Forced to the margins … again …

By Peter Canavan and John Rule

In a recent article in The Monthly, Professor Dennis Altman argues that globally HIV/AIDS has been forced to the margins, and has largely vanished from public consciousness. However, recent media attention on criminal cases involving transmission of HIV in Australia has brought HIV into the public consciousness again.  Unfortunately this new visibility has been overwhelmingly negative, with sensationalist media reports using language not seen since the late 1980s (e.g. ‘innocent victims’ and ‘AIDS carriers’).  The effects of this media attention on the lives of positive people is negative as it leads to increasing stigma surrounding HIV has the potential to undermine support structures and force people living with HIV again to the margins of society. 

The effects of this trend were apparent at the NAPWA General Meeting in April 2007[1], where representatives reported that their own constituents were expressing concerns about the current environment, in which public health frameworks for dealing with HIV seem to be pushed to the background.  In some jurisdictions members were feeling quite embattled, searching for an effective response to inappropriate and misleading media coverage.

Fear of disclosure – in health, research and social service environments

One of the big concerns that positive people express is around privacy and confidentiality.  Being able to control when and to whom to disclose your HIV status is essential to creating a supportive environment for positive people.  HIV Futures Five reports that 51.8% of positive people surveyed had had their HIV status disclosed to another person when they did not want it to be (24.9% in the last two years).  This figure still includes startling figures of 15.5% of people experiencing unwanted disclosure (in the last two years) and 9.7% within health care settings (in the last two years).  The question of ‘who can I trust?’ (with information about HIV status and sexual practices) is still a concern. 

Positive people are frequently encouraged to disclose information about their sexual practices in research and clinical environments, but are concerned that the confidentiality of this information cannot be guaranteed.  Positive people also note that they now need to disclose their status in a wider variety of health, welfare and social service settings in order to access mainstream programs.  In the current climate, when mainstream media representation has been about a particularly small group of people in the context of legal actions, positive people are worried about being stereotyped.

Fear of disclosure – in personal, social and sexual networks

Focus group discussions with positive people[2] and campaigns such as those conducted by Positive Life NSW highlight the complicated nature of disclosure in social and sexual contexts.Negotiating the complex terrain of sexual negotiation and disclosure remains a key challenge for people living with HIV/AIDS[3], as they balance the need to disclose(a legal requirement in NSW, for example) against possible negative consequences of doing so.Women with children have reported that disclosure in social and family contexts has become more fraught in recent years. Men living heterosexually with HIV also report being forced into a position of silence around their HIV status in social contexts.  ‘Sero-silence’, ‘secrecy’, ‘concealment and ‘dissociated lives’ are recorded as part of the experience of men and women living heterosexually with HIV[4].

Increased legal and social burdens

The legal burden of HIV is clear as each state and territory has public health laws in relation to HIV transmission and in some states and territories there are specific criminal offences relating to deliberate or reckless transmission. The extent to which these laws are understood by the Australian population generally (and in fact the HIV positive population) is less clear. There have been attempts to provide clarity around these legal responsibilities through community education programs and the distribution of literature[5].  However, in a climate where reviews of requirements are being conducted (such as the recent Griew ‘Review of Policies for the Management of People with HIV who risk infecting others’) both in Australia and overseas,[6] positive people are speaking the about increasing burden of legal responsibility. 

Positive people recognise that there have always been a set of social responsibilities which come with a positive diagnosis.  Many have responded to this through engagement in HIV advocacy and prevention education work, through work in positive speakers’ bureaus, for example, since the start of the epidemic.  However there is now a different dynamic occurring in the social world of HIV, in which positive people arepositioned assolely[7] responsible for all aspects of their social world.   This social responsibility can also extend to responsibility for developing a network of services and support structures.  There are possibly two ways of reading this situation: the first is that it is good to be so actively engaged in shaping service provision and better services will be the result; another reading is that the work of shaping services can be an additional burden when one is already managing an illness. 

This may be a trend not only in relation to people living with HIV/AIDS in Australia, but perhaps positive people are identifying a wider trend in western liberal democracies, in which marginalised communities are increasingly being held responsible for management of their own problems.  Further, these communities may be penalised through the withdrawal of state service provision if they do not comply[8] with other legally (or socially) punishable codes of behaviour.

The burden of HIV is being individualised

Researchers Michael Hurley, Jeffrey Grierson and Kane Race have argued that the experience of HIV is increasingly located in a ‘clinical space’, or managed by individuals in a way that does not allow any longer for a collective understanding of HIV-positive experience. At the NAPWA AGM in 2007 member organisations reported that their constituents, because of recent media coverage, were speaking of their ‘fear of being quarantined’, ‘lack of trust in health workers’, ‘concern about disclosing at work’, ‘lack of trust in organisations in maintaining confidentiality despite stated policy’, ‘feeling that the attitudes are represented in the gay press as well as the general press’, ‘being labelled as a carrier’, ‘being stereotyped’ and ‘being put back in the closet’. 

If the experience of HIV is being individualised, the question arises: what opportunity is there for an isolated person with HIV who does not have community and social support mechanisms, to reflect on their ‘individualised’ experience? In the absence of safe environments in which to talk, or networks which can provide some validation and support - what assistance can be provided to isolated positive people?  How can they be supported so that they don’t live in fear, so that they have confidence in health and social service systems, practice self care, and practice that in a way that will include care of others? 

What is needed now?

NAPWA has an important role to play in seeking to ensure that Commonwealth and State policies and guidelines for the management of people with HIV who endanger others or are accused of endangering others are fair and reasonable.  NAPWA can advocate on behalf of positive people, to include the humandimensions of HIV in these debates, and ensure that the impact of laws relating to HIV on positive peoples’ lives are considered before decisions are made.

Likewise, in the absence of nationally consistent laws organisations such as NAPWA have an important role in ensuring that all positive people have access to consistent, reliable information about the law in relation to disclosure of HIV status and intentional transmission of HIV, and about their legal responsibilities.  Positive people need more information about what is considered ‘deliberate’, ‘negligent’ or ‘reckless’ behaviour within this set of legal responsibilities. 

When management and control processes operate in a climate of fear, blame and uncertainty, the unintended effect may be to increase the stigma, ostracism and potential discrimination faced by people living with HIV.  One of the most significant things that NAPWA and its member organisations can do to assist people with HIV is to revitalise efforts aimed at combating myths and untruths about positive people, and highlight the responsible behaviour of the overwhelming majority of positive people.  It is equally important to make visible the powerful participation of HIV positive communities in developing and supporting Australia’s national response to HIV.  

Peter Canavan is Senior Coordinator of the Health, Treatments and Research Unit, NAPWA

John Rule is Deputy Director of NAPWA

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