly keen to see the unions address the issue of rights for gay teachers and to throw their support behind the campaign for homosexual law reform. June Anstee, a policy officer with the VTU who was married to a former teaching colleague from Rochester, convinced me to become part of a committee set up to address the issue of sexism in primary schools. Our objective was to produce materials and guidelines that would help primary schools address gender inequities and some of the stereotypes about masculinity and femininity entrenched in the curriculum. The Elimination of Sexism committee pushed for broadbrush changes to the way people perceived sex roles in schools and was inspired by the women’s liberation movement. Through 156
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it I was to meet a lifetime gay friend, Russell Pollard, and lesbian Pam Bishop, who worked with me on a range of political projects over the next few years. The committee was supported by the three teacher unions, the VTU, the Victorian Secondary Teachers Association (VSTA) and the Technical Teachers Union of Victoria (TTUV). It included members from each union and was coordinated by a long-time lesbian activist, Jude Munro. The VSTA set up the Open Subcommittee on Homosexuality in 1976, to look at protecting gay teachers’ rights, and our Sexism Committee was expected to offer support on gay issues. The VSTA had passed a motion in 1976 affirming that ‘homosexual lifestyles should be treated as equal to heterosexual lifestyles’, and discussions held after one of the Sexism Committee meetings suggested it was time that the other two unions followed suit. The job of convincing the more conservative union of the three—the Victorian Teachers Union—to support a gay rights motion fell on to Russell and I. Through our work on the Elimination of Sexism Committee we had gained a certain notoriety as ‘out’ gay men who would speak up at meetings for various feminist and gay causes. At a May 1978 conference of the VTU, Russell and I were scheduled to talk in favour of the motion that the union support the equality of gay teachers. Conservatives spoke against the motion, arguing there would be a backlash from parents if the union openly supported gays and lesbians. One of the senior members of the VTU executive, Rupert Granrott, agreed to speak for the motion and Russell seconded it. I was saved from the nerve-racking experience of having to stand up in front of several hundred teachers and announce my sexuality. Not that I was completely frightened to do that. By 157
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this time in my life I was relatively secure in my gay identity. One gay teacher, Robert, had earlier discussed with me the difficulty of being involved in this debate. ‘Decisions about promotion and gaining respect from other teachers in my school need to be taken into account. Even if my own school was okay about my sexuality, there is always the possibility that I may be transferred to another school which wasn’t okay with it and it would be just my luck for that principal to be sitting in the audience today.’ After the motion of support for gay teachers was passed by the conference, the media wanted to talk to an openly gay teacher. While I was prepared to be open about my sexuality in certain circles, I drew the line at this. I was worried about my face being beamed to country TV news bulletins where my family might see it.
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Chapter 14 Love and Lust
Heterosexual friends were often bemused when I answered their questions about whether there was anyone special in my life. They were not sure what to make of the many short-term relationships I had and the constant availability of sex on the gay scene. My straight workmates would be open-mouthed when I revealed details of my weekend. There were saunas where gay men would go to have a spa, a sauna and a sexual encounter in a cubicle. Sometimes men would have stand-up sex together in a corridor or a sauna. It was a kind of sexual takeaway shop where you stopped in for a couple of hours, had a bit of recreational coitus and left with a smile on your face. While I heard of people developing longterm relationships with people they met at these places, it was more likely that you would give each other a polite thankyou after it was all over and disappear into the night. In the late seventies pressure was put on authorities to grant 159
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permits for a range of sex-on-premises venues—to allow gay men to have sex safely, away from the violence of beats and the risk of being arrested. Even the police had to acknowledge that opening such places would help reduce the amount of beat traffic. When a popular sauna in Caulfield opened, police were known to tell people doing beats to go to the sauna and more than once actually dropped people off at the sauna’s front door. It was an era of no-commitment sex. Even couples in relationships would often talk about having an open relationship, under mutually agreed rules. Not all gay men are interested in this kind of sex. Many prefer to look for more solid, long-lasting relationships, which might start with meeting at a bar. While I always felt that a special relationship was what I really wanted, I went along for the ride (so to speak) and followed the easiest path going, while still waiting for Mr Right to come along. What I didn’t effectively come to terms with was the reality that you have to work at the art of seducing a partner for something longer than a ten-minute coitus. I didn’t have the confidence to pursue a lover with vigour and constancy. If I had the right man in my arms (as I undoubtedly did on a number of occasions), I didn’t know what to do with him after one or two nights’ passion. A Saturday night routine in 1980, for instance, would involve a visit to the newly opened leather and denim bar, the Laird O’Cockpen. After far too many Scotch and dries I would wait in the vicinity of the meat rack, the affectionately named, darkened area at the back of the bar, where those looking for a relatively quick pick-up would hover. If I wasn’t successful there, it would be time to move off to the new sex-on-premises venue up the road called Club 80. It was different from a sauna in that there was no spa or sauna and people were not expected to take their clothes off as they walked around looking for a sexual partner. 160
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There was a video lounge, a coffee bar and a pool table but the real action was out the back in the dark rooms where men prowled. I found the back room addictive. The sexiness of seeing someone dressed in full leather, or a simple pair of tight denim jeans and a T-shirt, patrolling for a partner was hard to beat. There was no pretension or posing like you found in the bars where eye games and idle chit-chat often led nowhere. This was a much more upbeat sexual energy and liaisons were short, sometimes sweet and sometimes gratifying. The reality of this kind of ‘zipless fuck’, as Erica Jong described it in Fear of Flying, is that it is often not what you hope it will be. A short furtive encounter where orgasm is the single goal often left me feeling let down, if not depressed. In moments of unbridled passion with a partner at Club 80, I would sometimes detect the kind of emotion and yearning that might form the basis for a deeper relationship. Occasionally I would build up the confidence to have a coffee and chat with the partner and give him my phone number. Sometimes he would ring back and we might see each other once or twice. If I was looking for true love and happiness, I was probably not going to find it in a back room sex venue. The Mardi Gras celebrations have drawn me to Sydney each year since the parade was moved to the summer months in 1981. The early Mardi Gras were notable for the presence of enormous numbers of police, ready to jump on the participants if anything broke their strict protocol. The first couple of marches, in June 1979 and 1980, were political statements where the gay community was fighting for the right to march and be heard. The majority of participants were from gay liberation groups, unions or other political organisations. 161
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Later, as political objectives such as law reform were achieved or on track, the concept of a ‘let it all hang out’ parade developed. People could dress up in drag, leathers or whatever as a celebration of their gay pride. The fun-filled party atmosphere that is seen in the parades today took over. The most amazing experiences at Mardi Gras were often to be had at the party which followed at the showgrounds. The feeling of having thousands of other gays gathering together for a giant party with the latest music, the most spectacular lighting, and the latest pop stars performing was exciting at a time when the concept of a gay gathering of any kind was fairly unusual. The parades were a statement about our presence but they were also a bit of fun, a bit of extroverted display for the larger straight community as much as for gays themselves. When we got behind the walls of the showground, dancing our sequined bums off in the Royal Hall of Industries or the Horden Pavilion, we were truly celebrating the discovery of our identity as a community. People’s fancy would turn to sex and finding somewhere to do it. At the first Mardi Gras party, a few enterprising young gay men explored the cattle yards. A tall American visitor grabbed my hand and dragged me into a cattle stall for a literal ‘roll in the hay’ when we suddenly realised that there were other creatures moving in the dark. We had stumbled across pens full of cows and sheep and before long there was an almighty din, moos and baas coming from every corner of the pavilion. An attendant who must have been sleeping nearby awoke to the pandemonium and came to see what was happening. When he realised there were a few unwanted human occupants in the stalls, he yelled, ‘Get out of there, you animals! How disgusting!’ His choice of words had everyone rolling around in laughter. 162
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‘Which animals are you referring to, mate?’ The animal sounds continued unabated as we all tried to outdo each other, imitating our four-legged friends. So it was for my many visits to Sydney. There were plenty of nights out at the bars springing up on Oxford Street, dancing to all hours at the discos and then venturing out to the sex venues later on. Sydney had a different police culture to Melbourne’s in the seventies and early eighties. While I have no doubt there were some police who took payouts from bar owners in Melbourne, it was a more prevalent practice in Sydney, particularly around Kings Cross and Darlinghurst. While of course you never met the underworld figures involved, you knew when you entered certain venues that there was an element of illegality about the place. One such place was a sex-on-premises venue called Signal that operated in a warehouse in the back streets of Darlinghurst, near Crown and William Streets. It was an extravagantly fittedout sexual playground with all sorts of slings and sexual apparatus to cater for an increasingly fetishistic gay clientele, including those experimenting with sado-masochism. As you walked in to the dimly lit bar, you’d see in one corner of the room a giant rack used to spread-eagle an individual. A larger than life figure called Madam Lash (the only woman ever invited in there, we were told), clad in a skimpy leather outfit and high boots, would set the rack going with a willing victim lying on the bed, receiving the odd lash from the dominatrix’s whip. This was the nightly show and behind the barroom were countless back rooms with floors covered in sawdust and mazes of wire gates and blackened glory holes where the ultimate in anonymous sex could be achieved: you saw nothing of a man’s face or body except that part offered through the hole in the wall. 163
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A number of my friends, straight and gay, thought this lifestyle was going to lead to all sorts of dangers for me. They would mention that the risk of picking up sexually transmitted diseases was particularly high. I did pick up the dreaded gonorrhoea on several occasions and would retreat to my GP with some embarrassment. But the gay GPs around town were used to the incidence of STDs amongst gay men and these visits were not used to moralise or express caution about our behaviour. A dose of antibiotics always did the trick and after a few days of abstinence we were free to get back into action. Of course I was not impervious to occasional comments from gay couples I knew—that I should be looking for a relationship, to find someone to share my life with. Each night after I left a sex venue I wondered if there had been a potential partner met during the brief encounters. Could I have played my cards better with that person and maybe got to meet them a second time, invited them home for a more meaningful romp and a more serious talk about ourselves? I guess I rationalised my sexual behaviour with the thought that life was different for gay men. It shouldn’t be assumed that we were going to follow heterosexual mating habits—we were chasing men who were chasing orgasms as their major goal in the sex game. Clearly I did hanker after a relationship and the personal development and security that is supposed to come from coupledom. I wanted it personally and I also knew it would give me a certain legitimacy in society. Even though society was hardly ready for gay men to walk the streets hand in hand, there were tolerant, understanding people in straight society who would accept a devoted homosexual relationship—it was the promiscuous, sex-loving playboys who did not meet with moral approval. 164
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I am conscious that this view prevails for the majority of society in the twenty-first century and that the concept of sex-onpremises venues is equivalent to a sexual Sodom and Gomorrah. They are the pleasure temples of doom that lead to AIDS and death. They are un-Christian, immoral and a range of other unspeakables. But they exist and this type of sexual pleasure meets, however fleetingly, some people’s primal urges. Urges activated on a Friday night, at the end of the working week, which cannot be quelled until you meet a sexual partner and experience a moment of cathartic joy. It isn’t terribly fulfilling, but it certainly is habit forming. I did meet a spunky older man, a stockbroker called Steve, at a sauna in Melbourne in mid-1980 and a relationship followed for the next nine months. He had a touch of the romantic about him, ringing me at all hours of the day with suggestive (and occasionally downright dirty) talk, and he would regularly invite me out to lunch on his company’s credit account, because as he would say, he didn’t want to be away from me for too long during the day. As a sexual wanderer who had rarely been wooed like this, I fell headlong into a love affair with this charmer who seemed to have no end of interest in courting me. Steve was ten years older than me and had just broken up a relationship of some ten years’ standing. Entering his large house in North Melbourne was to sense the quality of the relationship that had existed with his former partner. They had carefully restored the grand old house into a comfortable home. The two obligatory dogs, Airedales, had been allocated to Steve in the carve-up of possessions and responsibilities after the break-up. I knew that I was a possible replacement in this picture-perfect scenario of the wealthy stockbroker, his house, his sports car and his dogs. I was nervous about living up to such expectations and wondered whether I really wanted to. 165
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For me, forming a relationship with someone required a fair bit of work to iron out mutual incompatibilities. And for myself, I needed to come to terms with some of the anxieties and insecurities I have always had about obtaining and keeping another’s love and commitment. I’m not sure where this insecurity began. I sometimes wondered whether it had its origins in my parents’ failed marriage and the tension I went through as their relationship fell apart. I was always nervous for my sisters as they began their courting with various boyfriends, hoping that if they began a relationship with someone I liked and thought suitable, the relationship would be smooth sailing, with no arguments or break-ups. Once or twice I interfered when my sisters had fights with their boyfriends and got told off for bothering. ‘Butt out,’ they would say. ‘This is something between me and him and we’ll work it out without you interfering.’ I was a peacemaker who didn’t want to see disharmony in relationships around me and I guess that must be one of the reasons why I was wary about how to conduct my own. I was pretty much in love with Steve but realised there were some differences in our politics and general outlook. How would he cope with my leftist gay activist friends? As a stockbroker he would be regarded as a pillar of the capitalist establishment by some of my friends at the newly established design cooperative, Correct Line Graphics. By 1980 the GCN collective was struggling to keep the publication going, with little advertising support from the commercial establishments. Our group decided to set up a graphic design business to bring in income for the newspaper and provide employment to layout artists and production staff. Later we were the beneficiaries of a government-subsidised workers’ cooperative scheme that funded both the business and the new magazine, OutRage. 166
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Steve dutifully came along to Correct Line Graphic’s Christmas party in 1980. He actually fitted in quite easily, despite the wine casks and cheese and biscuits being a little different from the canapes and spirits usually served in corporate boardrooms. He was a remarkably adaptable man who was prepared to do anything or be anywhere to be with someone who meant a lot to him. My interest in politics and the tightrope I had walked between all of my different groups of friends became increasingly irrelevant as I followed this affair of the heart. The two of us went away to Sydney together during the summer of 1981. We started to get the feel of whether we could work as a unit. We had limited success, as I felt lonely and isolated during the day while Steve tended to his business affairs in the city. I was missing my gay ‘family’, with whom I would have frolicked around Sydney during the day before hitting the bars at night. I realised that the essence of a one-on-one relationship is the desire to be with that person above all others, and while there was something powerful about my relationship with Steve, I had not broken my old patterns. The concept of throwing my lot in with one individual and easing the intensity of my other relationships was difficult for me. My relationship continued with Steve for another few months but I wasn’t totally surprised when I arrived at his place after a visit to my family in the country to find a strange address tucked under the phone. ‘Who is this person?’ I asked, knowing there was a good chance that Steve had picked up someone in my absence. Steve’s honesty didn’t let him tell a lie, even a gentle one, and I got the whole sordid story about this man he’d met at the sauna the previous night. Thus began a horror period in my life while Mark and I vied for Steve’s affections. There were long neurotic phone calls trying to win him back, and visits to the 167
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doctor to be prescribed Serepax and sleeping pills to calm me down. The full catastrophe, or so it seemed at the time, and it took several months to get my life back on an even keel. I was to have a couple of relationships during the eighties but none of them ever quite matched the intensity of that one. The pain of rejection after the break-up reinforced my wariness about relationships. Maybe I would have overcome this reticence and matured into a relationship with somebody special if HIV hadn’t intervened in my life and changed the way I was to look at sex, relationships and pretty much everything else.
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part three
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Chapter 15 Celebrations
On 7 October 1992 I would reach the milestone of forty years, and I intended to celebrate. Many of my peers who had reached this age had done their best to hide the fact from others or had just held a quiet occasion with a few friends. Forty was not something to be proud of, particularly in the age-conscious gay community. I felt quite differently about this. I was out to make the most of the moment, with as many friends as I could gather. A large marquee was erected in the backyard of the unit where I lived, a list of well over eighty people had been invited and huge amounts of food prepared. I wanted to share this moment with the close friends and family whose support had seen me through. There were also friends with HIV/AIDS who, like me, wanted any sign of hope that we could outlive our prognoses. New friends and well-wishers who I had met through my contact with the AIDS Council and the People Living with HIV/AIDS group were invited. 171
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To be honest, I have always loved a party, particularly when I am the one giving it. Even if it is nerve-racking, getting it organised and attending to details on the night, I like the thought of giving others a good time and being in the centre of a social whirl for a few hours. If I take myself back to when I was fourteen years old, organising those fancy dress balls or tennis tournaments in Wunghnu, I can see how much pleasure it gave me. Maybe it comes from being the oldest of six children: I was often the one who rounded them all up for dinner and organised the plates and seating at the family table (as much as you could with that number). I guess such experiences play themselves out through your life. A friend, John, was working hard in the background, doing his bit to make sure people had the best time possible. He was rolling joints from the pot he had grown in a bumper crop amongst tomato plants in his home garden. As the evening approached I counted twenty fat (and I’m sure very powerful) joints sitting on his rolling tray. I wouldn’t be smoking as I’d learnt through bitter experience that I was not able to do recreational drugs, even relatively harmless joints. Maybe for psychological reasons as well as physical, I would become agitated as soon as I’d had more than a few puffs and found it impossible to relax into the experience. My LSD trip back at university and my fragile psychological state in hospital several years before had taught me not to play with my inner equilibrium. Alcohol I could handle, although my liver, trying hard to cope with the toxic drugs I was consuming, would certainly not allow me to drink to excess. The party was a great success, with over a hundred people attending. Melbourne’s notorious October weather wasn’t kind, sending a downpour at about ten o’clock that forced people 172
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under the marquee, which turned out to be not terribly waterproof. At about eleven, when we all came out again into the damp but refreshing air, I had to cut the cake and make the customary wish. There wouldn’t have been too many people at that party who couldn’t guess what my wish was. Later in the night, as a small group sat around puffing on the last of John’s mellowing joints, I became a bit more personal about what reaching forty had meant to me. It was weird to be contemplating death when I was in my thirties, when people are reaching their prime, when their careers, their families and relationships are starting to give them some direction and stability. I was grateful that I felt a real sense of achievement about my seventeen years in the workforce, that I had reached a senior management level and obtained an adequate salary that had stood me well financially when it came to taking a superannuation pension on the grounds of ill-health. I didn’t feel cheated that I hadn’t had a full career, as many of my friends who had died of AIDS had felt. I hadn’t experienced the poverty and misery that came with having to leave your job and going on Social Security benefits and living in public housing. Some of my friends were doing okay in that situation, but for those who had known a fairly affluent, high-achieving lifestyle, this sudden downgrade in what they could expect from life had taken away much of their will to live. AIDS cut you down physically all too easily, but if there were mental factors like these at work, people went earlier, I reckoned. I felt lucky that I had some pluses on my side. In a moment of euphoria and blind optimism, I said to this small group of friends, ‘I’m so pleased to have reached forty. If I make fifty I’ll take you all to Paris.’ Indeed! There were laughs aplenty but in a time when the odds against surviving AIDS 173
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were still incredibly high, those dear friends probably thought it was a pie-in-the-sky chance that I would live to realise that ambition. I guess I didn’t really think it was possible either. In 1992 treatments for HIV were developing at a slow pace. I had been changed to a new antiviral drug, ddI (Videx), which had been introduced in 1992 to help people who had developed a resistance to AZT. My T-cells remained below ten, where they had been pretty much since I developed AIDS. Doctors had thought that you couldn’t survive for long on such a low count, but clearly I was proving otherwise. I’d had a range of irritating health problems, including thrush of the mouth, skin conditions and significant muscle wasting, particularly in the legs. Surprisingly, I had not experienced lengthy stays in hospital and the big bad illnesses that usually came the way of people with no T-cells—with the exception, of course, of PCP. I was keeping that at bay with monthly treatments at Fairfield Hospital. I was doing okay really. I was in a holding pattern, waiting to see where the illness took me. I didn’t have the capacity to think about ten years’ hence; that was the stuff of dreams at the end of a long but pleasant night of partying. If my health was in a kind of holding pattern, I can’t say that my life was. I was busier than ever with the activism and committee work filling much of my days. As convenor of People Living with HIV/AIDS Victoria (PLWHA Vic), I was constantly asked to play representative roles on a range of government and AIDS Council committees. In early 1992 the Victorian Minister for Health, Maureen Lyster, had asked me to sit on the Ministerial Advisory Committee on HIV/AIDS to advise on the perspective of people with the virus. In the middle of 1992 I had been asked to fill a position on the Fairfield Hospital Board of Management, an honour that had 174
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never been offered to a patient before. Fairfield Hospital was unique in doing this. Fifty per cent of the hospital caseload at that time was people with HIV/AIDS and management had learnt early in the piece that consultation with the HIV community was essential to meet expectations. The clients and their supporters were demanding a say in all decisions that affected them. I also attended regular meetings as a member of the board of the Victorian AIDS Council/Gay Men’s Health Centre and of the committee of PLWHA Vic. My diary was full of appointments and meetings and concerned friends would often tell me to slow down and look after my health. My response was that when I needed to pull back, I would, but that I quite liked being involved in the decision-making that could make a difference for my positive peers. My role as spokesperson for PLWHA Vic meant that I was frequently in the media spotlight. Most of the media representatives I have met have been supportive and genuinely concerned to present an accurate picture of my life as a person living with the virus. However, one incident in the mid-nineties with a Channel 7 news reporter was a lesson in how manipulative and sensationalistic their approach could be. I met Nicole out the front of the Royal Melbourne Hospital. The subject of the interview was to be euthanasia. A courageous woman called Janet was in the media over her wish to take her own life under the controversial euthanasia laws that had just been introduced in the Northern Territory. The federal government was attempting to overturn the Territory’s laws. Nicole asked me to give the perspective of a person with HIV. The TV cameraman was setting up to do a long shot of me walking up Royal Parade. Nicole and I chatted amiably until my 175
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jaw dropped—would I mind if she described me in the introduction as a person who was living and dying with AIDS? ‘Why would you want to do that?’ I asked. ‘Well, I don’t want people to think that AIDS is not a serious thing,’ she responded, a little sheepishly. ‘Five thousand deaths later and you think you’re going to have problems getting people to believe that?’ I was getting annoyed. We agreed that she could use the words ‘battling with AIDS’ but there was to be no mention of the words ‘dying’, ‘AIDS sufferer’ or ‘victim’. They were disempowering words, I explained to her, which would take away feelings of hope for positive people and their friends. I walked up a hill as instructed, looking serious but hopefully not too much in ‘victim’ mode. As I got closer, the cameraman swung his camera away from my face and down to my feet. If I’d known he was going to focus on them, I would have worn my best Doc Martens! I completed the interview with Nicole and was quite happy with it. I’d made a few valid points about how repealing the NT law would only scare off other states from reforming their legislation, and how this in turn would only lead to increased secrecy and botched attempts at euthanasia. How I thought it unfair that doctors could be made criminals for carrying out their patients’ wishes. We shook hands and I waited for the 6.30 news bulletin. The news item was entitled ‘Jeff’s Outrage’. The Premier of Victoria’s pro-euthanasia views were aired first. What strange bedfellows I’m with, I thought, as I saw my forlorn-looking frame come into view. What stood out? My feet—I looked as if I was struggling to walk. I was at the top of a hill and out of breath, as anyone would be. The camera focused on my feet as if 176
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I was an invalid who had struggled out of his deathbed to say a few last words. The interview was cut to one line. I looked like I was pleading for my right to die. Nicole’s voiceover said that I told her about constant bouts of diarrhoea and the onset of the blindness that can occur in late-stage AIDS. Concerned friends rang me later that night. Was I all right? Did I really have these conditions? They didn’t realise that I had taken a turn for the worse. I told them how much the journo had distorted the truth. My family had been amazingly supportive about my media appearances, although Julie had worried early on about how the rest of the world would deal with the news that I had AIDS. My father and I had become very close since he found out about my diagnosis and he had never once expressed the slightest disapproval or apprehension about what I was doing in the media. I can’t explain how important my father’s acceptance of my sexuality and my diagnosis has been to me. To have a former shearer, with masculine interests, accept me was remarkable, and testament to the durability of his love and concern for me. We’d had a rocky relationship over the years, going back to the time I told him he should leave home because of the strain his presence was having on Mum’s health. My heart went out to him during the early years after the divorce, when we avoided him to some degree. None of us quite knew how to broach a new relationship. There was a horrible period when he was unable to give Lyn away at her wedding because of a misunderstanding between them. It took time to heal the wounds and in a surprising way my diagnosis seemed to help rather than hinder the development of a closer relationship between us. Whether the possibility of having less time to share with me was part of the reason or whether Dad simply 177
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acknowledged that I needed all of his help and support to survive, I’m not sure. Dad was still uncomfortable talking about sensitive subjects like AIDS. When a fellow member of a local club died from a mysterious ‘blood disease’, Dad acknowledged that AIDS was probably the cause. ‘There’d be few people from around here brave enough to admit they had it,’ he said, suggesting by implication that I was brave (and not stupid) for coming out about my status. Mum had always been a backstop in my life and I was grateful that she had got in contact with a support group for parents of people with AIDS that was meeting in Shepparton. There was a dramatic turnaround in her views about homosexuality and the virus. She spent a considerable amount of time staying at my house in Kensington after I first became ill and then at my unit in Elwood after I shifted there in 1989. She became comfortable with most of my gay friends, having a particular affinity with the more flamboyant and effeminate ones. How I am to explain that, I’m not quite sure. In the early nineties I wasn’t conscious of my media exposure having any effect on my mother, but on reflection it may have contributed to the personal crises she had through the midnineties. Spending over twenty years on steroid treatments to control her daily wheezes took its toll as Mum moved into her sixties. While she had some miraculously good periods of health—allowing us to visit Trevor in Darwin and to holiday in New Zealand—there were signs that her body was starting to react to the powerful drugs. Mum was to experience the paranoia and delusions that I’m told can occur after years of steroid use. She became convinced that a man was hiding under her bedroom window at night. Lyn 178
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came and spent a night in her car outside Mum’s flat to assure her that nothing of the sort was occurring, but Mum rationalised that away as it being the one night he didn’t turn up. Of more concern to me was a phone call she put in to my brother-in-law John, saying that she knew Julie had died in Fairfield Hospital—and when was the funeral? Clearly this delusion was really about her concern for me and the stress that my illness had placed on her already stretched nervous system. My concern was that by being public I was somehow adding to her stresses. I hope not. After experiencing delusions at night, she would be perfectly fine and rational during the day—just as I had been during the horror of those psychotic experiences at Fairfield Hospital. I’m sure we both handled periods of extreme stress in a similar way. As I reflected on the state of my life on turning forty, I can’t say I felt overly optimistic about the future. I survived most days by not thinking about it too much. I had beaten certain predictions to get this far: who could pronounce it impossible that I would live for another ten years if some miraculous new treatments came along? All I knew for sure was that I had lots to live for. I had the good friends who had turned up in large numbers for my birthday party. My life was comfortable, except for the chronic nagging health problems and the drugs I had to take every day. All I had to do was survive any new infections to come my way: infections that seemed likely to happen, given my continuing low T-cell count.
The most devastating thing about living through the early nineties was the constant mortality. Because I knew so many people who were positive, I inevitably found myself involved in 179
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the lives of people who were dying and then, of course, attending their funerals. The only way I learned to cope was to move on and not dwell on the calamity of another death or the sadness of yet another funeral. The nurses and sometimes the doctors would be at the funeral, too, as they were so much a part of everyone’s lives. I took some strength from the way they managed to deal with grief, at least externally. They would express a moment of sadness when discussing someone’s passing and then move on to another topic when the time was right. I could not afford to brood about the grief and loss I was experiencing as it would make me feel depressed and helpless. At times I worried I was becoming a little heartless, not really feeling the full tragedy of a friend’s death, but I guess I was coping in an unreal situation. My involvement was deeper and more intense when I’d been living with the person or if he or she was a close friend. In the middle of 1993 the health of my housemate Phillip King was starting to deteriorate. I had met Phillip through Melbourne Positive Friends and he had moved in to share with me in Elwood after Ken Wright died. He was an easygoing flatmate and his former career as a caterer meant he was a good cook as well. Like Ken, Phillip seemed to have an inkling that he was not long for this world several months before his death. Perhaps he thought this because of his rapidly deteriorating energy levels and increasing need of sleep, but we all knew that this did not necessarily mean death was imminent. We were all living on a tightrope of one sort or another: for some this meant regular visits to the hospital for infusions or chemotherapy, for others it meant spending a lot of time coping with diarrhoea, nausea and low energy levels, which kept people relatively housebound. Phillip had to deal with constant infusions to treat 180
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the CMV retinitis that was slowly causing him to go blind, and he was also suffering from fairly constant gut bugs as the CMV virus spread into his digestive system. A nurse was organised to visit him after I found him almost unconscious in the bathroom, having fainted during a shower. Phillip was amazed that I had the energy to complete my tasks with the AIDS Council and People Living with HIV/AIDS. I assured him that I was probably just as vulnerable as he was with my ten T-cells, but deep down I knew I had been lucky to avoid picking up retinitis. Chemotherapy was ruining his quality of life, and I was to realise later that it was starting to crush his spirit. He didn’t complain and I didn’t pick up the signs that things were so bad, that he probably only had months to live. Phillip went missing one evening and his ever-vigilant sisters, Pam and Liz, were on the phone asking where I thought he might have gone. I had no idea until about 10 pm that night, when he bundled his way through the door carrying huge loads of shopping. Included in his piles was a present of a dressing gown for me. ‘An early birthday present,’ he said, with a beaming smile. ‘Why are you giving this to me now?’ I asked. ‘And what are all these other parcels for?’ He disappeared into his bedroom and nothing further was said about his shopping escapade. It was only a matter of weeks afterwards that Phillip died in Fairfield Hospital, exhausted from months of fighting the virus that had wiped away his immune system and dealing with toxic drugs that had weakened his liver and kidneys. His sisters thanked me for my role in supporting him through the last months of his life and asked if I’d be willing to grant Phillip one 181
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of his last wishes: that his funeral be held in my backyard under the giant twisted willow tree. I was pleased to do this but also surprised that he had never discussed the subject with me. But then, I reflected, we had never really discussed his imminent death openly, even though we both should have had the maturity to do so. Even after years of observing death and living with it, I was not prepared when it came upon me all of a sudden, taking away yet another friend and housemate, yet another lovely man. I’m not sure what the neighbours thought when the hearse pulled up to my back gate but the setting for Phillip’s funeral seemed just right. It was a quiet funeral with family and a few friends gathered together under the giant willow tree that was just starting to show its spring leaves. Only months before, at my fortieth birthday, Phillip had been laughing and drinking with the best of them here, probably choofing on a joint or two if he was in the mood. I think he would have loved the makeshift way we organised his funeral, me trying to work a dilapidated old tape recorder to play Pachelbel and the song that had been popular at a number of funerals, Bette Midler’s ‘The Wind Beneath My Wings’. Phillip’s sisters never quite forgave me for playing that heart-wrencher, which had everyone in tears at the end of the service. Phillip would have loved the aunt who got up and told us how he used to give his nephews and nieces the craziest and noisiest toys every year—half of them didn’t work or broke within minutes but it was the thought that counted. He loved a bit of chaos and if his funeral had been full of pomp and circumstance he wouldn’t have been happy at all. Likewise he would have liked the way we ruined ourselves on red wine afterwards. A few days after the service, Phillip’s sisters arrived to go through his belongings. Inside his wardrobe they found a 182
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delectable surprise. Phillip had carefully wrapped Christmas presents for all of his nieces and nephews and others in his family. That was why he had disappeared that July afternoon, to go shopping for a Christmas he figured he wouldn’t see. His thoughtfulness brought tears to our eyes as the Christmas parcels tumbled out of the wardrobe. I valued the dressing gown he gave me just that little bit more.
I found myself a boyfriend, Neil, later that year. He was the first man to share my bed for as long as I could remember, maybe since before I’d had AIDS. He wasn’t the only man I’d had sexual relations with, as I’d continued to go to sex-on-premises venues when my energy levels allowed it, but the idea of inviting someone back to my house and then continuing to date them had seemed out of the question. It was okay to have casual safe sex with individuals, when the grisly details of my life need not be shared, but to find someone who didn’t mind me having AIDS and still found me attractive—I thought that would be a rare thing. Neil was a bit of a hippie, a long-haired, goateewearing dope smoker, but we clicked for a while. He didn’t have HIV and it didn’t seem an issue to him. He was not interested in penetrative sex so he figured the chance of catching it from me was unlikely. I enjoyed going with him and friends to the Botanic Gardens. Each Saturday afternoon, in a certain spot on a certain lawn, he would lie down and take in the scenery, drink copious amounts of wine and, of course, smoke plenty of weed. I couldn’t believe he could do this every week and not get bored but this place was his anchor, his retreat from the madness and ugliness of the week’s activities. 183
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These regular weekly dates became complicated as I became increasingly involved and possessive of him. He would bring exboyfriends along and I felt instantly jealous that something might stir between these old flames. I had not felt this jealousy since my break-up with Stephen thirteen years before and I was annoyed that I couldn’t control myself. I’d had so little intimacy in my time with AIDS. Now someone had come along and expressed a little interest, and I was clinging onto him as if we had a full-on relationship. The reality was that Neil never offered such commitment, only agreeing to a casual weekly meeting. I wanted more. My interest in a relationship had fluctuated with the growing need to protect my physical health. There was the fear that few people would be interested in entering into a high-risk situation—would they find themselves becoming my nursemaid if I got sick, or would they have to bury me? I also found the idea of maintaining a relationship stressful, given my limited energy levels. But now I realised how stifled my emotional life had been. My counsellor, Eric, said that he thought my life could only benefit from the security and nurturing which came with a loving relationship and that I should not allow my health situation to cloud my aspirations. But even he admitted that Neil was not the right man for me, given his lack of willingness to commit. Perhaps it was time to move on. I was probably starting to come down with an AIDS-defining illness at that stage and my touchiness was possibly part of my symptoms. I was highly embarrassed when, while spending the night with Neil, I had to change the sheets several times after waking with drenching night sweats. It was hardly an attractive or romantic way to spend a night with someone and I was surprised that Neil’s laissez-faire attitude extended to not being 184
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overly fussed about that problem either. He stayed around for a few weeks’ longer but he broke off the relationship after it became clear that I wanted more than the casual arrangement he was looking for. My love life by that stage was of less concern as the night sweats became more frequent and my days were filled with high fevers alternating with the shakes. These were the classic signs of Mycobacterium Avium Complex (MAC), one of the major illnesses and causes of death in people with AIDS at the time. It took over six weeks to diagnose it in blood tests, but my doctor decided not to wait to start treatment. I was admitted to Ward 4 at Fairfield Hospital and pumped with antibiotics and paracetamol to control my temperature. I was feeling vulnerable, as I knew how lethal the condition could be if the treatments didn’t work—as they sometimes didn’t on people with shattered immune systems like mine. The Treatments Officer at the Victorian AIDS Council, Tony Maynard, was to tell me several years afterwards that he had thought that my having MAC after all those years with virtually no T-cells would be a burden that my body could not bear. He thought I would be unlikely to survive for longer than a few months, based on his observations of similar situations. For whatever reason, I did make it through. It was a fairly difficult and uncomfortable time, although never, thankfully, a particularly painful one. I am told that, with the exception of some cancers and conditions like peripheral neuropathy (nerve damage to the extremities particularly the hands and feet), AIDS illnesses are usually not painful. They are miserable, though, with the nausea, diarrhoea and fatigue usually getting the better of people after months or years. I had been relatively lucky with the illnesses I’d experienced, in that they had been self-limiting 185
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and one disease had not automatically led to another, as was so often the case with people with AIDS. It was to take some time to control this nasty bug in my system, with weeks in and out of hospital. Things looked relatively stable when I was released to go home for Christmas, but within a few days I was back in the ward, strapped to a drip and feeling very ill. It was fortunate that for the first time ever our family Christmas was held in Melbourne, at my brother’s house in an outer Melbourne suburb. The sister and brother-inlaw who were dairy farmers had to leave early to get back to milk the cows, but it was a pleasant enough affair. A family photograph taken at the time shows me looking gaunt and pale, having lost a considerable amount of weight during my time in hospital. I don’t remember much more about the day except that for the first time ever I struggled to down the turkey and ham. When I was not interested in food like that, there was something seriously wrong with my world.
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Chapter 16 AIDS Politics
The HIV community sector has had a reputation for being loud and assertive in looking after the needs of its own. This reputation grew out of desperation in the gay community as we tried to stem the number of infections and deaths. As the severity of the HIV/AIDS epidemic grew, members of the gay community realised that it was going to take more than our community resources could muster, and it was essential that government got involved to fund community agencies. To its credit, the Australian government did respond to gay community advocacy on this issue, initially through Neal Blewett, Federal Minister for Health in the mid-eighties. He delivered on commitments for funding of public awareness campaigns and education programs for high-risk groups. He accepted that government couldn’t do this work without the participation of at-risk communities, who could talk the language of prevention and support more convincingly than any 187
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health bureaucrat. It was radical for government to talk about giving dollars to fund gay or drug-user groups, but a serious health problem required a new approach. Each state was responsible for its own healthcare budget. The more conservative states could choose against funding these groups under the initial model proposed by Blewett, and the lack of a national approach could undo the progressive line of the federal government. Blewett decided to tie in the states through a matched funding arrangement that provided federal funds if states gave an equivalent amount. The Queensland government, under the ultra-conservative Bjelke-Peterson, refused to do so and people with HIV/AIDS in that state suffered as a result. In Victoria, as with most other states, the AIDS Council and other groups received funding to work with high-risk groups. The Victorian AIDS Council was receiving close to two million dollars from the state government by the end of 1994 and had a staff of 40. It had shown the government that it could deliver professional education campaigns that dramatically decreased the number of new HIV infections and consequently the health cost to the community at large. The gay community was proud of the agency’s achievements and the organisation had become an essential part of the advocacy framework that government consulted on matters related to HIV and, to some degree, gay issues. It was understandable that the council’s primacy in the epidemic would encourage power-plays from time to time. I had been a member of the council board since 1989, when I was elected to a special position created to represent people living with HIV/AIDS. In that time there had been factions and alliances operating at board level. It was made up of an elected board—six committee members and representatives from each of 188
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the programs. These included the Support program, which looked after ill people who relied on the volunteer care teams, the Education program, whose role was to target gay men with safe sex messages, and the People Living with HIV/AIDS program. There was a lingering division within the organisation, and it revolved around the Support and Education programs. Supporters of both programs felt that they were more important when it came to delivering the essential services needed to manage the epidemic. The Support program felt that their carers—people in the frontline, caring for people in their homes and in many cases helping them to die with dignity—were what the organisation was really all about. The Education program, however, had been given the lion’s share of resources by the government, as their work was considered essential in preventing new infections. The toll, both in human and financial terms, was what government was most concerned about. The team’s output included glossy, high-profile advertising campaigns and their staff members were often young, attractive, savvy gay men. The two groups clashed in style and purpose at board meetings, particularly over who deserved the resources. The Support program, with close to a thousand volunteers on its books, became political in the way it went about achieving its aims. The Manager of the Support program (to this day) is Vikki King, who has worked in various roles in the community sector for many years. She is much admired by her staff and volunteers for the commitment she has shown to people with HIV/AIDS and for the outcomes she has delivered. She has also learnt a lot over the years about how to survive politically in the sometimes turbulent community sector environment. When I was convenor of PLWHA Vic, I soon learnt the value of going to Vikki for 189
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advice on how to advance a cause through the board. Because the majority of the AIDS Council were also volunteers with the Support program, they dominated the board and often had the numbers to win crucial decisions. In my time as convenor I tried to play a ‘foot in both camps’ approach to get what I wanted for our program. It was my style and personality not to make enemies, where possible. By 1993 the camps had divided into those aligned with Support and those who stood with the general manager of the Council, Dr Jim Hyde. I had become firm friends with Jim and my program did see a considerable enhancement of resources. Jim was persona non grata with many in the Support program, however, having put some people off-side early in his management days with the suggestion that care and support services should be mainstreamed with local government (a suggestion he wisely never tried to implement). My friendship with Jim made the Support faction a little less trusting of me and I was treated with some caution and wariness. The climate of activism for people with HIV/AIDS had warmed up with the protests of ACT Up in Melbourne and Sydney in the early nineties. Community agitation for greater access to HIV treatments saw the establishment of the Baume Report by the federal government in 1991. This led to significant improvements in the way the drug regulation system worked. Positive people had become more visible through these agitations and the media was starting to give us a higher profile. Deaths had reached an all-time high in 1993, as treatments remained ineffective for many. Some positive people became impatient with the slow progress in finding new treatments and frustration and anger started to show itself in exchange between positive people, the AIDS Councils and other HIV/AIDS groups. 190
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Nowhere was this more obvious than during the National AIDS Conference in 1992, which saw some wild and angry outbursts from a number of positive speakers. As a member of the executive of the National Association of People with HIV/AIDS at the time, I was embarrassed to see our president stage a mock shooting-up on stage. He said that he didn’t feel the audience understood the realities of living with AIDS for intravenous drug users. I was totally ashamed when another prominent positive advocate chastised the audience, largely consisting of supportive doctors and health professionals, telling them that they were not doing enough to end the epidemic. As if they had not been insulted enough, he ordered all people in the room who were not positive to leave straightaway so that positive people could form a caucus and change the overly medical agenda of the conference. Like a lot of other positive people who deplored these divisive tactics, I walked out and left him to his small group of fellow angry people. I have never been angry about having AIDS—frustrated, yes, and desperate for new treatments to keep my friends and me alive. But I could never find it in myself to blame someone for my situation and kick out at the government or AIDS Councils for failing to stop the carnage. I knew that community organisations and the government had brought about some significant, tangible results. I’m not sure why I didn’t feel this anger but I think it was helpful that I didn’t. In other positive friends, anger led them to take one of two courses: they could channel it into activism and involve themselves in direct action and street protests, or they simmered with a rage that eventually exploded and got them into all sorts of difficulty with people around them. Elections for the Victorian AIDS Council and the PLWHA 191
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Vic boards of management took place in September 1994, and it was clear that there was a change in the mood of the positive people standing for election. I had stood down as convenor of PLWHA Vic in 1993 but had remained on their board. As the AIDS Council board election grew near, I decided not to stand for election, partly for health reasons and partly because I could see a turbulent time ahead. The language at PLWHA meetings started to change, with talk about the need to address ‘positive people’s empowerment in decision-making in the AIDS Council’. We had been excluded too long, said Bradley Engelmann, who was standing for election as a positive president. He was organising a team of positive people including the newly elected convenor of PLWHA Vic, James Nagle. I knew Bradley very well, having been his lover for several months in the early eighties. He was an extraordinarily beautiful eighteen-year-old when I met him, keen to have an older, more savvy gay man show him around the gay scene. I’d taken him on numerous visits to gay nightspots which often ended in very drunken rages to the early hours of the morning, including one wild night where we got involved in a drinkathon with the Indian character from the Village People. Bradley had been a reluctant participant at first in the politics of PLWHA Vic and the AIDS Council. In 1994 this changed when he became the lover of the convenor of the AIDS Council Support program, Daniel Coase. While I have no doubt that this relationship was a genuine, loving one, it was also a fortuitous move in the political manoeuvring. Perhaps now Bradley’s group would receive Support program’s bloc of votes at the election, which would see them move into an executive suite in the newly opened AIDS Council building in Claremont Street, South Yarra. 192
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It was good to have this sudden involvement of positive people—too few of us had been spokespeople on the board. It would be a step forward to have more people with HIV/AIDS around the table. But part of the agenda was about removing Jim Hyde from his position and giving the Support program the goahead to change the organisation’s direction. Bradley’s group easily won the election. This new era of positive people’s involvement in the AIDS Council was lauded in the gay press. At the annual general meeting, when the election results were announced, I was awarded a life membership of the AIDS Council, an honour that is only given to a small number of people each year. It was presented to me by a young staff member, Steven King, who had AIDS too and had been given a short time to live. He struggled to get to the meeting to bestow this honour on me. I was even more moved by the standing ovation I received after I was given the award. I know Australians rarely give anyone a standing ovation and I was chuffed by this warm response from the audience. I also received the Order of Australia, for my services to people with HIV/AIDS, in the Australia Day list of 1995. I had known about it since a letter arrived from Government House in September of 1994 but could only tell a small number of people as the letter asked to keep the news confidential. My mother and father were thrilled at the news and I think I was happiest that they felt this way. Whatever difficulties my having AIDS had meant for my family, I had made the best of the situation, and this award acknowledged that. It was also a recognition of my willingness to be out about being HIV-positive, helping to lift the profile of people with the virus and hopefully changing community attitudes. I knew that Jim Hyde was one of the initiators of the nomination and I was grateful. Many worthy community 193
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workers do not gain this recognition simply because people have not got together and organised the paperwork. Within a few months of the election Jim Hyde announced his resignation. He had spent enough time caught up in constant clashes with the new executive about his responsibilities as general manager. The death soon afterwards of James Nagle, one of the vice-presidents of the executive, rocked the board. How could a man who seemed so fired up and enthused about the new era of positive leadership die so quickly? It almost seemed that once James had achieved his personal goal of seeing a change of management, he let go and the virus took over. People had to take stock of what the pressures of running an organisation had meant for James, their dear friend and mentor. The executive co-opted the convenor of PLWHA Vic, Joe McCluskey, to replace Nagle, informing the board that this had been one of James’ last wishes on his deathbed. This style of appointment was not the norm for the AIDS Council— normally appointments had to be approved by the whole board. Before too long there were murmurs of discontent about the style of leadership of the new executive. They demanded office space for themselves and it soon became clear that members of the executive were closely watching the day-to-day operations of the council. Previously, board members had taken a hands-off approach to management issues. The new manager, Bernard Gardiner, confided to me that the staff found this policing of their work unsettling. The new executive came to Gardiner with recommendations about which staff members should be sacked or disciplined. Gardiner resisted their calls but relations between staff and the executive continued to sour. I had remained distant from all this carry-on. But in June 1995 I was asked back on to 194
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the board when a vacancy came up, and the request apparently came with Engelmann’s blessing. I was soon asked to work on an AIDS Council submission to the Metropolitan Planning Board, which had been set up to decide the future of Fairfield Hospital. The Liberal government, led by Premier Jeffrey Kennett, had made it clear that as part of its rationalisation of hospital services, they saw no future for specialist hospitals like Fairfield. They argued that all hospitals now had the capacity to run their own infectious diseases ward and that this ninety-year-old hospital needed too much money spent on it to justify its existence. But the hospital was a centre of excellence and included the Macfarlane Burnet Centre for Medical Research, the Victorian Infectious Diseases Laboratories and the National HIV Reference Laboratories. It was the major hospital for treating HIV and other infectious diseases in the state. It was also a world leader in infectious diseases research. The quality of care would only suffer if all these units were broken up, making Victoria and Australia less able to fight infectious diseases in the future. As a patient at the hospital, and board member, I also knew the most important reason the hospital should stay open—the ‘culture of care’ that made the hospital so effective. All the staff, from the doctors to the cleaners, had overcome homophobia or misunderstandings about AIDS very early in the piece. When I visited as an outpatient, I could walk the length of the main corridor and be stopped by countless people wanting to have a chat or to ask how I was. This was the standard experience for all of my friends who were patients. Staff looked out for your welfare at all times and became firm friends in the process. This was a place where all of us felt comfortable, and if we were in the last months of life, this place—with its gardens and 195
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peacocks—was a beautiful, peaceful haven where you could die with dignity, with staff attending to your every need. So the AIDS Council and our members wanted to save it, as we had in 1991 when the Labor government tried to close its doors. The community had marched through the streets and put such pressure on Maureen Lyster, Minister for Health, that she buckled and agreed to let the hospital stay open. But Kennett had played a clever and cruel game with the hospital finances in the meantime. The hospital budget was being slashed by millions every year—the government was trying to make the board close it. The hospital could not finance basic components of healthcare, such as diagnostic testing (magnetic resonance imaging, ultrasound and the like), and patients often spent the best part of their day being transferred to other hospitals. The government had introduced a new system of financing hospitals, called casemix, with in-patients allowed to stay for only a certain number of days, according to a standard formula. The hospital would be paid only for that period. To make matters even more difficult, the casemix formula for AIDS illnesses was particularly unfair, giving patients with critical illnesses like PCP a few days to recover. The AIDS Council had to balance support for maintaining the hospital and its culture of care against the possibility that it could become an unsafe clinical environment. A number of public meetings were held by the AIDS Council to brief members on the state of play and to determine our future action. There was a developing feeling that the hospital was unlikely to shake off the power of this government. Small hospitals around the state were being closed with surprising ease. The AIDS Council board asked me to write our first response to the future 196
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of Fairfield Hospital. We supported maintaining its current structure and culture of care with an injection of millions of dollars. But we had to consider the reality that the Alfred, the Royal Melbourne Hospital, St Vincent’s or the Austin– Repatriation hospitals might end up taking over Fairfield’s services. Our community didn’t have the strength to take on Kennett and save the hospital a second time.
Meanwhile, in September 1995, the politicking had begun for the election of a new AIDS Council board. My regular visits to the council premises had staff asking me into their offices for private chats. ‘Would you stand for president, please?’ became a request I got from all quarters of the organisation. ‘We are worried what will happen if this executive gets another term. It will be a vindication of their management style and many staff will leave as a result. They just can’t take it any more.’ Sentiments like these were coming from the Support staff, including some who had been backers of the current executive at the previous election. Of course this type of lobbying is not acceptable under the ethical codes of governance that community organisations are supposed to live by, but that culture had never been closely observed at the AIDS Council. I felt I could not ignore the obvious morale problem that was occurring with staff. Maureen O’Brien, a stalwart of Labor Party local government politics and a target of vitriolic attacks by the executive during her time on the board, asked me to help form a team to oppose the incumbents. It was clear that another prominent positive person would need to stand against Engelmann. I was reluctant, particularly given the toll I knew that the position of 197
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president would take on my health. In some ways I had admired Bradley for his tenacity in taking on the job, despite his problems with Kaposi’s sarcoma which entailed toxic medical treatments. I had also been his friend and lover, and opposition would see the end of any kind of cordial relationship. But he had figured on the possibility of my standing against him and had grown cold and unfriendly to me. There was a lot to weigh up. At the end of a meeting of the Ministerial Advisory Committee on AIDS, a senior bureaucrat from the Health Department expressed his alarm to me at the instability occurring at the AIDS Council. He had picked this up in discussions with staff and he was also reading the pages of the gay press. The executive had decided to take on one gay paper, the Melbourne Star Observer, for printing a negative story about them. In a damaging precedent for gay community politics, the executive had taken out a full-page advertisement—outlining the issues as they saw them—in another gay paper. ‘What can be done to bring some stability to the organisation?’ the bureaucrat said. With the main person responsible for funding the organisation saying such a thing, I became worried about the Council’s future in a whole new way. I racked my brain to come up with an alternative to me as president. I had been impressed with Joseph O’Reilly, the young executive director of the Victorian Council of Civil Liberties, who had been working on a project with PLWHA Vic. He was keen to work with the AIDS Council and had the rare qualities of being highly articulate and media savvy. He had real leadership potential. I rang him up at work and stunned him with my proposition. No, he couldn’t stand against a positive person. He was such a newcomer, it wouldn’t work. ‘How about vice-president,’ I asked, ‘with me as president on the ticket?’ He would 198
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consider that and agreed to meet and discuss it with other members on the ticket. We planned our campaign to change the leadership of the AIDS Council and garner community support. We had a number of staff willing to help us with the design of our material and distribution but we could not be seen to be doing anything with AIDS Council resources. We decided on a theme, ‘Stronger Together’, which was to go against the opposition’s ‘Community Team’ slogan. We designed pamphlets to be distributed through the AIDS Council mailing list. Another member of the ticket and a good friend, Tony Keenan, and I headed off to Cairns for a short break before the election. We were going to be out of town for the lead-up, which I thought was a blessed thing, given the stress I was feeling. This stress built up during the flight to Queensland. I finally cracked and rang Maureen O’Brien from my hotel room. ‘I can’t do it, Maureen. My health can’t stand the pressure. I’ll stand as vice-president but you’ll have to talk Joseph into standing as president.’ She agreed. Joseph was reluctantly cajoled into standing and a quick changeover in candidate statements was arranged. I can’t remember a more stressful time in my life, particularly when I was supposed to be on holidays. My mind was vacillating between the advantages of throwing myself into the political minefield—for the sake of the AIDS Council’s welfare—and withdrawing altogether to protect my health and maybe even my sanity. I well remember sitting around a table talking to friends at the resort where I was staying. They were sympathetic when I explained my dilemma. One friend suggested that I must put my health first. I lit up another Benson and Hedges. I didn’t often smoke but in times of stress I went through packets like 199
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there was no tomorrow. I developed a chest infection, undoubtedly from stress and the incessant smoking. I visited David Bradford at Cairns Base Hospital where he prescribed antibiotics and wrote a medical certificate stating that I could not travel by air for the next week. This would enable me to change my flight out of Cairns so that I could miss the annual general meeting of the AIDS Council. I was petrified of walking into the den of knives I thought would be waiting for me.
On the night of the election, I was later told, the atmosphere was incredibly tense, with groups huddled in corners discussing lastminute strategies. John Thwaites, a state member of parliament, was heard to say that the political manoeuvring and campaigning during this election were every bit as intense as any ALP branch election. The membership found it hard to work out who to vote for, as both sides had similar views on the closure of Fairfield Hospital. The election of Joseph O’Reilly as president was a surprise to many. I was not pleased to witness the demoralising effect this had on Bradley Engelmann but I did believe that Joseph was the better leader. If I had helped to spoil Bradley’s ambitions for a second term, I had to live with the fact and also acknowledge that many breathed a huge sigh of relief at the result. While I have always been the first to push for positive people’s empowerment, I could not agree with the way Engelmann and his supporters silenced critics. If any board or staff member disagreed with their approach on an issue, it was argued back: ‘If you oppose us, you are against people with the virus.’ Many positive people dissented from the views espoused 200
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by this power clique and the election of O’Reilly showed that the membership was able to see beyond the politics of HIV serostatus. The Victorian AIDS Council was not the only AIDS council around the country to have problems—it is probably fair to say that each of them at some stage have had similar periods of instability. The new AIDS Council board was to go through more crises, however, as the board was made up of people from both factions. This made effective decision-making almost impossible. I attended the first board planning weekend in November, to see if I could stand the tension. I found the atmosphere excruciating and resolved I would last only a month and then resign. My health would suffer before long and I could not see the value of working in this unstable environment. Fairfield Hospital was now definitely to close. The government was considering tenders for the transfer of services. An expert evaluation panel was set up to determine the successful final tender and included O’Reilly and Joe McCluskey. Their presence on the panel soon revealed a schism: McCluskey favoured the view, espoused by the Engelmann camp, that the Catholic hospital St Vincent’s should get the nod. But O’Reilly wanted to see the final details of all offers before making a decision. O’Reilly was probably leaning towards the Alfred Hospital, which had a proven record in treating HIV/AIDS patients, but he had not settled on a decision. O’Reilly’s hand was forced on the tender decision. The board voted that he support the St Vincent’s option. They argued that this allowed for a complete transfer of Fairfield Hospital’s culture of care and quoted a number of Fairfield’s senior doctors as being supportive. Others, including myself, were concerned that St Vincent’s staff would need training to change their 201
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reputation for being conservative and sometimes showing discriminatory attitudes to gay men and people with AIDS. O’Reilly decided to take a principled stand. He resigned as president, arguing that the board had put him in an untenable position where he was unable to make a decision based on his best judgement. O’Reilly’s resignation led to other resignations and before long the whole board decided to stand down to allow a review of the organisation to take place. The reviewers demanded a massive change in the culture of the organisation. The competition which existed between programs was to be eliminated, with removal of program representation from the board. What the reviewers were suggesting was the removal of volunteer representatives. The role of the board would now be to govern the organisation, not to manage the minutae of the Council’s everyday life, as it had in the past. The staff, in turn, would have a freer hand to manage their work without constantly having to report to the board. This was a sensible development, although volunteers like myself who had valued community control of the organisation observed it with some sadness. Volunteers have become less valued as a result of these changes. On a human level, there were other negative outcomes. Bradley Engelmann’s health was to deteriorate sharply in the latter half of 1996. I never made my peace with him, despite writing to explain my actions during the 1995 elections. When he died in October I could not bring myself to attend his funeral—not because I didn’t want to show my respect, but because I felt so uncomfortable around his friends. They spoke at his funeral of how the AIDS Council drama had caused his death. If it was a contributing factor, as with the death of James 202
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Nagle, this was a tragedy. Bradley had once been a friend and an intimate of mine. I had cried over the phone to him when I was so sick with MAC that I couldn’t attend his thirtieth birthday. I had adored him and wanted the best for him, until politics drew us apart. In a saner world such an awful breakdown in communication wouldn’t happen. Bradley’s death did get me to take stock of what I was doing with HIV organisations. I was now on the board of three different AIDS organisations (PLWHA Vic, the AIDS Council and NAPWA). I was lucky to have not severely compromised my health during the 1995 election debacle. It was probably time to pull back from one of the organisations or at least their subcommittees. No time seemed like the right time and my resolve soon weakened. Was I hooked on the belonging that the AIDS Council provided? Was I just the kind of guy that can’t say no? After a short time off to restore my energies, I was cajoled into joining a revitalised board in 1997.
In the midst of the AIDS Council fallout, there was anger in the community about the closure of Fairfield Hospital. It was to be an extremely sad and stressful time for patients and staff. It became clear that there would not be a complete transfer of staff and the culture of care, as some of the tendering hospitals had suggested. For starters, resources were going to be spread between the Alfred and the Royal Melbourne hospitals, although the Alfred was to receive the lion’s share. Staff could choose between the two hospitals but it became clear that many would not go to either: the environment at Fairfield had been so special that they were not interested in these other hospitals. The transfer of patients to the new hospitals was sometimes handled badly, 203
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with some patients choosing to be cared for in their homes. It was said that a number of people died during this period because of inadequate care. If true, this is a shameful indictment of the transfer process. It is perhaps not surprising that some individuals decided to take their anger out on the AIDS Council over the Fairfield situation. In February 1996 a tall man dressed in a bad wig walked into the AIDS Council offices and poured a bucket of red paint all over the reception area, covering some of the reception staff in the process. It was fortunate that no real harm was done, although the damage to the premises cost thousands of dollars. This act of madness was no real surprise to Joseph O’Reilly and Bernard Gardiner, who had copped all sorts of irrational behaviour during this time. For all the drama, the AIDS Council and the PLWHA have meant something essential to me. They have given me the resources to achieve things for positive people that clearly I could not achieve on my own. They have kept me involved and interested in the new treatments. It is too much to say that they have given me a reason to live, as my friends and family and my own philosophy have had more to do with that. But some of the contacts I made have sustained me, while others had quite the opposite effect.
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Chapter 17 New Hope
The one promising thing amidst the turmoil of Fairfield closing in 1996 was that doctors now had a formidable new drug to add to their arsenal of treatments. It was called a protease inhibitor and it targeted the virus at a different stage of its replication. The first of a line of proteases to be tried on patients was called Saquinavir. Spectacular improvements in T-cell counts were being reported from the USA where this class of drugs had been available for the past year. At that stage I had no T-cells and my first ever viral load (a new test that measured the amount of virus in your body) was over 200 000—the optimum was a count below 500. I had experienced a severe bout of cryptosporidia diarrhoea, an AIDSdefining illness, in March 1995. I was told it was unlikely to be treatable. I was literally housebound as the diarrhoea was incredibly debilitating: twenty bowel motions a day and I just had to be near a toilet. I was fearful when told that the antibiotic would 205
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probably not work. I had seen other friends with this condition literally waste away as all food went through their digestive system without being absorbed. The state of my immune system didn’t provide me with any consolation either, and I think my doctor, Jennifer Hoy, was very concerned. Amazingly the antibiotic, paromomyicin, did keep the bug at bay and the move on to proteases early the next year helped to restore my immune system. The new drug combination did produce some interesting results: within four months my T-cell count rose to 40 when it had been at zero for the past few years and never over twenty since my AIDS diagnosis in 1989. I felt better, I had more energy and I was starting to feel as if this new drug might start to have a permanent impact on my health. It was having a noticeable effect on other positive people around me too. Within a few months many who had been very unwell were showing a turnaround in their blood results, but also in other ways: they were eating more and feeling better. People were starting to put on weight, which in a wasting disease like AIDS is nothing short of miraculous. Media articles from the USA identified the ‘Lazarus Syndrome’, with people being brought back from a prognosis of imminent death to an improved quality of life. There was talk that if patients took the drugs for long enough, the virus might be eradicated from the body altogether. The end of AIDS! No one could quite believe that theory when it came out of an AIDS Conference in Vancouver in 1996, and unfortunately, as experience was to show, it was to prove a false hope. The treatments did have side-effects. Many people experienced diarrhoea from Saquinavir as well as nausea and headaches. I experienced a period of mood change that eventually led to my hospitalisation. I gather it was not uncommon for 206
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some people to feel speedy or have an elevated mood when they first starting taking Saquinavir. There were reports of people suddenly having the energy to do housework for hours on end. As one friend said, ‘I needed to go out in my garden and keep digging. I dug up a whole garden bed before I stopped and asked myself, “Just what am I doing here?’’’ There were gay men who took recreational drugs on the weekend who would pay hard cash for this experience, people were saying! I was becoming a little out of touch with reality, when I think back on it. A friend of mine, Michael, was dying. Michael had been one of the patients trapped by the botched changeover from Fairfield to the Alfred and his lover, Morden, had decided to care for him at home instead of submitting him to the reigning confusion at the hospitals. I went to visit but I was in such an elevated mood that I think my behaviour was inappropriate for such a sad and serious situation. I don’t think I said anything particularly wrong but Morden picked up on the change in my behaviour and reported it to my doctor, Jenny. She suggested I spend time in hospital for observation but I was reluctant as my mother was coming down that weekend and I was taking her and my niece and nephew to a production of the musical Beauty and the Beast. My mind was not quite right though, and after I had gone through the process of getting my mother to the theatre—she had an asthma attack that morning—and negotiating difficult traffic on a rainy Melbourne day, I came home and collapsed. I didn’t feel confident to do anything. I didn’t feel able to drive a car, or talk to people on the phone or to communicate meaningfully. The next day I rang my doctor and explained my situation and she suggested I go straight to the hospital to be admitted. I had to organise for my brother Alan to pick me up. In the 207
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several hours it took for him to arrive, I experienced a panic attack. I broke out in a sweat and paced the floor like a madman. Time seemed to be going so slowly. Five minutes were taking forever. When would Alan finally get here? Should I call an ambulance? I rang my doctor again for reassurance and then my brother finally knocked. When I met up with my doctor the next day, she suggested I get someone to check my flat. In my panic to get out the door, I had left the phone off the hook. I mention this detail, trivial as it seems, because it shows how powerful the new drug was. It seemed almost as if my body became giddy with the excitement of being able to function more normally, without a killer virus ready to knock it down at every turn. The drug had lifted me up but the overall strengthening process would be a slow and gradual one. I couldn’t expect to be a new powerhouse of energy and stamina overnight. As I should have learnt way back during my psychotic experience, the mental and the physical are strongly entwined in me. My hospitalisation was short and my mood soon stabilised. I had the dubious honour of being one of the last patients treated at Fairfield Hospital before it closed its doors. The new drugs introduced another issue into positive people’s lives. The number of tablets we had to take and the many times we had to take them meant that we spent more of our day preoccupied with remembering to take pills. The Saquinavir regimen involved taking eighteen pills a day, on top of the other antivirals and the prophylactic drugs. My total pill count for the day was 34 and they had to be taken at three different times of the day. When the Saquinavir stopped being effective for me, after about six months, I was placed on a new protease called Indinavir, which had the added complication of having to be taken on an empty stomach twice a day. Including the pills I had to take with 208
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food, I was now taking pills five times a day and had to stop and start my eating to accommodate this regime. Studies have shown that the majority of the population has difficulty remembering to take a simple course of antibiotics in exactly the right way. Research has also shown that if people on HIV treatments don’t take medication correctly for at least 95 per cent of the time, the drugs will stop working. We were left with the unenviable situation of having to be perfect patients, or else! People started to call on their partners or housemates to help them to remember their pills. Beepers and dose boxes were added to people’s routines to try to help them adhere to these often punishing regimens. Another trend around pill-taking in some of my positive friends disturbed me. After a few months some people started to stop taking the pills or not worry much if they forgot them for a few days. After all those years of wishing for new treatments to come and save our lives, I could not understand how they could react in this off-hand way. I talked at some length to my counsellor, Eric, who said that he had patients who actually felt cheated by the arrival of the protease inhibitors and did not want to take them. These people had accepted the idea that had been drummed into us by the media, and even by the medical profession to some degree—‘If you get AIDS, you will die.’ Some patients had not only accepted this likelihood, they had structured their lives around an early death. It is probably difficult for those who have not experienced a terminal diagnosis to understand the psychological adjustment that people go through. Many people with AIDS were told by their doctors that they had two to three years to live and they planned their lives accordingly. It is perhaps understandable that they found it hard to embrace a new, unpredictable alternative. 209
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Some people felt special for the first time in their lives because they had AIDS and could receive care from volunteers from the AIDS Council. It was a tragic reflection on society that there were such lonely, isolated people out there. Some were gay men who had been rejected by their families, were uncomfortable with the gay scene and lived very quiet, disengaged lives. They found it hard to accept the promise of these new treatments, didn’t take them properly and achieved their desired early death. Other people who were considerably more engaged with the world didn’t take them. They were burnt out from fighting AIDS and just didn’t have the willpower to embrace this brave new world of pill-popping. A number of good friends died this way and I had to respect that they had had enough and decided this was their time to go. And the drugs did not work for everyone. Toxic side-effects meant that some people couldn’t take them for long. My inherent optimism stopped me from feeling this way, despite my long history with the virus. I don’t think I ever regarded this virus as a vital part of my identity. I didn’t feel that I was fated to die from it. Likely to die from it, but not compelled to die. For me the routine of taking pills was a lifeaffirming act, given that I could usually see results for the effort involved. More people with HIV started to take treatments because of the benefits of a combined therapies regime. This was later proved to be unnecessary for some—particularly those with T-cell counts over 350—as they too developed a resistance to the drugs. Scientists believed in 1997 that it was important to get the virus under control early in the piece—they described this approach as ‘Hit Hard, Hit Early’—but that theory was later debunked because individuals with relatively high T-cells (around 500) were starting treatments and developing resistance. 210
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Resistance to the drugs became a problem after less than a year on my first protease inhibitor. I had already changed the nucleoside analogue class several times because of this and tried a series of proteases almost as quickly as the drug companies were able to produce them. In 1999 I worked out that I had been on fourteen different combinations of drugs, compared to my days on AZT alone in 1988. These resistance patterns were a cause of great alarm, as it looked like we were fast running out of treatment options and I would soon fall sick. Even when my viral load started to climb and my T-cells dropped, I still felt well. It was clear that these drugs continued to give some benefit even when the clinical results didn’t look so good. In my case I have been able to stay healthy until the next drug comes along or a different way of combining older drugs is available. The main downside to these drugs became known after about two years. Professor David Cooper and his team of researchers from the National Centre for HIV Epidemiology and Clinical Research in Sydney had noticed the development of abnormal fat deposits combined with wasting in people taking the combination therapies. The fat deposits were in the abdominal area but also in the breasts (particularly in women) and occasionally on the back, causing ‘buffalo humps’. These changes in fat storage can be associated with insulin resistance, raised cholesterol and triglycerides and other metabolic disorders. The scenario painted by researchers was that while these drugs might save us from an early death from AIDS, we might have to deal with diabetes or an increased coronary risk. People might die from the side-effects of these drugs before the AIDS virus did its damage. Along with the fat deposits, people with HIV were also losing weight from their faces and their arms and legs. This 211
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syndrome had been noticed previously with people taking nucleosides, although it was never exactly clear whether the virus or the drugs caused the problem. When the proteases and the nucleosides were put together, the process seemed to accelerate: patients reported that veins jutted out in their legs and arms. They looked like muscle men on steroids, except they didn’t have muscles. The most alarming loss of weight for many people occurred in the face. Deep crevices formed in people’s cheeks, and their faces looked tired and gaunt. This syndrome was called lipodystrophy and its causes and solutions are not exactly clear to scientists today. In Australia it was estimated by Professor Cooper and others that some 64 per cent of people with HIV reported some level of lipodystrophy after two years of treatment, but doctors in America did not give a figure that high. All I knew was that I had the syndrome fairly badly by 1998, after two years on the combination treatments. Since being diagnosed with AIDS I hadn’t been particularly happy with my looks. My legs had wasted badly during my episode with PCP and no amount of gym exercise put condition back on. In photographs taken after my first AIDS illnesses I looked like a scarecrow, with very skinny arms and legs and a reasonably gaunt face. Several years later though, in 1992, I was much healthier, with a rounder face, slightly more condition on my arms and legs and a more robust look. The few treatment options available were at least enabling me to stabilise my life. My eating patterns were good enough for me to enjoy reasonable health. I remember being told by the dietician at Fairfield Hospital to eat everything and anything and to drink highkilojoule supplement drinks as well. I never disliked my appearance enough to be frightened to go out on the gay scene or even to go looking for sexual partners at 212
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venues late at night. I didn’t feel intimidated enough to hide away from the big wide world. Success as a sexual partner at Club 80 helped to restore my confidence that all was not lost in the looks department. And my boyfriend Neil had clearly found me physically attractive. But now this confidence was put to the test. I first noticed that I was putting on weight around my stomach: I could no longer fit into my size 32 jeans. It was a weird way to get fat. My stomach was bloated, pushed out from within by fat deposits. With my skinny arms and legs, the bloated stomach gave me the appearance of a starving child. It was not an attractive look. Positive women complained that their breasts became too large. A lot of us were becoming disturbed by these unusual changes. Of course we figured we’d have to live with whatever sideeffects came along, given the alternative. We didn’t want to revert to the old uncertainties with AIDS-defining illnesses. Unless the side-effects became unbearable, we had little choice. The loss of fat from my face was particularly galling. It was the one area of my body that I presented to the world on a daily basis, something that couldn’t be hidden like skinny arms and legs or a protruding belly. People with facial wasting were often afraid to go out socially, particularly to gay bars or community events where they felt a knowing gay community could immediately tell they were HIV-positive and on treatments. This ‘AIDS look’ was not unlike the haunted skeleton look that AIDS patients had become known for in the late eighties; only this time people were not on the verge of dying, and were trying to live normal lives. I did start to become increasingly concerned about the condition, trying hard to cope when I looked in the mirror or when a friend presented me with a photograph that included my 213
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warped visage. I looked tired and drawn all the time and my sunken cheeks made me look very unhealthy. I now couldn’t find sexual partners. While I had to acknowledge that I was getting older and could hardly pull young attractive guys even if I’d wanted to, I was finding it harder to attract people of my own age as well. Some people didn’t mind having sex with me regardless of status, but many found this reality too confronting. In short, the look was a turn-off, and this situation caused considerable despair. In January 2001 a new procedure became available in Paris. Injections of a synthetic form of lactic acid (called polylactic acid) became available to treat the symptoms of facial wasting, at least for a period. The Treatment Officer at the Victorian AIDS Council, Tony Maynard, and the National Treatments Officer at the Australian Federation of AIDS Organisations, Colin Batrouney, succeeded in convincing drug companies—whose products had, after all, led to the lipodystrophy—to send a Melbourne plastic surgeon, Dr Brett Archer, to Paris to learn the procedure. Dr Archer was convinced that the treatment was a success. He began treating patients in July 2001 and I became one of his first patients. The procedure was moderately expensive as it was not covered by Medicare. I had to find 1400 for three treatments. A series of injections was put into the face: short, sharp stings that were painful, if deadened a little by anaesthetic injections into the mouth. My face swelled immediately. I looked in the mirror in the surgeon’s room to see this big round face, with few of the old bumps and crevices. However, it was an illusion: the swelling went down and I realised that the process was going to be a gradual one. After five injections (over a year) I felt a lot better and people started to compliment me on my looks. 214
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In the grand scheme of things I suppose facial wasting is not the most serious health concern I am facing these days. The intervention did help me psychologically, and even if its effects only lasted for the predicted eighteen months or so, I was sure it would be worth it. However, I should be more worried about the state of my blood sugars. I have been a borderline diabetic for the past two years as a result of the HIV treatments. Every morning now I have to prick my fingers to check my blood sugars, which all too regularly register above the diabetic ‘10’ mark. I have tried to change my diet. From being told by the Fairfield Hospital dietician to eat everything, I am now being told to eat low-fat, low-sugar, or low glycaemic index foods. I am expected to check a chart of meat and vegetables before I do my weekly shopping and include the healthiest foods. Needless to say I don’t comply with these instructions as carefully as I do with my medicines. It has been six years since the dawn of the ‘protease age’—or more exactly the era of HAART (Highly Active Anti-retroviral Therapy)—and there have been advances in nucleoside analogues and non-nucleoside analogues as well. Life is considerably better. From the time in 1995 when I called the executor of my will, John Andrews, to go through the list of who would receive what, I had gradually but surely learnt to feel more secure about my future. As I write, there still is no cure for AIDS, but there is a lot of hope amongst doctors and patients that many people with HIV will have a lifespan of at least twenty years, if not more. As someone who has now reached at least my nineteenth year with the virus (I cannot be sure if I have had it longer than that), I am confident my time will exceed twenty years. I hope that I will survive to witness a revolutionary breakthrough, such as a 215
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vaccine. But I cannot be overconfident. In 2000 I attended six funerals of friends who died of complications related to AIDS or their treatments. When the treatments no longer work for you— which is possible for each of us—then you have very few choices left. My doctor has been able to get me on to the latest drugs as they arrive and to re-jig old combinations when resistance patterns looked bad. At this stage I am doing fine and my T-cells are much higher than before I first developed AIDS.
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Chapter 18 Education
The change in treatments has had many repercussions for the gay community. Some gay men who have been vigilant about safe sex during the scary years of multiple deaths have relaxed their defences as messages of hope filter through the community. They see the drop in the number of death notices in the gay papers, and they hardly ever see sick or disabled people with HIV/AIDS in the bars or clubs. It is not an urgent problem any more, is it? In my work with PLWHA Vic over the years I have seen many people who have recently seroconverted with HIV. Many of them are young gay men under 30, often good-looking, intelligent people with lots to live for and lots of potential. I wonder how they could put so much of their future at risk for a few minutes’ pleasure with someone whose HIV status they were not certain about. The reason soon becomes clear enough. We are talking about 217
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sex here, and a complex array of related matters: self-esteem, the desire to be loved, irrational decisions made because you think you are in love, being high on recreational drugs or alcohol, and so on. Human beings have been making mistakes to do with sex for centuries, hence the epidemics of sexually transmitted diseases, the dramas of infidelity and sexual molestation, rape and sexual violence. The gay men I speak to are vulnerable when it comes to loving, and the less experienced or strong-willed find it hard to say, ‘No, not without a condom.’ It is not an easy negotiation and often assumptions or misunderstandings about a partner’s HIV status can get gay men into lots of trouble. Needless to say, the young can be the most vulnerable unless they have learnt codes of safe sex behaviour at school or from supportive gay peers. I have often talked to young gay guys who say things like, ‘HIV is for those forty-something leather queens. They’re the ones that have it. People my age are clean when it comes to HIV.’ Or they admit that they don’t know anyone with HIV and have the impression that it is not an urgent problem any more. Damien and I went out to lunch recently after a mutual friend, Mathew, suggested I might be able to help him. He was a 22-year-old university student who had just become HIVpositive after a six-month relationship in which his partner assured him he was HIV-negative. Damien believed his partner because he was very much in love with this guy and didn’t think he would betray him on something that important. He was not clear whether his partner knew he was positive: like a lot of young guys, he had avoided the issue and his partner had not tested for years, as was revealed after Damien’s seroconversion. Damien wanted to know all there was to know about HIV: the treatments, the side-effects, the discrimination. He even 218
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wanted to know about the illnesses you could get. I wasn’t prepared to tell him all the gloomy details because too much information might freak him out. He persisted with questions about my history and I gave him a few details but also assured him that his health wouldn’t be threatened by these conditions in the near future, if at all, given the new treatments. It took about ten years for my immune system to become so weak that I developed AIDS-defining illnesses, and I did not have the benefit of antivirals to stop the virus’s progress. All of a sudden Damien leapt up from his chair and made a dramatic exit from the restaurant, choking back tears. Mathew rushed after him and tried to comfort him. But Damien decided to take the train home. ‘It’s all dawned on him, what it means to have AIDS. When he came into the restaurant, he was approaching it almost as an academic question,’ said Mathew. ‘Meeting someone who has AIDS has really brought the issue much closer to home.’ I have found this situation repeated often when I talk to newly diagnosed people, regardless of their age, sexuality or gender. When it strikes them that they have a potentially deadly virus in their system, they are usually highly traumatised. They need time to adjust, to get the issue into perspective, maybe with the help of a good counsellor or HIV-positive friend. There are a number of gay community observers who have suggested that a positive test should not be such a big deal for people these days. They think people should be consoled by the fact that there are treatments to prolong life, and that people infected now will likely see a cure in their lifetime. Such comments are incredibly ill-informed and wrongheaded. It is only small consolation to know there are treatments available. Who wants to put up with loads of tablets every day 219
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and endure the side-effects? Who wants to tell their partners that they are infected with HIV? Who wants to live with the fear that something might go wrong with their health, no matter what the prognosis is? I have spent some time talking with positive women who have seroconverted. Heterosexual males I have spoken to less often—some are uncomfortable being around gay males. The women’s issues are often heavily centred on the welfare of the family if there are children involved, and their great concern about confidentiality. As Sonya, a former president of the support group Positive Women Victoria, has pointed out to me on a number of occasions, women with HIV are not living in an easily identified and supportive community as can be the case for gay men. They might be living in an outer suburb with children to get to school every day. They are less likely to find a sympathetic ear from the people around them. AIDS is not something familiar to your average family in the suburbs: it is part of the gay or injecting drug users’ world they think. For a long time positive women’s issues did not get any publicity because of the lack of women prepared to come forward and talk. The numbers have always been small but have increased in recent times. One positive woman, Bev Greet, joined PLWHA Vic when it started in 1988. She spent months searching for another positive woman to have as a peer. As numbers rose Bev set up a support group, Positive Women Victoria, which over time was funded with its own worker and its own office, first at Fairfield Hospital and then at the Alfred Hospital when the transition of services took place. Positive Women Victoria has been important in raising community awareness about the epidemic that faces women. They have opened up dialogue with doctors and hospitals about 220
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issues surrounding conception, pregnancy and childbirth, now that HIV treatments have lessened the risk of maternal transmission. They have helped positive women cope with the special stigma they say comes with being a woman with HIV. A woman is often assumed to be an intravenous drug user or a prostitute if she tests positive. This view has sometimes been expressed by young, inexperienced hospital registrars—until groups like Positive Women get to hear about it and swiftly set about correcting that doctor’s view of the situation. Education campaigns produced by the AIDS Council are for gay men, as the state government has provided funds specifically for this purpose. This has been a source of concern for Positive Women Victoria because they clearly want to prevent other women from catching the virus through unsafe sex, as so many of their number have. The bureaucrats in charge of the dollars for education initiatives have decided that the majority of money should go to people at highest risk: to gay men, intravenous drug users and sex workers. They regard the relative low-risk situation for heterosexual women as not worthy of substantial funds. Whatever the arguments raised, this doesn’t sit well with heterosexual women who were infected from sex with a man in this country. A support group for heterosexual men and their families has been funded in Victoria in recent times. Called Straight Arrows, this group offers peer support to men who are not comfortable seeking the services of the Victorian AIDS Council. This is not necessarily about homophobia but about being comfortable with people of like sexuality, who have been through similar experiences in adjusting to their HIV diagnosis. There has been an increase in HIV transmissions in recent times and more effort needs to be made to understand why this 221
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is happening and how to prevent it. In Victoria in 2001, a 40 per cent increase was recorded. Sexually active homosexual men make up much of this number, but there was also an increase in infections amongst people who have arrived here from Africa and Asia. New South Wales, with the highest gay population in Australia, did not record an increase, which stunned some observers and had epidemiologists arguing about which state had the most accurate surveillance systems. Anecdotal reports from people who attend gay sex-onpremises venues in Sydney point to a significant increase in unprotected sex. The Sydney Gay Men’s Periodical Survey also reported more people having unsafe sex at least some of the time. The national number of HIV infections remains around the 600 mark annually—still too many people, in anyone’s thinking. Educators at the Victorian AIDS Council have considered why gay men are willing to risk HIV infection. Their analysis shows that those at highest risk are people attending sex-onpremises venues and those in the first six months of a relationship. At sex-on-premises venues the impromptu nature of the sex means that involved negotiation rarely takes place. It is essential that condoms are readily available at the venues—this has always been a condition in these venues’ licences, but some owners are more vigilant than others. New education campaigns need to target people who assume another’s HIV status based on looks alone. Young gay men who suddenly find themselves head over heels in love with a new partner find that their resolve to continue safe sex might be strong at the beginning but wanes as the relationship develops. In moments of passion, a negative partner might decide, ‘I just want to be close to him.’ Developing the ability to say no to unsafe sexual behaviours is particularly 222
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tough when you are just finding your confidence in the often intimidating gay scene. There are many other pressures in the gay community that can lead to increased risk-taking. The large dance parties that have become a fixture on the social calendars of many gay men and women are often an orgasmic experience in more ways than one. The entrancing music, the spectacular laser lightshows, the wild, uninhibited dancefloor atmosphere, the ecstasy and amphetamines—all create a heightened state of excitement. In such moods people will seek out sexual opportunities in nearby toilets, darkened areas or in play spaces provided by the organisers. While AIDS Councils will usually make sure condoms and lube are available, some partygoers still engage in unprotected sex. The Internet has brought its own pressures. The development of chatlines—where people are meeting for the sole purpose of organising sexual liaisons—has increased the speed with which you can arrange casual sex. Now that photographs can be downloaded in a second, individuals feel more confident to take a plunge and meet someone new. This should be a positive thing, in my view, and as yet I am unaware of any research suggesting it promotes unsafe sex. However, HIVexperienced GPs have said to me that they have noticed some sexually inexperienced guys (often unfamiliar with the gay scene and its safe sex culture) are becoming infected through contacts met over the Internet. This indicates that AIDS Councils should be involved with the cybersex culture in whatever way they can. It has been suggested that educators could participate in chatroom discussions, putting forward safe-sex messages. AIDS Councils could buy advertising time on chatlines to promote safe sex. 223
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About two years after the arrival of the combination therapies, a trend developed on the Internet in the USA, and later in Australia, that I found disturbing. Barebacking sites are a cyber venue for people wanting to find partners who do not want to wear condoms. The term ‘barebacking’ was coined by HIVpositive porn star and editor of the North American magazine, Steam, Scott O’Hara. He believed that barebacking added an eroticism to the age-old practice of anal sex. ‘I’m tired of using condoms,’ O’Hara wrote, ‘and I won’t and I don’t feel the need to encourage negatives to stay negative.’ This defiance was quickly taken up by other HIV-positives, writing in national magazines in the USA like POZ and forwarding the line that pos people shouldn’t have to play safe sex police to stop other gay men getting infected. I find this outrageous. I am not particularly fazed by the idea of positive men having unprotected sex together, although there are some scientists who believe it is possible to transmit ‘superinfections’ of HIV—a drug-resistant form of the virus—from one positive man to another. This has not been conclusively proven and many positive couple are prepared to take the risk. I am more concerned about the potential for HIV-negative men to be induced into a glorified sex culture of ‘cowboys’ at the local barebacking club. Some of these sites advertise sex parties where condoms are not used. Again, I don’t object to such parties if they are for positive people only, although the cautious side of me wonders about the heightened chance of picking up STDs and putting added pressure on one’s immune system. My problem is that there is no ‘positive only’ policy. Some of the barebacking sites advertised for people who wanted to be infected with HIV (called ‘Bug-chasers’ in their twisted terminology) to get in touch 224
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with those happy to do the infecting (called, even more disturbingly, ‘Gift-givers’). I have surfed these sites and read some bizarre stories about people wanting to find the ‘cutest father for their virus’. I wonder if the world has gone mad. How can anyone with an ounce of sense, with any knowledge of the immense damage and destruction that HIV wreaks on our bodies, want to get infected like this? Some friends told me to calm down, that these stories were probably just that—people’s fantasies wound up in the often imaginary world of Internet chatlines. (Virtually no one tells the truth about their age, their looks or their personal statistics so why believe stories of bugchasing, I was told.) I am not so sure and I have written a number of articles on the subject in the gay press and in the magazine Positive Living. My argument is that positive people have a role to play in all sexual liaisons with someone of unknown status. We have to insist on safe sex and protect the other partner. If the other person is insistent on going ahead anyway, my view of the world is that he or she must know your status and be able to weigh up the consequences. Personally, if someone said they were negative and wanted me to have unsafe sex with them, I’d refuse. I wouldn’t want their potential infection on my conscience. This also happens to agree with the law in most states of Australia. NSW law states that an HIV-positive individual must inform their partner of their status before having sex (a law more honoured in the breach than in the observance if ever there was one!). In Victoria you can be convicted if found guilty of recklessly endangering someone’s life by transmitting an infectious disease. Having unsafe sex when you know you are HIV-positive has been sufficient to convict one man in Victoria and one in Western Australia in recent times. 225
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Some other positive gay guys have put a different view in the media and in community discussions. I wrote an article in reply to a well-known figure in Sydney’s gay community, Geoff Honnor, after reading an opinion piece he wrote in the Sydney Star Observer, ‘Do You Jackaroot?’ Scott O’Hara had glamorised the term ‘barebacking’, and I felt Honnor was trying to provide an Australian equivalent with his humourous but equally glib term, ‘jackarooting’. Honnor wrote that things had changed, now that positive people were feeling better on treatments and were out there having sex. His view was that negative people better catch up in their attitudes to safe sex—that positive people were tired of having to look out for negative guys’ safety and that the reality of a lot of sexual situations in back rooms made negotiation nigh on impossible. He was right in his latter observation, but I couldn’t wear the suggestion that because positive people already have the virus, or because we’re tired of using condoms, we shouldn’t have to share responsibility for safe sex any more. Of course the debate is much more complicated. AIDS educators have long held the view that gay men cannot be expected to use a condom every time, in every situation. They have talked about negotiated safety, particularly between partners of the same negative status who might agree to have unprotected sex with each other but promise to have safe sex with any other casual partners. The reality of gay men often having sex outside their primary relationship has to be acknowledged. In heated sexual situations in sex-on-premises venues, educators have acknowledged that people need skills to live up to the safe sex promises they have made. When people slip up, they need support such as counselling or peer support groups. Positive men have had to fight to be included in debates about education campaigns. As someone involved in the push to 226
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have positive people’s perspectives included in all education campaigns (you can’t get infected without a positive person being involved, we argued), I was annoyed that some positive guys wanted to derail the idea of a cooperative safe sex culture with the selfish ‘I only need to think of me’ attitude. At the same time, PLWHA groups did not want to encourage a repeat of the culture of blaming positive guys that was seen in the eighties in the gay community. As community despair about AIDS grew and people continued to get infected, it was easy to scapegoat positive people. ‘If only those positive people wouldn’t have unsafe sex, we wouldn’t have a problem’ was the logic. This led to discrimination against gay men by their own peers. Education campaigns that talk about shared responsibility for safe sex are the best approach. Targeting risk groups with HIV/AIDS information that takes into account cultural, linguistic and social issues has been a successful approach in Australia in recent times. Injecting drug users have seen infection rates halt with the introduction of free injecting equipment and needle exchanges in the eighties. Sex workers have been resourced to spread safe sex messages, and the number of positive sex workers in Australia, particularly amongst those working in brothels, is said to be extremely low or non-existent. People from culturally diverse backgrounds have been involved in developing safe sex materials in many languages that are also mindful of cultural sensitivities. The continuation of these targeted approaches under the umbrella of a specific National HIV/AIDS Strategy is hopefully the way Australian governments will proceed until HIV/AIDS is no longer a problem in our society. My contribution to educating young people about HIV/AIDS has been to participate in the PLWHA Victoria Speakers Bureau 227
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that visits schools to talk to students about the experience of living with HIV and how to prevent its transmission. The experience has been a rewarding one, even though it has provided me with a few déjà vu moments, thinking I was back in charge of the riotous 2B at Rochester High School. The schools that invite us to speak have usually prepared the students with some basic knowledge and also, I imagine, a warning about respecting the visitors. I say this because I have never felt unwelcome or that the issue of my being gay or being HIV-positive is particularly threatening for my audience. I have generally received a warm welcome and been listened to attentively. I know that for some there is awe that they are meeting their first openly gay man—certainly their first person with AIDS— but I see no fear or irrational responses on their faces. Hopefully there is increased awareness about gay issues circulating amongst teenagers in schools these days, and less homophobia. I have had obviously straight footballer-types ask sensible questions about my sexuality and my illnesses without the slightest embarrassment; in my day as a student, to even ask a question of someone who was a bit different from the norm was to somehow show your weakness or maybe your secret wish to be like that person. Of course, there are still misunderstandings out there about sex and sexuality. But the responsiveness of schools and students gives me some hope that life might be easier for gay students in society in the future. We can only hope.
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Chapter 19 Support
Richard died over a year ago after a protracted struggle with HIV. In some ways his story has become typical of a group of people with HIV/AIDS who have lived with the virus for a long time—usually at least fifteen years—and who have run out of treatment options. The drugs no longer fight the multi-resistant virus or their organs can no longer cope with the toxicity. I had known Richard since the early nineties, when he arrived at the Positive Living Centre looking to talk to other positive people about living with the virus. He was an extremely handsome man with an energy and enthusiasm that soon had many people engaged in conversation with him. He seemed to have his life in order—a relationship with another positive guy, his own house and garden in the hills, and an understanding employer who he enjoyed working for. He was seeking out other positive guys for company and to keep up with the latest news on treatments and other issues. He joined a peer support group and got to meet a lot of new contacts. 229
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About six months later I saw him at Fairfield Hospital in a dreadful state. He had lost huge amounts of weight and looked extremely unwell with all kinds of drips and tubes attached to him. He’d had his first AIDS-defining illness and there was some concern about his prognosis. When I talked to him, though, I got a different story. This was a glitch that he would soon be on top of—no illness was ‘going to knock me off my perch’ quite yet, he told me. So it was to be with Richard, a particularly resilient and cocky little fighter against AIDS. Within a few months he was back to normal, as if nothing significant had happened. The arrival of proteases in 1995 certainly helped the rejuvenation of his health but there can be no doubt that his mental grit had something to do with it as well. His health did have its ups and downs over the next few years but he generally got to do the things he wanted to do with his life: tending to his huge garden, taking his dog on long walks and visiting his many friends. When his treatments stopped working and he had his spleen removed, Richard was informed that he couldn’t take any more HIV antivirals because of their toxicity. He wasn’t ready to give up. He stayed alive for some two years after his doctor’s predictions and made the most of his life. He was a great supporter of the Melbourne Storm rugby league team and somehow— through force of personality—managed to inveigle himself into their dressing rooms and occasionally into the members’ area at matches. He almost became a club mascot, never missing a home game and often attending interstate matches, despite his declining health. The team signed a guernsey and a football for him, which sat in pride of place beside his bed at the Alfred Hospital’s Fairfield House where he spent the last months of his life. A member of the Melbourne Storm’s management came to 230
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Richard’s funeral to acknowledge the special place he’d had in the affections of the team. A few weeks before he died, he and a friend who was also fairly unwell with AIDS went to an all-night dance party run by the gay community for New Year’s Eve. He had taken some recreational drugs and was having a wild time watching the activity from his wheelchair at the side of the dancefloor. The two of them stayed up till the early hours of the morning. Richard took two days in bed to recover but the important thing was that he had achieved a goal he’d set: to enjoy a wild night out on the town, to celebrate yet another year, despite all predictions. I mention Richard because, while he was a unique and exceptional character, he is also representative of quite a number of positive friends who are chronically ill. They have been close to death on a number of occasions but they keep hanging in there and surviving. They have a spirit of survival that is incredibly inspiring and life affirming. I have been lucky that my health has been better than theirs—I can keep taking the drugs and my organs are able to take the punishment. I am aware that this can change fairly quickly and I am grateful that for most care situations there is adequate support available in Melbourne. There are a significant number of people with HIV/AIDS who require acute and palliative care services and some strong advocacy by the Victorian AIDS Council in particular has ensured these services are provided. Despite some opposition several years ago from economic rationalists on the Alfred Hospital board (who wanted to build a revenue-raising car park), Fairfield House, a palliative and respite facility, was built on the hospital campus. This state-of-the-art facility provides everything from end-stage palliative facilities to day-care programs including occupational therapy. 231
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But there are gaps in the system for those individuals who do not require constant hospitalisation but do need supervised care—for example, those suffering from conditions like AIDSrelated dementia. I have been involved in a massive advocacy push since 1992, in which a range of groups from the HIV sector have argued for the establishment of supported accommodation units for people coping with conditions like cognitive impairment, which require high levels of care. After years of advocacy we finally received a cheque from the federal government for 860 000 in 1996—one of the last cheques to be signed by Labor Housing Minister Brian Howe before the election that year. Seven units in Elwood were purchased, close to the Alfred Hospital. This service has provided attendant care for seven clients with high needs related to their AIDS illnesses, but there is still a lot of unmet need in this area. AIDS Council care teams continue to fill the gaps where they can, but further advocacy for the needs of people with advanced HIV illness needs to happen. People are living longer because of the treatment, but in some cases this has extended the period of care needed to maintain people’s quality of life. Sometimes the lack of suitable care has meant that people with dementia have been placed in nursing homes with people two or three times their age. The type of dementia these people experience is not so severe that they are unaware of their environments, and they would prefer to be with people their own age. It is true that the number of cases of advanced AIDS illness has decreased markedly since the introduction of combination treatments. There are many more people remaining HIVpositive and not developing AIDS, and many people with AIDS, such as myself, who continue to remain well. It is surprising that the Victorian AIDS Council’s HIV 232
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Services program, which provides care teams to support people with advanced illness, reports that they have had no significant decline in the demand for their services. The number of care teams they are providing is about the same as during the midnineties. What is different is the nature of the care, with less call for 24-hour terminal care and a greater need for single-member carers to provide emotional support. There can be long-term consequences of living with a debilitating illness. People in their forties or fifties have cut themselves off from friends, former workmates and family after their diagnosis. They are often living on a disability support pension, in public housing estates, and have little money or inclination to engage with mainstream society. They left work thinking they didn’t have much time to live. The new treatments changed all that, but there have been no real changes to their quality of life. They still have chronic health problems and few friends to look to for support. The AIDS Council support workers aim to help these isolated individuals to re-engage with society, for example, through the provision of ‘buddy’ volunteers who might take them on outings or shopping. These people are often not well enough or confident enough to go back to work or do volunteer activities and it has been important that service providers have acknowledged their needs exist. Some people have said how easy it was to lose basic social skills when they had bunkered themselves away as a way of dealing with HIV. Others were too frightened to leave their houses because of the way they looked. They saw the effects of lipodystrophy as being so ugly and confronting that they were unconfident to go out in public, particularly to any kind of event where gay men would know what ‘the look’ meant. 233
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Other people deal with the pressure by turning to recreational drugs and alcohol. Sometimes substance abuse problems placed these individuals at risk of contracting HIV in the first place. Stress leads them to keep indulging in self-destructive behaviour. Drug and alcohol workers now collaborate with social workers at the leading HIV hospitals to help patients control their lives. Drug and alcohol abuse can only accelerate the progress of HIV and the decline of the immune system. There have also been programs developed to help people return to work. In Sydney a successful ‘reconstruction project’, run through PLWHA NSW, has helped individuals to look at their changed life priorities and give them a new focus for future employment or community work. Such programs acknowledge that people have been out of the workforce for several years. People need help to develop new skills to deal with changed workplaces and work routines. Many have taken on part-time jobs to allow their energy levels time to adjust. Long-term strategists at AIDS Councils have wondered about the future of their organisations and the government funding that allows them to stay open. When will governments no longer regard HIV/AIDS as a public health emergency deserving of the taxpayer’s dollar? Will there be a day when AIDS Councils, with all their resources and skilled personnel, have to close their doors? The AIDS Council of NSW, which has an annual budget of around seven million dollars, did some soul-searching within their affected community several years ago and concluded that the current change in the climate around HIV meant that more emphasis should be placed on gay and lesbian health. AIDS Councils have established important centres of excellence in health promotion and can serve the wider health needs of the gay and lesbian community. When 234
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HIV/AIDS is over it would seem like an astute and sensible path for governments to involve this community rather than exclude them as in the past. The funding dollar will be much smaller, however, and alternative sources of funding, including partnerships with the private sector, would need to be explored. For the moment though, HIV/AIDS is not over. The most optimistic predictions say that a preventative vaccine is ten years away. Therapies for HIV are far from perfect and resistance patterns continue to limit the effectiveness of drugs. We will need support services for many years to come, along with ongoing education campaigns to prevent people from being infected by this horrible, deadly virus.
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Chapter 20 Positive
I have lost both my parents in the last few years. My mother died in June 1996 and my father in July 2001. Both deaths were sudden and I didn’t have a chance to say final goodbyes. They died from heart attacks and were gone in a matter of hours. Although they both died at relatively young ages—Mum was 66 and Dad 72—they would probably have preferred this to living in a nursing home. They would also be relieved that they didn’t bury one of their own children, as had been their fear through much of the nineties after they learnt of my AIDS diagnosis. For all the ups and downs in my family life, I have come through feeling I have always been loved. Maybe I can put that down to the stable early years of my parents’ marriage. Childhood has a feeling, a texture that you carry around with you all of your life. For me, that was the feeling of being tucked into bed at night under a bunny rug by my sweet and adoring 236
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mother. She was consistent in her love, despite her emotional and health traumas. Also loving were my grandparents and my aunts, particularly Aunt Gladys, who has always looked out for me. My Nana Twitt (my mother’s maiden name causes ripples of laughter these days but it didn’t in Mum’s time apparently) and my father’s parents spent much time with me in my youth, supporting me financially and emotionally. They gave me the unconditional love which society often assumes is given to all children but so often is denied them. If things got frayed around the edges in my adolescence, my extended family were always there to pick up the pieces. My relationships with my father and my mother sustained me as I recovered from my first AIDS illness and those that followed. My mother was often around at my home to help when I was ill. But Mum and Dad’s support was about more than that. I felt finally accepted for who I was. I went travelling around Australia and New Zealand with Mum when her health was up to it, and we formed a bond as close as we’d ever had in our lives. My father was remarkable in his response to everything that I threw at him during my years with AIDS. He read newspaper articles about my life with AIDS, saw me on television numerous times and never once expressed the slightest hint of disapproval. I think he was proud of my involvement and most certainly was chuffed about my being awarded an Order of Australia. Living openly and honestly with my sexuality had been a feature of much of my adult life, but I wasn’t open with all of my family until my AIDS diagnosis forced me to be. Being open about my sexuality and my status has helped to decrease stress. Recently I read a study by a psychologist, Steven Cole, from the University of California. He followed a group of 237
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HIV-positive gay men between 1984 and 1993. The aim of the study was to compare the survival time of those who were out and those who were not. The study found that there was a twoyear survival advantage for the out group. In those who had not already progressed to AIDS, there was a two-year lag in this progression for the out group. This makes sense to me because no matter what the consequences are—and I am willing to bet that most, if not all, don’t regret it in the long term—the relief of being true to yourself has to be of benefit. It is often the case that people in the late stages of AIDS return to their families for help with their final nursing and emotional needs. It is often the only alternative they feel they have left, other than imposing on friends. If a workable relationship between child and parents has not been established, and if there is lingering disapproval, the outcome can be a disaster. In far too many cases I have seen parents arrive in the final stages— sometimes invited, sometimes not—and totally take over their son’s life. All close gay friends are squeezed out, as reminders of a life that now has to be forsaken. The last farewell, the funeral, can end up betraying the truth of the person’s real life. Some services I have attended have not even referred to the fact that the deceased died from AIDS. I lived with less than twenty T-cells for seven years, including three years with none at all. I am told by doctors that this is a remarkable record and that my survival is exceptional. The figures held by Fairfield Hospital in 1996 showed that I was one of only six people who had survived with AIDS in Victoria since 1989. I am told that three of these people have died since. Many people have survived as long as I have with HIV—it is at least nineteen years since my test—but few have survived so long after developing an AIDS-defining illness. 238
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Something has worked in my favour to aid this survival and I don’t really know what it is. If I was to say I was a courageous fighter with an incredible will to survive, I’m not sure that I would be entirely telling the truth. I was certainly not a particularly courageous child, but there are other sorts of courage you develop as you grow older. Feeling different from other boys at school and coming to terms with being gay at university made me more self-analytical and self-aware as an adult, but I don’t know that it made me stronger. Some of my first friends to die from AIDS-defining illnesses had no treatment options at all. They would look to health or personal-development gurus like Louise Hay from the USA for advice on how to defeat the virus and to live longer. Hay’s lectures were based on the principle of ‘love yourself, love your illness’, which struck a chord with many gay men who felt that they needed to heal aspects of their lifestyles. The principle of loving your virus to death never really did it for me. Neither did the reverse psychology of having a photograph of the virus on your fridge door and visualising its destruction every morning in a brief meditation before breakfast. I am sure that meditation and yoga can be beneficial for people with AIDS or other life-threatening illnesses. Anything that slows down the pace of your life and de-stresses the body must be good for the immune system. I have never had the selfdiscipline or, I tell myself, the time to do meditation regularly enough to see its benefits. If I have a philosophy for dealing with stress it is to not regard life as a constant battle. I was aided by my early retirement in being able to feel this way, but I felt this way in my work as well. If you look to each day for the good things that might happen rather than the bad, you have a much better chance of surviving in a good frame of mind. In other 239
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words I have always been an optimist and even in my darkest days with AIDS, I don’t think I ever gave up hope. Hope is a bit of fluff to some people but it has always been a crucial factor in my make-up and, I think, in my survival. I always believed there was a good chance I would stay alive until the next new treatment came along. Activism and the energy behind PLWHA groups around the country continues to wane as more people are able to remain in the workforce and feel less urgent about issues like access to treatments. Whereas getting government to fund AZT was once a major rallying force for positive people, the need for firebrands and street protesters has long gone. But there is a need for positive activists to keep society aware of the difficult issues positive people face in daily life. Our stories need to be told. They can be an inspiration for others who may one day have to contend with terminal illness and an education for those who think that AIDS and all its horrors has gone away. PLWHA groups these days are mostly run by people in their late thirties, forties and fifties. Young people seem uninterested in taking up the cause—their lives are relatively uncomplicated by the illness or drugs. Gradually, ever so gradually, my T-cells have rebuilt themselves so that I recently reached a peak of 400 T-cells (not far off the relatively normal 500 mark). Research scientists were not sure whether the new T-cells would have the same potency in the immune system. They now think new T-cells are fully functioning and that they will protect the immune system from diseases. In other words, the immune system can be rebuilt over time by combination therapies. Providing the T-cell numbers stay above dangerous levels, you will be unlikely to develop AIDS illnesses. 240
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So it has been for me. I have not been seriously ill since 1994. Life has been relatively ‘normal’ for the past five or six years. Members of the HIV community have breathed a sigh of relief that the number of deaths and desperately ill people has dropped remarkably. We are all starting to recover from a macabre and horrible time when we were attending several funerals a month and constantly visiting seriously ill friends in hospital. There are still people dying, though. Drug resistance is a major problem and cross-resistance between classes of drugs means that some people have few treatment options left. I have few alternatives myself if my current regimens fail. Perhaps I will turn to one of the newer classes of drugs, the fusion inhibitors, which involve injecting yourself twice a day. While once I would have recoiled at the thought of injecting myself, I have to say that AIDS has made me much more adaptable. I have learnt to swallow 30 tablets a day without fuss, learnt to cope with regular diarrhoea and nausea from the drugs, learnt to live with chronic skin and sinus problems related to the virus. I did this because there were no alternatives but also because I learnt that these things are not so annoying or problematic once I’ve lived with them long enough. I also know that I am lucky to have the tablets. HIV/AIDS has become a more manageable condition in western countries, and attention has moved to the plight of much of the world’s infected, who have no access to treatments and little hope of surviving for more than a few years. Increasingly, activism from PLWHA groups in industrialised countries has been about pushing governments and drug companies to help regions where the disease is wreaking havoc, such as Africa and Asia. Whole communities are being decimated in parts of Africa. The virus knows no class boundaries and has no preference for gender or 241
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sexuality. Development of a vaccine or cheap, readily available drugs cannot come soon enough. At a recent conference held in Melbourne—the International Congress of AIDS in Asia and the Pacific—I had my eyes opened to the tragic plight of fellow HIV activists from Asian countries. Suzana Murni, a much-respected activist from Indonesia, gave a powerful speech in the opening session. She spoke of the cultural difficulty involved in speaking out about being positive in her country, and about the blatant discrimination that can occur when people do. People have had their houses burnt down, landlords have refused to rent to them and employers will not give them work. When people get sick, there are woefully inadequate services to provide even basic care and there are certainly no HIV treatments available because of the prohibitive cost. I had met Suzana only a year before and was shocked when I saw her move to the dais to make her speech: she had lost huge amounts of weight, her cheeks were sunken and she clearly looked sick, unlike the last time we met. The message she was conveying about lack of access to HIV treatments was being powerfully illustrated before our eyes. As I circulated amongst participants at the conference over the next few days, I sensed the desperation but also the clear sense of purpose that many Asian delegates had about the task they face. They want to learn as much as they can from the Australian experience and I trust that Australian agencies will continue to give generously to help people from the region to educate their population about prevention and treat those infected with the virus. I am involved with the National Association of People Living with HIV/AIDS which is working closely with other positive peer groups in the region. 242
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The most difficult thing about living with AIDS for me at the moment is the uncertainty. This aspect has not changed since my diagnosis with HIV in 1984. I recently celebrated my fiftieth birthday and, as with my fortieth, I felt a sense of achievement rather than embarrassment about reaching this mature age. It was not a likely scenario when I spoke to my assembled friends in my backyard in 1992. In some ways I feel I have entered a more even playing field with my fellow 50-year-old friends. We all know that health problems are likely for anyone at this ripe age. My particular problems with HIV/AIDS may add a little more complication to things but it seems bearable. It is only when I look at nimble young twenty-year-olds that I feel inadequate, but that of course is a symptom of age, not disease! My friends were kind enough to let me off the hook about my promise to take a group of them to Paris if I made 50. My fiftieth party brought together people from the different periods of my life, from my days at university with the ‘Golden Nine’, to teacher friends from Rochester High School, the GCN crew, and the many friends I’ve met through AIDS activism. My brothers and sisters were there too, showing just how complete my life has become in terms of my relationships. I have survived a difficult battle thus far. The little boy who got knocked over in the school sandpit by that bully so many years ago has learnt how to stand on his own two feet.
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