HIV Australia - Reviews

Sin, Sex and Stigma: A Pacific Response to HIV and AIDS by Lawrence James Hammar. Reviewed by Abigail Groves (Vol. 8.2)

‘It must be kind of weird being you’ JENNIFER POWER reviews Aiden Shaw’s latest memoir (Vol. 8.1)

Unbearable witness: how western activists (mis)recognise sexuality in Iran ANDY QUAN examines a recent article about sexuality in Iran. (Vol. 7.3)

The Wisdom of Whores by Elizabeth Pisani. Reviewed by Kira Magee (Vol. 7.2)

What happened to gay life? by Robert Reynolds. Reviewed by Andrew Burry (Vol. 7.1)

The Invisible Cure: Africa, the west, and the fight against AIDS by Helen Epstein. Reviewed by Jill Sergeant (Vol. 6 No. 3)

Learning to Trust: Australian Responses to AIDS- Paul Sendziuk. Reviewed by Dr Graham Willett. (Vol. 3. No. 3).

Second Opinion, Doctors Disease and Decisions in Modern Medicine- Richard Horton. Reviewed by Ross Duffin. (Vol. 3. No. 3).

Positive Craig Johnstone reviews David Menadue’s much-anticipated novel. (Vol 3. No. 1.)

Global Sex- Dennis Altman.Reviewed by Andy Quan (Vol 1. No. 4.)

Angels of Death: Exploring the Euthanasia Underground Roger S. Magnusson. Reviewed by David Edler (Vol 1. No. 3.)

 Last updated 6 July 2010

 The Wisdom of Whores: Bureaucrats, brothels, and the business of AIDS, 365 pages

 By Elizabeth Pisani 

“Bold and sometimes offensive”

‘The Wisdom of Whores’ is the newest literary endeavour by journalist-gone-epidemiologist, Elizabeth Pisani. The book takes place over the 10 years of Pisani’s epidemiology career and looks at the spread of HIV and HIV prevention programmes in South East Asia, particularly Indonesia.

Pisani writes with humour, fiery wit and determination which lead to quite convincing arguments in calling out the so called sacred cows of HIV/AIDS treatment and prevention strategies such as mandatory testing, international intervention, and survey strategies. Unfortunately, it is using this confident tone that she smoothly and unabashedly uses language one would not expect from someone on the street, let alone someone supposedly on the front lines of HIV prevention programs. She uses nicknames such as “toilet junkie”. She opines on whether or not Indonesian Waria (Indonesian female transgendered sex workers) should get surgery on their genitals. This is at times both offensive and completely unnecessary and could be construed as speaking from a place of comfort within these communities which, as a white, ex-journalist, non-sex working female, she is simply not a part of, but just studying.

Addressing issues such as independent vs. government funded HIV intervention and international donor money, Pisani makes no apologies for prescribing to the “for the good of the many” way of thinking. Analysing so-called smaller “boutique” programs providing top service to a small amount of people vs. mediocre services for a wider group, Pisani does well to go into depth describing processes and bureaucracies involved in funding and applications. But she then goes on to discuss such areas as peer education stating, “[h]elping other people deal with HIV can work well for infected people too. It can give people a sense of purpose they didn’t have when they were out trawling the nightclubs every evening.” It is easy to understand why, although informative and smart, Pisani’s writing makes it easy for members of any community which is her subject group to be left feeling used, belittled and misrepresented.

While bold and sometimes offensive, the book talks in depth about where funding comes from, existing social networks, misinformation, alternative prevention methods and needle exchange programs. So The Wisdom of Whores is definitely filled with enough information, analysis and question-raising to not make the book a complete write off. Unfortunately, Pisani’s attempt to balance the book with overall sentiment of ‘we are all at risk’ falls short and in the end disintegrates with every use of the term ‘junkie’ and every demonization of sex workers as these ignorant remarks make it more and more difficult to find the rest of it unbiased, credible or even interesting. While worth reading, this reviewer and whore thinks Pisani needs to gain more wisdom about the impact she may have on the groups of which she seems so fit to capitalise off.

Kira Magee is a Sydney-based sex worker and activist

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Learning to Trust: Australian Responses to AIDS, Paul Sendziuk, University of New South Wales Press, 262 pages

By Dr Graham Willett

When we talk about the history and future of AIDS, we tend to do so through narratives of tragedy, disaster and despair. The reasons for this are obvious. But, except within the academic and the professional journals, we rarely acknowledge that there is another side to the story – one of hope and achievement.

In Learning to Trust, Paul Sendziuk offers us access to this other story – not through fiction or journalism, as might be expected, but through history: the history of Australia’s remarkable success in containing the spread of HIV/AIDS.

The first cases of what would come to be called AIDS were transmitted in Australia in 1981. Three years later, there were 2,500 new diagnoses. But then a surprising thing happened. Infection rates dropped. And kept on dropping. In 1988 there were 750 diagnoses. In 1992 there were 500, an annual rate that has been maintained ever since. HIV has again started to rise in Australia with increases recorded in NSW, Queensland and Victoria.

The question is, how did it happen? How did Australia manage to reduce its rate of HIV infection faster than any comparable country – and, in so doing, save the lives of thousands of people (gay and straight) and avoid the social and political backlash against gay rights that this most political of diseases (to use a phrase of Australian academic Dennis Altman) threatened to bring with it?

Sendziuk starts by pointing to the existence of two approaches to public health management. One emphasised the role of the individual – ‘irresponsible and dangerous’ – who had to be coerced and controlled by the state and the medical profession. The

other saw, in addition to the state and the profession, the communities within which people lived, and recognised these as necessary partners in the creation and delivery of the behavioural change that, in the end, was the only possible basis for successful health policy (or saving lives, as we might put it). State, profession and community each had expertise and resources that the others needed and it was only by working together and trusting each other that anything at all could be achieved.

In the case of AIDS, this meant that government agencies relied on the gay community to educate itself, providing funding for safe sex materials that emanated from, and spoke to, the real experience of gay men. Avoiding the clinical language of the medicos and the politeness of public discourse, ‘an arse was an arse and a fuck was a fuck’, as one activist put it. And the images! As Sendziuk’s illustrations make clear, this stuff was not designed for public consumption.

When gay men spoke to gay men and told them what they needed to do to save their lives, it worked. When they did so with millions of dollars of government funding, they saved even more lives. And if the government could stand at arm’s length, denying all responsibility for content, then the truth could be told in an unvarnished form without public controversy and at very little political cost.

When we realised how well this approach had worked amongst gay men, suddenly it seemed obvious - and applicable to other risk groups. When it came to junkies and whores, the message is what it has been with poofters: illegal? immoral? Not our problem – this is what you need to do to save your life. Needle-exchanges, sex-worker resource centres and community magazines all spread the word on safe injecting and safe fucking. And, like gay men, sex workers and drug users did change their behaviour – because they wanted to save their own lives, and just needed to be told how by people they trusted. This explains the second surprising fact about the AIDS epidemic in Australia – it never really spread much beyond gay men.

But if, in adopting the community participation model, Australia took up the high road to success, the question still remains: why and how did we come to choose this rather than the other road?

Here Sendziuk’s work shines. It is not that hard when talking about AIDS to avoid whiggish notions of progress – the example of the US and the Netherlands, for example, gives us too stark a picture of just how badly it went in some cases. But Sendziuk is meticulous in picking his way though the complexities and realities of Australian public life: the role of the social-democratic Labor Party, in government, as luck would have it from 1983 and of the Minister for Health and his staff (some openly gay, some suing at the very suggestion); the existence of a gay community leadership steeled by its successful campaign against the right-wing backlash of the late 1970s; the example of the US, like the Ghost of AIDS Future ever before our eyes … All of this is explored, explained, analysed.

Sendziuk is by no means averse to theory, but he never loses sight of the fact that this was a struggle to save lives, waged by real people – and it is this that makes his work uplifting as well as merely important. Learning to Trust is not a manual for AIDS policy that can be applied to all circumstances, but it is a reminder that there is always hope and that ordinary people can do extraordinary things by working together.

Graham Willett is the author of Living Out Loud: A History of Gay and Lesbian Activism in Australia. This review first appeared in a slightly different form in Gay and Lesbian Review Worldwide.

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Second Opinion, Doctors Disease and Decisions in Modern Medicine, By Richard Horton, Granta Books London

By Ross Duffin

As a person who has been living with HIV for far too long I have noticed how the practice of medicine has changed in the last 20 years. I was interested in how all of the lifestyle co-risk factors associated with the common HIV drug side effects (cardiovascular risk, diabetes, osteopenia, lipodystrophy) necessitated an increased focus on health promotion programs relating to smoking cessation, good diet and exercise within the practice of medicine. In talking about some of those changes a friend suggested this book might be well worth a read.

Well this book was certainly well worth a read for anyone interested in the practice and politics of medicine. In a series of essays, Richard Horton, who edits The Lancet, covers some of the profound social and political issues confronting the world today. In the introduction Horton states: “Whereas over 60 percent of childhood deaths in developing countries are linked directly to under-nutrition, in the rich world it is obesity that is the foremost public health crisis among children – a crisis, it must be said, fuelled by an advertising driven sugar-sweetened soft-drinks industry… Why are these issues… not centre stage in today’s political debates? Partly because health and disease are interpreted as matters of lifestyle and not – as they are – profoundly existential, public policy, and geopolitical concerns.” Horton describes medicine as marginalised and blames it on “sclerotic establishment attitudes in journalism and public affairs, which have failed to adapt to changing forces within society”.

If those outside medicine don’t understand medical issues and their political and social dimensions, then equally perhaps medicine also doesn’t understand the social and political dimensions of what it tends to see as solely medical issues. As Horton points out, a 1995 report from the US Institute of Medicine stated: “The lesson of history is that prevention of infectious diseases by prophylaxis or immunisation will be only partially effective in the absence of changes in human behaviour and ecology.” This of course resonates loudly in the current moment in the response to HIV, where due to pessimism about vaccine development, pre-exposure prophylaxis is being promoted as the ‘medical’ solution – with not sufficient regard to the broader political, social and behavioural consequences – and in defiance of the lessons of history.

Indeed there is so much that resonates in this book and is relevant to current political debates about medicine and its practice. For example, in NSW we have seen a huge focus on medical errors and individual malpractice. Horton presents a well argued case for looking beyond ‘a civic culture that demands unattainable standards of perfection’ to a more systematic look at critical weaknesses, the role of health care teams rather than just individuals and a need to analyse errors and their causes – “a shift from the quick indictment of an individual to thoughtful enquiry about the whole health care apparatus”.

We have also seen the shift to ‘evidence-based’ medicine and ‘evidence-based’ health promotion. Horton pleas “for humility to become the binding force between experience and evidence. Today, experience is regarded as something of a sin to be repented for – it is best an old-fashioned way to practice, at worst dangerous. In our new quantitative world-view of medicine experience is out because it cannot be measured, packaged, examined, manipulated, or tested experimentally or statistically.” Yet in both HIV community work and medicine there is a body of practical knowledge that is not ‘evidence-based’.

I trivialise the book if I only focus on those parts that struck me as immediately resonating to current moments in local medical politics. The book is a tour de force across issues such as HIV/AIDS, bioterrorism, the human genome project, vaccination, surgery, and the World Health Organisation. Unsurprisingly, HIV/AIDS features prominently given its role in challenging assumptions about disease and its obvious political and social dimensions. For anyone wanting a history of the Duesberg controversy, the essay “Truth and Heresy About AIDS” is one of the best accounts I have read.

The book highlights so often how changes to our ecology, our increasing urbanisation and globalisation are facilitating disease. So striking is the imbalance between the developing world and the rich world – so obvious to those of us who work in HIV where the provision of life-saving drugs to most of the world who needs them has become an urgent priority and its delivery challenges so many things Horton writes about. Central for Horton is the role that medicine and doctors play in the future of medicine. In his final essay he focuses of the concept of human dignity as being central to this future.

Ross Duffin is an HIV Educator with AFAO.

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Global Sex

By Dennis Altman (Allen & Unwin, 2001)

Reviewed by Andy Quan

I’m trying to think of a witty analogy to describe Dennis Altman’s latest book but I’ll have to resort to description: Global Sex is brief – an economical and readable 164 pages, not including notes . It’s concise – the parameters of the argument are controlled and organised. However, within this sense of a clearly marked path, the wide scope of examples used to illustrate arguments and the joy in scholarship impart the feeling that anything can happen to you along the journey.

Altman’s main argument is that “changes in our understandings of and attitudes to sexuality are both affected by and reflect the larger changes of globalisation. Moreover, as with globalisation itself, the changes are simultaneously leading to greater homogeneity and greater inequality.” To support this argument, he discusses the link between sex and politics, explores the multiple meanings of “globalisation” and then places sex into a political economy that recognises the forces of political and economic structures on our gender, identities, pleasure, and desire.

Then, following a review of recent social and academic explorations of sex and politics, the book looks at HIV/AIDS, sexual identities, and the commercialisation of sex followed by a look at sexual politics and international relations, and the battle for traditional morality. A concluding chapter asks how to develop global sexual politics both in discourse and action. Within this framework, Altman presents syntheses of an encyclopaedic range of source material and draws from academia, pop culture, literature, and magazines.

As a reviewer, I offer this disclaimer: I was biased in my enjoyment of this book because I’ve always long been interested in the subject that he deals with. When considering studying international relations in university, I saw that lots of old-fashioned courses focused on wars and diplomacy. I chose instead the field of international political economy which was looking at issues I found much more engaging, such as how the global affects our personal lives and vice-versa, and the internationalisation of ideas and ideology. At the time, some important work was being done putting “gender” into international politics but discussions of sex and sexuality as related to international politics were quite formative. I’m thrilled to see in “Global Sex” how far the discussion has come.

You won’t find any handy conclusions here though, and rather than develop a number of specific theses, Global Sex provides a handy review of the latest work by key thinkers on sexuality and international politics as well as some interesting stuff on gender. Altman identifies and evaluates the key issues relevant to the subject in a documentary style, traversing physical and intellectual space, and reporting on the latest news and findings.

A further disclaimer: I’m not particularly interested in critiquing books, unless they really annoy me. I’m more interested in how they open up my thinking, give me ideas and let me understand the world – and Global Sex does that. Another review of the book talked about “rambling” organisation and “gratuitous asides” but I liked the mixture of conversation and academia. I think this accessibility makes it a more usable text, a springboard to discussion and debate for on-the-ground activists and folks involved in progressive social movements. As a colleague of mine Bridget Haire described in a review for Word is Out, while Altman describes oppressive and exploitative sexual economies and cultures, he also “positions movements for sexual freedom, if linked to other struggles for freedom and equality as an impetus for change toward a more just world.”

For readers of HIV Australia, the chapters on HIV/AIDS, sexual identity and commercialisation of sex will probably be of most interest. In drawing on his long-standing involvement in HIV/AIDS, the chapter on AIDS provides a compact overview of AIDS and global politics. The epidemic has “changed both the discourses and practises of sexuality” and the spread of AIDS is closely linked to the global economy including to the drug and sex trade. He looks at global responses to AIDS as well as the way it has influenced identities (such as Men who have Sex with Men, or People Living with HIV/AIDS) before turning to a discussion of cultural representations of HIV/AIDS.

Another of Altman’s areas of expertise is gay and lesbian identity and politics, both nationally or internationally. His look at the influence of globalisation of sexual identities should encourage a more complex understanding of our own sexual identities as well as the ones forming and changing around the world. He describes the uneasy relationship between traditional identities such as the Indonesia waria or Moroccan hassa and a modern “gay” identity and explores how movements and identities emerge, the politicisation of those identities and the influences of Western lesbian and gay politics in other regions. He also briefly touches on the issues of identity in sex work: the construction of an identity “sex worker” along with accompanying demands for human rights even while those who engage in sex work may resist these definitions – before going into a fuller exploration of the commercialisation of sex in a chapter which looks at sex tourism, the political economy of sex work, pornography and internet sex.

One of the things that I like most about the book is Altman’s subjectivity rather than objectivity. In his preface, Altman clearly situates himself within his writing and scholarship. He has “drawn heavily from lived experiences,” found examples “by hazard”, been limited by his reliance on English-language sources, and acknowledges his “activist roots.” He acknowledges that the book is his “own account of a very complex and problematic set of relationships which could be told in many ways.” By doing this, the book benefits both from Altman’s academic and research expertise - producing a smart, significant study of global sex – and from the personal – resulting in a work that is engaging, entertaining, and individual.

Andy Quan works as the International Policy Officer for AFAO and is the author of Calendar Boy (Penguin Australia).

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Euthanasia: behind closed doors

Review by David Edler

Angels of Death
Exploring the Euthanasia Underground.
Roger S. Magnusson.
Melbourne University Press
RRP $29.95

Argument and debate on the subject of euthanasia in Australia has followed a constant, low key line that has spiked on occasion and then dropped back down to its usual level of largely invisible if intense activity. Recently a spike occurred with the high profile activities of Dr Phillip Nitschke, a pro-voluntary euthanasia activist practicing in the Northern Territory and with the passing of the Rights of the Terminally Ill Act by the Northern Territory Government. This Act was later overturned by the Commonwealth Government.

A similar spike had occurred in the late 1980s and early 90s, prior to the introduction of a new classes of drugs to be used in combination, which improved the formerly bleak prognosis for people living with HIV.

In the absence of effective treatment, many people – and in Australia predominantly gay men – had faced the prospect of their HIV infection resulting in a protracted process of debilitating and painful illness culminating in death. It is easy to understand why voluntary euthanasia became an important issue for HIV positive individuals, their caregivers and the organisations that supported and advocated for them.

During this period it became apparent that despite the lobbying activities of AIDS councils and other oganisations, legislative change relating to voluntary euthanasia was unlikely to occur any time soon. People with terminal illness and their health practitioners continued to discuss and in many cases practice covert voluntary euthanasia.

In Angels of Death, author Roger S Magnusson has gathered together, through a process of first hand interviews, the experiences of health professionals who have assisted patients with HIV/AIDS to end their lives. Placing these experiences within the context of the “right to die” debate and the challenges of palliative care Magnusson has produced a book that is enlightening, challenging and destined to provoke controversy.

Using the interviews carried out with nurses, doctors, community workers, therapists and counsellors as a basis, the author examines aspects of the practice of euthanasia by the “euthanasia underground”. Utilising accessible language to examine a complex range of ethical, legal, political, moral, psychological and social factors Magnusson builds a comprehensive picture of a practice being carried out within, under and around the organised health care system’s response to HIV/AIDS in Sydney, Melbourne, Brisbane and to a lesser extent Canberra and San Francisco.

Unlike a good deal of literature produced on the subject Angels of Death takes neither an explicit or implicit stance on either side of the debate. Controversy will arise from its publication, however, because of its unambiguous stating of the fact that many doctors, nurses and others involved with the terminally ill have assisted people to end their lives.

In chapters titled “Disturbing Issues” and “More Disturbing Issues” Magnusson identifies concerns arising from interviewees’ testimony which would lend support to the arguments of both supporters and opponents of changes to existing laws and accepted medical practice.

My only concern in relation to the author’s bias is that on occasion he makes clearly negative judgements on interviewees’ competence and sense of professional ethics. The basis for these judgements appears to be the language they use in their interview and whether they employ “black” humour in their narratives. Paradoxically, in another section of the book Magnusson sites interviewees’ use of such humour and unvarnished language as being common amongst experienced health care workers and as a positive indicator of the candour and veracity of those interviewed. Given that he discusses his process for getting those interviewed to relax and open up to him, for the author to then criticise these people for discussing their experiences in a natural fashion seems somewhat unfair.

Overall, however, methodology of the research carried out to produce this work is presented convincingly as are the figures to support any quantitative assertions.

The intense, moving, sometimes funny, sometimes horrifying stories which unfold in Angels of Death will elicit feelings of recognition from anybody who has had involvement with the “euthanasia underground”. They also cannot fail, whatever the reader’s views on the subject, to invoke a questioning of beliefs and a deeper appreciation of the complex issues involved in this most complex of issues.

This is an important book, as worthwhile for those who are unsure of their view on euthanasia as for those who think that they are.

David Edler is a former member of the ACON Euthanasia Working Group and participated in the production of the booklet Choosing To Die. He is now employed as a policy officer with the Australian Federation of AIDS Organisations.

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Positive

Reviewed by Craig Johnston

Positive, By David Menadue, Allen & Unwin, Crows Nest NSW, 2003

There is a Potteresque dynamic to this book. That is, as with Rowling’s Harry Potter books, you want to keep on reading to find what he does next. But unlike Harry Potter who has been criticized for never having a shit, Menadue has all the bodily and mental functions of a robust human being. The amount of personal information never reaches the point of you exclaiming ‘Too much information!’, but it is a defining feature of the book.

Positive is an autobiography of one of Australia’s most well-known HIV-positive and gay activists. Menadue was diagnosed as positive in 1984 and with AIDS diagnosis in 1989. His engagement with the gay movement and the community-based AIDS response has seen him involved with Melbourne’s Gay Community News in the 1970s to the National Association of People with AIDS in the 2000s. Along the way, he collected a medal of the Order of Australia and a life membership of the Victorian AIDS Council. What is striking about the book is what he has chosen to focus on and how he has chosen to write it. Rather than providing a catalog of activisms and achievements, he gives most attention to his interactions with people and how his was feeling (both body and mind). The nature of the subject matter is such that others might have used the material to write one of those opaquely-biographical first novels, but he has chosen the path of non-fiction.

You get the full run of Menadue’s life. This is adeptly divided into three parts. The first focuses on the arrival of HIV into his gay milieu in Melbourne, his own infection, and his coming out as a positive man. The second jumps back to childhood and early adulthood, and his coming out as a gay man. The third part jumps forward, to the 1990s when he was in his 40s. I say ‘adept’ because the second part falls in the ‘right’ place in the narrative: it is the point when you want to know about the family and other social circumstances that help make a man a ‘man’.

Menadue grew up in a small town in Victoria in the 1950s and 1960s. ‘Dear little Wunghnu’ had its attractions, but the masculinist and homophobic culture was not a good place for someone who was not ‘one of the boys on the footy field’. As well, alcohol-based abuse of his mother by his father, and Dulcie Menadue’s associated mental health issues, present no picture of rural idyll.

Dulcie Menadue is one of the ‘stars’ of the book – but ‘star’ is not the right word. She has rough times, down times, and also shows resilience and compassion. Menadue describes her ordeals as lovingly and those of the friends whose lives and deaths also ‘star’.

The directness of his approach is radical. Whether it’s looking for Mr Right, a bad acid trip, anxiety, or treatment for facial wasting, he doesn’t care that you know.

In some of the ‘soft’ polemic he engages in, especially in the third part, Menadue is clear that it is better to be ‘out’ than in. The title of the book – as strong as it is simple – is a testament to that. But Menadue’s search for an understanding of self is no straightforward path. His body’s varying responses to the virus and his critical engagements with community-based AIDS responses (including by other seropositive people) suggest that ‘being’ a positive person is a negotiation. He says: ‘I don’t think I ever regarded this virus as a vital part of my identity.’ Likewise, his experiences in participation in subcultural and political aspects of gay community life suggest that ‘being’ a gay man is a negotiation. A subjectivity mediated by social structures and social movements.

As I was reading the book, I kept switching to the front and back covers. Not knowing the writer, somehow I needed to know what he looked like. On the front, we see a photo of the man today: a head and shoulders shot, an enigmatic smile. On the back cover, the boy (head and shoulders) stands in front of a montage of photos of Diana Spencer. It’s the same enigmatic smile.

It would be wrong to describe this book as ‘mere’ autobiography. It is social history, enriching an understanding of the social changes of the last decades as they have been lived by gay men. It is also a politics, a recreation of what it could mean to be positive.

Craig Johnston is a Sydney based freelance journalist.

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