Let Communities Lead

In honour of World AIDS Day 2023 and in recognition that this year marks the 42nd anniversary of the discovery of the epidemic.

This speech was given on 29 November 2023 as part of an AIDS memorial at the old Fairfield AIDS Garden and chapel in Melbourne.

Let Communities Lead

In 1974, a young man in Uganda named Lukas began to get sick. He exhibited the symptoms that would later become recognisable to many of us who lived through the era of AIDS: swollen glands, skin sores and weight loss. Lukas and his two wives eventually got sick and died, followed by others in Kampala. This local outbreak of what we now call HIV/AIDS is remembered particularly because one of Lukas’ workmates remarked to his own child that “Something Has Happened”.

Thirty years later, that child had grown up and while millions of Africans had now been affected by Slim and other manifestations of this epidemic, this child – now an adult – recalled how something has happened to Swedish author Henning Mankell as he was documenting the Memory Bank, a local African AIDS memorial project, like our AIDS Memorial Quilt or this very AIDS Garden. In the Memory Bank project, parents who were dying wrote their biographies and stories into books with photos and other keepsakes, to leave as an inheritance for their children. Such memorialising was both personal and political: on an individual level they wanted their children to remember the names and keep the love alive; but on a collective level, they signified a universal aspect of this epidemic: the human desire to want to write or record stories that we deem to be most important.

This was a symbolic foreshadowing of my own book, which also aimed to record stories and images on behalf of those who were lost – a literary form of lighting forty candles to acknowledge forty years in stories and images. What I say here tonight is taken from, or is about, this book.

The book came out of my suggestion to the publisher, Gordon Thompson of Clouds of Magellan Press, that someone should write something for World AIDS Day in 2021, because that year marked the fortieth anniversary of the official discovery announced to the world that something has happened. Gordon suggested that I write the book, and he supplemented my photos with images as supplied by others including Dennis Altman – the man who literally wrote the book on gay liberation; Phil Carswell, the first President of the Victorian AIDS Council; and Alison Thorne, the woman whose name features in part within the name Thorne Harbour Health. I want to thank them and also Marcus O’Donnell, Henry von Doussa and Paul Cholewinski for their contributions. I felt honoured that these others wanted to contribute to the book, but I recognise, as they do, the importance of the history it documents – and I acknowledge their ongoing desire to contribute the community activism that this book represents.

The book is called “Always Remember”, a title that is inspired by a photograph that the publisher chose for the front cover. The photo features a plaque from another, much smaller AIDS Memorial Garden here in Melbourne, one which had been neglected somewhat over the years. The plaque itself originally read, “Always Remembered”. Unfortunately, due to weather and erosion and neglect, half the letters on that plaque have fallen off. Perhaps this unintentionally symbolises the memory of the HIV/AIDS epidemic to many people in Australia today: somewhat forgotten, overlooked and disregarded. Even those of us who lived through those times, will find it hard to remember the exact details, because memory can fade or become imperfect, and societal changes since then make ‘the new normal’ our standard perspective and it then becomes easier to forget the old normal. The homophobic and AIDSphobic stigma and discrimination and fear and outright hate that was preached from pulpit to Parliament in those days, has faded with time and memory. But we do recall that this was a stigmatised epidemic forty years ago, and maybe the fact that it is largely forgotten today suggests that it remains somewhat stigmatised. But the title of my book, as chosen by Gordon, “Always Remember”, is a call to us today to always remember, and tonight, we here have heard that call. Thank you for doing so.

We could pause to acknowledge the universal nature of the HIV/AIDS epidemic, and reflect on Lukas in Uganda in 1974; or 16 year-old Haitian teenager Robert Rayford of Florida in the USA, who likely died of AIDS in 1969 while the world was busy watching the first Moon landings, or while the US queer community was rioting at Stonewall. We could pause to remember Grethe Rask, the Danish surgeon who was infected while living in Africa in the 1970s and returned home to die in 1977 – and whom US author Randy Shilts asserts that as one of the earliest identified people known to lose their lives in what became commonly known as a “gay male plague” may herself have been a lesbian. Other early cases included families, women, babies, gay men, people from Norway and Belgium and Denmark and Portugal and France, and scores of school children and others across parts of Africa. In New York city, a local phenomenon arose in the 1970s, known as “Junkie pneumonia”. All of these others were not recognised as forming a part of a syndrome, until, as Dennis Altman notes, it was officially identified within the cohort of affluent white, young gay men in the USA in 1981. This was around the time that a 70+ year old Australian man – whose name will likely never be known – began to get sick and eventually die of a condition that was later retrospectively diagnosed as HIV/AIDS. His death in Sydney in August 1981 suggests that HIV was in Australia before it had even been discovered that something was happening overseas.

Why is all this important? Because in the era of COVID and whatever epidemic or pandemic is likely to come next, we can learn – or fail to learn – from what has gone before. Activism, education, working with medical and political establishments, empowerment of directly affected or disaffected communities, saving lives and changing the law and the world; there are people here at this event who can personally testify that such empowerment and change are possible. I note in my book that Australia led the world in empowerment of AIDS communities, taking ideas onboard and changing them to suit local cultures and conditions. HIV arrived on our shores firstly from the USA, and our activists worked more closely with doctors and politicians here than they were able to in the USA due to differing political climates. We took on board the AIDS Quilt even though we lacked the quilting culture of the USA; we adopted ACT-UP activism with what I would consider to be an Australian ‘larrikin’ flavour that was reminiscent of BUGA-UP, an earlier activist model that challenged and beat another health crisis – the smoking advertising billboard. What can we learn from that?

Australian AIDS Memorial Quilt Project on Display in the Exhibition Building, Melbourne. Photo (c) 1999 Geoff Allshorn.

I have seen how AIDS testimonial is not only important as a matter of documenting history, but also because it influences lives in ongoing ways. At a display of the Australian AIDS Memorial Quilt, some years ago, during the height of the epidemic, I saw a young woman weeping as she studied a panel of young man whose parents had created a memorial tribute. We got talking, and I learnt that she had wandered in off the street with her baby in a pusher, after being attracted to the vibrant colours of the Quilt, but she had only come a few metres into the room before this panel had stopped her in her tracks. I asked if she had known this young man whose panel had clearly affected her. She said no, but she had seen his details and photo – his young and cheeky grin, he had been aged in his early 20s like she was, and the loving tributes from his parents on that Quilt panel during an era when homosexuality was still regarded as being evil, sinful, and worthy of family rejection. Of all the panels on the AIDS Quilt, this particular story had touched her life and she told me that it had changed forever her perspective on homosexuality and tolerance and respect and diversity and love. I knew this young man’s parents, and later, at a World AIDS Day candlelight memorial service at the Positive Living Centre, I told them how his panel had changed her life. His father burst into tears and thanked me for letting them know that even after death, their son had continued to touch and change lives after everything he had endured from the illness. I could see that these parents had shared their story – like Lukas’ story in Uganda, they wanted to share how “something had happened” – and in doing so, their truth telling had affected not only their own lives but that of this young woman and probably the baby she was going to raise in a mindset of tolerance and compassion and respect for diversity during an era when “poofter bashing” was still common.

It is such memories that inspired me to document the histories of our community, and to write this book. It also gave me the idea of writing a patchwork of sample stories, like the AIDS Quilt, rather than a straight narrative, because the fuller and definitive narrative of AIDS in Australia is yet to be written.

The collective power of such storytelling became evident to me a few years ago, during part of the process of research and documenting that led to the writing of this book. With the help of some people here, and others, I wrote an Honours thesis on the social history of HIV/AIDS in Melbourne during the 1980s. I quickly discovered that those who read my thesis had shared it with others and suggested they read it too. I know this because, one by one, individually and privately, these people each came to me to thank me for recording this important history. Instead of wanting to analyse the academic aspects of my thesis, they all wanted to recount how this history had touched them personally by reminding them of someone they knew – a brother, a workmate, a cousin, a best friend – someone who had been lost to AIDS. Everyone had a story and wanted to share it, just like the people here who have spoken tonight, and like many others of us with our own stories and our memories.

Truth telling can change lives, and our world. I note that we all rejoiced six years ago when Marriage Equality became Australian law after the postal plebiscite, but how many Australians paused to remember how the fight for marriage equality had been inspired in no small part by the era of AIDS, when same-sex couples had been split apart by the virus, and while one partner was dying, the other partner may have been denied legal or family recognition, hospital visitation rights, next of kin rights, inheritance rights, or even the right to know where his loved one would be buried? Activists set out to change that – and they did. There are many other ways that AIDS activism changed our lives. The old chapel here on these grounds, was such testimony, built after crowdfunding by the LGBT community, so that our AIDS people would have a venue for funerals after being denied such common courtesy at some other churches. The way that we can nowadays purchase condoms off supermarket shelves when, in those days, condoms were usually only available by request from beneath chemist counters – if the chemist did not have an ethical objection to selling them. Dying with Dignity laws that are now becoming commonplace across Australia, needle exchange programs and venues, community empowerment programs that enable affected communities to have a say on how their social issues are addressed, even fundraising ribbons or memorial quilts for other afflictions… so many things…

Perhaps for me, one of the most significant contributions made by AIDS activism to Australia came out of my background research. In.those days, homosexuality and wider LGBT rights were opposed by the majority of Australians and the stigma of AIDS drove many families to deny the medical diagnosis of those with HIV because of its association with homosexuality. Yet after a care team began to visit regularly in order to care for their dying son or brother or father or other family member, it may be conjectured that families began to realise that LGBT+ people were not all evil and degenerate as per the common perception. After their dying family members were tended and cared for by a care team or medical staff comprising the first LGBT+ people that their family had ever met, straight people began to challenge the homophobia that they encountered in the workplace or church or pub. I cannot help but wonder if current mainstream Australian acceptance of LGBT people is, in no small part, due to this grassroots upswelling of support by straight people who had encountered queer people for the first time in their lives and had come to respect them for their compassion and humanity.

Overall, young Australians today need to learn that their world of Anti-Discrimination and anti-bullying and pro-diversity, was not always like this, but came about because people fought a virus and a stigma, and many suffered and died, but that these activists and ordinary people and heroes helped to change our world. Books and personal testimony such as yours and mine can help to remember the names and keep the love alive. People who survived are here tonight because we feel honoured to not only pay our respects to those we have loved and lost, but because we are still contributing to their story. We are living testimony to the face that something has happened – both in terms of a terrible epidemic, and in terms of community activism that saved lives and changed the world.

As I state in my book’s Afterword, perhaps most of all, we can learn from history to ensure that we don’t repeat it. HIV is still a problem in many places around the world, and homophobia and AIDSphobia still threaten lives. I began this talk by referring to Uganda as an early location of HIV, but it remains a problematic place today. As you will be aware, earlier this year, the Ugandan government criminalised homosexuality and now threatens the lives and liberty of millions of its own people, including their access to sexual health education and medical assistance, effectively revisiting some attitudes and laws that Australians experienced a generation ago around the time that HIV arrived. What do we need to learn from those people and those times a generation ago? The gay liberation activists, and the AIDS activists who succeeded them, would, I imagine, be among the first to passionately argue that our silence today still equals death.

We should be proud that the Australian model of self-empowerment became a model which has been upheld around the world as a leading model of community response to an existential threat. By contrast, the community response to a later threat was to question the wearing of face masks and to stock up on toilet paper. Ours was a more noble and constructive agency. Let us remember those who were lost, but also the army of activists and carers, doctors and nurses, agitators and administrators, the treatment action groups, the AIDSline counsellors, those who held hands with the dying, or who marched in the streets, or who attended candlelight vigils or sewed quilt panels to memorialise and to educate others, and those who lobbied for public reform. My own book is a small but humble attempt to not only document these community activities, but to add to them. Today, we are a part of that continuing activism. With my book, and this Garden to grow new life in a more openly tolerant nation, and everything else that has been remembered and acknowledged here tonight, I hope that we can continue to use our voices to speak for those who cannot speak for themselves.

[POSTSCRIPT: Today I have also received a World AIDS Day poem from a Ugandan LGBT refugee, and I have published it here in honour of the hope it can give us for the future of Uganda.]

©2023 Geoff Allshorn

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