Article created September 2009

Solutions to stigma

By Daniel Reeders

‘Stigma’ is frequently invoked as HIV sector shorthand, gesturing at a wide range of prejudicial attitudes, discriminatory practices and unpleasant experiences. We don’t always know how to define it, but we know it when we see it. Often, the concept of stigma stands in for the social ‘remainder’ – the stubborn, irrational prejudice we believe our carefully formulated strategies cannot hope to change. In successive state and national HIV/AIDS strategies, the crucial importance of stigma is repeatedly acknowledged, but almost never included in priorities for action. The enormous breadth of the conceptual field seems to have brought educational policy and strategy to an impasse.

In 2008 the NAPWA Health Promotion Education Network commissioned the development of a discussion paper and skills workshop in time for the AFAO Educators Conference in Wollongong, seeking to build consensus around a specific definition and shared language for addressing HIV-related stigma. A review of the literature found our sector is not alone in struggling with the breadth of the concept, and some great work has recently been done to identify specific and practical dimensions of the problem. This article offers a pragmatic conceptualisation of stigma, considers its individual and cultural manifestation, and finally suggests some possibilities for a programmatic solution.

Conceptualisation

In Stigma: Notes on the Management of Spoiled Identity, Erving Goffman first defined stigma as ‘an attribute that is deeply discrediting within a particular social interaction’.1 The name itself refers to a mark, focusing attention on its bearer, instead of the social process investing it with power and meaning. Bruce Link and Jo Phelan suggest this approach sometimes looks like blaming the victim, pointing out a comparative lack of research into the psychology of people who discriminate.2 Similarly, queer theorist Michael Warner has argued that silence is a privilege of normality, sustained by requiring deviance to announce and constantly narrate its presence and difference from the norm.3

This is an important perspective: some of the strategies we adopt to challenge stigma and social hierarchy – such as coming out, disclosing positive serostatus, Pride March and Mardi Gras, and visibility campaigns – might appease and unintentionally reinforce the underlying social process. Recognising this problem, Guy Parker and Peter Aggleton called for a stronger focus on stigma as a social process which sustains and reproduces relations of power and control that lead to social marginalisation.4

Reviewing the incredible profusion of subtly-different invocations of Goffman’s original work, Link and Phelan propose a definition of stigma based on the co-occurrence of five components: (1) labelling, (2) stereotyping, (3) separation, (4) status loss and discrimination, (5) social power. Although their understanding of power is rather clunky, it usefully operationalises stigma as a set of interrelated social processes, each of which may be susceptible to disruption by well-funded community health interventions. The component definition shows how much is packed into the concept of stigma, and it’s worth taking some time here to explain and illustrate the key terms.

Labelling. In the early days of HIV, KS or wasting did the job; then it was physical side effects of medication. As the drugs have improved, positive status has for many become concealable, and this shift has produced great anxiety about whether people living with HIV will ‘do the right thing’ before and during sex.

For some positive people, this has intensified ‘felt’ stigma and fear of disclosure. Others have chosen public disclosure, often via Internet profiles, which might accede to the demand to identify your differences but also seems associated with enhanced resilience and a sense of relief – showing the tension involved in maintaining what our profession calls ‘confidentiality’ but which stigma constructs as ‘secrecy’. These examples illustrate how stigma can operate even when labelling is merely potential or possible.

Stereotyping. Stereotypes are not just ‘incorrect images’ or myths needing to be ‘dispelled’; they serve a social purpose and encode a dense network of associated meanings into a figure of knowledge. Showing pictures of positive people sans horns and a tail is not enough to dissolve these associations.

Separation. This refers to the us-vs-them thinking that stigma produces, and this fact has enormous relevance for prevention, since it facilitates othering – the process of discounting one’s own responsibilities and outsourcing them as obligations upon the Other.

Status Loss and Discrimination. At this point stigma begins to have individually perceptible effects, as people living with HIV feel devalued as people by their positive status, and every occasion of disclosure re-enacts the moment of diagnosis. With sensational media coverage of criminal prosecutions, every person with HIV now bears the loss of status associated with potential criminality – and the anxious interrogation of their sexual practice for signs of illegal onward transmission. Stigma is most obviously manifested in discrimination – but by this point, it has usually gathered around itself underlying justifications and a cover story, such as ‘we can provide better, more specific care if we know their status’ (at a medical imaging facility).

Social power. Link and Phelan insist that only socially powerful groups can stigmatise others. However, Harriet Deacon, writing from South Africa, notes that people at any level of society can participate in and perpetuate the social processes constituting HIV stigma.5 Parker and Aggleton adopt Foucault’s definition of social power as something more fluid – more like energy than a stable attribute or possession – to argue that stigma is centrally concerned with domination and marginalisation and how these are deployed to maintain the social order.

The take-home point is that discrimination occurring without Link and Phelan’s other four components is not stigma. Sexual rejection practiced because a positive guy only wants sero-concordant unprotected sex does not stigmatise negative men. Likewise, if an HIV-negative guy is honest about his fear of HIV, admitting it’s how he feels rather than projecting it onto positive men in general, then he’s able to respond to serostatus disclosure without (inevitably) making a positive guy feel dirty and rejected.

Manifestation

The component definition offers readers a handle on the ‘what’ of stigma. Looking at how it plays out – its individual, cultural, and governmental manifestations – offers a grip on the ‘why’.

Individual

One of the striking things about prejudice is the lengths to which individuals will go to defend and rationalise objectively discriminatory beliefs when these are challenged. Techniques like motivated reasoning, denial, defensive avoidance, reactance, and message discounting are employed as fear control to manage strong emotional states like the fear/anxiety provoked by thinking about HIV infection. 6

In an essay on ‘The Psychology of Security’, about the politics of fear around national security, Bruce Schneier makes the important point that fear (the ancient, inbuilt fight-or-flight response) can neurologically override the rational processing functions of the brain. ‘We have two systems for reacting to risk – a primitive intuitive system and a more advanced analytic system – and they’re operating in parallel.’ 7

The neocortex (rational brain) knows that condoms afford protection against HIV, but the thought of HIV provokes strong emotion, and stigma/discrimination can be understood as a socially-intermediated version of the fight (hate speech) or flight (sexual rejection) response. In the brain, the neocortex is described as the slow-learning system, and time and conscious effort are needed to train the brain to overcome the initial and immediate intuitive assessment of risk embedded in the presence of strong emotion.

The time and effort needed are visible in the slow, deliberate learning process some HIV-negative gay men undertake to overcome their practice of stigma against HIV-positive men as potential sexual and relationship partners. It certainly makes it clear that individuals cannot simply make a snap decision not to stigmatise people living with HIV, and that trying to challenge these attitudes will be counterproductive if it simply provokes more fear/anxiety and defensiveness.

It also shows the alignment of stigma reduction with HIV prevention objectives, since the same psychological processes that buttress stigma and discrimination also impede the acquisition of knowledge and skills around condom use and sexual negotiation. As Catherine Dodds found in a study of responses to a question about criminalisation included in the 2006 Gay Men’s Sex Survey in the UK, respondents who supported punitive legislation and emphasised the exclusive responsibility of people living with HIV to prevent transmission were more likely never to have tested for HIV and to show higher need for HIV prevention education. 8

Cultural

The cultural manifestation of stigma has been very much on display in recent years with moral panic in the media around the public health management of HIV-positive ‘sexual predators’. In a chapter for a forthcoming NAPWA monograph on criminalisation, I have described moral panic as the acute phase, and stigma as the chronic phase of the same social process – of devaluation and marginalisation of people according to selected aspects of difference.

Whereas moral panic and stigma are concerned with the reproduction of ideology and social order – quite abstract, high level structures – the American sociologist Howard Becker’s concept of ‘moral entrepreneurialism’ captures the potential for deliberate/opportunistic deployment of panic and stigma to advance a particular social agenda.9 Recent examples include the children overboard affair and the War on Terror. To these, I would add the ‘barebacking and bug-chasing’ memes, which spread like wildfire in the mainstream and gay community media, out of all proportion to their actual incidence in ‘real life’.

In a conference paper, I have described barebacking and bug-chasing as ‘images in a jurisprudence of desire’ – a justification for intervening in gay male sexual culture by representing unprotected sex in relation to deliberate/reckless HIV infection.10 Criminal prosecutions of HIV-positive people for onward transmission are the logical consequence of this process, but it’s the logic that matters, not the outcome; criminalisation may be seen as ‘collateral damage’, especially in light of its unintended consequences (suchas giving negative men a false senseof security).

Governmental

One of the most seductive ideas in recent educational discourse has been the prospect that we can create or harness a ‘cultural norm’ against barebacking or in favour of condom use. Citing peer pressure against smokers, public health researcher Ronald Bayer recently asked a provocative question: can ‘good’ stigma be used to discourage behaviours that are harmful to individual and public health? 11

In relation to queer sex, however, this approach can only fail. By the time two men have sex, we have already had to transgress so many cultural norms, about gender, desire and the male body, our sexual relations are a physically embodied critique of social normativity – a fact simultaneously acknowledged and dismissed in the stereotype of gay men as inherently transgressive or ‘naughty by nature’.

In response to Bayer, Scott Burris points out that regardless of severity, stigma has an objective of dehumanisation at its core (‘us-and-them thinking’ in the Link and Phelan model) and argues this has no place in governmental responses to social problems of any kind.12

Solutions

• Around Australia, successive state/territory and National HIV/AIDS Strategies have acknowledged the central importance of tackling stigma and discrimination to create a supportive environment for HIV prevention and the promotion of positive health. It is time to identify stigma reduction as a priority for well-conceived, properly-funded programmatic action – and here’s what we could do to start:
• By adopting a shared definition and language around stigma,using the insights offered byLink and Phelan and Parkerand Aggleton, we can defineand offer solutions based onwhat stigma isn’t;
• Narratives like ‘Dean’s Story’on the VAC/GMHC Staying Negative campaign website13 illustrate the social learningprocess that HIV-negative mencan undergo to overcome theirfear of HIV and practice ofstigma discrimination;
• A literature review of stigma solutions, undertaken for anew AFAO campaign onthe topic, suggests personalcontact with people livingwith HIV enables HIV-negative men and the broader community to ‘triangulate’ (critically evaluate) negative stereotypes distributed through media and online;
• Personal and public disclosureof HIV status benefits HIV-negative men by increasingtheir cognitive availability of the prevalence and possibility of HIV infection, and reduces the impact of negative cultural stereotypes.14 It could thereforebe understood and promotedas an act of courage and a giftfrom people living with HIV to their communities;
• Campaigns, outreach and peer education should acknowledge that change happens slowly and focus on building skills – for positive men, around framing and timing disclosure, and for negative men, around acknowledging their feelings and responding sensitively to disclosure;
• Community-based research and activism against sexual racism offer a model for HIV stigma reduction in online gay chat and profile sites. (Sexual racism is the stigmatisation of Asian men as sexual and romantic partners, and expression of racial microaggression towards them15). By pointing out that it doesn’t cost users anything to choose positive expressions of desire and preference, this approach highlights the racism and aggression under-lying the insistence on saying ‘No Asians’, refuting the claim that it’s ‘just preference’, a value-neutral right to choose; and
• On a day to day basis, AIDS Councils and PLWHA organisations need to engage with and ‘talk back’ to the promotion of stereotypes about gay men and HIV in the media, not by making the factual point that irresponsible people living with HIV or gay barebackers are rare – since facts are never allowed to get in the way of a good story – but by offering actual name-and-face counter-narratives of altruistic and responsible gay/poz men.

References

1 Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity, Englewood Cliffs, NJ: Prentice-Hall.

2 Link, B., Phelan, J. (2001) ‘Conceptualising Stigma’, Annual Review of Sociology 27(1) 363.

3 Warner, M. (1993) Fear of a Queer Planet: Queer Politics and Social Theory, Minneapolis-St Paul: U of Minnesota Press.

4 Parker, G., Aggleton, R. (2003) ‘HIV and AIDS-Related Stigma and Discrimination: A Conceptual Framework and Implications for Action’, Social Science & Medicine 57(1) 13-24.

5 Deacon, H. (2006) ‘Towards a Sustainable Theory of Health-Related Stigma: Lessons from the HIV/AIDS Literature’, Journal of Community & Applied Social Psychology 16 (6).

6 Kunda, Z. (1990) ‘The case for motivated reasoning’, Psychological Bulletin 108(3) 480-498; Witte, K., Allen, M. (2000) ‘A meta-analysis of fear appeals: Implications for effective public health campaigns’, Health Education & Behavior, 27 p. 591.

7 Schneier, B. (2008) The Psychology of Security. Available online: <http://www.schneier.com/essay-155.html> (copy on file); also available (excerpted) as, ‘Why the human brain is a poor judge of risk’, Wired.com, 22 Mar 2007 at <http://www.wired.com/politics/security/commentary/securitymatters/2007/03/SECURITY_MATTERS0322>.

8 Dodds, C. (2008). ‘Homosexually active men’s views on criminal prosecutions for HIV transmission are related to HIV prevention need’, AIDS Care 20 (5) 509.

9 Becker, H. (1973) Outsiders: Studies inthe Sociology of Deviance. New York:The Free Press. pp. 147–153.

10 Reeders, D. (2006) Barebacking and Bugchasing: Images in a Jurisprudence of Desire, Passages: Law & Literature Conference, Melbourne.

11 Bayer, R. (2008) ‘Stigma and the ethics of public health: Not can we but should we’, Social Science & Medicine 67 (3) 463–472.

12 Burris, S. (2008) ‘Stigma, Ethics and Policy: A Response to Bayer’, Social Science & Medicine 67 (3) 473.

13 VAC/GMHC (2005) ‘Dean’s Story’ on Staying Negative <http://www.stayingnegative.net.au>.

14 Kahneman, D., Tversky, A. (1974) ‘Judgment under Uncertainty: Heuristics and Biases,’ Science v185 pp. 1124–1130; Pescosolido et al (2008) ‘Rethinking theoretical approaches to stigma: A Framework Integrating Normative Influences on Stigma (FINIS)’ Social Science & Medicine 67 p431.

15 Reeders, D. (2008) Sexual Racism and the Rice Market: Desires for Sameness and Difference, Quench Feast Queer Thinkers Program, 16 November 2009, Adelaide.