Abstracts 24 ( 2 )
“We are just afraid of what others may say about us.” Maintaining honour and respect in processes of disclosure in Bamako, Mali
With the widespread availability of antiretroviral therapies in Mali since 2004, the physical aspects of HIV/AIDS have become less visible. Although the immediate danger of death no longer looms for patients, those on treatment must now live with a carefully guarded secret: their HIV-positive status. While most prefer to keep their status secret, a combination of medical advice, legal regulations and moral norms encourage disclosure. For most, decisions about to whom to disclose and how to confide their secret are a complex and risky matter in which notions of trust play a key role. Central to the anxiety around disclosure is a desire to preserve positive social recognition, conceptualized as the good name (tògò nyuman). The good name is of crucial importance for the maintenance of agency, and its loss is equivalent to isolation and exclusion, that is, to social death. This article explores the practical and reflective efforts taken by people living with HIV to balance the risks of disclosure with the desire to maintain honour and respect in their everyday lives. On the basis of two case studies taken from long-term ethnographic research, I demonstrate the dynamic aspects involved in dealing with disclosure, and illustrate various ways of communicating about the disease in different settings.
[HIV/AIDS, antiretroviral therapy (ARV), disclosure, honour, trust, Mali]
The importance of the autobiographic self during research among wartime children in northern Uganda
the person of the researcher or evidence of her actual presence or engagement in research is typically hidden in most scientific studies, many anthropological studies included. my doctoral study involving the assessment of wartime children’s illness experiences in northern uganda forced me to confront painful aspects of my own childhood. as i met with school children and their kin, i engaged with their childhoods in an intersubjective space in which i examined my own childhood as it has shaped my adult life. my resulting struggles in the field and in thesis writing have been partly discussed elsewhere but, i have never articulated these experiences as a fundamental aspect of my knowledge development. up to now it has been unimaginable to think of exploring something which i would rather leave to rest, especially since the memories are still painful and generate distress. in this paper, i intend to explore the fundamental importance of my autobiography as an ethnographic tool for my research.hh
[autoethnography, poverty, suffering, children, autobiography, intersubjectivity, Uganda]
The power of shit: Reflections on Community Led Total Sanitation in Nepal
‘Shit’ is a highly sensitive, almost taboo topic across all cultures. Circumventing this sensitivity has contributed to the failure of many programmes aiming to prevent the practice of Open Defecation (OD). OD is the practice of defecating in the open, be it common or private spaces and may include fields, forests, bushes or bodies of water. It is believed that it is a cause of diarrhoeal diseases, which are the leading cause of morbidity and mortality among children in the world. In 2010, an estimated 2.5 billion people in the world had no access to adequate sanitation and approximately 1.5 million children per year die from diarrheal diseases. Additionally, loss of earnings, because of ill health or needing to care for others, has considerable impact on the socio-economic situation of millions of people. Disappointingly, evidence suggests that programmes aiming to prevent OD have limited success. The Community-Led Total Sanitation (CLTS) approach is, however, more successful. This article asserts that this can be attributed to the emphasis placed on the ‘power of shit’ and more significantly the disciplinary action of the ‘disgust’ it elicits. The latter aspect is permissible as it is being orchestrated by people who are well acquainted with the targeted communities. To reflect on the mechanics at work in CLTS, data gathered during a visit to Nepal, which served as a case study, as well as various theories of disgust are used. The theories presented in this paper illustrate the contradictory nature of disgust, and address both the tension and the consensus between the various explanations. This reflection is based on the premise that the power inherent in disgust is a result of the web that exists to connect its cognitive, visceral and social aspects. CLTS has realized this and is capturing this power as a strategy to discourage and prevent the practice of OD and eventually reduce morbidity and mortality.
[open defecation, disgust, shit, sensitivity, local views, sanitation, Nepal]
AMBER BARTELS & GHARIBA LOUKILI
Seeing with new eyes: Field research and self-analysis in a clinic for treatment of eating disorders
In the Netherlands, consanguine couples have opportunities to calculate the risks of having a child with a genetic disease. Whilst recognising the fact that some Muslim consanguine couples may be reluctant to be tested because of their religious views, we nevertheless want to offer them this option. In this article, the opinions of Muslim theologians, spiritual counsellors, Imams and physicians in the Netherlands on the possibility of consanguine couples taking a preconceptional test are discussed. From an Islamic point of view, the practice of preconceptional testing cannot be prohibited; on the contrary, our respondents argue that, from an Islamic religious perspective, preconceptional testing is a positive development that can only be encouraged. Using information from Islamic scriptures like the Qur’an, the Hadith, and the opinions espoused by Islamic scholars, the respondents explain why Islam and preconceptional testing go hand-in-hand. The respondents do, however, highlight the dangers of overlooking the ethical consequences that promoting tests such as these might have, and expect some Muslims to be against testing because of their religious (and other) beliefs.
[preconceptional testing, Islam, consanguine marriage, medical ethics, VERWANT]
“Because it is our centre.” A Chilean case study of intercultural healthcare
Globalisation and modernisation in the field of health care have led to the worldwide structural superiority of biomedicine. In the last three decades concerns have arisen about the loss of traditional medicine. However, local cultures persist in times of globalisation through articulations between local and global forces. Intercultural health care is an explicit example hereof. This article analyses why patients make use of intercultural health care. It is based on a case study, which used semi-structured, in-depth interviews with patients of the Intercultural Health Centre ‘Boroa Filulawen’ located in Southern Chile. The most significant function of this Intercultural Health Centre is that it provides patients with culturally accessible health care in the proximity of their homes. Patients are proud of their centre since it expresses Mapuche culture and Mapuche medicine. The implementation of intercultural health care is an attempt to improve the state of health of the Mapuche people and offers them the possibility to be treated along the lines of their traditional cosmology. The centre under study stimulates power sharing between medical logics and expresses political recognition of indigenous knowledge. Intercultural health care centres are examples of glocalisation.
[intercultural health care, Chile, Mapuche cosmovision, cultural accessibility, medical pluralism, ethnic minorities]
De ‘S’ factor: Chronische pijnervaringen bij zeven Turkse Nederlanders
Dit artikel beschrijft aan de hand van een theoretisch raamwerk van antropologe Cameron Hay de constructie van de elementen perceptie en betekenisgeving onder zeven Turkse Nederlanders met chronische pijnklachten. Hay introduceert het John Wayne model, nauw verwant aan Parsons’ ‘sick role’, als de meritocratische moraal aangaande omgangsvormen met chronische aandoeningen zoals chronische pijn. Chronische pijn is vaak niet meer te begrijpen als een symptoom van weefselschade. De tekens en symptomen van de chronisch pijnpatiënt zijn veelal niet meer te vertalen naar biomedisch beschreven syndromen. Het ontbreken van een duidelijke biomedische diagnose heeft verstrekkende gevolgen. De pijn blijft voor velen betekenisloos of krijgt betekenissen toegedicht die voor de pijnpatiënt soms moeilijk te accepteren zijn. Binnen de huidige pijnwetenschappen wordt chronische pijn verklaard vanuit het biopsychosociaal model. Biomedische, psychologische en sociaal-culturele factoren zijn volgens dit model interactief met elkaar verbonden en dragen afzonderlijk bij aan het pijnprobleem. Het begrip cultuur is in verband met pijn, waaronder pijnbeleving en pijngedrag, in de literatuur veelal gereduceerd tot elementen als ras en etniciteit. Er is weinig bekend over de sociaaleconomische status van een persoon, toch ook een cultuurfactor, in relatie tot pijnbeleving en pijngedrag. Bij de geïnterviewde Turkse Nederlanders met chronische pijnklachten lijken vermeende culturele factoren een twee-eenheid te vormen met een lagere sociaaleconomische status waar het de perceptie van en betekenisgeving aan de pijn betreft.
[chronische pijn, Turkse pijnpatiënten, SES,Cameron Hay, perceptie, betekenisgeving]
This paper draws on a theoretical framework proposed by anthropologist Cameron Hay and describes the construction of perception and meaning among seven Dutch chronic pain sufferers of Turkish descent. Hay introduced the John Wayne model, closely related to Parsons’ sick role, as the meritocratic moral in coping with chronic illnesses such as chronic pain. In chronic pain where symptoms persist beyond expected healing time, there is often no more tissue damage. The concept of chronic pain is so poorly defined that it lacks an official status within the biomedical taxonomy. The failure of a biomedical diagnosis has far reaching consequences. The pain is considered meaningless or a variety of meanings are attributed to the pain which are sometimes hard to accept for the patient. In contemporary pain science chronic pain is explained through the biopsychosocial model. Biological, psychological and socio-cultural factors are intertwined and each factor contributes for a greater or lesser extent to the pain problem. In the literature, the connection between culture and pain, including pain perception and pain behaviour, is often reduced to elements as race and ethnicity. Little is known about other aspects of a person in relation to pain perception and pain behaviour. Among the seven Dutch pain sufferers of Turkish origin ‘cultural factors’ seem to build a dyadic relationship with a low socioeconomic status concerning the perception and meaning of pain.
[chronic pain, Turkish pain patients, SES, Cameron Hay, perception, production of meaning]
JACQUES DE VISSCHER
Jan Hendrik van den Berg: About phenomenology, historical psychology and medical anthropology
The Dutch psychiatrist Jan Hendrik van den Berg is the founder of ‘Metabletica’, the study of historical synchronic cultural developments that mark the expansion of civilization because they bring decisive changes. The phenomenological method is deeply central to Metabletica because it takes phenomena seriously that appear to our pre-reflexive consciousness. These phenomena are the starting point of the anthropological understanding of mankind as ‘being-in-the-world’. This sort of understanding is also fundamental to the clinical observation of any patient, in particular the psychiatric patient. Phenomena are framed in a context where each part forms an allegory of the whole. For example, commanding works of architecture also reveal something about the spiritual and intellectual life of a cultural period and, in turn, the movements in architecture accompany changes in medicine. Van den Berg’s Metabletica found its richest application in the study of European spiritual and intellectual development. In the end, the question of what Van den Berg’s contribution has been for medical anthropology is addressed.
[culture, phenomenology, historical psychology, psychiatry, medical anthropology]