In the Eye of the Storm: Volunteers and Australia’s Response to the HIV/AIDS Crisis

By Robert Reynolds, Shirleene Robinson and Paul Sendziuk

The people who volunteered to help during the HIV/AIDS crisis of the 1980s and early 1990s provided compassion and support to heavily stigmatised people. These volunteers provided in-home care for the sick and dying, staffed needle exchanges and telephone help-lines, produced educational resources, served on boards of management, and provided friendship and practical support, among many other roles. They helped people affected by the virus to navigate a medical system that in preceding decades had been openly hostile towards the marginalised communities of homosexuals, drug users and sex workers. In the process, volunteering left and indelible mark on the lives and outlooks of these volunteers.For the first time, by focusing on individual life stories, this book explores the crucial role of the men and women who volunteered at at time of disaster. Despite their critical role, they have not been sufficiently recognised. Through their stories, drawn from oral histories conducted by the authors, we see how those on the front-line navigated and survived a devastating epidemic, and the long-term impact of those grim years of illness, death and loss.

• Language: English
• Publisher: Independent Publishers Group
• Release date: Apr 1, 2021
• ISBN: 9781742245188

Book preview

INTRODUCTION

‘AIDS VOLUNTEERISM’

IN HISTORICAL CONTEXT

In 1987, the infamous ‘Grim Reaper’ advertisement warned that AIDS had the potential ‘to kill more Australians than World War Two’. This dire outcome was prevented by Australia’s effective response to HIV/AIDS, which remains widely regarded as one of the best in the world. Yet, one of the most crucial aspects of this response is not well understood, nor has it been adequately recognised. This is the role of individuals who volunteered in vast numbers with the aim of saving people’s lives and easing the suffering of those who were dying.

Volunteers during the AIDS crisis came, and continue to come, from diverse backgrounds, including gay men and members of the lesbian, bisexual and transgender communities. They also include people living with HIV/AIDS, people with haemophilia, injecting drug users, sex workers, and members of the broader public. But the majority of volunteers have been gay men. Volunteers have performed all kinds of roles, such as caring for the sick, distributing information and condoms at ‘beats’ and gay venues, offering governance and business skills to AIDS organisations, protesting as part of activist groups, providing information and support on telephone lines, and raising money.

This book tells the stories of some of these volunteers. The chapters are drawn from more than 60 interviews we conducted while researching the history of volunteering during the HIV/AIDS crisis.

Our aim has been to determine the extent and significance of the volunteer contribution across the nation; to consider what motivated volunteers to join the fight; to explore the emotional impact of the epidemic on volunteers; to trace how the changing nature of the epidemic and evolving ‘professionalisation’ of community-based AIDS organisations affected volunteers; and to assess the impact and legacy of volunteering on the personal and professional lives of those who gave service.

We conducted oral history interviews with ‘AIDS volunteers’ in every state and territory of Australia. It quickly became apparent that volunteering was challenging, but rewarding. In the first 15 years of the epidemic, volunteers had to cope with ever-increasing numbers of new diagnoses and the trauma of witnessing dying and deaths, often of friends and loved ones, which in some cases resulted in burnout and withdrawal from volunteering in a formal capacity. For some, volunteering became less rewarding when organisations became more ‘professional’ in their approach (a demand that was often tied to government funding) and increasing numbers of staff became paid employees. Coping with changes in culture and mission once organisations became more ‘mainstream’ and serviced different types of clients presented additional difficulties. Some volunteers have also had to contend with the challenge of transitioning from volunteer to client if they became HIV-positive; nevertheless, most continued to volunteer in some capacity. To appreciate the significance of this service, it needs to be placed both in the context of the history of the HIV/AIDS crisis and the history of volunteering in Australia.

HIV/AIDS in Australia

The first case of AIDS in Australia was diagnosed by Professor Ronald Penny at Sydney’s St Vincent’s Hospital in November 1982. His patient was a 27-year-old New York City resident who was visiting Sydney on a working holiday. The case was reported almost six months later in the Medical Journal of Australia, by which time the first Australian had been diagnosed with AIDS.¹ These initial cases were announced in a tone that bordered on hysteria. The Daily Mirror proclaimed: ‘AIDS: The killer disease that’s expected to sweep Australia’, while the Herald ominously warned: ‘AIDS – A new killer at large’.² The public was left in no doubt about who was harbouring the fugitive, as the media reports emphasised that all of the cases involved homosexual males and that this group in America was in the midst of an epidemic. Following the announcement of a fourth case of AIDS in Australia, Professor Penny warned: ‘The reality of the moment is that within Sydney there may be many people incubating the disease because of the enormous exchange between gay communities here and in America.’³ He thus unwittingly lent support to the emerging opinion that gay men were responsible for exposing Australians to a malicious new killer.

The conflation of AIDS with homosexuality saw dentists ban gay patients from their surgeries, and gay men evicted from their homes or denied accommodation.⁴ Plumbers who feared ‘catching AIDS’ refused to fix pipes in restaurants in Sydney’s Oxford Street where gay men might have eaten or cooked.⁵ When, in November 1984, it was announced that three Queensland babies had died from AIDS as a result of receiving HIV-positive blood from a gay donor who had not known his status, a gang of men roamed Sydney’s gay strip looking for ‘poofters’ to punish.⁶

Given the hostility expressed towards homosexuals, and the public’s fear of those afflicted by HIV/AIDS, it seemed likely that Australian federal and state governments would be persuaded to enact a range of coercive public health measures to contain the spread of AIDS. The quarantine of ‘infected’ individuals and the screening of the entire population for HIV-antibodies were not out of the question;

indeed, various public opinion polls conducted in 1986 and 1987 showed wide support for these options.⁷ Nearly 70 per cent of those surveyed supported mandatory testing of people deemed to be at ‘high risk’, such as gay men, injecting drug users and sex workers.⁸ Prominent doctors such as David Pennington and Julian Gold advocated strongly for widespread testing programs. Such measures had been used to control leprosy, plague and tuberculosis earlier in the twentieth century. Advocates of this ‘traditional’ approach to infectious disease control also called on the government to close gay saunas and other venues where disease might be spread, as the public health authorities of San Francisco had done in October 1984. And they demanded criminal penalties for anyone found to be ‘knowingly’ or ‘recklessly’ spreading the disease.

On the whole, however, Australian state and federal governments adopted a different approach. With the initial exception of the states of Queensland and Tasmania, they chose to incorporate representatives of the communities most affected by AIDS into a partnership with government and medical experts.⁹ This decision was made in order to gain their expertise in communicating with, and educating, people at risk. The result was an approach to AIDS prevention that stressed the need for community participation and education rather than the identification of infected individuals through widespread testing and the curtailment of their activities through coercive laws. Instead of promoting abstinence and relying on prohibition, Australian public health authorities sought to inculcate an understanding that everybody was at risk from AIDS, but that this risk could be minimised – regardless of the lifestyle that one led – by the adoption of safe sexual and drug use practices.

Thus, by the end of 1987, Australian state and Commonwealth governments were funding targeted education campaigns that promoted (safe) anal sex in glossy posters and pamphlets and supported the promotion of condom use on prime-time television. Restrictions on the sale and promotion of condoms were also lifted and manufacturing standards tightened. Comprehensive sex and AIDS education courses were introduced in state (and most private) secondary schools, and nearly all of the Australian states established needle and syringe exchange programs, some of which were staffed by sex workers and drug users.¹⁰ Predominantly gay-based AIDS councils, sex worker organisations and collectives of current and former drug users were also funded to provide education and peer support. The community sector response to HIV/AIDS in Australia has been explored, but the role of volunteering has yet to be documented.¹¹ None of the work conducted as part of the community response would have been possible without the service of an army of committed volunteers, mainly drawn from the communities most affected by HIV. They also bore the brunt of caring for the men and women who were dying from AIDS-related illnesses.

The rate of new HIV infections in Australia began to subside well before the number of AIDS deaths peaked in 1994, and diminished more quickly than in other comparable Western countries. There was barely a reported case of AIDS acquired by an Australian sex worker, and the proportion of new HIV infections attributed to injecting drug use remained around 5 per cent, five to ten times less than some European countries and parts of the United States.¹² People continued to get sick and die, however, and the stigma surrounding the disease and those who chose to serve the sick endured. Some of our interviewees recalled attending memorial services for friends who had died of AIDS on a weekly basis in the early 1990s. The trauma of witnessing so many deaths, and feeling impotent in the fight against AIDS, meant that volunteer burnout was an ever-present danger, and threatened the existence of some of the smaller community-based AIDS service organisations.

Volunteering in Australian history

Australians have a long history of volunteering in a multitude of roles, and their willingness to volunteer in levels unseen in most other countries is a source of national pride and a core component of national identity. Unique among combatant countries, Australia’s defence forces relied on volunteers rather than conscripts in the First World War and Second World War, and it is commonly asserted that Australia has the highest rate of volunteer participation in the world – especially in amateur sports coaching and umpiring, and in women’s and community service organisations such as the Country Women’s Association, Apex and Rotary.¹³

Since the mid-1990s, large-scale surveys and the national Census have collected a great deal of data about Australians’ volunteering activities.¹⁴ From the most recent General Social Survey conducted by the Australian Bureau of Statistics, we know that about 5.8 million Australians over the age of 18 volunteer in some capacity. Each year they perform about 743 million hours of voluntary work, worth between $17.3 billion and $24.5 billion to the Australian economy.¹⁵ The main fields of voluntary activity are sports and recreation, education and training, and community welfare. Volunteer rates are higher in rural and regional areas compared with the capital cities (34 per cent of the adult population compared to 30 per cent), and slightly more women than men volunteer (34 per cent compared to 29 per cent of those aged over 18). There is also a ‘life cycle’ of volunteering. All age groups are represented but people in the 15–17 and 35–44 age groups have the highest rates of volunteering, while those in the 35–44 age group with dependent children undertake the most volunteer hours.¹⁶ We know, also, that volunteering is part of Indigenous culture, especially in terms of willingness to look after other people’s children and kin without payment.¹⁷

Missing from this snapshot, and the reams of statistical data about volunteering that has been collected, is any specific information or analysis concerning the volunteering activities of gay men and lesbians and other members of the lesbian, gay, bisexual, transgender, intersex and queer (LGBTIQ) communities. In fact, one might go as far to say that gay men and members of the LGBTIQ communities have been excluded from histories of Australian volunteering and public conceptions of volunteering.¹⁸ This neglect in studies about volunteering, and absence from the narrative, has significant ramifications for the public perception of members of such communities, because perceptions matter when it comes to LGBTIQ people pleading for acceptance and equality from the broader Australian public and their political representatives.

The contributions of LGBTIQ individuals, or the LGBTIQ communities at large, have yet to be acknowledged in any of the standard general histories of Australian volunteering or in the histories of particular types of volunteering, such as soldiering, surf lifesaving or firefighting. There is no suggestion that LGBTIQ people might volunteer in higher or lower proportions, or for different reasons, or for different causes, in comparison to members of the general public. Melanie Oppenheimer, either writing alone or with collaborators, is the leading authority on the history of volunteering in Australia and has made important contributions towards conceptualising the ‘Australian way’ of volunteering.¹⁹ She has also written specific histories of the Red Cross and voluntary work during major military conflicts.²⁰ Her scholarship provides a valuable corpus of information on the cultural and social significance of volunteering but the sexuality and gender identity of volunteers is not part of her research focus. This book expands on the pioneering work of historians such as Oppenheimer and considers the specific contribution of LGBTIQ volunteers through the prism of the HIV/AIDS epidemic.

Over its 14 years of existence there were no articles about LGBTIQ community organisations or LGBTIQ volunteering published in the

Australian Journal on Volunteering, which might have been regarded as the pre-eminent place to publish scholarly articles about volunteering in Australia until the journal ceased print publication in 2009. A further search of the Australian Public Affairs database, which links to articles published in thousands of Australian-based academic and current affairs publications, revealed only two articles that include the terms ‘volunteer’ (or variants of this word) and either ‘gay’ or ‘lesbian’ or ‘homosexual’ or ‘sexuality’ or ‘queer’ in any of the search fields.²¹ A search for articles that mentioned any of the three terms ‘volunteer/ volunteerism/volunteering’ and ‘gay/lesbian/bisexual/transgender/ queer’ and ‘Australia/Australian’ using the EBSCO Academic Search database, which links to over 8500 international academic journals, located only eight items, most of which were about volunteers in medical trials and were not about Australia at all.

Until very recently, neither the General Social Survey (which began collecting data about volunteering from a large sample of Australians in the mid-1990s) nor the national Census (which began posing questions about unpaid work in 2006) asked questions about gender (as opposed to sex), which would allow gender-based analysis of volunteering to be undertaken. These are the very large-scale surveys upon which is based the above overview of the state of volunteering in Australia. If we do not have data to work with, there is very little chance of researchers becoming engaged with questions about whether or not the extent or types of LGBTIQ volunteering might differ from the norm, or clearly demonstrate that LGBTIQ people do volunteer in large numbers and in a variety of ways. In the most recent General Social Survey, conducted in 2014 with data released in 2015, participants could nominate their sexual orientation and respond to the question: ‘Have you undertaken voluntary work in past 12 months?’ So we now have a starting point, albeit a modest one. And it produced an interesting finding: 34 per cent of those who classed themselves as either ‘gay’ or ‘lesbian’ undertook volunteer work, compared to the 31 per cent of those self-described as ‘heterosexual’.

We are not suggesting that some sort of conspiracy or prejudice has led to the exclusion of LGBTIQ people from the histories of volunteering, and from the data collection. It is perfectly reasonable that researchers and data collectors might wish to focus on other things. But by doing so, we suspect they are missing an interesting and important story, and in the case of data collection, prohibiting a comprehensive story from being told at all.

We note, also, the absence of LGBTIQ volunteerism in the narratives about some of the most well-known forms of volunteering, especially those that we regard as particularly heroic, and about which many Australians are most proud. Consider, for example, the representation of heroic young men who volunteered in vast numbers to fight during the First World War and Second World War. As noted above, in the First World War, Australia was the only combatant country that did not conscript troops – although the Australian prime minister pushed for conscription – meaning that our defence forces consisted entirely of volunteers. Australians have been taught to exalt their service above all else; indeed, we devote a national holiday to remembering their sacrifice. Oddly, they are remembered as being volunteers, when, in fact, their act of volunteering ended with their enlistment, after which they became paid employees of the Australian government, and their families entitled to lifelong government-funded pensions, a degree of remuneration that is unusual in the volunteer sector. In popular and multi-volume official accounts of both world wars, homosexuality does not rate a mention; instead the soldiers are portrayed as fighting for, and missing, their girls at home, or, on occasion, playing up with women they met while stationed overseas. They are described as manly, athletic, and superior physical specimens – quite at odds with the typical portrayal of the gay male, both at the time and now. And, of course, until 1992 rules officially prevented homosexual men and women from enlisting in the armed forces, though through the work of contemporary historians such as Noah Riseman, Shirleene Robinson, Graham Willett and Yorick Smaal we know that plenty of them did.²² All of this combined to give the perception, at least until very recently, that gay or same-sex attracted men were not the ones who willingly volunteered to fight and possibly sacrifice their lives to preserve the freedoms of others, and hence it is not them that we remember and admire on ANZAC Day. They are excluded from the group to which we accord the highest level of Australian citizenship and respect.

The history of voluntary blood donation provides another example of exclusion. Over half a million Australians donate blood, making a total of 1.42 million donations each year.²³ This is an extraordinary form of life-saving service, and Australia is one of very few nations that does not need to resort to paying donors to extract their blood. But since 1983 and the onset of the AIDS crisis, men who have sex with men have been excluded by law from participating because they are considered at higher risk of donating ‘contaminated’ blood. The criteria for this ban has changed over time as more has become known about HIV and its transmission, and because blood can now be screened. It began as a blanket lifelong ban on homosexual donors, and now consists of a ban on blood donation by men who have had sex with a man in the past 12 months, regardless of whether or not these men are in monogamous relationships and know the HIV status of their partners and themselves. Thus, gay, bisexual and queer men have been legally excluded from a group of people who are rightly praised and respected within the community, and who are deemed to be responsible, caring, community-minded and altruistic. Moreover, the broader Australian public is frequently reminded of how gay, bisexual and queer men have been excluded, as their protests against this exclusion – going all the way back to 1983 – have received a good deal of publicity.²⁴ In most cases, as well as being prohibited from donating and thus proving that they are also responsible, caring, community-minded citizens who deserve our respect, when they have protested against the bans they have been painted as reckless and irresponsible – willing to risk poisoning the communal chalice.

Writing the service of lesbian, gay, bisexual, transgender and intersex people into the history of volunteering is thus not only illuminating, it is important from a social and political perspective. This is because of the status given to volunteering and volunteers in this country. Volunteering – helping out a mate – lies at the core of Australian identity, and how we define ourselves as people of a nation, as citizens. As Melanie Oppenheimer perceptively surmises:

There is certainly a connection between our sense of identity and who we are as a people that includes mateship, helping each other out and volunteering our time and labour for a variety of causes. Volunteering and voluntary action, through both self-help and philanthropy, have always had and continue to have a very special part to play in our Australian way of life.²⁵

If particular types of people are excluded from that narrative, either tacitly or through deliberate omission and/or practical prohibition, then they fall outside this concept of citizenship; they fall outside the body politic of the nation. It is thus easier to deny their claims for respect and equality. Volunteers are regarded as good, altruistic people, to be trusted, respected and embraced. When a person’s good deeds go unrecognised and unacknowledged, as we are suggesting has been the case with LGBTIQ people, then it reduces their capacity to be seen as good people, to be trusted, respected and embraced. This too has ramifications when it comes to their demands for acceptance, protection from discrimination and violence, and assertion of their right to equal treatment. This is why history and representations matter.

In this book, we have therefore been keen to acknowledge the enormous voluntary contributions by gay men and other members of the LGBTIQ population in responding to the AIDS crisis. Australians’ conceptions of themselves and their nation have the potential to be profoundly altered once HIV/AIDS volunteers are brought into the broader narrative of Australian volunteerism. By illuminating the extraordinary levels of volunteering by gay men and lesbians especially, but also HIV-positive individuals and others who have been traditionally marginalised and despised in society, we have the potential to radically recast the way in which these individuals are viewed in society, and the way in which histories of the nation are written.

I, of the storm

This book represents a first step in exploring the role that LGBTIQ people played as volunteers guiding Australia’s response to HIV/ AIDS. We acknowledge gaps in our coverage. Greater primacy is given to certain types of volunteers over others. This is in part due to the individuals who responded to our call-out for oral history interviews and our desire for the book’s coverage to largely reflect the composition of HIV/AIDS volunteers during the 1980s and early 1990s. Gay men, bisexual men and HIV-positive men formed the bulk of Australia’s HIV/AIDS volunteers during this era. Yet women – heterosexual, lesbian, bisexual, queer or transgender – also played key roles. While we did not receive any expressions of interest for oral history interviews from intersex or transgender people, we know from our interviewees and our own archival research that they gave valuable service. We also recognise that injecting drug users and sex workers played very significant roles during the HIV/AIDS epidemic in promoting harm reduction and as volunteers among their own communities and in supporting others. Owing to the stigma surrounding their activities, few were willing to share such experiences publicly. We hope that this book will inspire more individuals from marginalised groups to come forward and share their stories and thus further enrich understandings of volunteering in this era.

In the accounts that follow, recollections of those involved in formal forms of volunteering such as home care for people living with AIDS or working on an AIDS information hotline at an AIDS Council predominate over stories of informal volunteering (such as helping to organise a funeral) or participating in activism and advocacy. In this respect we have been largely guided by the kinds of service our interviewees wished to emphasise. However, we regard each of these activities as volunteer work and crucial for producing an effective response to HIV/AIDS. Volunteering as a field of research has tended to develop independently of the study of social activism, and thus the volunteering nature of social activism, which has heavily involved LGBTIQ people, has yet to be properly explored. Yet, as Marc Musick and John Wilson assert, the concepts of volunteering and social activism overlap considerably as ‘the volunteer concept includes advocacy, which is a form of service that is very close to social activism’, and ‘the same activity can be interpreted as one or the other, depending on the social context and the motives and interests of the volunteer’. They suggest it is misleading to claim that volunteerism is all about service motivated by compassion, whereas activism is all about advocacy motivated by justice.²⁶ Indeed, Musick and Wilson argue that the distinction that ‘volunteerism is about the personal and activism is about the political’ is explicitly challenged by HIV/ AIDS volunteering, where boundaries between the personal and the political were blurred. They contend ‘more is to be gained from stressing the overlap in meaning between the two concepts than is lost by blurring the boundary between them’.²⁷

Each chapter of this book is framed around the experience of a single person. They were selected from 67 AIDS volunteer interviews that we conducted over the past decade (though mostly between 2016 and 2018). The names of all of the interviewees are listed at the end of this book. While each chapter reflects the concerns and actions of an individual, they were chosen because their experiences mirror or echo the experiences of a wider community of volunteers. They come from most of Australia’s states and territories and volunteered at different points in time; their testimony, as a whole, therefore gives a sense of how the response to HIV/AIDS differed according to geographical location and changed over time. Indeed, in writing about the experience of volunteering, it has been our intention to also convey a sense of the wider history and contours of the Australian AIDS crisis. In some respects, what we have learnt modifies (or at least provides nuance to) what we have previously written about Australia’s response to AIDS.

We are grateful for all of our interviewees, as their testimony, while not necessarily recorded here, was vital in informing the types of questions we asked of others, and in collaborating and verifying what was told. The authors have also benefitted from the knowledge gained by each of us researching and writing