HIV/Aids: stigma’s curse and cure

Ian Hodgson
30 November 2007

The results of a survey that one in five of British people aged between 14-25 would not care for a family member infected with HIV, and one in seven would not stay friends with someone diagnosed with HIV, makes salutary reading in the run up to World Aids Day on 1 December 2007. And its not just in Britain: the report, commissioned by the British Red Cross, also suggests that significant numbers in Ethiopia, Kyrgyzstan and South Africa just don't want to be with HIV-affected people.

What does this mean? This report adds to the overwhelming evidence that HIV stigma is alive and well, and as we near the beginning of the epidemic's fourth decade, many people living with HIV (PLHIV) remain marked as different - or dangerous - by their fellows. Mary Robinson, the former president of Ireland who now leads Realising Rights: The Ethical Globalisation Initiative, has stated that HIV stigma is "exceptional in its scale, its context, and its causes". At the sixteenth international AIDS conference in Toronto in August 2006, she added that stigma "hurts and imprints on the soul".

Stigma as a social process

Ian Hodgson is a lecturer at the School of Health Studies, University of Bradford. He has worked as programme adviser with Health and Development Networks (HDN) in Thailand. He has published a number of articles about HIV/Aids, especially around cultural perceptions of the virus, and international aid policy

Also by Ian Hodgson in openDemocracy:

"Loaded but lonely: the moralisation of US aid policy" (30 November 2005)

"Dazed and confused: the reality of Aids treatment in South Africa" (11 January 2006)

"The price of the ticket" (6 April 200Since the very early days of HIV, PLHIV have faced stigma and discrimination. Sometimes this is due to lack of information - flawed perceptions of risk based on ignorance of the fact that HIV is hard to catch, apart from a handful of specific - and obvious - routes of transmission.

Sadly, stigma is more than simply paucity of knowledge. Society inevitably constructs hierarchies, and unpopular illnesses like HIV provide useful markers indicating where people should be placed on the hierarchy. Susan Sontag, in her classic 1989 text, AIDS and its Metaphors, states "all societies need to have one illness which becomes identified with evil, [attaching] blame to its victims". This tendency seems locked into our DNA, and is as true now as it was when people with leprosy - and leper colonies - were widespread.

Stigma is therefore founded on a fundamental social process, and has far-reaching effects - not only do PLHIV feel dirty, ashamed and guilty, but stigma has the potential to damage public-health initiatives. If affected people fear stigma, they are much less willing to attend health-centres for testing or treatment. Instead, they are often forced to inhabit a world of denial and paranoia.

World Aids Day: the challenge

The theme of World Aids Day in 2007 is leadership. What should the priorities be in the next period in the context of HIV stigma?

First, there must be a concerted attempt to confront public discourse around HIV. Stigma - as a social product - lives and thrives within discourse. In the media, stigmatising reports about PLHIV have a significant impact on shaping public attitudes; there are many examples, among them the witch-hunt of women accused of intentionally infecting their partners with HIV, which are often based upon half-truths and fabrications.

Conflating HIV and race is also a common theme - HIV stigma is a useful tool for amplifying and codifying the unpopularity of migrant groups, and a recent report from the African HIV Policy Network and Panos London, Start the Press, suggests that stigmatising media coverage of HIV-infected African migrants exacerbates feelings of isolation, and their reluctance to seek treatment.

Also in openDemocracy on HIV/Aids:

Donna M Hughes, "The 'ABC approach' to global HIV/Aids: good for women and girls" (12 August 2004)

Tim France, "The United Nations and Aids: learning from failure" (30 May 2006)

Roger Tatoud, "Gendering the fight against Aids" (2o August 2006)

Alex de Waal, "The global Aids campaign: a generation's struggle" (25 August 2006)

Cathy Watson, "Uganda: HIV/Aids and the age factor" (1 December 2006)

Alex de Waal, "HIV/Aids: the next twenty-five years" (1 December 2006Second, political leaders must publicly take a stand against HIV stigma, and consider the impact of public policies on attitudes. The Irish taoiseach Bertie Ahern, for example, personally launched the "stamp out stigma" campaign in the country in December 2006. With such explicit government support, and in collaboration with a range of non-governmental organisations, the campaign expects to have a significant impact on raising the profile of HIV in Ireland, and reducing negative responses to affected people.

Less helpful actions are the proposed (or actual) policies of the United States, China, and more recently Australia in refusing entry to PLHIV, suggesting immigration policy may increasingly be influenced not just by fear of terror, but also of infection. In addition, the reluctance of senior politicians in some African countries - notably South Africa - to clarify issues around HIV and Aids, and (by implication) the value of testing and treatment, sends confusing and harmful messages to a populace struggling to cope with communities devastated by HIV.

Third, all agencies engaged with HIV must appreciate that many of their interventions are predicated on a lessening of HIV stigma. The G8 pledge in 2005 aiming for universal access to HIV care and treatment for all by 2010 - also endorsed by UN member states - was clearly a significant development. But if affected people are too afraid to be tested or attend for treatment, then the goal will surely remain aspirational. Adequate funding must be made available for initiatives to address social, as well as physical, components of HIV.

It starts from within

HIV represents a conflation of pathology and social process, and in the final analysis, perhaps the responsibility for confronting stigma starts with ourselves. We readily categorise others according to our own interpretation of acceptability. On a personal level, the Hobbesian notion of an instinctive drive to "war against all" is never far below the surface. Once we confront our own biases, perhaps then we can better understand those of others.

On this World Aids Day, let's take time to consider the effects of HIV stigma on the lived experience of people living with HIV/Aids, and continue to demand policies and interventions from our leaders - and ourselves - that properly address its complex social features.

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