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Abstract

  1. Top of page
  2. Abstract
  3. Life as it is lived: Daniel Kafeero, Kampala (excerpt)
  4. The creative play of place
  5. Suicidal consciousness and the cosmopolitan imagination
  6. Flesh and earth (excerpt)
  7. Walking, identity, and fragments
  8. DEDICATION
  9. TIMETABLE
  10. REFERENCES
  11. Ethnographie, art et mort

A problem facing anthropologists, given the centrality of memory and imagination to all social life, is how to access memory and the imaginary when there is no independent access to consciousness. Moreover, the discipline has ‘largely failed to distinguish itself’ in response to understanding HIV/AIDS (Annual Review of Anthropology30, 2001: 163). In response to these observations I would argue that orthodox approaches are limited and we need to create new forms of collaborative research and representation with regard to understanding experiences of illness. Accordingly this article attempts to bring to life the interior dialogue of persons living with HIV/AIDS through performance by ‘mapping’ the city of Kampala through its emotions and memories rather than buildings and streets.

This article attempts to blur the lines between ethnography, art, and performance in the pursuit of memories about illness and death in contemporary Africa. It uses the notion of ethnography as a particular type of performance to create mnemonic contexts that are ‘already underway’ but would not exist without the intervention of the anthropologist or local informants' willingness to inhabit unaccustomed roles. Establishing these kinds of ‘staged’ encounters within the field potentially opens up different kinds of dialogue between informants and their surroundings; as events happen and dramas unfold, habitual roles are re-cast and the field is ‘made strange’ for locals and anthropologist alike, creating the possibility for different types of intentionality, interaction, and understandings of people's ‘everyday’ thinking and being. The ethnographic context that is created through such performances is one in which memories, presuppositions, social roles, and statuses are continually made explicit and publicly available, thereby raising the possibility that ‘something like a drama’ might emerge ‘from the otherwise smooth surfaces of social life’ (Turner 1982: 9).

Other than by Victor Turner, my attempt at creating this type of fieldwork site is influenced by the work of the experimental theatre company Forced Entertainment1 on urban landscapes and the innovative ethnographic filmmaker Jean Rouch's attempts to access the imaginary. Moreover like these artists' works, the staging of fieldwork performances can be repeated amongst people living in radically different socialcircumstances.2 In this case this means learning to understand the everyday experiences of people living with HIV/AIDS in Kampala, Uganda, a city where approximately 10 per cent of the population are estimated to be living with HIV (UAC 2005).

In the main part of this article I will present excerpts from two of these fieldwork performances, Life as it is lived (2000) and Flesh and earth (2001), each followed by an extended discussion. The pieces try to place Antze and Lambek's work on the anthropology of memory, Tense past (1996), into a performative context by combining it with Michel de Certeau's (1984) observations on ‘walking the city’ and Jean Rouch and Edgar Morin's attempts to access the imaginary through film. Whereas de Certeau uses poetic evocation to gesture towards the existence of places in memory and imagination that are not actually visible to the eye (e.g. a corner shop or bakery that used to be there but is no longer), Rouch and Morin use participatory film-practice and performance. In Rouch and Morin'sChronique d'un été (1960) they filmed a young Jewish woman called Marceline walking around Paris some years after the German occupation. In one scene Marceline walks down Place de la Concord talking to a tape-recorder hidden in her coat until she reaches a deserted building where she looks towards the roof and begins describing the day she was deported to Birkenau. The heavy iron girders in the building's roof remind her of the girders that hung overhead in the train station on the day she and her father waited to be deported to Germany, and she begins describing the moment when she saw her father for the very last time. Here, perception and reality of the city are constituted not by the senses but by a past that no longer exists and an imagined present whose very possibility was cut off by the contingent events of history. This dramatically restates the ongoing tension between the habitual linkage of vision and reality, on the one hand, and the invisible reverie and memorial practices of people's everyday lives, on the other.

The problem facing anthropologists during fieldwork, especially given the centrality of memory, reverie, and imagination to ethnographic practice, is how to bring events from the past into life when there is no independent access to people's consciousness, memories, or the past. This is particularly problematic as memory is involved in each stage in the production of ethnography, from fieldwork to writing up the final text. Johannes Fabian (2003) even goes so far as to suggest that every social interaction or articulation of knowledge is memory-mediated and therefore that ethnography is actually an activity aimed at getting people to remember.

The ethnographer must be able to catch memory ‘at work’ and he must document this by means of ‘texts’. Ordinarily, the ethnographer does not find such texts; they must be made by means of recording communicative-performative events that become protocols when they are transcribed and translated. Thus, work – hard work – is required before memory work can be presented and interpreted (Fabian 2003: 492, italics in original).

Accordingly Life as it is lived and Flesh and earth can be seen as attempts to inscribe the theoretical dilemmas of the anthropology of memory directly into the field, by using people's intentionality and personal history to carry out the memory ‘work’. The pieces use walking and narration to bring the invisible depths of people's past into being by creating suitable ethnographic-mnemonic contexts through which memories of death and disease in Uganda can be re-lived, in situ, against the backdrop of the actual locations where the original events took place. The method involves creating a dialogue between persons whereby a person is asked to walk round his or her neighbourhood while narrating thoughts about life and significant events from the past into a tape-recorder, while a second person interjects, asks questions, and takes photographs. The trajectory of the piece around the city is determined by the first person, but is also influenced by the second person's questions, which elicit memories and trajectories of thought that take the two participants to other parts of the city. At a point agreed on by the two participants the roles are reversed and the narrator takes the interjector/photographer role and vice-versa. By combining Russian Formalism's notions ‘of making strange’ with performance, the aim is to uncover the layers of memory and emotion that have long been sedimented into Kampala's streets, buildings, and bits of old ground. Typically I try to place two people together who share some commonality, for example two HIV+ mothers, who can ask questions of each other that I could not even conceive of and which open up the field in different directions.

By accompanying people on their journeys we actually gain a ‘sense’, if not an understanding, of how a particular type of past – which is at once cultural and idiosyncratic – connects people to prior events and mediates their experiences of their neighbourhood. Memory is produced in the act of performance as the informants make their way round the city and as events and episodes are drawn out of the city's streets, buildings, and market-places and turned into public narratives. What emerges is a tangible, although fragmentary, sense of living in contemporary Africa amidst HIV that opens up the city for the audience, rather than fixing it through explanation, and invites us to inhabit and re-create the city for ourselves.

Thus far I have facilitated ten of these fieldwork performances since 1999 as part of an ongoing project where I am attempting to make a ‘map’ of Kampala through people's emotions and memories rather than its roads and buildings so as to better understand how experiences of illness, disease, and death are inscribed into the urban imagination. The following excerpt from Life as it is lived begins in Daniel Kafeero's living room. Daniel was diagnosed with HIV in 1997. Usually another informant would take the interjector/photographer role so as to create a dialogue between persons, but the sensitive nature of Daniel's intended subject matter meant that I took on this responsibility. A discussion of the implications of this piece will follow before I go on to present excerpts drawn from Flesh and earth, where three HIV+ Ugandan mothers documented and narrated their everyday experiences of walking around their neighbourhood.

Life as it is lived: Daniel Kafeero, Kampala (excerpt)

  1. Top of page
  2. Abstract
  3. Life as it is lived: Daniel Kafeero, Kampala (excerpt)
  4. The creative play of place
  5. Suicidal consciousness and the cosmopolitan imagination
  6. Flesh and earth (excerpt)
  7. Walking, identity, and fragments
  8. DEDICATION
  9. TIMETABLE
  10. REFERENCES
  11. Ethnographie, art et mort
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Figure 1. The beam in the sitting room ‘I was worried I am no longer having a place in this world. Every evening I would wake and would walk from the bedroom to the sitting room ... and think. I tried to hang myself during the children's absence. I put neckties across that beam there in the sitting room but the ties were not strong and when I pulled them they would break. I got some tablets and went to a nearby bush but people kept coming and walking past. And I thought that someone would find me or disturb me and take me to the police before I was dead. And maybe I could be put in prison ...’

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Figure 2. The Crested Towers ‘Then another time I went to see someone who worked at The Crested Towers ... and I thought I could climb the Crested Towers or the highest building and drop. I hated everyone except my five children ... I had no money, no food, no land, no work and I thought we will live just like gorillas in the bush. I felt very sick and weak and so I didn't climb the building but continued walking round Kampala looking for another building to drop from but was not so high. I walked around and around town and people would stare but I did not care because I was in a world of my own.’

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Figure 3. Kampala's central bus park ‘I walked back to the Crested Towers for a second time but there were people everywhere and so I went and found another building. But this time I was determined and climbed up to the top and even there were many people ... so I stayed a very long time waiting for them to go. I waited and waited until someone, a security guard, looked at me suspiciously ... and started walking towards me and so I left and walked around the city more ... but without any decision. I went to the bus park and the first bus I came across, they were shouting ‘Kajansi’ and so I was not thinking of going home to Rubaga but thinking of going to the bush far from home where I would kill myself in some out-of-the-way place where no-one would know me. So I got on the bus for Kajansi and as the bus was leaving I saw someone who in the gloom I thought was my son ... and again started to think of my children and how much I loved them.’

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Figure 4. Daniel in front of the petrol station ‘I bought some petrol for 5000 shillings [about 5 litres worth] and walked to some near pond ... near some water. I poured it over me and had bought three matches ... but when I struck the first one the fire never came, I struck the second one but I was not set alight ... I tried to set myself on fire with the last match. But again it failed. Then I realized that it was diesel and not petrol and it would not light. Then I thought God must have not wanted me to die now. I thought what should I do ... I was covered in diesel ... and mud from the swamp ... and miles from home I thought if someone finds me they will arrest me and suspect me of making a bomb and being a terrorist. I walked back covered in mud and diesel. It was many miles and it took me many hours, when I reached there I took the clothes off and put them in the basin. When I woke up in the morning, the children asked me about the clothes and I said I was helping someone push a car.’

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Figure 5. The spot where the matches wouldn't light ‘It was then that I thought even if I didn't have land and had to live like a gorilla ... let my children walk with me. And then a man I had not done business with before asked me to help build his house ... and I thanked God. From that day I sat down and thought what I am going to do in terms of the suicide is not right ... all this time I've been practising my craft ... I must stay and look after the children ... and after some time I started looking for more work. And when I got money I bought everything necessary to stop me worrying ... rice, materials, tools, etc. I was very much determined to kill myself but there is something that prevents you ... God determines. He is a master of that.’

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The motivations behind this piece derive on Daniel's part from his intention to ‘give a sense of life as it is lived’ and on my part to bring to life the experience of HIV/AIDS and try to understand how it is shaped by the social and physical environment. Daniel's trajectory around the city creates a type of social drama that is not only embedded in personal biography and beliefs but also uses his own agency and intentionality to create the field through processes of self-representation and textualization. All image production in the field is to some extent collaborative (Banks 2001: 119). In the above piece both the visual content and subsequent theoretical direction are collaborative insofar as Daniel's choices of where he was going to visit in the city (in response to my initial question of ‘how would you tell your experience to someone living in my country?’) determine the piece's ethnographic content and also suggest a range of possible theoretical issues for the readership and me to take up. That Daniel begins the piece in his living room, with him narrating to us the location of his first suicide attempt, cannot be regarded as a casual act but must be viewed as an active decision to open up both his home and his experiential ‘interior’ to a wider audience. As we follow him on his journey two areas immediately spring to mind for further theoretical consideration: the creative play of place and suicidal consciousness.

The creative play of place

  1. Top of page
  2. Abstract
  3. Life as it is lived: Daniel Kafeero, Kampala (excerpt)
  4. The creative play of place
  5. Suicidal consciousness and the cosmopolitan imagination
  6. Flesh and earth (excerpt)
  7. Walking, identity, and fragments
  8. DEDICATION
  9. TIMETABLE
  10. REFERENCES
  11. Ethnographie, art et mort

Neighbourhoods, like memories and disease, are contagious; they infiltrate into people's bodies without discrimination and get passed on from generation to generation. Events and experiences, including those shared in cultural memory and others that will be lost for ever when the person dies, emerge out of the past to become intertwined with the present, adding what could be defined as mnemographic depth to experiences of the neighbourhood, that is, a ‘writing of memory’ whereby the sedimented and overlapping layers of knowledge, events, and experiences are written over material surroundings and add mood and character to experiences of the city. Different streets, buildings, and houses possess different mnemographic densities, ranging from the idiosyncratic and transient, such as the grass where Daniel attempted to set himself alight, to more durable aspects, such as his house. This moves us away from the generic category of ‘neighbourhood’, as a static expression of locality and space, towards the idea of the neighbourhood as a dynamic temporal phenomenon that not only mediates but also enables people to actively create their own experience of illness.

When considering Daniel's illness it is vital to understand that the experience of living with HIV/AIDS is not one of ongoing illness or steady decline but involves undulating cycles of illness and recovery that can persist for days, months, or even years, depending on the susceptibilities of the immune-compromised body. Strictly speaking, HIV/AIDS is a syndrome rather than a disease, whereby people develop different infections, illnesses, and diseases that the immune system would normally stave off. This means that the particular illness trajectory of living with HIV/AIDS can vary radically from person to person insofar as one person may be battling pneumonia and another cancer. The cyclical nature of illness and recovery means that the same person will experience different modes of being over the course of their illness. For long periods someone may be perfectly healthy and is not only able to work and carry out their normal life projects but also reflect upon their condition from a state of well-being rather than sickness.3 Thus built into the experience are different qualities of being, self-reflection, and understanding, as well as different opportunities for planning and strategizing for the future. Daniel's piece was itself part of this undulating trajectory and carried out during a time of physical and psychological well-being and therefore needs to be understood as a part of a retrospective and reflective process whereby he looks back upon his suicidal consciousness and the reasons that contributed to his actions (such as seeing no future for himself, not having the tools to work, and being unable to feed his family).

It is not just time and health that engender different qualities of being along the illness journey of HIV/AIDS, but also space (see Irving 2005). Experiences often undergo radical transformation when crossing the threshold that marks the inside and outside of the home. When a person living with HIV leaves their home and enters the neighbourhood they come into contact with a range of social contexts for experiencing illness. Daniel's experience demonstrates the extent to which different creative possibilities of play are embodied within a neighbourhood: it is finite in extension (it can be transcended), has nodal points of mnemonic significance (that gather and disperse memories), edges and margins (which unsettle and bring one back home to the familiar), and bears witness to past personal errors, emotions, and histories (which can be reimagined, reinterpreted, and redefined). The act of walking through the neighbourhood and the memories that are brought to life by walking by a particular road, piece of grass, or building – and the types of mood and experience that this evokes – is suggestive of a creative intentionality that allows people's walking practices to redefine the existential experience of illness in the present. Daniel, for example, would actively create his own disease when walking around Kampala, by avoiding places that elicited painful memories of suicide or by going to sit amongst trees when he felt stressed, thus illustrating the extent to which illness and disease are actively created rather than passively experienced.

Such choices are made on an hourly, even minute-by-minute, basis and continually redefine the meaning and experience of living with HIV/AIDS in everyday life. The radically different moods that these choices enable graphically demonstrate what is at stake by ‘being-here’ rather than ‘being-there’ (see Casey 1993: 47-70). The cultural and emotional resonance of being-here, for example at a traditional shrine, AIDS support group, or one of Kampala's crowded Pentecostal healing services, facilitates modes of being that are quite different from being-there in the bus park, passing the Crested Towers where Daniel went to ‘drop’, or the field where he tried to set light to himself. The interplay of body and place repeatedly sensitizes people to the fact of being right here, right now with this particular illness in this body, living in this situation, in relation to these things and people, whereas if life had dealt a different hand those same neighbourhoods would be imbued with radically different emotions, meanings, and possibilities. This suggests that while it is impossible to completely remove the experience from the contours of one's surroundings there is nothing intrinsic in the environment that presses itself on the person and therefore one cannot conflate or read personal experience from the environment.

The petrol station, bus park, and buildings in Daniel's piece encompass a range of different mnemonic consequences and emotional registers for himself and others. However, whenever Daniel would cycle past that particular petrol station in Kampala's suburbs, it was not to purposefully rekindle the events and emotions of that extraordinary night when he tried to set fire to himself but to visit his sister and her family, who live two miles further on. In other words, Daniel's everyday movements around the neighbourhood were primarily orientated not towards the past, but towards the future in the form of social responsibilities and commitments, recalling Merleau-Ponty'snotion that ‘reality’ does not fully belong to the present but always lies ‘further on’ (1968: 401).4

Suicidal consciousness and the cosmopolitan imagination

  1. Top of page
  2. Abstract
  3. Life as it is lived: Daniel Kafeero, Kampala (excerpt)
  4. The creative play of place
  5. Suicidal consciousness and the cosmopolitan imagination
  6. Flesh and earth (excerpt)
  7. Walking, identity, and fragments
  8. DEDICATION
  9. TIMETABLE
  10. REFERENCES
  11. Ethnographie, art et mort

By documenting his suicidal consciousness, Daniel wanted to reach out to other people who were living with the disease and felt the way he did by giving a sense of, in his words, ‘life as it is lived’. In Uganda, suicide breaks one of the most fundamental contracts a person can have, namely between the person and his or her local community. It was the community that bestowed ‘life’ upon the individual when they were born, nurtured them and turned them into a social being, and therefore a person's life is not his or hers to destroy. If a person commits suicide, they will most likely be denied a funeral or any associated rites and will not be taken to the family's ancestral burial grounds or accorded the status of a jajja (ancestor). Instead they will be buried on common ground, often near where the act took place and away from others in their lineage, at which point they are effectively stripped of their personhood and are destined to roam as a lonely spirit in the afterlife. Moreover, suicide is seen not just as an act against the community but as an act against God, and accordingly thoughts and feelings of suicide are rarely articulated or discussed and only in very rare circumstances is suicide actually attempted.

Daniel felt distanced from his more immediate community, wherein suicide was seen as non-human. It was a distance that was not simply cultural but existential insofar as it also invoked the distance between thought and action which Daniel attempted to cross on the day he woke up and made his suicide attempts. By attempting to hang himself, Daniel employed one of the most common methods in Uganda and Eastern Africa (see Bohannan 1960), but in his failure he then sought recourse to other types of action that were in part suggested by the buildings that surrounded him, namely the Crested Towers and the petrol station. In all three attempts we see how it did not feel appropriate for Daniel to commit suicide surrounded by other people, and how he tried to extract himself from the social as a precursor to what we might regard as the ultimate act of de-socialization, suicide. This tension became explicit when he was at the top of the Crested Towers waiting for people to go before he jumped. Here it seems that Daniel did not want to commit suicide in ‘public’ and instead sought a partial de-socialization whereby he was not in the company of others before jumping. In the end Daniel was unwilling to give up that part of his being that continued to claim him as a member of the community and he slowly descended from the towers by the stairs. After his third and final attempt Daniel was reclaimed by the ties to his family, but also by the failure of the third match on his third attempt, which he took to be a sign from God, thereby re-entering the community's moral framework.

Suicide, like other social actions, possesses layers of historical and cultural depth that link people's present dilemmas to specific religious, cultural, legal, and political traditions of meaning, power, and influence, which differentiate suicidal thoughts among HIV+ people in Uganda from their counterparts elsewhere in the world. For example, in many Western countries, thoughts of suicide are more likely to be seen as an understandable, normal, and even ‘natural’ response to the impending bodily decline and degrading circumstances of terminal illness.5 This not only has the effect of locating terminally ill Westerners in a communitas of persons who potentially have suicidal thoughts and identify with certain dilemmas concerning the ethical and moral implications of carrying out the act, but also enables people to articulate and negotiate their thoughts and feelings from an established position within the ongoing public discourse vis-à-vis the ethics of suicide, euthanasia, or assisted suicide. By contrast, in Uganda, even when persons are terminally ill, thoughts of suicide are widely understood as abnormal and unnatural. Persons are unable to imagine their experience as part of a shared, common dilemma and largely remain isolated, alone, and anomalous with regard to their thoughts and concerns. The social bonds of an African community, so often seen as a source of strength and support, are unable to contain suicidal thoughts and place the person outside of society insofar as they are unable to share or talk about their experience with other persons.

These contrasting ‘social narratives of suicide’ present two very different possibilities for HIV+ people to understand and organize suicidal thoughts and feelings. As such they are not merely a way of establishing the meaning of suicide but are fundamentally constitutive of people's embodied emotions and experiences, for only through an excessive allegiance to referential models of language and representation is it possible to understand narratives and discourse as simply a way of representing experience (Kleinman, Das & Lock 1997: xiv). Social, cultural, religious, and moral categories are inseparable from people's embodied experiences, emotions, and senses of being. While these are partially constitutive of the experience and suggest a moral framework of interpretation, they are not static and therefore allow certain creative possibilities for re-negotiating, transforming, and rewriting the meaning of suicide, for ‘while experience is shaped by representations, it can also push against these representations – resisting language, bending it in new directions, and distorting the received ways of expressing distress and desperation so that these distortions themselves transform the experience of suffering’ (Kleinman et al. 1997: xiv).

The transformative processes of narrative and expression can be detected in the history of this piece. Its origins lie in the long conversations I had with Daniel the previous year when he would ask me about the experiences of people living with HIV/AIDS in Europe and North America. He was particularly interested in identifying the commonalities and discrepancies of experience that existed between persons living with HIV in different parts of the world. A noticeable feature of the Euro-American experience of HIV/AIDS is suicidal feelings, which were integral to many of the life histories I shared with Daniel. After hearing people's stories Daniel said that he too ‘had felt those things’ but was completely unaware of the fact that other HIV+ people possessed suicidal thoughts. Given the strong social disposition to identify with the group in Uganda, Daniel was relieved to find out he was not alone and drew strength from the knowledge that he was not isolated or abnormal, even if he had never met the others and they lived many thousands of miles away. Daniel then told me in great detail about the day when he when he attempted suicide, which was the basis for the piece presented here.

Our conversations took place outside the normative social and family structures that typically govern social discourse in Uganda. By taking an interest in my informants with HIV/AIDS in Europe and America, Daniel began to change his perceptions of himself and his actions, and made the transition from a person with an overwhelming sense of isolation, abnormality, and difference to someone who found a way of being-with-others in absentia. Discovering that he was not alone helped dissipate Daniel's sense of isolation and abnormality and allowed him to understand himself as part of a wider cosmopolitan experience of HIV/AIDS. Consequently he consciously used his journey around the city to articulate the level of separation and distress he previously felt so that other HIV+ persons who felt suicidal, abnormal, and isolated could understand themselves through a different and shared moral frame. In Uganda, suicidal feelings do not have the status of a shared ‘public secret’, in the sense of Taussig (1999), but are more commonly idiosyncratically held by isolated persons who are unaware of other people's dilemmas. In my ongoing attempts to ‘map’ the city of Kampala through emotions, memories, and illness, two other people have thus far raised the issue of suicide and the subject has come up in my conversations among HIV+ Ugandans who were able to use Daniel's experience to discuss things that they could not with friends and family thus signifying an underlying but unarticulated level of anxiety.

At the end of the piece Daniel chooses life and says ‘I must stay and look after the children’. Sadly, he died from HIV-related tuberculosis shortly after we staged this piece. His presence, however, remains. His experiences cling to the city: ‘this is where Kafeero used to live, that's where he used to cut wood and sell charcoal, and those are his children’, the neighbours say. In death Daniel's presence within the neighbourhood is continually signified by his half-finished roof repairs, neighbours having to walk further to buy their charcoal, and an unused bicycle that sits outside his house. Neighbours walk past Daniel's house and experience the strange dissonance of being reminded that he, Daniel, a carpenter, charcoal-seller and long-term neighbour, is no longer there. The missing charcoal, the hole in the roof, the unused work-bench, and the bicycle's empty saddle are enduring absences that form a type of presence through absence (Sartre 1996: 112, 277-80) and the house is overlaid by a strange mix of presence and absence attested to by his neighbours' comments that ‘he is there but not there’. Even in death, Daniel, like his two most immediate neighbours, who also passed away from HIV/AIDS, continues to inhabit the neighbourhood. However, their deathly, contagious presence does not extend indefinitely throughout the city, for incorporeal bodies like neighbourhoods are also finite in extension, and strategies of confinement keep deathliness at bay (see Parkin 1991: 105-35).

Flesh and earth (excerpt)

  1. Top of page
  2. Abstract
  3. Life as it is lived: Daniel Kafeero, Kampala (excerpt)
  4. The creative play of place
  5. Suicidal consciousness and the cosmopolitan imagination
  6. Flesh and earth (excerpt)
  7. Walking, identity, and fragments
  8. DEDICATION
  9. TIMETABLE
  10. REFERENCES
  11. Ethnographie, art et mort

In this piece I asked three HIV+ women, Nalongo Kaweesa, Rebecca Nabakesse, and Yudaya Nazziwa, to photograph and narrate their city with a camera and tape-recorder, with the aim of providing a sense of their everyday experiences and circumstances to people living in other countries. The use of cameras and video for self-representation is now becoming a standard anthropological research practice (Banks 2001: 118-28). Recent research has explicitly addressed the potential of visual material in HIV/AIDS not simply as a means of documentation or public information but as a way of involving socially inclusive collaborations with moral agents who become involved shaping the story that is being told. For example the STEPS for the Future Project, a collection of thirty-six films made across seven Southern African countries, with varying degrees of participation and collaboration, interweaves individual stories of living with HIV/AIDS to ‘provide a forum for those affected by HIV to discuss, debate and exchange information and opinions at an individual and community level’ (Chislett et al. 2003: 9). Such collaborative projects, using visual and other media, allow different possibilities for persons living with HIV/AIDS to establish a presence amidst academic literature, art galleries, universities, and other contexts. Taking seriously the role of informants in shaping anthropological debate, and recognizing the capacity for people to be their own theorists, not only begins to displace existing power relations but also opens up new dialogues. The resulting exhibitions, films, and photographs influence the way people with HIV/AIDS understand themselves and how other persons interact and behave towards persons with the syndrome.

Once let loose in the world, such attempts will follow their own path. In this case the potency of HIV/AIDS became all too apparent when Rebecca became seriously sick and bed-bound and so was unable to walk. Then the tape-recorder broke and so Yudaya and Nalongo had to write rather than record their comments. Lastly, it is not possible to use any of the photographs (except one); not because of the women's unfamiliarity with cameras, as their badly framed, overexposed, out-of-focus shots tell their own moving story, but because of the subject matter they chose to document. The idea of ‘informed consent’ in anthropology is often tenuous and here I could not be certain that the people who were photographed were fully cognizant of some of the ways their images might be used or of their intended audiences. Thus instead of their pictures I show their absence and have provided the comments that Nalongo and Yudaya wrote to accompany the images they took.

‘The mother of these children died from AIDS in 1998. There were four children but unfortunately one of these children died of AIDS when he was 6. The others now live with their father’.

‘This is a photograph of two children called “David” and “Michael”. Their mother died of AIDS some time ago and the father died of AIDS in the year 2000. They took the collection money they were given after their father's death and bought jackets from the market, which they are now walking around selling. They started doing that just to get money for food as they have had to stop school. They are very friendly to my children because of the same problem, HIV’.

‘This is my friend called “Mary”. She is also a widow. Before her husband's death I talked to their family and said that I had tested HIV+. The family was one husband and three wives and after I said about testing they all kept quiet and looked at me. I remember the husband then thanked me for being so open. Two weeks later Mary came to my home saying she had tested HIV+. Now she comes to me and we share our challenges. She has three children’.

‘This is a girl aged 17. She was raped and now she is living with HIV/AIDS. She is an orphan and lives with her grandmother. She makes doormats to sell in order to get some little money for living. Next to her are two sisters. They get money from selling mivumba[old clothes] from house to house. Both lost their husbands. One of them has two children, one of her children is HIV+. The other one has one child and they are both HIV+’.

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Figure 6. As stated, Rebecca Nabakesse became too sick to participate, so Yudaya and Nalongo turned the camera on their friend and made her suffering the subject of their photograph. The photograph of Rebecca, as she lay close to death, is the only one where I knew the subject had properly consented for her image to be shown to the wider world. However, as is plain to see, things conspired against us again and the photograph did not turn out that well as the camera leaked light. ‘Rebecca used to smile but this time she is down and there is no smile at all. We always expect that this time will come. When we saw her we became sympathetic and stared thinking about the time when we were like her and about our children. That was late December and early January. But the good thing is that they have now detected TB in Rebecca and I am sure that if she starts on the same TB drug she will be okay, because even me I was like her’.

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Walking, identity, and fragments

  1. Top of page
  2. Abstract
  3. Life as it is lived: Daniel Kafeero, Kampala (excerpt)
  4. The creative play of place
  5. Suicidal consciousness and the cosmopolitan imagination
  6. Flesh and earth (excerpt)
  7. Walking, identity, and fragments
  8. DEDICATION
  9. TIMETABLE
  10. REFERENCES
  11. Ethnographie, art et mort

By walking around their neighbourhood Yudaya and Nalongo show us a particular history of life in contemporary Africa, as told through the continual and incessant severing of familial relationships – between parents and children, husbands and wives, brothers and sisters, friends and friends – that is occurring on such a massive scale throughout the continent. The absence of the actual images in their piece is a metaphor for the absence of value accorded to African life and the absence of any real commitment by the international community or multinational drug companies to effect any change.6 Yudaya and Nalongo's act of walking around their neighbourhood can be seen as re-inscribing not only their attachment to the land but also their identity as ‘Africans’, insofar as identity continues to be determined by a contingent but powerful politico-ontological identification of people with the land they live upon. That Rebecca was unable to walk and thereby unable to re-signify her connection to the land alongside Yudaya and Nalongo can be understood as a precursor to her impending detachment from life. The settled expectation of her mortality, which is here hidden beneath Yudaya's narration hoping for her recovery, should not obscure the fact that Rebecca's was a life that could have been saved were it not for the global political consensus that determines the value of persons' lives in relation to the continent upon which they live and die.

There are currently estimated to be more than 25 million persons living with HIV/AIDS in Africa, including a million in Uganda alone (UNAIDS 2006). For every person infected, Yudaya and Nalongo's narrations show us how there are tens, even hundreds, of others, including friends, family, acquaintances, and neighbours, whose lives are affected on a daily basis, thereby forming a massive population of infected and affected persons that crosses genders, religions, and cultures, and constitutes a large proportion of the entire population of the continent. Yet, despite the widespread literature on HIV/AIDS in Africa and elsewhere, when future historians look back on our age they might learn little about the everyday life and challenge of living with, and dying from, HIV/AIDS. For a literature concerning a blood-borne disease, much of it is surprisingly bloodless; the person's thinking, emotions, and dilemmas, their very flesh and being, are reduced to statistics, the biological body or social structures. Surprisingly few people inhabit these texts, meaning that unfortunately I also have to agree with Parker that anthropology, like other social sciences, has ‘largely failed to distinguish itself’ in ‘response to the HIV/AIDS epidemics’ (2001: 163). Given anthropology's weak contribution to understanding HIV/AIDS, especially as an embodied social experience, I would argue that orthodox approaches can only tell part of the story and therefore we need to create new and alternative possibilities (i) for forming close collaborations with infected and affected people in order to find other ways of ‘accessing the imaginary’, researching and representing people's experiences; (ii) for grounding personal narrative within the social sciences without homogenizing or marginalizing people's experiences, thoughts, and emotions; and (iii) for challenging dominant discourses and conventions of representation with regard to understandings of HIV/AIDS and other terminal illnesses.

This article involves the usual disciplinary conventions whereby persons are transformed into ‘locals’, ‘informants’, and thereafter into ‘collaborative co-researchers’. In response to people's willingness to make this journey – not to mention the fluidity of identity and self-reflexivity that it demonstrates – I have attempted to avoid taking the next step, namely the conversion of people's experiences into the static types and social categories that are often required in conventional social scientific and anthropological analyses. This follows Michael Jackson's (1996: 7) criticism of the default position of anthropology, whereby people's lived experiences are purported to be ‘explained’ in terms of pre-supposed social structures and theories. Indeed for Jackson it is vital not to accord foundational status to any particular theoretical perspective but to be cognizant of ‘the plurality of all experienced facts, regardless of how they are conceived and classified – conjunctive and disjunctive, fixed and fluid, social and personal, theoretical and practical, subjective and objective, mental and physical, real and illusory’ (1996: 7, italics in original).

The blurring of ethnography and performance as people journey around Kampala creates a space, albeit fragmentary, unstable, and provisional, through which the city's unwritten history is remembered and brought into the present. This not only offers the possibility for understanding of people's current experiences of living with HIV/AIDS in contemporary African societies, but also opens up a theoretical discussion about how sense, memory, and disease are related to the social, political, and material environment. Moreover, the aim in placing informants ‘centre-stage’ is to dramatize the relationship between people, their past, and their experience of the city rather than to (re)cover, reify, or fossilize it through the slow murder of context. This involves informants in a process of poesis rather than mimesis as persons are not reproducing the past but actively performing and re-interpreting it in light of subsequent life events and their current situation. Thus, the art on display here is not photographic but performative in that it involves a poetic re-engagement with the city as seen through the frame of illness rather than that of a camera.

The poesis and intentionality that Daniel, Nalongo, Yudaya, and Rebecca bring to this article by selecting events hidden in the city's history make visible the experience of living through Uganda's HIV/AIDS epidemic in an age when Africans are routinely denied anti-retroviral medications through global politics, poverty, and ethnicity. As such, each photograph – and intertwined narrative – marks a particular meeting point of self and world; a place wherein idiosyncratic personal acts of remembering, the surrounding city and the wider social, economic, and political history of HIV/AIDS intertwine and merge into one another. When taken as a whole, people's photographs, narratives, and journeys around the city represent a collective decision to open up a field of inquiry about events in Kampala's recent past and pose a series of questions about HIV's ongoing presence in African society. This involved them in hundreds of decisions about what events to represent and what stories to tell, thereby placing ethnography in the subjunctive mode and exposing the instability not just of memory but of people's circumstances. The combination of word, movement, and image is therefore an ideal medium as it involves a collusion with the contingency of the world whereby something is selected out of the ‘vast disorder of objects’ and what is documented only ever occurs once (Barthes 2000: 6). Indeed ‘of all the objects in the world’– asks Barthes –‘why choose (why photograph) this object, this moment, rather than some other?’ (2000: 6, brackets in original). By making choices and rendering certain memories public, Daniel, Yudaya, Nalongo, and Rebecca ‘fill in’ what is not immediately visible to the reader and anthropologist. A ‘sense’ of how HIV/AIDS is located within contemporary African societies slowly emerges and opens up people's lives and neighbourhoods rather than fixing them through explanation, inviting us to re-create the experience for ourselves and fill in the various gaps between the informants' words and photographs.

It is the recognition of people's circumstances, including all those denied access to antiretroviral medications through their ethnicity and/or economic position, which is the necessary first step towards establishing rights and effecting change. This is a matter of being made aware not simply of the existence of people's suffering but also of its conditionality and contingency. By making us witness to people's circumstances and suffering, Yudaya, Nalongo, Rebecca, and Daniel simultaneously transcend and exaggerate the social and cultural borders between persons living in different parts of the world. Here, following Levinas's (1996) elaborated sense of the ethical responsibility we have to towards other persons, I would like to suggest that (like national borders and borders of identity) these borders can also be a rich source for social change and rights rather than simply being seen as barriers to interaction and understanding. Witnessing difference creates a type of knowledge and appreciation that cannot be defined in terms of objective truth or shared, hermeneutic understanding but nevertheless offers a basis for engaging with and learning about the experiences of other people without reducing them to numbers or their disease. People's struggle to walk and produce art that simultaneously documents and reclaims their humanity in the face of disease, decline, and death produces a recognition of our shared humanity and reminds us of the radical differences that exist between persons. The sharing of life that occurs during such moments, I would argue, is the first step towards recognizing and securing the rights of others.

By representing their experience, Daniel, Yudaya, Nalongo, and Rebecca each reveal a different facet of their lives. This is suggestive not only of how visual collaborations are a way of articulating ‘submerged realities’ (Edwards in Pink 2004: 1), but also of how such realities are themselves dependent upon movement. In other words, visual collaborations, including those using photography, are embodied activities that involve narration, whole-body movement, touch, and the negotiation of various social contexts. As such they are more properly regarded as types of performative ethnography rather than simply ‘visual’ techniques. That Rebecca was unable to walk with her friends around the city painfully illustrates that photography is a bodily rather than visual activity that requires a certain level of bodily integrity. However, her restricted participation also opened up another possibility whereby the three women decided to turn the camera on one of themselves and document Rebecca's suffering. And so Rebecca Nabakesse, a widow of HIV and mother of one, lays there turned to the camera and facing life and the world rather than the death that would come soon after.

Taken as a whole, the fragments of life presented in these pieces draw attention to different modes of being-in-place and how these are mediated by illness, disease, and misfortune. The intentionality in display in each piece mirrors what is at stake in people's everyday life when making simple choices such as walking down one street and avoiding another. This active redefinition of place puts the body back into experience and reinforces Merleau-Ponty's (1968: 242) suggestion that ‘being’ is also a type of place. Thus, like the neighbourhood, being can become a strange and alienated place, requiring it to be re-inhabited and made familiar after disruptions of illness, disease, and death. This reminds us that neither people nor neighbourhoods exist in ‘space’, for ‘space’ is non-local and non-particular in character, an abstraction of infinite extension (Casey 1993: 3-21). Indeed the inhumanity of global politics, like the homogeneity of space, is almost wholly opposed to the specificity of bodies and neighbourhoods with their odd angles, nuances, non-uniform surfaces, memories, histories, and peculiar characteristics moulded to fit the human form. This distinction/opposition can most readily be understood as the difference between the infinite spatial extension of mind and the finitude of the diseased body. Space is pure and untainted, a product of the mind's capacity to transcend time and distance. By contrast the concept of place is contagious and gloriously finite, a product of the body, its limitations, imperfections, and potentiality (Casey 1993: 3-21). Place remains resolutely impure, a realm for all types of bodies to mix and congregate: healthy and diseased, gay and straight, sexual and asexual, men and women, children and adults, the living and dying. And perhaps it need not be added that nowhere is more open to this mixture of place and fleshy, corporeal mass than urban neighbourhoods.

NOTES
  • First and foremost my heartfelt thanks must go to Daniel, Yudaya, Nalongo, and Rebecca, without whom this article would not have been possible. Thanks also to Hospice Uganda and the National Association of Women Living with AIDS in Uganda for their co-operation and support; the Economic and Social Research Council for funding the original research and my post-doctoral scholarship; the School of Oriental and African Studies for an additional fieldwork award that funded Flesh and earth. I would also like to thank Paul Henley, Karen Lane, Benedetta Rossi, and three anonymous reviewers for some extremely useful comments. In particular I would like to thank Nigel Rapport and the Centre of Cosmopolitan Studies at Concordia University for offering a stimulating environment within which to finalize the article into its present form. An earlier version of this article, which included excerpts from the taped narrations, was presented at the Tate Modern, London, in September 2003. This was filmed and can be seen/heard at http://www.tate.org.uk/onlineevents/archive/fieldworks/mcaulay.htm.

  • 1

    Forced Entertainment are a Sheffield-based theatre company (1984 to present). Their works on the urban landscape have included coach tours of Sheffield and Rotterdam that wove together disparate locations around the city. Imaginary events and everyday dramas that may or may not have taken place were narrated, thus forging a text and connecting disparate events and different parts of the city.

  • 2

    For example, I have also used this technique to stage ‘fieldwork performances’ among gay HIV+ men in New York and Arabic women migrants in Montreal.

  • 3

    The public perception of HIV/AIDS is a source of endless frustration for persons living with the syndrome insofar as people are placed in a sick role and are denied the opportunity to be ‘healthy’ by others. People often encounter discrimination and stigma – for example, when seeking work, in their parental role, and so forth – while being perfectly capable to perform their various responsibilities. It is to counter this perception and its discriminatory effects that most people take up the self-reference of ‘Persons living with AIDS’ rather than ‘AIDS sufferers’ or other such connotations of disease and inability that reify one aspect of being rather than others. For many people the experience is not a static one of ongoing sickness but one of differentiation, including the possibility of extended periods of physical well-being.

  • 4

    The concept of the future is doubly important, for not only are Africans frequently characterized as people who have little concept of the future – for example, as being understood as ‘situationally’ rather than ‘problem’-orientated or resigned to fate and God's will – but also persons with HIV/AIDS are continually denied a future by the society in which they live and the wider political economy that concentrates on prevention programmes rather than the millions of persons already living with the disease.

  • 5

    It is worth noting here that among HIV+ persons in North America the risk of suicide is twenty times greater than for the general population (Kastenbaum 2003).

  • 6

    The absence of images also revisits the ongoing debate concerning the ethical difference, or otherwise, between written descriptions of people and photographic images (see Banks 2001: 128-33).

REFERENCES

  1. Top of page
  2. Abstract
  3. Life as it is lived: Daniel Kafeero, Kampala (excerpt)
  4. The creative play of place
  5. Suicidal consciousness and the cosmopolitan imagination
  6. Flesh and earth (excerpt)
  7. Walking, identity, and fragments
  8. DEDICATION
  9. TIMETABLE
  10. REFERENCES
  11. Ethnographie, art et mort
  • Antze, P. & M. Lambek (eds) 1996. Tense past: cultural essays in trauma and memory. New York: Routledge.
  • Banks, M. 2001. Visual methods in social research. London: Sage.
  • Barthes, R. 2000. Camera lucida (trans. R.Howard). London: Vintage.
  • Bohannan, P. (ed.) (1960) African homicide and suicide. Princeton: University Press.
  • Casey, E. 1993. Getting back into place: toward a new understanding of the place-world. Bloomington: University of Indiana Press.
  • Chislett, S. with L. Dworkin, A. Ntsane, T. Armien, S. Levine, M. Cuff & D. Edkins 2003. Steps for the future: an introduction by the STEPS Project Staff. Visual Anthropology Review Special Double Issue (ed. P.Biella) 19 : 1-2.
  • De Certeau, M. 1984. The practice of everyday life (trans. S.F.Rendall). Berkeley: University of California Press.
  • Fabian, J. 2003. Forgetful remembering: a colonial life in the Congo. Africa 73, 489-504.
  • Irving, A. 2005. Life made strange: an essay on the reinhabitation of bodies and landscapes. In Qualities of time (eds) W.James & D.Mills, 317-31. (ASA Monograph 41.) Oxford: Berg.
  • Jackson, M. 1996. Introduction: phenomenology, radical empiricism and anthropological critique. In Things as they are: new directions in phenomenological anthropology (ed.) M.Jackson, 1-50. Bloomington: University of Indiana Press.
  • Kastenbaum, R. 2003. Death, society and human experience. (Fifth edition). Boston: Pearson.
  • Kleinman, A., V. Das & M. Lock 1997. Introduction. In Social suffering (eds) A.Kleinman, V.Das & M.Lock, ix-xxvii. Berkeley: University of California Press.
  • Levinas, E. 1996. The Levinas reader (ed. S.Hand). Oxford: Blackwell.
  • Merleau-Ponty, M. 1968. The visible and the invisible (trans. A.Lingis). Evanston, Ill.: Northwestern University Press.
  • Parker, R. 2001. Sexuality, culture and power. Annual Review of Anthropology 30, 163-79.
  • Parkin, D. 1991. Sacred void: spatial images of work and ritual among the Giriama of Kenya. Cambridge: University Press.
  • Pink, S. 2004. Introduction: situating visual research. In Working images: visual research and representation in ethnography (eds) S.Pink, L.Kurti & A.Afonso, 1-13. London: Routledge.
  • Rouch, J. & E. Morin (directors) 1960. Chronique d'un été.
  • Sartre, J.-P. 1996. Being and nothingness (trans. H.E.Barnes). New York: Routledge.
  • Taussig, M. 1999. Defacement. Stanford: University Press.
  • Turner, V. 1982. From ritual to theatre: the seriousness of human play. New York: Performing Arts Journal Publications.
  • Uganda Aids Commission (UAC) 2005. Annual report. Kampala.
  • UNAIDS 2006. Annual report on the global AIDS epidemic. Geneva.

Ethnographie, art et mort

  1. Top of page
  2. Abstract
  3. Life as it is lived: Daniel Kafeero, Kampala (excerpt)
  4. The creative play of place
  5. Suicidal consciousness and the cosmopolitan imagination
  6. Flesh and earth (excerpt)
  7. Walking, identity, and fragments
  8. DEDICATION
  9. TIMETABLE
  10. REFERENCES
  11. Ethnographie, art et mort

Résumé

Compte tenu de la place centrale qu'occupent la mémoire et l'imaginaire dans toute la vie sociale, les anthropologues se trouvent face au problème de savoir comment accéder à la mémoire et à l'imaginaire lorsqu'il n'y a pas d'accès indépendant à la conscience. Par ailleurs, la discipline « a échouéà se distinguer » dans l’approche de la compréhension du VIH et du SIDA (Annual Review of Anthropology30, 2001: 163). En réponse à ces observations, je dirais que les approches orthodoxes sont limitées et qu'il faut créer de nouvelles formes de recherche collaborative et de représentation autour de la compréhension des expériences de la maladie. Cet article tente donc de faire vivre le dialogue intérieur des personnes vivant avec le VIH par la performance, en traçant une « carte » de la ville de Kampala au fil de ses émotions et de ses souvenirs, et non de ses bâtiments et de ses rues.

Andrew Irving's research explores how the world appears to people close to death, particularly in relation to the aesthetic appreciation of time, existence, and otherness. It involves detailed ethnographic comparisons of living with HIV/AIDS within different cultural contexts so as to understand how culture, religion, and gender mediate people's experiences of illness, death, and dying.