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
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
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
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.
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
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
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
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
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
- 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
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
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
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
Conclusion relevance to education and health
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 persons 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
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
6. Ritual boundaries established by nurses in care are not simply
meaningless repetitions, but rather a manifestation of the prevailing mythical frameworks
'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'
email me for references and sources