女权在线－女权主义者的集结地

Devising effective HIV prevention, treatment and care programs requires the ability to understand and harness people’s ways of actively striving to deal with HIV in their everyday lives.  It involves encouraging and enabling people to transform their sexual lives; it involves treating, caring for and supporting those with HIV and those affected by HIV; and it involves mitigating the impact of HIV – the social, the political and the economic impacts – especially in those regions and countries hardest hit by HIV and AIDS.

Here I am going to talk about the work I know best --- that focused on HIV prevention in Australia.  What sort of HIV-prevention programs have worked and continue to work best?  What can researchers do to enable people to transform their sexual lives and the practices surrounding their drug injection?

Background

Globally, approximately 40,000,000 people are now living with HIV.  Each year,  prevalence has increased as new infections outstrip the number of deaths.  In 2005/6 it was estimated that there were around 4.3 million new infections and around 2.8 million deaths.  Thus, while the global rate of incidence rate is thought to have peaked – at least in some countries – the absolute number of new HIV infections continues to grow (UNAIDS 2006). 

Part of the problem is that prevention, having fallen off the agendas of both governments and donors, has faltered. One of the reasons for the decline in prevention is the immediacy of the need to treat those with HIV.  Anti-retroviral drugs are expensive and whilst HIV budgets have increased exponentially since 2001, many governments are now spending a significantly greater portion (if not all) of their AIDS budget on treating those who are ill – leaving investment in prevention much depleted.

It is my belief that there exists an unacknowledged tension between prevention and treatment and that while there is a great deal of rhetoric about the importance of both prevention and treatment, and some largely misguided attempts to link prevention to treatment, prevention has stalled in many countries.

It is not only that the prevention dollar has shrunk, but there is also a growing belief in some quarters that prevention (at least what is usually referred to as behavioural prevention) is not effective.  At the same time, there has been a move towards investment in the development and trialling of biomedical prevention technologies such as circumcision and pre-exposure prophylaxis.   

In other quarters, the belief is not that prevention has failed but rather that governments and donors have failed prevention.  I am of the latter view and argue that prevention not only can but has and does work if a ‘social’ public health model is adopted and when prevention programmes are supported and properly resourced. 

My argument is that prevention is ‘failing’ because prevention programs and policies are currently informed by a ‘modern’ public health, a public health underpinned by neo-liberal notions of agency and individual responsibility and the personal blame, stigma and discrimination that inevitably accompany such a doctrine.  

Let me illustrate by describing – in part – the HIV response in Australia. What is central to the Australian response is a partnership – between affected communities (gay men, injecting drug users, sex workers), the civil society organisations who advocate for and represent these communities, governments, researchers and clinicians and other public health professionals.  I describe here the place/position of social researchers within that partnership – and what we did and what we continue to do…

Three Public Healths

“Traditional” public health’s concern is structures – social and economic structures that are clearly related to, and produce, the vulnerabilities that make populations susceptible to HIV. So the aims of a ‘traditional’ public health are to alleviate poverty, promote gender equality, legislate against discrimination, … These concerns are central to the eradication of HIV – but to a large extent they have been overlooked or reduced to issues around access to health services.  Structural change is difficult to achieve but as is increasingly apparent that such change is essential in any successful response to HIV. Without some move to gender equality for example, women in many countries will continue to find it difficult if not impossible to protect themselves from HIV.   

Recently we have seen a turn to a ‘modern’ public health with its concern for and focus on the individual – the neo-liberal rational and autonomous subject – who is positioned as responsible for his or her own health.  Within this model of public health the claim is that change is best achieved by providing an individual with the necessary expert information on which to base a rational response. 

The HIV prevention response within the modern public health paradigm is to educate, advise and counsel the individual to adopt safer practices – condoms, clean needles, voluntary counselling and testing.  Prevention is essentially top down – from the expert to the individual – who is the recipient of the advice and the counselling.  Risk-taking is positioned as a function of a misperception of risk or a lack of information on the part of the individual. Or risk taking is ascribed to psychological factors such as lack of “self-esteem” or “self-confidence” or to other more pejorative factors such as ‘anti-social’ or addictive personalities that compromise the ability of the individual to make “rational” choices, or to act on the information received.  The individual is held responsible and blamed if s/he does not act rationally or appropriately.  Stigma and discrimination are natural if unintended consequences of this ‘modern’ public health – particularly in the context of the epidemiological naming of ‘risk groups’.  Stigma and discrimination are reinforced by the epidemiological categories developed in order to respond effectively to a virus, a virus that is continuing to spread along societies’ fault-lines of race, gender, sexuality and class.   

While the traditional model recognises that an epidemic is a collective event and one deeply seated in the stresses and strains of a society; a symptom of the ways in which we organise our social and economic relations, both models of public health – the traditional and the modern – are essentially ‘top down’ and change is achieved via the expert, the public health authority.  

There is however a third model of public health – a ‘social’ public health – one informed by sociology and anthropology rather than the more individualistic social science, psychology.  It is a model that recognises the collective nature of epidemics and at the same time works with collective (communities, networks) to transform social relations. 

’Social’ public health acknowledges that persons are constituted in the social and recognises that actions/ behaviours are socially produced.  Typically this model and its variants are informed by social science notions of practice, social transformation, and collective agency.  Importantly, social scientists who developed these theories were inspired (often self consciously) by the collective practices of prevention already at work in various communities, particularly the gay community at the beginning of the epidemic.

These social theorists argue that individual behaviour and “choice” is always mediated and structured by social relationships, which are in turn traversed by important differences of community, social status, class and other structural differences such as gender and age.  In other words, individual behaviour is always contextual, always socially embedded.  For these theorists, prevention information is not passively imbibed by individuals but must be actively taken up (appropriated) through talk and collective action within a given social context in order to acquire meaning and become effective.  

Prevention interventions here are focused on resourcing communities or groups to educate and skill their constituent members, on changing normative understandings and expectations, and acting on their behalf to advocate for change.  There is support for social movement. Within this model, success (and failure) lies in the ability of policy makers and researchers to enter the life worlds or take up the positions of members of the communities or populations at risk and understand the world from their point of view. It lies in policy makers’ and researchers’ ability to be critically reflexive and to build on the understanding and practices of the communities at risk and to harness their collective energies and attempts to respond – in this case - to the risk of HIV.  In this model failure to respond effectively to the threat of HIV is understood as the inability or unwillingness of government (and civil society) to act – not as the sole failure of the individual.   

To illustrate aspects of ‘social’ public health I draw on two key characteristics of the Australian response.

(1)    working with community (individuals connected through complex webs of social relations) – not unconnected individuals. Understanding cultures and contexts, working with sexual practices not behaviours, dealing with meanings; and,

(2)    working from the bottom up, not top down. Not imposing a set of interventions but paying attention to the ways in which community responds to threat and building on those responses.

Illustrations from the Australian Response

Meanings: Practice versus Behaviour

People do not engage in sexual behaviours – “penis-in-vagina” - they enact sexual practices – they ‘make love’ or ‘have a one-night-stand’.  What turns sexual behaviour into a social practice is meaning.  Meaning is not to be confused with cognition – in the sense of meaning residing in the mind of an individual.  Meanings are essentially social in  that they are formed in the relations between people. 

So while sexual behaviour may be similar across time and place, sexual practice differs.  There are only a small number of sexual behaviours in which two or more people can engage – sexual intercourse (both vaginal and anal), oral-genital sex (fellatio and cunnilingus) and oral-anal sex, a number of more esoteric behaviours, such as sado-masochism, as well as a range of behaviours that involve touching – mutual masturbatory behaviours.

Sexual practice, on the other hand, is more fluid: it takes on a number of forms.  Sexual practice is a social and cultural practice produced within a particular historical time and place and embedded in specific locations and formations.  Sexual practice is different in Australia from France or Nigeria; it was different in medieval times than now; it changes depending on whether it is enacted within a stable relationship or a casual encounter; whether it is imposed, as in rape, or mutually agreed upon; it is different for men and women; and for heterosexuals and homosexuals. 

If research is to inform communities and enable them to act, then research has to engage with these meanings and understand them. 

Two examples from my early work with gay men illustrate this:

(1) When a member of ACON came to Macquarie University in 1985 requesting help, we formed a steering / advisory committee – comprising gay men from community and academics including political scientists, sociologists and social psychologists.  My role was to develop a questionnaire to ‘measure’ the sexual behaviours (practice) of gay men in Sydney but I knew nothing about gay sex.  So the committee discussed gay sex – casual and committed, esoteric and ‘vanilla’, sex in bedrooms and saunas and sex clubs, and I was given gay porn to read.  These discussions and the pornography helped me develop a questionnaire.  The questionnaire was a joint product of researchers and researched: it was informed by gay men who understood their sexual practice and their sexual lives and by educators from gay community who had some sense of the practices that might be modified to protect gay men.

We worked together – in partnership. We worked with community, with gay men in a manner which recognised their expertise – the expertise of their everyday life.  So to illustrate again:

(2)  In 1987 the SAPA team (Social Aspects of the Prevention of AIDS) gave our first feedback to the gay community – not to the AIDS Council but to Sydney gay men – many of whom had taken part in the survey.  It was my task to deliver the paper describing what we had found.  The venue, the lecture theatre at the Albion Street Clinic was full.  I was extremely nervous.  Rehearsing, I found myself wondering whether I should talk about anal intercourse – receptive and insertive – with or without condoms - with or without ejaculation or whether I should talk about insertive or receptive fucking with or without condoms – with or without cumming;  whether I should talk about oral-genital sex or sucking;  or oral-anal sex or rimming and so on.  In the questionnaires we had used both formal and colloquial terms.  As I began my talk I was still undecided – but as I spoke I became certain that I should use colloquial terms.  I was right – using the colloquialisms included them, I was talking with them, not simply about them.  It signalled that we, the researchers, acknowledged their lives and their expertise with regard to their lives, their sexual practice – they knew what it was like to be receptive and insertive – to reciprocate – and they knew about relationships between men and how these relationships – be they regular and committed, casual or anonymous – affected the use of condoms.  They, the gay audience, realised that I took them and their sexual practice seriously.  We jointly recognised that feedback to the community was central to community responsiveness and to community action.  Our research was informing their practice and their practice, our research.

‘Bottom Up’ not ‘Top Down’

I use my final illustration to demonstrate the importance of not imposing prevention strategies but building on the responses of community itself.    

In response to the threat of HIV, gay men in Australia developed their own strategies.  It was they who decided on condoms – well before public health officials acted.  In the main, they did not abstain from sex (sex defines who they are) and they did not adopt monogamy.  Although there was some reduction in partner numbers in the very early response to HIV, as condoms became normative, partner numbers went back to where they had been before.

Although gay men refused monogamy as a safe prevention strategy (sensibly so) they did develop a strategy of their own – no condoms within regular/primary relationships that were concordant for HIV-seronegativity.  This strategy was identified in our data and instead of simply ringing alarm bells about the increasing number of men dispensing with condoms within their regular relationships, we informed gay community organisations (ACON) and undertook closely focused research.  On the basis of our work, ACON developed TTTT (Talk Test Test Trust): an education campaign to ensure that the ‘negotiated safety’ strategy was as safe as possible.  This strategy was endorsed by the NSW Health Department (which evaluated the campaigns) and later by other state health departments in Australia and other gay communities in Europe.

There was significant tension associated with this move – with some gay educators anxious about a move away from ‘condoms every time’.  A decision was not taken lightly and it was a community decision - made with great flair.  TTTT posters and banners hung up and down Oxford Street – on the pylons of the Harbour Bridge, and of course. in saunas and sex clubs, gay bars and other places gay men congregate for social and sexual reasons.

Conclusions

So to return to the question I posed at the beginning... Good HIV prevention requires the ability to understand and harness people’s ways of actively striving to deal with the problems that emerge in their everyday lives. 

Effective prevention builds on strategies already developed or being developed by people (collectively) as they actively strive to deal with HIV in their everyday lives:  – condom use, strategic positioning, reliance on undetectable viral load, negotiated safety, serosorting,  … Good social public health recognises that people are not only individuals but citizens.  It recognises and indeed relies on the fact that people interact (talk, negotiate, have sex…) together and that social relations and their transformation are the bread and butter of social change.  So, for example, health promotion initiatives are informed by social research, by biomedical developments and by gay men themselves as they engage with and discuss social and biomedical research with reference to their social and sexual relationships.  Some strategies are better than others in terms of reducing harm but if they emerge from within the community, policy makers and health care workers need to be aware of and work with them – to reinforce them or persuade community otherwise. 

Effective intervention targets the “glue” between people, the point where meaning is negotiated and changed – not individual behaviour or knowledge.  Indeed changing individual’s sexual behaviour is in many ways doomed to fail if societal norms are not changed at the same time.  As the world moves to biomedical prevention – circumcision,  pre-exposure prophylaxis, microbicides, and one hopes, vaccines, I urge those in public health to remember that:  “An epidemic is par excellence a collective event.  While individuals do have responsibility for their actions, that responsibility has always to be considered in a context of what individuals (collectively) can do given the structures of inequality and the histories within which they live their lives.” (Barnett and Whiteside, p.79)  Unless public health researchers work with these collectives to understand their lives, unless they adopt a critical and reflexive stand, and take up the position of the other (the gay man, the women, the sex worker, and take up these positions in order to see well, they and we will fail.

Prevention can and indeed does work – if carried out with members of the populations affected.  These populations are not made up of unconnected individuals but people who have sex with one another – or use drugs together.  Harness their energy, resource them, support them and work WITH them and the rewards are enormous.  

References:

Barnett, T. and Whiteside, A. (2006) AIDS in the Twenty-First Century: Disease and      Globalization, Palgrave MacMillan:United Kingdom.

Kippax, Susan, Noble, J., Prestage, G., Crawford, J.M., Campbell, D., Baxter, D. and        Cooper, D.(1997) Sexual negotiation in the ‘AIDS era’: negotiated safety      revisited, AIDS, 11(2), 191-197.

Kippax, S. and Kinder, P. (2002) Reflexive practice: the relationship between social research and health promotion in HIV prevention, Sex Education, 2, 2, 91-104

Kippax, S. (2003) Sexual health interventions are unsuitable for experimental evaluation, in J. M. Stephenson, J. Imrie & C. Bonell  (eds.) Effective Sexual Health Interventions: issues in experimental evaluation, Oxford University Press: Oxford, pp. 17-34.

Kippax, S. and Race, K. (2003) Sustaining safe practice: twenty years on, Social Science & Medicine, 57, 1-12.

Stephenson, N. & Kippax, S. (2006) Transfiguring relations: Theorising political     change in the everyday. Theory & Psychology, 16, 391-415.

Waldby, C., Kippax, S. and Crawford, J. (1995) Epidemiological knowledge