Myth and HIV: The role of cultural narrative in the construction of HIV/AIDS
Presented at National HIV Nurses Association (NHIVNA) Conference June 1999
This paper will focus on one form of cultural narrative that plays a key role in the construction of HIV and AIDS – myth.
Specifically, the discussion will:
- Provide an overview myth
- Define relevant terms and the features of myth
- Address the centrality of myth to culture
- Outline a framework (taxonomy) of HIV and myth
- Conclude recommendations for education and health care
Introduction
The reaction to HIV among health care workers is often amplified beyond accepted germ theory , and is often dependent not upon what they know about the virus, but rather what they believe they know – the ‘reality of the really made-up’ (from .
This reaction includes an exaggerated fear of contagion, and an almost instinctive categorisation of the infected person. The corollary of this is often an unwillingness to care and the application of a pejorative moral framework .
A number of factors affect the perception of HIV and AIDS, including: political; psychological; sociological; and anthropological , and it is the latter with which this paper is concerned. The cultural construction of an illness is distinct from the pathological definition of a disease , and in medical anthropology explanatory models are useful in gaining an insight into how individuals construct the meaning of illness .
From the standpoint of culture, disease and illness are distinct. A disease is categorised by medical science into signs, symptoms and treatment. An illness is much more determined by the cultural context in which it emerges. All illnesses are metaphors, for they:
‘…absorb and radiate the personalities and social conditions of those who experience symptoms and treatments.’
This discussion will focus upon one factor contributing towards the construction of HIV: myth.
The need for myth: HIV defies easy classification
According to the literature and anecdotal evidence, HIV for many people defies precise classification: it does not fit the profile of a ‘normal’ disease. It inflicts the developed and developing world in different ways has a long period of apparent inactivity (making analysis of cause and effect difficult), and any of a large number of symptoms can present as the immune system weakens, then reveives. This context is further complicated by the association of HIV with sex, death, taboo and youth.
It is thus unsurprising, therefore, people are forced to depend upon cultural models of illness, constructed from existing mythical frameworks and illness narratives, to provide meaning and guide behaviour.
Cultures answer these questions by using myth, and any discussion of culture cannot ignore the importance of myths. In the true sense, myths are not untruths. Rather, they are beliefs adopted by a culture in order to organise and understand the world. Thus, myth and culture are symbiotic. The potential of myth is dependent upon a culture for articulation and vitality; and cultures are dependent upon myth to give meaning and order to a chaotic and unpredictable world.
Definitions
To define terms. In this presentation, culture is defined as: the entire pattern of beliefs, attitudes, values, ideas and knowledge that members of social groups hold about themselves . Importantly, myth is not defined in the pejorative sense, as a word used to denigrate or deny the truth of a narrative. Rather, it will be assumed that myths are a central component of the ‘glue’ that holds a culture together, re-iterating and reinforcing beliefs about the world
Myths function at a number of levels
Sacred myths – creation, Adam and Eve, the acts of God as according tp the Judeo-Christian myth are still a powerful resource for certain aspects of Western decision making.
Secular myths - even nursing is subject to myth making ! – many narratives relate to Florence N- some true, some fantastic though impossible to ignore
Modern myths - According to Warner, ‘myths can lock us up in stock reactions bigotry and fear’ , and this is best illustrated in myths of nationhood. Schopflin suggests nations use myths to define their characteristics and distinctiveness from others – Afrikaaners, through various discourses, justified their racist policies by citing myths of ‘chosen election’ (chosen by God). Another example is in former East Germany (the GDR). In the post Hitler years, myths of creation and origin were difficult (they would have included Nazism), therefore new anti fascist myths were created, and included the concept of redemption by the Red Army and communism. These were then disseminated via the church and state.
If I can risk being partisan for a moment, in the United Kingdom, interesting secular myths include: the friendly local ‘bobby’ (policeman); November 5th (bonfire night); Halloween; nostalgia – ‘Merry England’ (a golden era in the past). Certainly not ‘untruths’, but certainly including phantom elements. But, they also contain symbols that many people ‘collude’ in believing, therefore serving to strengthen the ‘collective’.
Origins of myth
Where do myths come from ? Who legitimises them ? They are keystones in our belief systems – they ‘line the walls of our interior systems of beliefs like shards of broken pottery’ .
Traditionally, the sacred myths have grown within a society to explain the ‘big’ questions about the world – where do we come from ?; what happens after we die ?; why has this or that happened ? Adherence to sacred myths in some societies is patchy, though in most parts of the world are present to a greater or lesser extent.
What about ‘modern’ myth ? These are used to reinforce cultural values justify actions. In many cases, people with power and influence (including religious or political leaders, and newspaper editors) monopolise myths that serve their purpose, then disseminate them using whatever media are available. In relation to HIV, this has caused problems with the interchangeable use of the terms epidemic; pandemic and plague in various discourses. Genuine plagues are rare in our times, but the term has a powerful resonance with the past, and when linked to HIV, contributes to the myth of universal danger, leading to scapegoating and victim blaming.
Myth and HIV – a taxonomy
In the construction of illness generally, myths play a central role in providing meaning and coherence. For the purposes of this paper, I would like to focus on 3 categories of myth in relation to HIV/AIDS: myths of the infected; myths of punishment; myths of contagion.
- Myths of the infected
The myth of the need to know is very strong in health care eg. , and indeed in society generally, This creates a strong sense of paranoia similar to that felt by many Americans towards the fear of communist invasion during the 1950s (exemplified in the film Invasion of the Body Snatchers).
This is partly through a fear of infection, but also a need to ‘control’ reality – we are ‘creatures of meaning’ - and implicit assumptions about the character traits of people who are HIV positive. The are ‘different’, and require containment.
The myth of knowledge equates with safety is strong (manifested in a need to know), and is part of a broader myth relating to the power of scientific objectivity transcending subjective aspects of an illness.
In other cultures, such as Haiti and the Philippines , the search for meaning drew in other illness models of other endemic diseases (‘bad blood’ and ‘weak lung’ respectively). Myths pertaining to these conditions were used to categorise and provide meaning for HIV – its source and prognosis.
- Myths of punishment
In history, supernatural intervention is credited regularly with the appearance of disease. For example, the 10 plagues of Egypt in the OT; and the bubonic plague of the 16th century- ‘it is the punishment that God inflicts on whom he wills, but he has granted a modicum of clemency with respect to believers’ contemporary source: cited in . This does not only apply to disease - I noted that in the last few months, Pat Robertson (a fundamentalist American minister) attributed the Orlando hurricanes to (amongst other things) the toleration of homosexuality in that part of the USA.
Interestingly, Thomas notes that one of the reasons for the decline in a belief in the power of magic in the 16th century was the disappearance of plague. This suggests that in the time of apocalyptic events, a framework of belief is reawakened in order that meaning is given to the new scenario. Indeed, when HIV and AIDS first became an issue in the West, the ‘red-tops’ in the UK asked fundamental questions that myth may in the past have supplied the answer – what will happen to us?
In the early days, myths abounded as to the sources of HIV (eg. the result of germ warfare), but HIV as punishment for ‘unnatural behaviour’ is common within many narratives, largely those parts of the media revelling in salacious material. But, in the UK during the 1980s the Health Education authority did use potent images resonating with fundamental mythical themes. Images used on TV in Government ‘information’ films included: creation and/or apocalypse (the rocks/earthquake); death figure and tombstones (death); weapons such as chisels and knives (warfare). The implication was clear – this virus is here; people are infected; to avoid infection do not do this….
The most prominent example of this category is the myth of hierarchy of innocence – people infected through using IVD, on a guilt and innocence continuum, are most distant from children infected via vertical transmission (eg . Also, those who hold ‘conservative views’ consider the virus to be a result of divine retribution, and indeed the ‘conservative personality’ is a personality characteristic that subscribes to the myth that anti-hedonism and a restriction of sexual behaviour will lead to a more ‘moral’ society.
- Myths of contagion
These are the commonest, and perhaps the most confused. The film Philadelphia illustrates this paranoia well – when Hanks (who in the film is HIV positive) touches a cigar box on the desk of his prospective lawyer. The camera dwells on the box for an extra few seconds, representing the view of the lawyer, now afraid his cigars are receptacles of infection. The myth of contact transmission is powerful, and is supported by , where health care workers consider sharing utensils and donating blood (a form of reverse contagion) as potential routes of transmission. This is supported by myths about cleanliness – often determined according to the perceived ‘decency’ of the person, and their familial roots .
Contagion myths are often more complex, than questions about cleanliness and dirt, however. They relate in the majority of cases to an exaggerated fear of infection. Burtis found nurses were more wary of becoming infected with HIV than hepatitis B, though the risks of the latter are increased by a factor of 10.
The notion of magical thinking is a process in which individual mythical frameworks dictate contagion risk, for example with the notion of ‘backward contagion’. People donating blood are afraid the recipients may somehow have an affect.
Also, Nemeroff describes ‘moral-germ conflation’, in which the scientific notion 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.
This is moral-germ conflation at its most manifest, and represents an especially resonant myth that contributes towards the framing of attitudes towards certain patients amongst health care workers .
Conclusion – relevance to education and health care
Thus, myth plays a key role in the construction of HIV. A model to demonstrate this would include the comparative contribution of fact and non-fact (of which myth would be a part) (see slide).
Helman emphasised that before meaningful health interventions can take place, one needs an insight into a person’s culture. Myth is a central component of all cultures, and therefore the key role of health care workers is to ascertain the nature of the prevailing mythical frameworks, and provide an alternative narrative based upon rational truths and sound ethical principles.
In particular, educators and carers:
1. Should not underestimate the power of myth – it plays a significant part of our instinctive response to events
2. Myths should always be examined and where appropriate corrected – the ‘air of ancient wisdom is part of their seductive charm’
3. Carers who find HIV and AIDS a difficult concept should not necessarily be ‘judged’ – the emphasis should move away from attitudes, and assume that: nurses want to care, and need specific knowledge and skills to do so – ie. the provision of new myths
4. Need to consider that ‘ritual boundaries’ are manifestations of prevailing mythical frameworks
5. Carers and educators should always consider the appearance of new myths within any culture or group – eg. that HIV is an ‘older homosexual’s disease’
6. Ritual boundaries established by nurses in care are not simply meaningless repetitions, but rather a manifestation of the prevailing mythical frameworks
Closing quotation:
'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'
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