Institute of Cultural Anthropology
Connecting Health and Culture
St. Martin CSA film on mental health
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Claudia Fonseca and Glaucia Maricato on leprosy
The ICA (Institute for Cultural Anthropology) is the semi-scientific journal of Itiwana, study association Cultural Anthropology and Development Sociology at Leiden University. The ICA appears twice a year.
Text editors Roos Capel, Rémi ten Hoorn, Irene Midttun, Veronie Rouschop and Ole Witte
Media editors Rémi ten Hoorn, Irene Midttun, Loes Moree, Veronie Rouschop and Ole Witte
Editor in Chief Loes Moree
External authors Manon Delhaas, Sanne Hogesteeger, Dara Ivanova, Annemarie Samuels, Hannah Stalenhoef, Eston Wahome
Coverphoto Cottonbro - Pexels
Printing Company Orange Books
Editorial address Study Association Itiwana
Attn. ICA-editorial Wassenaarseweg 52 (Room SB-07) 2333 AK Leiden
The editors reserve the right to shorten and edit articles or not to post them. Acquisition of (parts of) articles is only permitted after consultation with the editors
Table of contents
THE COLOURFUL WAITING ROOM
THE RISE OF THE COUNTERFEIT COSMETICS INDUSTRY AND ITS HEALTH CONSEQUENCES
MULTITUDES OF CARE
AIDS AND ISLAM IN INDONESIA
TOWARDS A POSITIVE TURN?
BACK IN LIFE
AND IN BUSINESS
OPENING UP CARE, WITH CARE
BULGARIAN MIGRANT CAREGIVERS IN ITALY
COVID-19: THREE PERSPECTIVES
ANTHROPOLOGISTS IN THE MEDICAL FIELD
ONLINE EXTRA: BODIES, COLLECTIVES AND FORMS OF KNOWLEDGE:
LEPROSY THROUGH THE LENS OF CRITICAL EPIDOMIOLOGY
THE SILENT KILLER
CREDITS TO ALL THE AUTHORS
The colourful waiting room
The doors opened and I entered the building. It was impersonal and intimidating. Everything was white: the walls, the costumes and the furniture. We went to the first aid department. I sat down and nervously waited. The room was crowded. Two children of a noisy family were waiting while playing a game I could not understand. Next to this family, a man sat on his own. He wore an outfit from the seventies and rhythmically tapped his finger on the chair. After three hours of waiting, my collarbone turned out to be broken. This was not very pleasant, but at least I learnt something. In this waiting room, I came to realise that interesting people and cultures existed within the white walls of the hospital.
There is a big contrast between medics and anthropology. The medical field is often associated with cold buildings, structure, and order, whereas anthropology is linked to beautiful and colourful cultures in all different shapes and sizes. In this ICA we hope to demonstrate the interrelation between medics and anthropology. We explain this, amongst other articles, by writing about the Covid-19 crisis. During this pandemic the social structure of everyone’s lives has changed to a certain degree. Anthropologists play an essential role in understanding these social changes.
Not only the Covid-19 crisis will be discussed in this issue. We will also talk about the relation between beauty, religion and (mental) health. Moreover, you can read about how anthropologists experience working in the medical field. Lastly, a problem will be addressed that deserves more attention and needs to be solved: the stigmatization of illnesses.
Let’s explore a world of (hopefully) refreshing and fascinating medical insights
A third-year student of Cultural Anthropology, the Secretary of the Board of Itiwana and the Editor in Chief of the ICA editorial.
The rise of the counterfeit cosmetics industry and its health consequences
In recent years, influencers have, we could say, taken over the internet. Filling our Instagram feeds with flawless selfies, the latest trends and promotional codes for products they most likely do not use themselves, internet sensations such as Kim Kardashian and Kylie Jenner have marked their territory in the digital environment. Besides advertising sponsored products, a selection of these social media stars have also released their own products. From eyeshadow palettes to contour kits and from make-up brushes to beauty vitamins – everyone wants to get their hands on one of these hyped products. This, however, has also sparked a rise in counterfeit makeup products, which are essentially fake versions of the original, often sold at a much lower price. Even though this might sounds like an attractive alternative to some, the health consequences that come with the use of such products are not appealing in the slightest…
We could say the process of counterfeit makeup production starts at the influencer, because they, as the word implies – influence other, predominantly younger people. Generally speaking, when an influencer is launching a certain product, this product is often advertised through their social media profiles months before its release. Followers, including other influencers, bloggers, but also younger people who look up to their favourite celebrities, are often showered in advertisements about how ‘revolutionary’ this product will be. Consequently, many followers will try to get hold of one of the items.
A good example are Kylie Jenner’s famous lip kits. Kylie Jenner’s lips were a hot topic for years, which indirectly started the trend of overdrawing your lips to make them look bigger, or even further – getting them injected with dermal filler. In 2015, she launched her own brand ‘Kylie Cosmetics’, with their main product being lip kits to achieve ‘the Kylie look’ (Ruffo 2017). These kits sold out in the blink of an eye, leaving many fans empty-handed (Bailey 2016). Some of these fans, however, still managed to get their hands on what they thought was a legitimate Kylie Lip Kit, through sites such as eBay or markets such as Santee Alley in Los Angeles. In reality, these cosmetic products were replicas, mainly produced in China and Hong Kong, which looked identical to the original. And the Kylie brand is not the only one – many others, including products from YouTube sensations such as James Charles and Jeffree Star seem to be popular on the fake make-up market (Shalby 2020).
The use of counterfeit cosmetics is unfortunately not risk-free. When beauty products are in high demand, there is very little time to produce a bootleg version. Consequently, very little attention is paid to hygiene standards in production – in fact, these products could be made in someone’s bathroom. A report from the Local Government Association has shown that many counterfeit products often contain large amounts of dangerous chemicals such as lead, arsenic and mercury, but in rare cases also traces of feces (Mackey 2018). This can lead to serious complications – many victims reported skin infections, rashes and chemical burns. Some even reported their lips were glued together as a result of using counterfeit Kylie Lip Kits, as these apparently contained glue (Mondalek 2016).
Despite attempts to regulate this trade, the counterfeit cosmetics industry continues to rise. The solution has to come from the consumer – it is a case of supply and demand. If the high demand for these popular makeup brands decreases, so will the production of knock off versions. Therefore, the only advice would be to stop buying makeup products if you are not entirely sure whether it is a legitimate product you are buying. A cheaper version might look attractive at first glance, but as we have seen, these products are not as attractive as they seem. Risking serious infections in order to look like your favourite social media star is simply not worth it. After all, you cannot pout your lips if they are glued together.
A first-year anthropology student, aspiring journalist and self-described acid house enthusiast who can occasionally be found singing Britpop songs on a stage.
Multitudes of care
A couple of guys are sweeping the floor in the elephant enclosure. With great enthusiasm they scoop the giant piles of manure into cards, which are then wheeled off by one of the employees of the zoo. The only thing that distinguishes them as a separate group is their differently colored shirts. Other than that, they blend in like any other; chatting with the employees of the zoo, greeting the animals by name and putting great care in the upkeep of the enclosures.
Being part of normal life is exactly the goal of this care project, which is a collaboration between ASVZ, an organization that provides care for people with intellectual disabilities and behavioral or mental problems, and Blijdorp Zoo in Rotterdam. In the zoo the clients and care workers work together on the upkeep of the enclosures, the greenery and with keeping the park clean. According to ASVZ, focusing on controlling problem behavior through protocols, medication, fixation or separation is counter effective. Instead, the care workers of ASVZ go out together with their clients, to engage with meaningful daytime activities.
This project illuminates clearly that care is not a one-way street: The care workers keep an eye out for the clients but, most importantly, they provide the means for them to care themselves. Care is not something that can be encapsulated as something static, which can be bought or given: it is something that is made: created and enacted between caretakers, patients, and in this case, the elephants and their manure.
Hanna Stalenhoef is a PhD student at the Erasmus School of Health Policy & Management in Rotterdam, in which she participates in an action-oriented project on the regionalization of elderly care in the Netherlands. Priorly, she studied Cultural Anthropology in Utrecht, and worked as a research assistant for the ‘Food Citizens?-project in Leiden.
Aids and islam in indonesia
Towards a positive turn?
In Aceh, Indonesia, the stigma confronting people living with HIV/AIDS is exacerbated by the stances of conservative Islamic scholars. However, some recent initiatives suggest possibilities for change. “Ustadz [religious teacher],” someone in the audience asks, “I once read in the newspaper that someone was cured of HIV after holy verses were read to him.” “Well,” our discussion leader replies, “nothing is impossible, we can be thankful that all trials have hikmah [divine wisdom].”
It is January 2014 and we are at a three-day workshop on HIV and AIDS in a coastal district of the Indonesian province of Aceh. In Indonesia, the Acehnese are often considered to be particularly pious Muslims. This is the region where powerful sultans implemented Islamic laws in the sixteenth century, where at the end of the nineteenth century religious leaders declared Jihad against the Dutch colonizers, and where survivors from the 2004 Indian Ocean Tsunami recovered through prayer, religious chanting, and by confiding to each other that every disaster ultimately has divine wisdom.
This is also the province that, uniquely in Indonesia, started an elaborate process of Sharia implementation in the early 2000s – resulting, among other things, in the public caning of men and women convicted of extramarital sexual activity, gambling and drinking alcohol. In 2018, homosexual men also came to be subjected to punishment by caning, adding to the growing viIolence against LGBT people that has swept through the Indonesian archipelago over the last years.
Rising infection rates
The workshop, organized by a local non-governmental organization, is remarkable, not in the last place because awareness raising workshops on HIV are rare in Aceh. Agreed, HIV prevalence here is still low, but the rising infection rates are worrisome and, as I noticed during my thirteen months of ethnographic research on HIV and AIDS, stigmatization of people living with the virus is huge.
Many ordinary Acehnese think of HIV/AIDS as the result of sinful behavior and consider its presence a blow to the province’s Islamic pride. What is even more remarkable about this specific workshop, however, is that it is delivered by two Islamic Javanese interfaith activists who are themselves knowledgeable in Islam, to an audience of Acehnese religious leaders (ulama) (twenty-one men and four women).
workshop about hiv
With a skillfulness that betrays years of experience, the two workshop instructors involve the audience in sensitive discussions on unlawful sexual intercourse (zina), HIV prevention and care for people living with HIV. On day one, they explain what they call the “medical” approach to HIV, while acknowledging that outside of the scientific field “nothing is impossible.” On the second day, the audience engages passionately in a debate on the permissibility of condoms. Participants fear that the availability of condoms will lead to more unlawful sexual intercourse. Yet many also agree with the instructors that if people engage in unlawful sexual intercourse, preventing HIV transmission is still important.
In the heat of the discussion, one of the ulama in the audience asks: “So if people engage in extramarital sex, is it mandatory in Islam (wajib) that they use condoms? Extramarital sex is sinful. But if they do it with a condom, they also receive merit (pahala) [because they enact something that is mandatory], isn’t that funny?” Another then concludes that perhaps the concept of wajib should be replaced with the general Indonesian word for “should” (harus), relieving the prescription of its Islamic judicial force and merit.
On day three, the participants are asked how, with their new knowledge, they would react to a person living with HIV. Responses vary: “I would say indah Allah, la ilaha ilallah (God is beautiful, there is no god but God)” says one of the men. Another says that after what he has learned during the workshop, he wouldn’t run away anymore, but support the person. One of the women says that she still believes that HIV is a curse. Another acknowledges that she now understands that there are different ways of transmission of the virus and that “we can think of it as a trial, requiring forbearance and patience (kesabaran).”
While most Muslims living with HIV in Aceh whom I came to know resisted the idea of HIV as a curse, many embraced the notion of a trial, a stroke of misfortune that was meant to test their sincerity and patience, and even a second chance they could use to increase their piety and merit. For them, too, HIV was a disaster that contained divine wisdom: something better would be on the horizon.
Discussions during the workshop, as well as responses from people living with HIV themselves, reveal the complex relation of Islam and HIV in Aceh. Although many living with the virus experience that the societal Islamic pride contributes to misunderstanding and discrimination, Islam is also central to positive, future-oriented, narratives of living a good life with HIV. The workshop was a productive attempt to make the ulama more centrally involved in such a more positive turn that could lead to care and support.
The tragedies of exclusion and stigmatization that befall seropositive people in Aceh do currently not indicate that the situation is changing. Yet perhaps more awareness raising, especially among religious leaders, does have something to offer: In one of the group exercises, participants had to answer the question of what people living with HIV need, apart from anti-retroviral therapy. All groups came up with answers such as “empathy, especially from religious leaders,” and “self-confidence, so that they know they are like others.” “We should give hope to these people,” one group concluded, “Allah gives all diseases and He can cure all of them. A trial makes one stronger.”
An Assistant Professor at the Institute of Cultural Anthropology and Development Sociology at Leiden University. Her research interests are in the fields of medical and psychological anthropology, narrative, morality, HIV/AIDS, end-of-life care and disaster. Her most recent project focused on care for people living with HIV in Aceh, Indonesia.
back in life
and in business
One day, a volunteer of the Community Programme for Mental Health at St. Martin CSA reported that she spotted that a man who lived all alone in an abandoned house was behaving strangely. A social worker of St. Martin CSA went to see him and quickly realized that Kinyua needed medical assistance. They arranged a visit to the local hospital where he received treatment. Meanwhile, the social worker together with the volunteer tracked the story of Kinyua and tried to find his family. After much asking around they found his uncle who knew about his nephew but did not know how to deal with his deranged mental state. The social worker explained the situation and the uncle agreed to take Kinyua into his house. Seeing that the medication really improved the condition of Kinyua, the uncle funded him a small business. Kinyua returned into the community and now contributes as a charcoal merchant.
St. Martin CSA is a faith-based grassroots organization in Nyahruru, Kenya, that seeks to improve the lives of socially vulnerable people. St. Martin CSA not only provides support for immediate needs, like transport to the hospital and medication for Kinyua, but also looks for a sustainable solution in the community. St. Martin CSA has found that even in the poorest community there are resources, skill and knowledge that can be mobilized to support vulnerable people in a way that they can lead a life in dignity. Nobody is too poor not to give and nobody is too rich not to receive.
Eston Wahome from Nyahururu, Kenya, has been with St. Martin CSA for 20 years as a social worker and counsellor. Working in the Community Programme for Addiction and Mental Health he was able to help many people like Kinyua over the years.
Opening up care, with care
bulgarian migrant caregivers in italy
What is care, both in our everyday practices and as a concept? Is it a good thing to care or rather a burden? How do we care (differently) in times of a crisis?
a way of life
For Bulgarian migrant women, working as badanti in Italy, caring has been a way of life for years, and their stories of doing care, with care are stories of coping with crises. In the early 1990s, the socialist party-dictator in Bulgaria embarked the country on a transformation toward a market economy, which saw more than half of the population lose their jobs. This was disproportionately true for women, who were often employed by the state in administrative jobs and in the care sector, since many of these were swiftly cut. As the so-called ‘transition period’ continued into the 2000s, women formed a solid migratory path of temporary work migration to Italy and Spain. They were able to find employment in households, working as caregivers to elderly Italians or cleaning houses and looking after children in Spanish homes.
In Italy, where I conducted a longitudinal study for more than 8 years, Bulgarian temporary migrant women workers are called badanti, living in the house of their employer 24/7 and often working without official contracts and social security. They are able to send money back to their parents and children in Bulgaria and becoming breadwinners within the family.
Having navigated an economic devolution in their home country, they now find themselves engulfed in another crisis, just like the rest of Europe and the world. The COVID 19 pandemic has a tight grip on Italy, and as many elderly die, migrant badanti find themselves before a dilemma – go or stay?
Care as concept: an ecology of beings
Care has been explored by many authors and has been called “a slippery word” (Martin, Myers and Viseu 2015). Feminist literature has denormalized the concept, showing that care is not always pleasant or necessarily a moral act; that it can just as well be work, an economic transaction or a heavy duty. There is always “dirty work” (Anderson 2000) to be done, floors needing cleaning, bodies needing washing, laundry needing folding. Then care is a job; far from an abstraction, it is a set of practices. Mol et al. (2010: 7) argued that care should be understood as a doing: “Someone has to harvest or slaughter; someone has to milk; someone has to cook; someone has to build and do the carpentry.”
Top left The center of Naples, where many
Bulgarian badanti work and live.
Top right A Bulgarian mountain village,
which has seen many of its women
leave for Italy.
Bottom left Irena, a badante woman from the
North-West of Bulgaria works in
this house in a small Italian coastal
Bottom right Two Bulgarian women work in this
big Italian household in Rome.
We also know that this practice of care is more often done by women and distributed unevenly through global politico-economic structures of dependence (cf. (Parreñas 2001). In Italy, it was women who used to care for the elderly and sick. However, when Italian women entered the workforce in the second half of the 20th century, someone had to do the work of care. This is how Italian women were replaced by other women, migrant women, whose entry into the Italian care market allowed patriarchal structures to remain the same, while creating a lot of change elsewhere. In their home countries, the women’s exit meant that children would be cared for by others and that gender ideals would change. It furthermore meant that some countries would supply migrant labour, while others would receive it. This is how, steadily, many north-west Bulgarian villages saw their mothers, sisters, daughters and wives disappear and only return for summer and Christmas, much like exotic birds or well-deserved Christmas presents. This demographic change in one country supported the demographic status quo in another country, dividing the worlds in those who have care and those who do not.
Care and caring therefore may appear simple, in actions like cutting vegetables or pushing an elderly woman’s wheelchair at the sea promenade, but it is more than that. It is a complex phenomenon that is understood differently and that exists within multiplicities of inequality, gender and power. Although care is about doings ‘on the ground’, it is also an abstract, an economy, and a powerful discourse, which deals with inhabiting the same world, the same web of life. Care as an ecology (de la Bellacasa 2017) connects us all – both human and non-human actors – in a world of needing each other.
Care as practice: motherhood in crisis
Before the world was engulfed in a pandemic, Bulgarian badanti navigated their own, local crisis. Leaving and staying were positioned on continuum of care, as the former meant providing their loved ones, and especially their children, with possibilities, financial support, a future. The latter represented the basic understanding of motherhood and duty – staying with one’s children, holding them, putting them to bed, brushing their hair. This moral dilemma required a different set of normative orientation. Within the badanti migrant community, this problem of being a good mother (when?) was framed as a problem of different needs. Young children, they maintained, needed physical love and affection, so a good mother stays with her children, even, and especially during a crisis. Older children – and the boundary between young and old is left ambiguous – need things, material support, education, possibilities, which is why a good mother leaves for Italy and provides these things.
The outbreak complicates this well rooted continuum of care. As more and more elderly Italians are dying and the population goes into social isolation, badanti are often left without an employer and with difficulty finding another job. They suddenly do not earn. Back in their home country their parents might be in danger of falling ill and they want to be with their families. Yet, they are afraid of brining the virus in their homes: “I don’t know what I should do. What is the point of staying here? But if I go home, I might make [my] people sick.”
In the context of a virus, staying away is a form of care, which makes clear how care and caring are wrought with multiplicities and ambiguities. Migrant caregivers perform care for strangers, in order to care for their loved ones and themselves. This care is often physical care; the elderly must be washed, put into bed, given their medication on time. Care is doing. However, this means that others care for their children and parents back in Bulgaria, just like they, as others, care for the Italian elderly they work for. Someone else clothes their children and helps their parents with groceries. In the context of COVID19 care is a biophysical phenomenon, as people must not be together for fear of passing on the virus. Yet, it is also a feeling and a yearning; it cannot be expressed in doing but must be done by staying away.
Opening up (with) care
We should beware that we do not simplify the notion of care in our work and understanding. The concept has been discussed at length, especially in feminist work, yet it often remains a black box, beguiling with obvious clarity. Of course, mothers care for their children and of course, women are more caring and therefore do more caring work. Or do they? To do good work on care, we should do work with care, asking what is at stake and conceiving of care as a broad, complex phenomenon, rarely offering simple answers.
The stakes during this crisis are familiar to Bulgarian migrant caregivers in Italy. They, just as many others in the world, have been existing within crises for a long time, tinkering with, and navigating difficult choices. Their experiences show that caring can be done in numerous, often contradictory ways and that it is done on many levels – as one’s job, as an emotional need, as a way of life and survival. Therefore, their migrant stories make clear that we do not care differently in times of crises, but rather care itself expands, becoming a slippery concept, a difficult practice and an imperative, as well as a connector of worlds.
An anthropologist and writer, working at the Erasmus University of Rotterdam. Her work explores the relationship between place and care (especially the built environment and architecture) and she is interested in place-making, city-making, and migration.
Bodies, collectivities and forms of knowledge:
Leprosy through the lens of critical epidemiology
The Ecuadorian doctor and researcher, Jaime Breilh, cites Bourdieu, to bring home the idea that epidemiology, like “any other symbolic operation, is a transformed, subordinate and sometimes unrecognizable expression of the power relations of a society” (Bourdieu, apud Breilh 2008, p. 745). In his work, Breilh underlines the inevitable connections between knowledge and politics, making a plea for a ‘critical social epidemiology’, based on perspectives from the global South that might mitigate the narrow, biomedical perspectives of the hegemonic models of traditional Western science. In the following paragraphs, we propose to contribute to this line of analysis by demonstrating the close relation between authority and evidence in a recent controversy over the treatment of leprosy (1) in Brazil.
It is important to remember that in Brazil where we live and do research, there are over 25,000 new cases of leprosy diagnosed every year. According to the World Health Organization, ours is the only country in the world that has not “eliminated the disease” (that is, reduced its prevalence to under one case per 10.000 people). And, in absolute numbers of leprosy patients, Brazil is surpassed only by India. It is thus understandable that, although scarcely commented on elsewhere, a controversy concerning the treatment of multibacillary leprosy has gained considerable attention among the country’s health workers over the past few years (2).
In our research, we trace the events that led up to this controversy, from the initial proposal launched by a WHO advisory committee in 2002, through to its endorsement by the Brazilian Ministry of Health in 2018, and subsequent reactions by local health workers (Fonseca 2015, in press). Inspired in the literature on critical global health, we pay special attention to the way perspectives are shaped, justified, and rejected through the mediation of quantitative metrics – such as randomized controlled trials (RCT) – that ‘simultaneously displace other kinds of evidence, even while leaving unanswered questions about efficacy’ (Adams, 2016, p.189). We conclude by suggesting how decisions concerning the ‘best treatment’ -- initially dictated by medical authorities in the upper echelons of hegemonic global health -- are thoroughly transformed by the ‘local’ proponents of social medicine and patient participation.
Up until the 1980s, treatment for leprosy could last throughout a patient’s lifetime. 1981, with the development of an effective multi-drug therapy, the length of recommended treatment was reduced to 24 months or until the patient’s bacillary count dropped to 0. In 1994, reference to bacillary count was dropped from the WHO protocol, duration of treatment standardized at 24 months. In 1998, the length of treatment was further reduced to 12 months. Since then, patients with advanced (that is multibacillary) cases are to follow a year-long regimen of multi-drug therapy, including a strong monthly dose (to be taken under direct supervision of a specialized health professional), followed by smaller daily doses. Having completed the twelve months, a patient is automatically classified as ‘cured’.
In 2002, WHO established a Technical Advisory Group in order to examine the possibility of further reducing the treatment from twelve to six months. At the time, committee members felt there was not enough evidence to warrant a change, and so proponents of the shortened regimen proposed to organize a series of RCTs (randomized clinical trials) to test the validity of their proposal. To produce the scientific evidence that could help committee members reach a consensus, RCTs were carried out in India, China, and Brazil with increasingly refined methodologies. Having followed the canons of Western epidemiology, yielding publications in prestigious international journals, the authors of the trials were able to persuade many policy-makers that there were clear advantages to the shortened regimen of treatment. Accordingly, in its Global Leprosy Strategy published in 2016, WHO stipulated as one of its major goals: the promotion and ‘global roll-out’ of the new, shortened regimen of treatment. In early 2018, the Brazilian Ministry of Health followed suit, decreeing nation-wide implementation of the new treatment protocol.
The proposed change in national policy set off an immediate protest by Brazilian health workers from all over the country, spearheaded by the Brazilian Society of Hansenology. Bolstered by a long tradition of collective medicine, they went to the newspapers, mobilized different professional associations, wrote manifests, and organized their social networks to fight against the proposed change. On the whatsapp group of health workers and researchers we participated in, comments revealed a clear polarization between, on the one hand, clinicians engaged in daily, front-line contact with patients and, on the other, epidemiologists and policy-makers:
‘Either you know the disease and you are against the shortened protocol or you are floating in the quicksand that permeates our national administration – political appointments, protocols, bureaucracy..’.
‘With [only] six doses, the patients are going to be transmitting the disease at home and elsewhere, and they’ll have Hansen’s again in ten years when these guys [in Brasilia] who are deciding all this now will not be around to retract their opinions and see the mess they have left us with.’
‘I am no authority, I am merely a clinical professional who treats and cares for patients with Hansen’s...but in our service alone, we have over 70 relapsed cases!’
Objections to the shortened protocol underlined the fact that leprosy is essentially a disease of the poor. In Brazil, most victims live in rural areas with precarious health services, far removed from specialized treatment centers. It takes two years to receive a first diagnosis, and relapses may be even harder to discover. Although proponents of the shortened protocol insist that nothing impedes extending the treatment in exceptionally resistant cases, health workers who know the terrain ask: Without an efficient, decentralized health system, who’s to guarantee the relapsed patient will ever get a follow-up exam? And were national stocks of medicine based on the six-month treatment3, who could guarantee there would be enough medication to cover the (possibly many) relapses?
Yet, in the decision-making groups – both in WHO and the Brazilian Ministry of Health -, the idea of scientific evidence appeared to speak louder than any other argument. While proponents of the new protocol claimed that the ‘minority’ positioned against their proposal had ‘failed to present any evidence (scientific publications) to support their opposition’ (Penna et al., 2018), opponents insisted that the WHO committees and RCT scientists had completely ignored the many localized studies showing high relapse rates with six- and twelve-month treatments (SBH 2018). The question of exactly what constitutes evidence became political as each side of the debate tried to enlist powerful allies.
We now arrive at a rather surprising about-face that occurred in the WHO policy, signaling a retreat from its reliance on the ‘gold standard’ of medical evidence -- the RCTs. Let’s remember that, in 2016, it appeared that nearly fifteen years of evidence-based medicine had triumphantly culminated in WHO’s endorsement of the shorter, uniform treatment as a major goal to be promoted throughout the globe. Yet, almost two years later, in 2018, when its Guidelines for the diagnosis, treatment and prevention of leprosy was published, WHO retracted its endorsement of the shorter protocol, stating there was ‘insufficient evidence to recommend a decrease in the duration of the current 3-drug regimen […] from 12 to 6 months. In addition, the only available RCT found a potential association between shorter duration of treatment for MB leprosy and increased risk of relapse’ (WHO Guidelines, 2018: 19; our emphasis).
The question is what turned WHO’s policy around? Certainly, there had been opposition from the start to a shortening of the treatment regime. Doctors and NGOs with long experience in the field were still leery about the previous cut in 1998, when the treatment shrank from 24 to 12 months. When in 2002 the epidemiologists still proposed to reduce the duration of treatment even more, health workers from India and Brazil banded together to voice strenuous objections. And yet, the RCTs appeared to speak more loudly, chugging ahead with their ‘evidence-based truths’ right up to WHO’s 2016 endorsement in 2016 of the new regimen’s global implementation. What happened? How could the verdict of ‘hard science’ be so abruptly undone?
We would like to suggest that health activism was largely responsible for the change. Alice Cruz (2016), UN Special Rapporteur for issues concerning leprosy has given voice to what seems to be a growing trend toward patient participation in policy debates by highlighting the ‘embodied experience’ of patients and their families as the ‘most efficient path to the prevention and administration of potential damage caused by the disease’. It is no coincidence that an examination of the past ten years of WHO documents shows an escalation of this ‘embodied experience’. In the 2006 Global Strategy, there is no mention of the document’s authorship, nor even of contributors. The text stands as entirely impersonal, institutional production. In 2016, things are different. We find one full page on contributors, with named participants listed under rubrics such as: national programs, specialists and WHO. In the 2018 Guidelines, the contributors have burgeoned to three pages of references to specific individuals and associations, including ample mention of ‘persons affected by leprosy’ from different parts of Asia, Africa, and South America.
We suggest that the proliferation of patient participation in WHO’s global strategies transformed the ‘power relations’ underlined in Breilh’s critical epidemiology, thereby guaranteeing the maintenance of the twelve-month treatment regimen. We would hold that this ‘victory’ does not spell out the whole-sale legitimation of medical intervention (indeed many activists object to what they consider an excessive emphasis on a ‘cure’ via multi-drug therapy to the detriment of long-term efforts needed to promote rehabilitation, physical therapy and various forms of care and self-care for the chronically ill. Rather, it signals an optimistic moment concerning the inclusion of multiple voices that might help close the gap between the producers of knowledge and those most affected by it in a joint effort to prevent and administer what many have now recognized as a persistent chronic disease -- leprosy.
Debates over a new treatment
A surprising about-face
Glaucia Maricato holds a Ph.D. and M.A. in Social Anthropology and a B.A.in Social Sciences from theFederal University of Rio Grande do Sul (UFRGS/Brazil). Currently she is about to start her two-years project “Absent Presences” as
a Marie Sklodowska-Curie Fellow at the Institute of Social and Cultural Anthropology at Free University Berlin (FUB/Germany) centered on the transnational efforts to eliminate Hansen’s disease as a global and local public health problem. Since 2012 she has been working on the scientific, political, and social aspects of Hansen’s disease through an intense schedule of academic readings, ethnographic fieldwork, and collaboration with teams of university researchers and activists from different countries.
Claudia Fonseca is a professor in the Department of Post-Graduate Studies in Social Anthropology at the Federal University of Rio Grande do Sul (Brazil) and in the Doctoral Program in Anthropology at the National University of San Martin (Argentina). Her research interests include kinship, gender studies, legal anthropology, and the anthropology of science and technology. Since 2012, she has been conducting research in connection with previous leper colonies in Brazil, looking at questions of medical care, social movements for reparation, stigma and deficiency. Simultaneously, she is working with lower-income urban families, examining the interaction between community/kin networks and public policies for the care of dependent members of the household.
COVID-19: THREE PERSPECTIVES
ANTHROPOLOGISTS IN THE MEDICAL FIELD
What is care, both in our everyday practices and as a concept? Is it a good thing to care or rather a burden? How do we care (differently) in times of a crisis?
WORKING ON THE COVID-19 RESPONSE IN THE NETHERLANDS
For the past five years I have worked for the Red Cross, an organization that in most countries is known for the health care and emergency relief support1 and for the big numbers of volunteers2 that are the face of the organization. Although I never worked for a prolonged period of time in a team that is made up predominantly of volunteers, doing so now during the COVID-19 response has been great and challenging.
Our team coordinates the different interventions in our district, which include support to GP offices and homeless shelters, transport of COVID-19 patients, measuring temperatures of hospital visitors, and delivering food from a charity to people in need. The Red Cross is filling gaps in - and alleviate pressure from - the care sector in the broadest sense of the word.
A lot of different volunteers are signing up for these different tasks, and the scheduling and coordination is mainly done by volunteers, too. It is amazing to see; volunteers who, next to their own worries, find time and energy to commit (often for longer periods of time) to these tasks.
The first few days being in the team it really seemed like their energy and motivation was endless. However, I have come to learn more about the conditions that need to be in place for a successful volunteer operation. We all know that volunteers are not being paid, but much more than I had realized up until now, is that there is a big need for non-financial incentives like praise, attention and trust. Even more so when you are depending on their support for longer periods of time. I realized this, for example, while organizing the visit of a board member who was keen to meet volunteers. It did not seem important in the bigger scheme of things, but the benefits of it are bigger than I could imagine, since the volunteers expressed that they really appreciated the visit and eventually signed up for more shifts.
In this emergency operation it has been difficult for me at times to find the right balance between caring for the volunteers, and caring for the people these volunteers are assisting. You have to do the first to be able to do the latter, but I wanted to invest most (possibly all my) time in the latter. A good lesson learned.
She has been working with the Red Cross Red Crescent Climate Centre since 2015, she is currently the programme coordinator for a multi-country community resilience programme. She studied Cultural Anthropology and Development Sociology at the University of Leiden and completed her masters in International Humanitarian Action at the University of Groningen.
UNUSUAL DAYS AT A NURSING HOME IN NORWAY
In the midst of a world crisis I find myself back home in Norway, in the living room of a nursing home to be precise. I am setting up the iPad for one of the residents for her to see her family after one month of isolation at the residence. When their happy faces appear on the screen there is an instant connection and a simple tear falls down on her yellow shirt. Times have changed since I was here the last time during the Christmas vacation. Back in December, the halls were filled with voices from packed rooms with family members and little ones running around on the floors. Today the conversations and the sounds in the hallways are different.
Over the last five summers and vacations I have been working at the local nursing home in the city where I grew up in Norway. Every time I come back to Stavanger; it seems to me that time has stopped inside these doors. The people are the same and are still dependent on my assistance and presence. Someone who wakes them up in the morning and reminds them what time of the year it is.
When driving home after seven hours in this atmosphere, you feel that you have made a little change in the everyday [life] of the people living there. It is strik- “Robot- hoovers are swiping over the floors ” ing to see how the nursing homes in my city have changed over the years. ‘Lervig Sykehjem’ is one of the most modern nursing homes in Norway. Robot- hoovers are swiping over the floors and a smartphone in my pocket makes a sound whenever someone needs me. And my favourite part: the living room has huge windows overlooking mountains, it truly makes the work less exhausting. As soon as I arrived back home due to the coronavirus impacting our teaching, I decided that I wanted to work in the nursing home to give a little back to people feeling lonelier than I do these days. After a two-week quarantine, I had my first work shift. The sounds in the hallways were now dominated by long phone calls and skype calls over iPads in the afternoons. Quiet, long and unusual days for all of us.
Irene Midttun is a first years anthropology student at Leiden University, but she is born and raised in Norway. She loves to travel and to photograph.
A STORY FROM AN ANTHROPOLOGIST IN THE HOSPITAL
Nursing and anthropology. Maybe not the first combination that popped into your mind when you choose to study anthropology. For me neither, but I think it is a great combination. I just finished my bachelor in anthropology, I work as medical student in the hospital ‘Franciscus Gasthuis en Vlietland’ and will start studying nursing in September.
The term ‘medical student’ is a little bit misleading, since I am not a medical student at all. For this side job a medical background is not needed. We work in different teams, spread over the hospital, to make sure every patient gets their dinner in the evening. With the food car we pick up the meals and bring them to our department. At the beginning of our shift, we get information about patients with a special diet. Then, we can start walking into the rooms, announcing what is on the menu today and get the patients a plate with the food they want. After some cleaning, we walk through the rooms again to serve a cup of coffee or tea with a biscuit for anyone who wants it. We end our shift with the last round to help people brush their teeth and get ready for the night. It is a nice and rewarding job, because you can directly help people who need it. Especially in this period of the corona crisis. Since there are no visitors allowed to come by, people are happy to see some faces, have a little chat and get some extra help when the nurses are busy. The diverse and open minded view anthropologists have is helpful here. We learned to empathize in other people’s lives and situations. To show our true interest to patients is something that is appreciated that makes them maybe a little bit more comfortable in this (for many) unfamiliar situation.
Like I said, I will start studying to become a nurse in September. After I finished my bachelor in Anthropology I decided I wanted to do something more practical. The master in Medical Anthropology appealed to me, but did not fulfill my wish to work more practically. With nursing I have the feeling I can directly help people, this gives me satisfaction. I am looking forward to learn all the nursing skills, discover medical treatments in other cultures, get to know the culture within a hospital and thus become a good anthropological nurse.
Manon Delhaas has just completed her bachelor’s program in anthropology and will start studying to become a nurse. Besides that, she loves travelling and meeting new interesting people.
The silent killer
I was twelve when my parents told me that I was HIV positive. I always knew I had something; I had to take medication every day, had visits in the hospital once every three months and I knew I was very sick as a baby. But I never knew what it was. I never really thought about what it could be, because aside from the many pills and the doctor’s visits, my life was as normal as any other kid my age. But then one day my parents told me they wanted to talk about the illness I had. It sparked my curiosity. They were so serious about it, it had to be something bad right? When they told me it was HIV, I was weirdly underwhelmed. I was like, really that’s it? That literally changes nothing. Okay, well I will continue my life now I guess… My parents said they did not tell me sooner because I have to be discreet about it, and children tend to be very open. I did not completely understand back then why it was so important to keep it quiet, but I believed my parents, so I told no one.
After my parents told me that I was HIV positive, the next doctor’s visit was very different. They started a module which teaches children how HIV works in a playful way. It was a fun animation in which the white blood cells were soldiers who fight to keep your body healthy and the HIV virus was an evil monster that hurts your soldiers. The medication was animated as heroes that kept the monster away from your soldiers. The module also tackled the misconception of contamination. It taught us the ways HIV is and isn’t contagious and we got little tests with scenarios where we had to say if there was a possibility of contamination or not. Kissing? No. Cleaning an open wound? If you don’t decide to put the blood in your mouth, no. Sharing lip gloss? Absolutely not. The doctors also told me that I did not have to worry in the slightest of contaminating someone else, since I was taking my medication very well and the virus was not detectable in my blood anymore for years. This was eleven years ago, research was not as advanced as it is now, but even then they knew: the moment the virus is not detectable in your blood it is pretty much impossible to contaminate someone else. HIV positive mothers already gave birth to healthy babies, so there was literally no reason to worry about what being HIV positive meant for a normal life. That is, of course, if you actually take your medication the right way.
Struggles and loss
Three years later, the first tragedy happened. One of the older girls in the group had been struggling with her medication her entire life. She hated the illness and hated what it represents and every time she had to take medication; she was reminded of that fact. The problem with the medication for HIV is that the moment you are not consistent with your medication, the virus becomes resistant and the medication won’t work anymore. This does not happen very fast but when it does, it is usually quite hard to find a new combination of medication that will work. You often end up with a lot of medication with a lot of nasty side effects, which obviously even make it harder to take your medication. This girl had become resistant so many times, that there was officially no medication left for her that would work. She was ill for a long time and eventually, she passed away. Her death was a slap in the face for every camp member because she was like a big sister to anyone. Many of us including me went to her funeral, and after this tragedy we promised each other that we would be open about our struggles so we could support each other, so that nothing like this would ever happen again.
When my parents told my nurse that I knew about my illness, my nurse invited me for a camp which was organized by several hospitals in the Netherlands specially for teens who are HIV positive. Every year they organized either a weekend, or a full week somewhere in the Netherlands. You had to be between twelve and twenty-two to join the camp. I always loved camp, so of course I wanted to join. I did not really care about the ‘sharing experiences of your HIV positive life’ part of it before, since I felt like I had no actual experiences that were worth sharing. The first time I went, I was really nervous. I did not know anyone and of course I was afraid that they all knew each other already and I would be alone the whole weekend. But that changed in a heartbeat. The whole group was incredibly warm, open and sweet, and within a weekend I felt like I had made friends for life. During the weekend, we did share experiences about living with HIV, but for me and for most of the kids that was not the point. We had a lot of fun, danced a lot, made music and shared so much more than just being HIV positive. It was like a little family.
During the first full camp week that I joined, I got to know most of the kids on a much deeper level than I knew most of my friends in my normal life. I also realized that my extremely easy-going experience with being HIV positive was more an exception of the rule than a standard. Most of the kids lost at least one of their parents because of HIV or struggled intensely with insecurity and their relationship with their body due to the stigma’s that are connected with the illness. We talked a lot about our feelings, mental wellbeing and struggles, and even organized an evening where we commemorated the people we lost. People could share stories about the people they lost, and they would receive support through hugs and sweet words. It was extremely beautiful and for me it was mind opening. After hearing the stories of how people lost their parents, or how some of the kids had to be hospitalized because they were not taking their medication, or how some became incredibly lonely because they were open about their illness and no one wanted to be near them anymore, the illness became more than just a word that explained why I had to take medication every day. I realized I actually do have a monster inside of me and the only reason I am not dead or dying is because of these pills, and the only reason I can have a normal life is because I keep my mouth shut about it.
SUFFERING IN SILENCE
But two years later, it did happen again, and even more unexpectedly. One girl who was my age unexpectedly died. When we all saw the message, not a single one of us actually believed it. But she was doing great? She was studying, she had friends, she was visiting her family and up until quite recently posted happy photos on her social media. It could not be possible? But it was. Due to her shame and denial that her blood was actually carrying something dangerous and due to her fear of the reaction of other people, she had kept it secret that she was actually struggling a lot with her medication. She caught a nasty virus while visiting her family in Zimbabwe and her immune system was too weak to fight it off. She died within two weeks. She, like the other girl, struggled with her medication because she could not accept the illness. She was influenced by the stigma and did not want to accept that she was in fact HIV positive. She had a busy social life and felt it was easier to pretend to be healthy by completely erasing it out of her life. In the end, this was the cause of her death. We were all completely heartbroken and struck by grief, but also very, very angry. Society has decided our illness is a taboo, something you could only get if you were an irresponsible horny gay person, something you don’t talk about if you want any kind of social life, or even a career. These notions are the reason these two girls could not accept their illness. This means that society, not the illness itself, killed not one, but two of us. And still, we could not even talk about it with anyone else except for each other.
Anger and grief
This second tragedy should have brought us closer together, but in reality, it only drove us apart. Due to budget cuts the camps were cancelled so it was up to ourselves to meet up, but the tragedies left a rig between us. Some of us were desperate to get close to each other, trying to force everyone together, but a lot of us did not want to be confronted by the grief and wanted space. This caused a lot of frustration which made sure many of us actually left the group. One year later, we got a message that another member of the group died. We felt lost, angry and instead of the warmth and love that once defined our little family, hostility grew. No one wanted to lose another member of the group, but this now felt like more of an inevitability than just a fear. The people that were so desperate to get close again after the last tragedy were angry that it did not happen and felt like another death could have been prevented if we had been there for each other, and many others were just afraid to get close relationships with people that might die. Everyone was afraid and sad, and now we are left with barely any contact at all. I often wonder how the people that were struggling back in the day, are doing now. Will we lose anyone else next year? And who will it be? I want to ask them, but the people who were struggling completely cut their ties with us, so we can do nothing but wonder and hope they are doing fine.
Fighting the stigma
Our group is now marked with anger and fear. A part of our group decided to become activists and fight the stigma, being open as HIV positive, but many of our group, including me, went back to a life with secrets, trying to deny that HIV is an actual part of their lives. I want to be so much more than just ‘that person with HIV’ but I fear if I ‘come out’, this is how I will be branded. I am afraid of what it might mean for my social life and career and I am not ready to risk it all yet. But, the reason I am writing this story is because I hope that someday, the stigma will be gone and I know this will not happen if no one tells the truth about the illness. When I was a little girl, I had to take 12 pills a day to keep the illness at bay, but research has advanced a lot. It is now officially proven that the moment the virus is not detectable in someone’s blood (and even the way they research the blood has improved a lot) that it is completely impossible to contaminate anyone. You can grow old, have babies, have unsafe sex and enjoy life to the fullest like any other person, with minimal side effect since the medication has improved greatly too in the last few years. All it takes, is one pill per day.
The Connection between illness and social science
One pill per day. Only one, to have a normal life. And yet, here is a story of three young people who died unnecessarily. This is proof of how stigma and stereotyping does not only form a society’s view on something, but also has extreme and deadly consequences. In a country like the Netherlands with the right facilities, HIV is probably one of the least horrible and best manageable chronic illnesses to have (I often joke that I would rather have HIV than eczema), but the social implications make it one of the most difficult illnesses to live with. People often believe that illness and social sciences could not be further apart, but HIV shows how very much intertwined they are. I hope that you, as a reader, are now motivated to help destroy this stigma and help us HIV positive people to actually have the carefree life we could have. Just tell a friend. Tell a family member. Educate one person at a time and at some point everyone will know. HIV is not deadly. Stigma is.
Meet the team
Thank you very much for reading the second and final ICA edition of this academic year. We have thoroughly enjoyed the process of creating this edition from the beginning, which was in January when we came up with the theme of Medical Anthropology, not knowing a pandemic was coming. Even from the different countries where we stayed during Covid-19, we managed to make you an interesting as possible edition of the ICA.
This ICA is published both offline and online.
In case you have any questions concerning the articles, authors, or copyright, do not hesitate to contact us through email, Instagram, or Study Association Itiwana. We look forward to future editions of the ICA from next year’s ICA committee.
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Opening up care, with care: Bulgarian migrant caregivers in Italy
Opening up care, with care: Bulgarian migrant caregivers in Italy