Ian Hodgson

READING THE VIRUS: how cultures make sense of HIV

2008-02-09T01:26:00.000-08:00

READING THE VIRUS: how cultures understand HIV
WRITER: Ian Hodgson, MA PhD
ORIGINAL DATE: 2003
POSTED: 2008

Introduction

In trying to understand HIV, cultures in both the developed and developing world are faced with a puzzle, for in the case of this relatively new phenomenon, the usual benchmarks appear to be lacking. For example, the virus does not seem to possess the consistencies associated with the profile of a ‘normal’ illness: it inflicts the developed and developing world in entirely different ways; it has a long period of apparent inactivity (and an incubation period that is often measured in decades, compared with that of the Ebola virus, which is measured in days). This makes the analysis of cause and effect difficult; and any of a large number of symptoms can present as the immune system has recurring cycles of weakness and remission – symptoms that seem in some countries (at least in the Southern Hemisphere) to mimic those of prevailing endemic diseases already infecting large numbers of the population. In addition, the association of HIV with sex (and inevitably morality) has further complicated an already difficult situation, and even in countries where HIV is prevalent, people who are seen as being infected because of ‘unacceptable’ behaviours are stigmatised. In South Africa, for example, where nearly 20% of the adult population is infected (UNAIDS, 2000), an incident reported in the South African newspaper, the Durban Daily News, on July 15th 2000, described the stoning to death of a woman who had recently been revealed as HIV positive.

Given the multifaceted nature of HIV, it should be of no surprise that people turn towards prevailing, cultural models of illness, constructed from extant narratives and explanatory models, to provide meaning and guide behaviour. These models demonstrate a disparity between current germ theory, and an often an exaggerated fear of contagion in the presence of HIV (e.g. Akinsanya & Rouse, 1992; Gallagher, 1990; Mackereth, 1995; Nemeroff et al., 1994; and Serlo & Aavarinne, 1999). In health care workers, a corollary of this can be an unwillingness to care (Fusilier et al., 1998), and the application of a pejorative moral framework (Forrester & Murphy, 1992).

This paper will address the power of culture in defining reality for individuals and groups who, when faced with such significant events as HIV, draw on pre-existing explanatory models in order to provide meaning and into which new phenomena can be incorporated – a process first formulated in this form by Kleinman (1980), and confirmed in later studies (e.g. Farmer, 1994; and Mogensen, 1997). The discussion will focus on one particular aspect of cultural activity – the use of myth as a heuristic (toolkit) for understanding, and the way this has shaped subsequent constructions of HIV. The beliefs and perceptions of health care workers will be considered, framed around a suggested taxonomy of reactions to HIV.

1. Myth, culture and meaning

Culture can be defined as the acquired knowledge people use to interpret experience and generate behaviour (Spradley, 1980), and the beliefs of a culture are often held in the extant narratives, or myths, that ‘line the walls of our interior systems of beliefs like shards of broken pottery’ (Moyers, 1988). In the correct sense, myths are not untruths or fallacies, but clusters of beliefs created by a society (and in which members share and collude) for the purpose of organising and understanding the world. Indeed, the relationship between myth and culture is symbiotic; the potential of myth (often enacted though ritual) is dependent upon culture for articulation and vitality; and cultures are dependent upon myth to give meaning and order to a chaotic and unpredictable world. Myths form the main ingredient in the ‘glue’ holding a social group together, re-iterating and reinforcing beliefs about the world (Kirk, 1970). Myths function at a number of levels. Sacred (usually ancient) myths address significant, metaphysical questions, such as ‘where are we from?’ (provided by cosmogonic myths); and ‘where are we going?’ (explained by eschatological myths). More recent (modern) myths are usually secular in nature – a prime example being the myths of ‘merrie England’ (nostalgia of a ‘golden era’ in the past) (Porter, 1996), as represented in many literature and films. The role of modern myth is also to reinforce cultural values and justify actions, particularly in internecine and international conflicts. Schopflin (1997) suggests nations use myths to define their characteristics and distinctiveness from others – Afrikaners, through various discourses, justified racist policies by citing myths of ‘chosen election’ (chosen by God).

This functionalist and anthropological approach contrasts with that of the structuralist Claude Levi-Strauss, and latterly the critic Roland Barthes, who, when presenting his post-structuralist credentials classified myth as a ‘type of speech’ (Barthes, 1973, p109) – defining speech as the dissemination of cultural meanings through all available media (discourse). For Foucault, discourse transcends language, forming the constraining grids that determine the classification of ‘objects’ (Foucault, 1972), and these characteristically post-modern approaches, should be seen as complementary to rather than dismissive of the more traditional approach. Both emphasise the power and ubiquity of shared cultural understandings, a notion this paper is attempting to describe, and the concept of myth, as a ‘told’ story, or as collective meaning within discourse, remains an invaluable starting point in the explication of cultural beliefs.

There is no doubt that myths are a force to be reckoned with. Warner (1994), in an analysis of myth in the modern world, rebuts the Jungian view espoused by Campbell (1980) that mythmaking ceases when cultures either reject received archetypes, or fail to construct new ones. Instead, she suggests that the rise in the number of media channels has led to an increase in the creation and dissemination of myth. Indeed, it is argued by some that societies need myth in order to retain essential parts of their nature. The idiosyncratic though (for some) compelling American writer Robert Bly (1996) suggests an absence of myth can contribute towards societal fragmentation. Kolakowski (1989) provides a more metaphysical analysis by stating that the pragmatic ‘instrumental rationality’ (epitomised in the field of natural science, and logico-deductive reasoning) is superseding the ‘mythological-symbolic’ constructions necessary for effective cultural functioning. The result is a lack of meaning in ‘the totality of the practical efforts of our brains, muscles and hearts’ (ibid. p. 130).

2: Culture, meaning and HIV

The conflation of cultural knowledge and HIV/AIDS has been discussed in previous papers – with relation to cultural iconography and symbolism (e.g. Aggleton et al., 1989; and Rosello, 1998), and specifically in the context of metaphor (e.g.Brandt, 1988; and Sontag, 1991). All adopt a broadly social constructionist approach, and the key feature uniting these papers is the fundamental need for a ‘system’ of explanation when faced with the trauma of AIDS, not least because it ‘ranks with smallpox, plague and leprosy in its capacity to menace and hurt, to burden and spoil human experience, and to elicit questions about the nature of life and its significance [and a] catastrophic outbreak of illness forces a society to seek answers to questions of dread and death’ (Farmer & Kleinman, 1989, p139). It is thesis of this paper that the cataclysmic nature of the virus produces for all people – not least health care workers – a cultural resonance invoking the explanatory power of both ancient and modern narratives and extant cultural ‘toolkits’. Negative reactions, rather than being seen as examples of just dubious belief frameworks, are instead logical (albeit inappropriate) responses to a myriad of cultural signals.

How are these signals disseminated ? Warner (1994) defines myth as a ‘story told in public’, and the media, as the arbitrator of much public discourse, has a central part in influencing the construction of collective meaning; for good and ill. For example, the inaccurate use in various media of the terms epidemic, pandemic and plague, and the conflation of immorality and infection in the tabloid press (Chippindale & Horrie, 1992; Watney, 1998; Weeks, 1989) has consistently obfuscated the representation of HIV, in many instances resonating with past catastrophic illness events. Whilst actual plagues are rare in our times, the term has a powerful resonance with history, and when associated with HIV, strengthens an ancient mythical fragment of universal danger, leading to the inevitable scape-goating and victim blaming. There is also the suggestion of a throwback to the ancient myths of Greece, illustrating current perceptions and mythical constructions often reflect the past. Greek and Biblical myths are redolent with notions of contagion and individual behaviours leading to public retribution. The Sophoclean play Philoctetes is a very early example of an individual ostracised because of disease (Sophacles, 1979). This series of connections illustrates the potency of a selective use of language, and implications of the ‘long reach’ enjoyed by the less salubrious sections of the media.

3. The representation of HIV: a taxonomy

To understand reactions to HIV, therefore, it is necessary to consider the extant mythical frameworks, and (perhaps more importantly) to appreciate other narratives and disparate elements that may inform them. Three broad categories of beliefs (and there may of course be more) are suggested here: beliefs about the individual who may present a danger; beliefs about just punishment; and beliefs about contagion. Here, each of these categories will be addressed, and contributory factors drawn from history and more recent years, identified.

Firstly, beliefs about the person who may be infected. The need to know exactly who is infected with HIV is very strong in the academic literature. Early studies such as Akinsanya (1992), and Henry (1990) suggest that there is a desire to know who is infected, with the implication of, if not a refusal to care, then at least a differential form of care. Later studies, reviewed by Valimaki (1998) confirm a continuing fear of becoming infected with HIV and the need to know who is carrying the virus. The notion that a person poses a threat, but is at the same time disguised, appears in many narratives, both ancient and modern, where transmutations form the ‘complicating action’ of the plot. These include: Greek myths such as Ovid’s Metamorphoses (1955); mediaeval fears of Satanic mutability; the chimera or shape-shifters in many children’s stories (Warner, 1998); malignant invaders in 20th century ‘chillers’ such as Invasion of the Body Snatchers (Siegel, 1955), and Mimic (del Toro, 1997); benign, as manifested in the character of Odo the ‘constable’ in Deep Space 9 (Various, 1993-1999); and as both malignant and benign in J.K. Rowling’s Harry Potter novels for children (especially Rowling, 1999). The notion of ‘hidden’ danger associated with HIV continues into the new millennium, with the headline (in UK popular newspaper The Sun) introducing a of the ‘threat’ posed by HIV positive health care workers – ‘HIV danger of the untreated nurses: more students may carry virus’, stating in the first paragraph that scores ‘of African nurses training in Britain could be secretly (sic) HIV positive’ (Parker, 2001). Does ‘knowing’ equate with less risk, however ? The associated belief fragment that ‘knowledge equates with safety’ forms part of a broader myth relating to the power of scientific objectivity - epitomised in the ‘medical gaze’ of Foucault (1973), and raises important questions of justice and the threat to personal autonomy and liberty.

But, this ‘need to know’ is driven not only because of a fear of contagion, but also due to a need for meaning (Wilton, 1992), so implicit assumptions about the people who are (or may be) HIV positive can be made – usually that they are ‘different’ in some way, and require ‘containment’ or banishment. This sentiment was reinforced by a headline (again in popular UK newspaper, The Sun) with the headline in the late 1980s - ‘fly away gays and we will pay’ (1987), and there is no doubt that people who were at risk of HIV were depersonalised, and in at least one Health Education Authority, implicitly ‘ignorant’, and condemned to a fate dramatised by a liberal use of primal, archetypal images of gravestone, chisels and earthquakes, that were intentionally alarmist and high profile (Wellings & Field, 1996).

The implications were clear - the film exaggerated the conflation of dissonant behaviours and disagreeable outcomes, invoking themes derived from ancient notions of retribution. Beliefs of punishment and about morality have been, and remain, central to the HIV/AIDS context. Throughout history, intervention of the supernatural is credited regularly with the cause of disease. The second outbreak of bubonic plague in the fourteenth century, the most devastating of the last 2 millennia, was construed as a religious problem (Cipolla, 1992) - the result of moral laxity rather than questionable public health. McNeill (1989) notes that according to the beliefs of the time - ‘it is the punishment that God inflicts on whom he wills, but he has granted a modicum of clemency with respect to believers’. In the time of apocalyptic events, a framework of religious belief is reawakened in order that sufficient meaning can be given to a new phenomenon, and this is indeed reflected in responses in parts of the media to HIV on its emergence in the West. Certain UK based newspapers asked fundamental questions reminiscent of mediaeval responses to plague – where has this come from? What will happen to us? Who is to blame? (see Garfield, 1994). The various forms of ‘panic’ that ensued are discussed in detail by Watney (1998), and resemble the fear and accusations that are a regular accompaniment of catastrophic disease.

The belief that infection is punishment for ‘unnatural behaviour’ has a corollary that ‘innocent’ people are less likely to become infected. Nemeroff broadens this concept (1994) by highlighting the notion of moral-germ conflation, where the science of germ theory is superseded by a more instinctive and irrational perception of contagion, enhanced by a moral perspective introducing a guilt and innocence continuum determining the likelihood of contagion. Thus, if the person is ‘good’, then the risk of infection is less than if they are 'bad’. An example of this reasoning is found in various US studies, suggesting that young people conform to a myth framed by a moral interpretation of HIV transmission. Young adults participate in high-risk behaviour believing they would be ‘safe’– they perceive their personal innocence or guilt determines vulnerability to illness (Nemeroff & Rozin, 1999). This is moral-germ conflation at its most manifest, and represents an especially resonant notion that contributes towards the framing of attitudes towards certain patients amongst health care workers (West et al., 1996). Perhaps the most prominent example of this category is the hierarchy of innocence – that people infected by individual behaviour are ‘less innocent’ than children infected via vertical transmission (Breault & Polifroni, 1992; Forrester & Murphy, 1992; Hodgson & Hodgkinson, 1998; West et al., 1996).

Thirdly, beliefs about contagion. These are the commonest, and perhaps the most confused. The belief (originating with the 2nd century physician Galen) in the contagious powers of corrupted atmosphere (miasma) was widely held during and after the 2nd plague pandemic of the 14th century Europe (Ziegler, 1998). The role of micro-organisms in causing infections was seriously considered only in the 19th century, and anecdotal beliefs of infection by direct contact transmission have always been central in individual belief frameworks – described anthropologically by Frazer (1978/1922) and more recently in the context of nursing care by Hettiaratchy (1997). The film Philadelphia (Demme, 1993) illustrates this belief precisely, when the (HIV positive) protagonist touches a cigar box on the desk of his prospective lawyer, The camera (the sight line of the lawyer) dwells on the box for an extra few seconds, signifying the latter’s fear that his cigars are now vectors of infection. In nursing, a similar phenomenon was shown in a study demonstrating that health care workers considered the sharing utensils and donating blood (a form of reverse contagion) as potential routes of transmission (Akinsanya & Rouse, 1992). Contagion beliefs are often more complex than questions about cleanliness and dirt, and are usually manifested in an exaggerated fear of infection. One study (Burtis & Evangelista, 1992) found nurses were more wary of becoming infected with HIV than hepatitis B, though in reality the risks of the latter are increased by a factor of 10. Perhaps the pronounced symbolism of blood in many cultures contributes to the wariness many have for this particular body fluid, as Epstein notes (1998) in relation to economics, and Warner (1991) as applied to legal categories of ecclesiastical judgement. This is epitomised in the apparent reluctance of a cleaning agency to clear up after the bombing in Soho of what was known as a gay pub in which 3 people were killed (reported in Private Eye, 14th May 1999).

Studies carried out in the field of risk assessment provide important insights into locally constructed belief systems. McQuiston (1998) found that trust, and the risk of infection, are inversely related. In this study carried out among Mexican-Americans, the prevalence of ‘machismo’ (in which the male dominates) complicates the negotiation of condom use. Promiscuity does occur, but if the element of trust is present, then the perceived risk of infection is lessened. Grove (1997) found that a group of middle class, American females were less stigmatised (and by extension less ‘risky’) because of their symbolic capital – i.e. social status. Other studies (e.g. Nemeroff & Rozin, 1994) confirm this, and it is clear that a cultural belief equating perceived personal innocence with protection from infection could play havoc with health education programmes. Downe (1997) found that sex workers in the Central American country of Costa Rica have a perception of HIV that contrasts with the traditional bio-medical model of ‘risk groups’. HIV was constructed as part of the broader experience of violence (which they saw as another form of ‘infection’). Thus, the risk of HIV is inseparable from the risk of violence, and by implication, a lack of violence implies a reduced threat of transmission.

4. Recommendations

The above discussion has demonstrated that views of HIV are not necessarily contingent upon objective notions of illness, but are shaped by powerful and resilient cultural models. One additional issue, of course, is the entropic drift away from a desired, humanistic ethic espoused by current professional codes, towards a stance characterised by paranoia, notions of just punishment, and contagion beliefs inconsistent with germ theory (Hodgson, 1997). The discussion above has established that ritual boundaries established by carers are not simply meaningless repetitions or blind self-protective manoeuvres, but rather a manifestation of the prevailing cultural frameworks, that have not yet been superseded by more appropriate models of understanding. Previous studies that suggest carers find the HIV challenging (for a useful critical review, see Valimaki et al., 1998) often seem to underestimate the effect of prevailing cultural beliefs. Indeed the often pejorative nature of these studies must be balanced by the main thesis of this paper – that carers actually want to care (Bennett, 1995), but may be hampered by constructions endemic within their social context. People who find HIV ‘difficult’ should not therefore be ‘judged’ (though of course inappropriate care delivery cannot be tolerated); rather, adequate support should be provided to address issues (for example) of fear of contagion (Serlo & Aavarinne, 1999), burnout (Hayter, 1999), stigma (Blumenfield et al., 1987), and the excessive demands upon staff this in area of care (Horsman & Sheeran, 1995). HIV ‘naïve’ carers should first be allowed to consider their own cultural viewpoints, and unpack these in favour of more appropriate perceptions of the virus. Importantly, the resonance with other narratives and belief fragments prevalent in their culture should be recognised.

To conclude. This paper has considered the role of culture in the rhetorical construction of HIV, and examples of extant mythical frameworks and a selection of the elements that inform them have been addressed. The influence of culture in the perception of illness should never be underestimated – in patients/clients or in carers, and from the evidence presented, it is clear that there should be a reappraisal of cultural mores in illness beliefs. They play a significant part in our instinctive response to events. Neither should the power of myth be ignored, either as story, or as a thread of belief that permeates discourse and in which a culture colludes, often by default. It is this collective collusion that allows ‘mere’ beliefs or opinions to become more powerful and all encompassing. Myths are not always altruistic or beneficial, and in many cases their dissemination in various media is done blindly or manipulatively. They must always be examined, for the air of ancient wisdom is part of their seductive charm (Warner, 1994).

‘Myth and story go beyond mere explanation, and give access to our inner wisdom [an understanding of this] is absolutely vital if we are to embrace the chaos and complexity of postmodern life' (Mead, 1997, p21)

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HIV/Aids: stigma’s curse and cure

2008-01-06T10:25:00.000-08:00

[by Ian Hodgson: originally published in openDemocracy on 30th 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

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.

Second, 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.

Dazed and confused: the reality of Aids treatment in South Africa

2008-01-05T00:46:00.000-08:00

South Africa’s health and public policy towards people infected by HIV is surrounded by a political firestorm – with the German-born nutritionist Matthias Rath at its heart.

[Ian Hodgson: originally published in openDemocracy 11th January 2006]

HIV has always been more than simply a virus: wherever it strikes there is controversy, panic and confusion. In 2005, heated debate around aid allocation policy, and the morality of certain HIV prevention strategies were prominent in the discourse. As always, access to Aids treatments was also high on many agendas, not least because December 2005 marked the end of the World Health Organisation’s “3x5” initiative: a two-year campaign to provide 3 million people globally with anti-retroviral medication (ARVs).

The campaign fell short of its target by about 1.8 million, and this deficit highlights another major controversy that continues to blight Aids care provision and treatment in South Africa. The country with the most people infected with HIV is paradoxically also the place where there seems to be most controversy. In 2000, President Thabo Mbeki publicly questioned links between HIV and Aids, aligning himself with a small group of largely United States-based Aids denialists. Now, Dr Matthias Rath, perhaps the most controversial nutrition-specialist since Robert Atkins, seems to have the ear of South Africa’s health minister, Mantombazana Tshabalala-Msimang.

Who is Matthias Rath?

Matthias Rath is a German-born medical researcher who over the years has gained increasing prominence as one of a growing number of scientists who challenge orthodox views of the HIV epidemic and the treatment of affected people. According to Rath, anti-retroviral medications (ARVs) for Aids are harmful and essentially ineffective; their endless promotion by drug companies and international agencies is simply a product of economics and corporate greed.

Instead, he promotes a nutritional alternative through which, the Rath Foundation website claims, “millions of lives can be saved now – naturally”. This “natural” approach is a cocktail of vitamin supplements, amino acids, minerals and trace elements that the Rath Foundation claims are able to reverse the symptoms of Aids. Rath cites empirical evidence supporting his view of ARVs and of the benefits of a nutritional approach. Through 2005 has been putting on show people with Aids who have apparently eschewed ARVs in favour of the Rath approach, with dramatic results. In a country where the demand for ARVs outstrips supply by a factor of four, news of an alternative is for some miraculous.

Criticisms

Rath has attracted a firestorm of criticism from scientists, activists, and academic institutions whose work he claims justifies his theories. The Harvard School of Public Health for example, famously distanced itself from Rath in May 2005, after he cited findings from a study in Tanzania published by the school as confirming his views. Harvard, in a press statement, said: "We condemn these irresponsible and misleading statements as in our view they deliberately misinterpret findings from our studies to advocate against the scale-up of antiretroviral therapy."

On various fronts, Rath has been accused of opportunism, hypocrisy, of being a charlatan, and trading on Aids misery. The Treatment Action Campaign (Tac), a highly vocal and influential NGO in South Africa, which for years has advocated that the 600,000 or so affected people still without medication gain more access to ARVs, accuses Rath of promoting pseudo-science.

At the end of November 2005, in an action supported by the South African Medical Association, Tac sued the government for not taking a more robust stance against Rath’s activities in the country and demanded a report from the health minister, Mantombazana Tshabalala-Msimang. This action is a clear indication of increasing concern not just over the theories promoted by the Rath Foundation, but also over allegedly unethical trials in Cape Town’s townships, and unscrupulous recruitment of treatment recipients. This accusation was given some credibility recently when, according to one news report in October 2005, two people with Aids whose improving condition had been attributed by the Rath Foundation to nutritional supplements, had been on ARVs all along.

Science, relativism and South Africa

The refusal of the South African government to condemn Rath outright has caused widespread consternation: indeed, the health minister has appeared with Rath, and seems to go out of her way to promote the benefits of nutrition – food “just like our grandmothers used to make” – to maintain the health of people living with HIV/Aids.

Why has this situation come to such a point? Two considerations are important in understanding and learning from this debacle: the possibility that the issues at stake may simply be a matter of perspective (that, in other words, Rath could have a point), and that the controversy could be the product of political and economic expediency.

The first consideration may on the surface have some merit. Science and the community have never been easy bedfellows. The “transitional truth” of science – an assumption that today’s theories may be discounted tomorrow, and that “truth” is generally in a state of flux – never rests easy with a public who desire certainty, especially in a context so sensitive and charged as HIV/Aids.

The nutrition versus ARV debate could be an example of the usual rough and tumble of the adversarial world of scientific discourse, taking place in the public domain instead of behind the closed door of a laboratory. Overt criticism of Rath – beyond the context of scientific debate – could therefore be premature, and contribute towards a situation similar to the debate in Britain over the alleged side-effects of the MMR (measles, mumps and rubella) vaccine, where public disagreement amongst scientists has stoked public confusion.

Rath’s accusation of the predatory behaviour of the drug companies that manufacture ARVs also has a kernel of truth. Drug companies are often responsible for maintaining high prices, and holding onto drugs patents for as long as possible: Brazil’s government went head-to-head with the pharmaceutical company Abbott in July 2005 in a bid to wrestle the patent of ARV Kaletra from the company, in order to provide a cheaper generic alternative.

The year also saw vigorous spats at the World Trade Organisation and G8 over proposed (though not as yet fully realised) flexibilities on trade-related intellectual property rights (Trips) in relation to ARVs, confirming that rules of trade are not readily eschewed for public-health imperatives.

However, the credibility of the notion that Rath is simply a victim of an inflexible and over-bearing scientific community breaks down over his foundation’s recommendation that people with Aids use nutritional support in place of ARVs, rather than the more orthodox view that the two can be part of a holistic package of care. The sheer number of studies – from a range of sources – that demonstrate the benefit of ARVs, suggest that any position that does not include these must be challenged; and by the criteria of the “transitional truth” notion, Rath has produced no substantial data yet to justify outright rejection of ARVs. Rath therefore cannot and should not make the claims he does.

The second consideration in this drama, that the sluggishness of the South African government in condemning Rath may have ulterior political and economic motives, also has evidence to draw on. A policy that implicitly supports a nutritional alternative to ARVs could distract attention from the appalling lack of progress in access to Aids-medications. The roll-out of ARVs in South Africa is painfully slow: this is the wealthiest and one of the most stable nations on the continent, yet of the 840,000 people who require ARVs, estimates for the end of 2005 suggest that only around 200,000 (up from 104,000 in September 2004) will have access.

The “dash” for ARVs that started in the 1990s has created immense problems for South Africa economically. But is has also become a matter of national pride: why should developed countries dictate to South Africa about how it should tackle HIV? The health minister, speaking of “3X5” in June 2005, stated that “nobody had asked South Africa” what they thought of the proposal; instead it was imposed from Geneva. Seeking an African solution to an African problem has for South Africa been implicit in a number of policy developments: and the emphasis on nutrition could be one example.

The politics of confusion

Political motives or not, the serious faultlines across the landscape of South African public policy are of concern; foremost among them a lack of cohesion and clarity in information for the millions of people currently affected by HIV, and a worrying tendency to align with views that are at best unorthodox, at worst a threat to public health.

Andrew Feinstein, chair of the London-based NGO Friends of the Treatment Action Campaign (FoTAC), says the South African government must take more responsibility, for its “refusal to encourage people who need them to take ARVs, confusing public messages, and the slow pace of the roll out of treatment are significant contributory factors in the death of Aids-related causes of over 800 South Africans every day”.

The government’s 2003 “Operational Plan for Comprehensive Care and Treatment for people living with HIV and AIDS” was hailed by many as the most radical on the continent, but this potentially rational approach is being obfuscated. The result will be what FoTAC most fears – hundreds of thousands of people with Aids but without immediate access to ARVs, attracted to the as yet unproven Rath solution.

As always with such confrontations, it is the HIV-affected person who is disenfranchised, caught in the crossfire of political rhetoric, and forced to wait for experts to come up with a solution for a fatal disease. Since the fall of apartheid, South Africa has made remarkable progress politically: but it is sad that in the greatest threat to the nation’s health, there remains a level of confusion and lack of cohesion that could yet be its nemesis.

[this article online here ]