On ‘social diseases’

Using examples from contemporary social and medical anthropology, critically assess the following review of Briggs’ book: “Cholera has always been regarded as a social disease. It is vastly underreported. Countries do not like to report it because of its commercial impact – they prefer to blame it on their neighbors – and because of variations in the definition of a case. The authors recognize this problem but offer few helpful suggestions. Rather, they criticize administrators, health care deliverers, and epidemiologists, and they take a long time to do it.” (Finkelstein)

Early on in his ethnography, Charles Briggs (2003, p.17) outlines his motivation ‘to disrupt the circulation of stories and practices that kill, foster critical awareness of the politics of health and inequality, and support global cooperation and justice’ which sets itself up for critique through Finkelstein’s review that suggests Briggs and his co-authors ‘criticize administrators, health care deliverers, and epidemiologists’ without advocating any practical points. Unarguably, Finkelstein’s assessment could be levied at many industries and persons, for it is typical of human nature to criticise rather than prioritise coordinated action, yet his review is, overwhelmingly, comprehensive. When contrasted with the clear, almost overly simplistic action plan proposed by Paul Farmer (1999) in ‘Pathologies of Power’, Briggs’ ethnography reemerges in a far less positive light, offering extended discursive engagements with cholera and its narration from several viewpoints, but scarce retrospective policy suggestions. As a result, it is intriguing that Briggs’ frontispiece appropriates Cindy Patton (1996) in Fatal Advice for, in many ways, his own explorations of cholera similarly represent a hysteria and ‘individual blame’ culture. The crux of the considerations prompted by this question is that disease; experiences of it and its outcomes, are variously perceived across cultures, peoples, and power structures. Precisely because the variance in fields of reference can become politically and socially charged, it is important to acknowledge difference rather than to attempt to write it away or negate its existence. Indeed, through the school of ethnomedicine one can argue that the definition of ‘disease’ is not universal; its significance and representations vary, and the only way to ascertain these values is to interact with peoples across disciplines, so introducing a spatial and subjective nature to any verbal construct of ‘disease’. Therefore, it is appropriate to use leprosy as a counterpoint to cholera, both considered social diseases that see lexical difference writ large, and broader overwhelming complications of policy approaches and social management.[1]

Indeed, it is fitting to assess definitions because Finkelstein (2003) employs this exact term: ‘variations in the definition of a case’. In order to distil this argument’s assertion that lexical difference at the microcosmic level extrapolates to public health agendas, one can consider the World Health Organization’s (2000) published resource on leprosy which adopts sweeping and inclusive terminology: ‘generally leprosy should not be diagnosed without a definite loss of sensation’. Extending from the clinical basis, the industry of health is registered through terminology of the ‘commercial’, at once denoting a concern or engagement with commerce: making or intending to make profit. The commerce of health is deeply volatile but pervasive, capitalizing not only on a globalized world economy but also on race, by racializing social constructs. Cholera and leprosy are regarded as social diseases because they exhibit a high incidence among predisposed socioeconomic groups under adverse living or working conditions. An alternative definition as sexually transmitted diseases (pertinent given that leprosy was originally associated with syphilis) captures the social movement of words and experiences of health – or lack thereof (Munro, 1890). What readers of Stories in the Time of Cholera: racial profiling during a medical nightmare (Stories henceforth) are exposed to is a consideration of the different discourses that arise and perpetuate social disease, in particular that of the media – in itself a commercial industry (with interesting lexical punning on ‘an advertisement’ as well as fiscally grounded methodology) – and the injustices that facilitate them. Finkelstein cites a failure of pragmatism in Stories, while Farmer similarly narrates a historical dislocation of justice and public health in the twentieth century. Notwithstanding the judiciousness of Finkelstein’s assessment, it does raise the timeworn debate of nature versus nurture, in itself demanding consideration. The ethnographic nature of Stories does not fulfil the activities Finkelstein expects of it – there is discursive discussion, sometimes delineated through a Western lens, but limited guidance. Perhaps this is based on the nature, or the conflicts of interest of Briggs, with accounts of social disease subject to narratorial framing as suggested by: ‘cholera stories varied widely. Nevertheless, narrators tended to view the epidemic either in terms of its broad social, political, and historical factors or as a medical and epidemiological phenomenon’ (2003, p.8).

Like any experiment or model, Stories is subject to various means and ends as Briggs focuses on the moralizing nature of cholera akin to ongoing engagements with leprosy. Indeed, the modern world’s media and political community encounter great difficulty in reconciling Norway with the existence and persistence of leprosy during the nineteenth-century, because such a social disease remains much easier to narrate through the context of a socio-economically deprecated country such as Bangladesh. Its history in Norway is framed within these terms: ‘leprosy is pre-eminently a disease of poverty – and the hygienic conditions and the economic welfare in Norway have increased considerably in this century. […] There are at present only seven lepers alive in the whole country. Leprosy may therefore be regarded as practically stamped out in Norway today’ (Vogelsang, 1965, p.35). In many instances, it is in the interest of these parties to encourage a racialization of disease, but also a biomedicalization of it as an experiment subject to investigation rather than a public health crisis. Indeed, during decisive years of London-based cholera, Dr John Snow referred to ‘his studies of the South London water supply and cholera as a naturally occurring experiment’ (Paneth, 1998, p.1550). So too, coverage – or otherwise – of these disease trajectories is shaped by timeliness, racialization and veracity. Only a decade ago, in a letter written to the editor of The Times, the problematic terminology of ‘leper’ was raised: ‘leprosy is curable, treatment is free and social discrimination has no place. […] I urge your newspaper to refrain from using the ‘L-word’ (leper) forthwith’ (Sasakawa, 2006). Once again, the lexicon of ‘place’ carries agency, highlighting that writers, forms of publication and circulation all politicize and subjectivise social disease, deciding what to showcase or conceal. The aim of any authorial ethnography is surely to capture what Farmer (2004, p.78) recognises as Pierre Bourdieu’s genius in pulling together a “compendium of testimonies from those the French term ‘the excluded’ in order to bring into relief la misère du monde. […] ‘To subject to scrutiny the mechanisms which render life painful, even untenable, is not to neutralize them; to bring contradictions is not to resolve them’.” Finkelstein appears to appropriately question the extent to which Briggs succeeds in emulating this methodology.

Social diseases are at once something that can be passed around between bodies, cultures, and voices but in each new embodiment or expression they come to represent different things that are empirically, historically and socially constructed. Indeed, Finkelstein’s critique raises Michel Foucault’s (1990, p.140) notions of biopower assessing actors on, and enactments of, change and health on our own bodies and those of others via ‘an explosion of numerous and diverse techniques’. Under this field of thought, power does not solely belong to actors; discourse, institution and regimes of truth produce and reproduce conditions and practices that can be harmful to health. Foucault’s recommendation to look at history less as a linear process of improvement but as an oscillating movement of experience reveals how power is a productive force over society. Biopower acts through knowledge techniques of peoples and subjugates them through ignorance both of historical evidence and constructed disinformation. Indeed, it might be argued that social diseases are ‘plagues’ (Farmer, 1999) widely apprehended even at the lay-person level, but such understanding is inextricably historically bound, and manipulated by local and digital media. Demonstrably, ‘when newspapers and television news programs across the country reported that a massive cholera epidemic in the delta was decimating its indígena residents, the depth of social inequality became deathly apparent. The revelation threatened the racial equilibrium that helped regulate access to power and resources in the region’ (Briggs, 2003, p. 135). Stories tracks the reports and power circulating within the cholera endemic Orinoco Delta of Venezuela between 1992-93 and seeks to highlight variance, revisiting that ‘time’ rather than re-enacting it for the purposes of didactic policy-making. The focus is on explaining health inequalities in the modern, globalized world and so exposing how its peoples can be victimized ‘in the context of local social worlds’ (Janes and Corbett, 2009). Stories cannot be assessed unfavourably for not outlining policy because it occupies a state of representation, exposure and reflection, without extending into the present structure of advocacy. It is useful to here consider the language of nightmare – in itself a social construct and a state of disturbance or non-reality, with shifting connotations and motivations from a thirteenth-century understanding of ‘an evil female spirit afflicting sleepers with a feeling of suffocation’ to ‘very distressing experience’ by 1831 (OEDictionary, 2001).

The move from the space of the book into the populated environment of social disease is taxed, in part through the pervasive literary references which are potentially alienating. Finkelstein’s review identifies the time-dependent nature of reactions to social disease: acute versus chronic, latent versus finite, fear versus memory. Surely Stories’ title is a direct nod to Gabriel García Márquez’s Love in the Time of Cholera, so questioning the role ‘time’ plays for Briggs as author, global health participant or figure of power. Typically, leprosy is figured as an ancient disease – constructed of and about people, while cholera is identified as the quintessential premodern disease (de Sainte-More, 1978) with ‘people who labeled their neighbors as cholera-ridden unsanitary subjects […] often [… catching] cholera’s stigma themselves. Since denigrating images travel so well, medical profiling tends to return to haunt those who use it’ (Briggs, 2003, p.319). Here again, the space of the nightmare and the language of time are registered and recall Finkelstein’s criticism of the taking of a ‘long time’, suggesting an anachronistic methodology for a modern-day publication. But this is in itself problematic. Cholera and leprosy have social understandings that are entrenched in an era that outlined disease etiology without recourse to a biomedical model, often relying on religious and social justification. Indeed, in the case of leprosy it is easy to temporally distance oneself, as its narrative of the ‘unclean’ dates back to Christian ‘times’, but vexedly so, with narration open to bias and questions of veracity surrounding the conception of modern disease. So too, Guy de Maupassant argues for the ‘other’: ‘cholera is something else, it is invisible, it is the curse of the olden days, of times passed, a sort of evil spirit that comes back and that surprises us so much that it haunts us’ (Delaisement and Schmidt, 1959). Of course, such a dismembered approach to social diseases means actively proposing strategies for their management is restricted or willingly overlooked. Which demands a questioning of how these ancient (or, at least, premodern) diseases of cholera and leprosy fit into ‘modernity’ and globalization. It was only two centuries ago that cholera plagued London with the infamous 1854 Broad Street outbreak identified by Snow and that leprosy was endemic in Norway. According to statistics recorded in 1856, the date of the first reliable national census of lepers, the count of a ‘total of 2,858 lepers was reported. Norway had at that time a population of about one-and-a-half million, so that about two per thousand of the inhabitants were lepers indicates a level above the modern-day WHO measure of elimination’ (Vogelsang, 1965).[2]

This identifies a common thread to both Finkelstein’s review and Briggs’ narratives: that of shifting boundaries. The linguistic definition of a ‘case’ is particularly apt to leprosy, which was declared eliminated by the WHO in 2000. This has led to a rise in hidden cases, guilt and blame imposition. This structural power is resonant with Finkelstein’s commentary on Briggs’ criticism of authorities constituting a discourse of blame, highlighting the context that facilitates this vast underreporting of cases. Briggs (2003, p. 21) identifies cholera, leprosy and so-called social diseases as spatial burdens with an associated geography of blame: ‘from the start, the language used to describe cholera was spatial. Defining the epidemic in terms of its location within and capacity to “spread” beyond national borders provided a narrative structure that appeared over and over’. This spatialisation is nationalistic at best, colonialist at worst. Indeed, these diseases have systems of representation that establish blanket associations within the popular imagination such as: cholera is linked ‘with Asia, specifically India’ (Briggs, 2003, p. 26). Meanwhile, Victoria Hislop (2006) demarcates an equally charged spatialisation of leprosy and its interactions in the modern world amongst its citizens: ‘events seem to take place out of the blue that change the course of our lives, but what really determines what happens to us are the actions of those around us now and those who came before us’. Such criticism is a necessary precursor to policy and the forms it takes, which are not, nor should they be, the nature, nor subject, of Stories. Much of this discussion orientates around the nature and functions of identity or personhood and its preservation at local and national levels. At a government level this self-creation is about distancing oneself, for as Erving Goffman (1990) has indicated, leprosy is underreported partly due to its stigmatising potential while cholera creates a culture of fear through its aggressively infectious potential. Linguistically, leprosy is ‘neglected’[3] because of fear of its social and commercial impacts: it is racialized through purblind ignorance and risk. Briggs (2003) seeks to overwrite this via Patton’s assertion that: ‘it is easy to overwhelm what people know with what they fear’. More judicious from Finkelstein would be an assessment that Briggs’ absence of practical solutions attempts to re-frame racialization as denigrating without inadvertently promoting it.[4] Furthermore, the association between health and inequality lies beyond epidemiology in social capital, and the overlap between both biological and neomaterialist explanations. This mixed state is a return to an interim – an attempt to highlight facts in a cogent manner without muddying these with policy-based assessments, a nightmare state that resists a possibilist world to wake into. Indeed, Briggs (2003, pp.3-4) describes the moment at which ‘the unknown disease thrust them [the Riveras] into a nightmarish world of terror and dislocation’.

Prioritising the narration of nightmare in real time, in the lived words of local peoples with cholera and leprosy rather than through the narration of an elitist publication can propel practical, representative and sustainable change. For Finkelstein’s review to be rewritten, it will be necessary to adopt a theoretical orientation that emphasizes shared responsibility and the role of political-economic factors and macrosociological factors (including ethnic conflicts, racism and migration). As Farmer (1999, p.1493) articulates, while ‘it isn’t really possible to merely study the topic [health and human rights] without meaningful and pragmatic interventions; it is important to distinguish between our best analysis and our best strategies’ straddling discourses of biomedicine, public health and social justice. Such developments must be made, for cholera and leprosy continue to influence life even after their ‘power to cause death had dissipated’ and its deadly potential risks becoming little more than a terrible dream (Briggs, 2003, p.298).

 

Bibliography

Briggs, C., and Mantini-Briggs, C., 2003. Stories in the Time of Cholera: Racial Profiling during a medical nightmare. Berkeley: University of California Press.

Conrad, J., et al, 2007. Heart of Darkness. London: Penguin.

de Sainte-More, G.R.B., et al, 1978. The Story of Troilus. Toronto: University of Toronto Press.

Delaisement, G., and Schmidt, A.M. (eds.), 1959, Contes et nouvelles 1884, Guy de Maupassant. Paris: unregistered.

Farmer P., and Gastineau, N., 2004. ‘Rethinking Health and Human Rights: Time for a paradigm shift’, pp. 73-94, in Gruskin, S. (ed.), Perspectives on health and human rights. Abingdon: Routledge.

Farmer, P., 1999. Pathologies of Power: rethinking health and human rights. American Journal of Public Health, 89, pp.1486-1496. Available through: University College London Library website <http://ucl-primo.hosted.exlibrisgroup.com/primo_library/libweb/action/search.do&gt; [Accessed 4 March 2016].

Finkelstein, R.A., 2003. Book Review of Stories in the Time of Cholera: racial profiling during a medical nightmare. New England Journal of Medicine, [e-journal] 349 pp. 1297-1298. Available through: University College London Library website <http://ucl-primo.hosted.exlibrisgroup.com/primo_library/libweb/action/search.do&gt; [Accessed 1 March 2016].

Foucault, M. (1990). The History of Sexuality, Vol.1. London: Penguin, p.140.

García Márquez, G., 2007. Love in the Time of Cholera. London: Penguin Books.

Goffman, E., 1990. Stigma: Notes on the management of spoiled identity. London: Penguin Books.

Han, X., Silva, F., and Baker, S., 2014. On the Age of Leprosy. [e-journal] 8 (2). Available through: University College London Library website <http://ucl-primo.hosted.exlibrisgroup.com/primo_library/libweb/action/search.do&gt; [Accessed 1 March 2016].

Helman, C.G. (ed.), 2000. Culture, Health and Illness: An Introduction for Health Professionals. Oxford: Hodder Arnold.

Hislop, V., 2006. The Island. London: Headline Publishing.

Janes, C.R., and Corbett, K.K., 2009. Anthropology and Global Health. Annual Review of Anthropology, [e-journal] 38, pp.167-183. Available through: University College London Library website <http://ucl-primo.hosted.exlibrisgroup.com/primo_library/libweb/action/search.do&gt; [Accessed 12 March 2016].

Jopling, W., and McDougall, A. C., 1988. Handbook of Leprosy. 4th ed. London: Heinemann Professional.

Kleinman, A., 1988. Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic Books.

Munro, W., 1890. Leprosy and Syphilis. The Lancet, [e-journal] 135 (3487), p. 1436. Available through: University College London Library website <http://ucl-primo.hosted.exlibrisgroup.com/primo_library/libweb/action/search.do&gt; [Accessed 10 March 2016].

Paneth, N et al, 1998. A Rivalry of Foulness: Official and Unofficial Investigations of the London Cholera Epidemic of 1854. American Journal of Public Health, [e-journal] 88 (10), pp. 1545–1553. Available through: University College London Library website <http://ucl-primo.hosted.exlibrisgroup.com/primo_library/libweb/action/search.do&gt; [Accessed 12 March 2016].

Patton, C., 1996. Fatal Advice: How safe-sex education went wrong. Durham: Duke University Press.

Pfeiffer J. and Chapman R., 2010. Anthropological perspectives on structural adjustment and public health. Annual Review of Anthropology. [e-journal] 39 pp. 149–65. Available through: University College London Library website <http://ucl-primo.hosted.exlibrisgroup.com/primo_library/libweb/action/search.do&gt; [Accessed 4 March 2016].

Rabinow P., and Rose N., 2006. Biopower today. Biosocieties. [e-journal] 1, pp.195-217. Available through: University College London Library website <http://ucl-primo.hosted.exlibrisgroup.com/primo_library/libweb/action/search.do&gt; [Accessed 10 March 2016].

Sasakawa, Y., 2006. Letter to the Editor. Leprosy Review, [e-journal] 77 (84). Available through: Lepra Organisation website: <https://www.lepra.org.uk/leprosy-review-index&gt; [Accessed 6 March 2016].

Vogelsang, T. M., 1965. Leprosy in Norway. Medical History, [e-journal] 9 (1), pp. 29–35. Available through: University College London Library website <http://ucl-primo.hosted.exlibrisgroup.com/primo_library/libweb/action/search.do&gt; [Accessed 2 March 2016].

WHO, 2000. Leprosy Elimination. [online] Available at: <http://www.who.int/lep/strategy/faqs/en/&gt; [Accessed: 9 March 2016].

WHO, 2000. Guide to Eliminate Leprosy as a Public Health Problem. [pdf] Available at: <http://www.who.int/lep/resources/Guide_Int_E.pdf?ua=1&gt; [Accessed 6 March 2016].

Williams H. W., 1977. Leprosy – a social disease. Canadian Medical Association Journal. [e-journal] 116 (8), pp.834-835. Available through: University College London Library website <http://ucl-primo.hosted.exlibrisgroup.com/primo_library/libweb/action/search.do&gt; [Accessed 1 March 2016].

Works of reference:
‘nightmare‘ (n.) from Online Etymology Dictionary (2001-2016) available at <http://etymonline.com/index.php?term=nightmare&allowed_in_frame=0&gt; [Accessed 29 February 2016].

[1] Leprosy is often used interchangeably with Hansen’s disease, but the latter is largely archaic in clinical parlance as in Jopling and McDougall, 1988.

[2] Definable as a population prevalence of fewer than 1 in 10,000 people.

[3] Being classified as a Neglected Tropical Disease (Han, X. et al, 2003).

[4] Denigration being a criticism typically levelled at Joseph Conrad’s Heart of Darkness, for example.

Image Credit: CDC Global, Flickr

What’s ethical about that?

This is the final blog in a series of four in which I document my research in Dhaka and the Sirajganj district of Bangladesh. You can read the other posts here. My work was facilitated by Lepra, but all views expressed are my own.

Outside Lepra Office, Sirajganj. Image Credit: A. Bow-Bertrand

Outside Lepra Office, Sirajganj. Image Credit: A. Bow-Bertrand

One of the prerequisites of any primary data collection research project is ethical clearance. In the case of work beyond the bounds of the UK, this means both in-country and university specific proposals and checks. It’s a painful, but necessary process, and as the wise-guys on my University College London (UCL) ethics committee crack, the process isn’t over once you’ve received the letter saying ‘go for it’ (it kind of is, but obviously you can’t suddenly morph into an amoral researcher à la Victor Frankenstein, but UCL don’t really do jokes, so I’ll just leave that there).

Flippancy aside, there have been many points during my time in Bangladesh where I have actually been more than usually aware of self-doubt, which is better figured as ‘researcher reflexivity’ for the purposes of a Masters dissertation report. Questions such as ‘what should I do here?’, to ‘how do I eat with my hand without making everyone watching me feel physically sick?’ or ‘what’s right?’ cropped up on more occasions than I might have anticipated, some of which will resonate with others who have carried out fieldwork in non-native countries, and possibly in languages in which they are not conversant.

View of Lepra Office, Sirajganj. Image Credit: A.Bow-Bertrand

View of Lepra Office, Sirajganj. Image Credit: A.Bow-Bertrand

Both non-fluency and non-nativity were true of my status researching in Bangladesh. Certainly, the investigative scope and my suitability were deemed appropriate by the ethics round table, but the everyday reality raised ethical, or rather moral (the two not necessarily being interchangeable, the latter representing a personally bound set of values rather than perhaps an institutional status quo) considerations. I am fully aware that my work here would have been near impossible without the facilitation of Lepra who supported me from sourcing ‘in-field’ accommodation (incidentally a lovely top floor room in their offices), liaising with their remote clinic staff during the recruitment process and acquiring a Bengali-English translator.

In many ways, their support mitigated many logistical and personnel related ethical dilemmas that may otherwise have arisen, including sustainability of interaction and management of medical and psychological circumstances established or exposed through the course of my in-depth interviews and focus group discussions. Indeed, as the staff here remark, the majority of the participants involved in my research had at one stage been treated or had their conditions managed by the Lepra team or associated government staff. Lepra is an entirely non-profit organisation, reflected in their two-pronged methodology in Bangladesh: early detection of leprosy cases alongside health education and the provision of free disability or reaction management and multi-drug-resistant therapy (MDT) for all identified persons with leprosy.

DFID group; participatory observation. Image Credit: A.Bow-Bertrand

DFID group; participatory observation. Image Credit: A.Bow-Bertrand

This free at the point of care delivery is a divergence from the charges imposed on participants for other diseases with many of their medical histories clouded by financial crisis through travelling, without relief or clarity, between local health service doctors unaware that the person before them was presenting with leprosy. For those who found themselves too financially crippled to pursue treatment or, indeed, prior to their awareness or referral to Lepra, there are common narratives of self-medication in the form of daubing non-itchy anaesthetic patches (a telltale early sign of leprosy) with ghee, and of doubled visits to the mosque to pray for deliverance. For the majority, Lepra’s infiltration into their lives represented a proven treatment, the hope of a restoration of their former life, and a manageable programme that was not financially restrictive.

One side-effect of this is that many such participants feel indebted to Lepra on personal levels of trust and gratitude. It was little surprise that all participants invited to my research programme agreed on first invitation – and willingly so. This was the first ethical minefield to navigate – managing participant expectations, and iterating their option to either decline participation at invitation or at any moment during data collection without any prejudicial treatment towards them from Lepra, and vice versa should they decide to take part. This aside, the lesser acknowledged and perhaps unexpected ‘what should I do?’ rhetoric was associated with information provision.

Image Credit: A.Bow-Bertrand

Image Credit: A.Bow-Bertrand

I am all too aware of the pitfalls of the so called white-saviour complex, something that my own privilege denies full dissociation from. However, a lesser extent of the saviour debate manifested in education or what such a narrative would most likely term ‘enlightenment’. While any patient diagnosed with leprosy by the Lepra central hub and clinic stations who is then marked for MDT treatment must compulsorily receive health information relating to the causes of leprosy, its infectivity and complication management such as washing techniques to limit the potential development and recurrence of ulcers, there is evidence that there are failures in comprehension and dissemination. A blanket question asked to all interviewees was ‘what do you think is the cause of leprosy?’ Largely, the literate participants identified germs or bacterium as causative agents.

But at least half of all participants expressed uncertainty, or a host of other perceived factors deriving from places as diverse as religious scripture, cinema, folklore and personal imagination. Amongst the most deviant answers were ‘hot summer air’, ‘sin’, ‘a cut on my finger’. One of the gold standards of research, particularly qualitative which more typically garners – moreover, encourages – personal narratives, is lack of expressed surprise or judgement. I have a dead-pan poker face on tap when required (cultivated from a childhood with a twin who tells even worse jokes than I do), but such responses did not inspire judgement so much as a dilemma – to educate or not? My personal first point of inquiry if I were to suffer from any condition – including, ironically, mental health – would be to try to identify the cause or trigger. How else does one begin to contemplate seeking an appropriate course of treatment or getting one’s head around the nature of our own health without this knowledge?

IMG_6119

Children of the focus group discussion participants arrive to wave us off. Image Credit: A. Bow-Bertrand

Of course, I wanted to pause the interview and throw ‘germs’ into the equation, for it has been proven that health condition knowledge not only empowers persons with leprosy to manage and even mitigate prejudiced comments based on such unfounded misinformation, but also feeds into an effective preventative strategy. However, how does someone – me – who is neither a clinician nor a person with leprosy inform said participant of the actual cause without somehow sounding condescending or irreversibly traversing the boundaries between researcher and medical care professional? In actuality, it is very difficult. The first time the situation arose I questioned why I didn’t pause then and there, but something instinctively told me that a passing correction was neither context nor time appropriate.

For many participants, including those who have no idea what has caused their leprosy, this is not due to ignorance, but rather a process of consideration that has not provided any understandings, or an inductive method that has established their own system of meaning, even one that is incorrect according to the biomedical model. On the second instance, I was prepped at the end of the interview with a bog-standard Lepra information leaflet, which I was able to talk the participant through with the support of clinic staff. In many instances the participants were willing to reassess their disease understandings, but for most part the fundamental truths remain the same, and all that really matter – that following the provided course of MDT and self-care programme they can restore their health to at least a functional level while personal treatment adherence limits the chances of both relapse and disability progression.

This research has highlighted that there is a lot to learn – on both sides of the table, or on the same side if you’re a fan of bench seats, which I absolutely am.

Leaning, Jamuna River. Image Credit: A.Bow-Bertrand

Leaning, Jamuna River. Image Credit: A.Bow-Bertrand

Lost in Translation?

This is the third blog in a series of four in which I document my research in Dhaka and the Sirajganj district of Bangladesh. You can read the other posts here. My work was facilitated by Lepra, but all views expressed are my own.

30 words a day. That was the target. While I’m not as well-versed in Bangla as I would have liked in the final days of my stay, I have developed a potentially useless food and drinks vocabulary, as well as being able to throw about basic emotions. No doubt my everyday spatterings are loosely translated as ‘pumpkin, happy, I’ll eat fish tonight, comfortable – are you?, thanks, tasty’. Fortuitously, I have had both a facilitator and translator while working with Lepra. The former – Chanchal, a coordinator of the leprosy programme in Sirajganj was a welcome surprise, but a necessary third party during interviews able to support my official translator – Raha, who also happened to be a first year student of English Literature at Dhaka University and the regional director’s daughter.

Raha and I in the gardens of the former summer residence of poet R. Tagore. Image Credit: A. Bow-Bertrand

Raha and I in the gardens of the former summer residence of poet R. Tagore. Image Credit: A. Bow-Bertrand

Between us we completed thirty-one in-depth interviews. I’d like to add ‘successfully’ because isn’t that the popular lexical precursor to ‘completed’ but such a marker of quality is too subjective to be warranted, and for all our peaceable interactions, the data collection approaches of interviews and focus group discussions were not without their challenges. Above all, these included the two-way struggle to be heard, or rather ‘heard’ in the oscillating rapport between participant and I. Prior to engaging with the team in Bangladesh I had spoken to Cahn Vasudevan, a longtime supporter of the Colchester branch of Lepra and mental health researcher in his own right. It was his guidance that shaped my persistent focus that the people whom were sharing with me their stories and answers were just that – people. Not subjects, certainly, participants perhaps but thinking, feeling beings above all.

This trip to Bangladesh is the first solo travels I have made to a country where I cannot confidently make myself understood in the native tongue. Through no effort of my own Gallic is in my blood thanks to my Montpelier born Dad, while Spanish and some Central American dialects have been what my Curriculum Vitae most probably lists as something horrific i.e. ‘linguistic passions’. Sadly enough this is actually entirely true. I always favoured Spanish studies over say Ancient Greek, purely because of a cost-per-use attitude. I’m an aficionado of all things Hispanic (apologies eye-rollers, I am being a little facetious) and have made my entire family very aware that I wish to relocate to Mexico post-Masters, so if they want to see me again they better start banking those air miles.

Image Credit: A. Bow-Bertrand

Image Credit: A. Bow-Bertrand

Anyway, apart from sounding like an intolerable voluntourist, my motivation to speak the language of the place I am visiting is not solely self-serving – it is also inspired by a wish to be able to integrate into a locale, so that I am living there rather than just passing by, and invariably local inhabitants respond remarkably well to even the most over-excitable, and grammatically questionable, speakers of their mother tongue. In Bangladesh I wanted to resist the English speaker abroad stereotype, and was immediately thrown not only by the questionability of the assertion that English is the second language in Bangladesh (officially it is, but the competence and universality of such deviates enormously from country to country) but by my complete inability to either make myself understood or to understand the people around me without resorting to a mortifying mixture of signed actions (no, I don’t follow my logic here either) and facial muscle stretching.

Even in the London-based Bangladesh embassy I am ashamed to say that I had to resort to Google Translate to iterate my wish for them to relocate my passport and update me of the visa status. Safe to say I was put to the back of the queue (who am I kidding?!) and had to befriend (read: was taken pity on) a fellow travel applicant who was returning home to see his family over the Bangla New Year celebrations. With the entire world around me completely unrehearsed and unfamiliar, even non-verbal cues or fields of possible perception that might normally be derived from another persons’ accent, sartorial inclination or mannerisms are done away with when everything is plainly foreign.

As an avid people watcher, and constructer of improbable life narratives for strangers, I found this ignorance to social pointers frustrating on a personal level and potentially restrictive in the capacity of researcher. Asking people about their understandings of mental health, and indeed their experiences of it, cannot be plunged into blindly. While Lepra’s association had pre-established an element of trust and the information sheet and consent process soaked up any immediate practical questions, I found myself smiling inanely, nodding without knowing what I was agreeing with and generally looking so intently that I was probably just eyeballing everyone. The flipside to this potential weakness is that my total ignorance to any externally derived or verbal semiotic system avoided my interactions tipping into researcher prejudice or associative bias.

(L-R) Raha, me, Mr Shakhawat (TB Programme Officer) and Masud (office support officer and cook). Image Credit: A. Bow-Bertrand

(L-R) Raha, me, Mr Shakhawat (TB Programme Officer) and Masud (office support officer and cook). Image Credit: A. Bow-Bertrand

Perhaps this post is inspired by participant 10, or rather the reason for our having 31 rather than 30 interviewees as originally scheduled. Whether a selection error, or just incomplete patient details on the Lepra record sheets, this participant arrived, stooped over a self-fashioned wood crutch, with saliva pooling in his beard from a face half dropped from what I guess was a mild stroke. It was soon apparent that he was near wholly deaf, with his paralysis inhibiting all but the most restricted consonant sounds. The interview did not proceed as the others – the questionnaire was immediately disregarded as was any attempt to pursue the pre-defined topic guide.

The man was evidently desperate to make himself understood, clutching my hands and speaking in broken ejaculations. The majority of his narrative, or medical story perhaps, was relayed via the clinic staff in an assembly of dates, facts and diagnosis labels, all negating any reference to the psychological self that was so palpably in need of being explored and given room for in this interaction. Moving away from questions of suitability of the participant in relation to the selection criterion, it was painful to neither be able to make myself heard nor to be able to receive, verbatim, what he wished to say. I doubt he was fully aware that I neither spoke nor understood Bengali, but the complete lack of verbal offering and response afforded by the trajectory and closure of the normal research interview was an impossibility with participant 10. The session was considered closed once the clinic staff’s notes had dried up, and this was uncomfortably signaled to the participant with the monetary transaction or compensation for his travel costs, which in itself falsely pins ‘value’ to participant stories and their willingness to share.

Did I really understand anything about this individual? No. Could I sense and see his struggle? Absolutely. For felt communication is as essential to both verbal and visible communication and was something I took forward in the subsequent interviews. It is pertinent to close with this translated section from Closed Path by Bangladesh’s infamous poet Rabindranath Tagore whose language transcends national boundaries of geography and language, and continues to touch many: ‘and when old words die out on the tongue, new melodies break forth from the heart’.

IMG_6122

Can I take your photograph?

This is the second blog in a series of four in which I document my research in Dhaka and the Sirajganj district of Bangladesh. You can read the first post here. My work was facilitated by Lepra, but all views expressed are my own.

The first time was an awkward neck-crick inducing in-flight selfie with a little girl who watched A Bug’s Life on repeat (cue uncontrollable sobbing each time the grasshoppers bring their greedy ruination of the bugs) and her mother. Both also in-transit through Dubai, by the time we’d landed we had bonded over our collective Frozen screening (compulsory watching should be introduced during political question times nationally. Walt Disney: infamous cohesive gelling agent) and a selfie was deemed warranted.

From that point forward every tourist snap I took in Bangladesh was matched by at least two less than subtle phone shutter snaps and camera flashes not to mention the many, many photos taken upon request. I’m not averse to ridiculous gurning shots for my social media profiles, but the sudden level of interest in me as subject was both as hilarious as it was unexpected and unnerving. So much so that I actually questioned it.

A shop opposite the TB/Leprosy clinic in Sadar, Sirajganj. Image Credit: A. Bow-Bertrand

A shop opposite the TB/Leprosy clinic in Sadar, Sirajganj. Image Credit: A. Bow-Bertrand

When based in Sirajganj, the requests increased which is perhaps understandable given that many locals had never met nor seen a fair-skinned individual in person. Indeed, my Bangla soon developed an armoury of vocabulary based on what might be termed shouts of surprise namely ‘white’, ‘lady’ and similar that would travel up the street bringing with it an audience before our rickshaw had so much as careered past the first roadside tea stall. There is something of the Instagram fever here – the desire to showcase something perceived as ‘other’ or different for appraisal.

Mobile phone usage is as pervasive as social media and without any judgement being passed, wishing to record the novel or atypical is perhaps an innately human desire to have and to hold something that might otherwise be fleeting or difficult to memorialize without physical evidence. After all, so much photography is about capturing snippets of narrative, or perhaps more importantly, in triggering one. Indeed, this must be the reasoning behind my presence in many distant selfie snaps from sneaky youth paparazzi. I can only apologise that these records will feature a generally sweaty me – not my best angle by all accounts.

But this is not a linear activity. During my fieldwork interviews, it was the norm for clinic staff to photograph patients to support written disability assessments, presumably as a visual point of reference. These images fill iPhone camera rolls and personal cameras – stills of entire people rather than dismembered or exposed bodily segments. These photographs are identifiable and identifying, something that would rarely be seen in our own National Health Service. But there is real value in these visuals in this context. The rural population from whom we drew persons with leprosy for interview has a wildly variant education level from illiteracy to higher secondary education (equivalent to A2 levels in England).

Image Credit: A. Bow-Bertrand

Image Credit: A. Bow-Bertrand

Visual used during FGD. Image Credit: A.Bow-Bertrand

Visual used during FGD. Image Credit: A.Bow-Bertrand

What is seen, and re-seen, is the single common denominator of information dissemination in Sirajganj supported by the spoken word (necessarily barring those persons with hearing or visual impairments). As such, the basis of my focus group discussion (FGD) was a series of visual aids or themed drawings inspired by lexical codes established from the semi-structured interview transcripts with these participants. But of course, perception and comprehensions derived from the visual are not fixed. The opening activity of the FGD was a word association exercise, which invited participants to express states or labels associated with the image they were witness to. For instance, a line drawing of a Singer sewing machine garnered reactions of ‘sewing machine’, ‘weaving’, ‘income’, ‘employment’, ‘asset’, ‘own home’, ‘independence’, ‘hard with clawed fingers’, ‘heavy’ and ‘job’.

Image Credit: A.Bow-Bertrand

Image Credit: A.Bow-Bertrand

VIsual aids used for FGD ordering activities. Image Credit: A.Bow-Bertrand

Visual aids used for FGD ordering activities. Image Credit: A.Bow-Bertrand

So too, the clinic staff’s photographs of the participants with leprosy do not tell a singular, nor comprehensive, narrative of the individual depicted. From the nascence of a research question, my focus has been on the experiences of psychological distress amongst this target populace, or rather the awareness of limitations or challenges to the mental health of the individual. For many of the participants we encountered, disability is measured according to the biomedical model of grading as approved by the World Health Organization (Grade I for anaesthesia to extremities, Grade II for shortening of limbs and fixed or mobile clawing) with diagnosis based on physical, external examination. There is a checkbox for ‘visual disability’.

However, mental health here, like mental health anywhere in the world, is rarely ‘visible’. This idea proved to be both difficult to explain to participants versed in this system of disability measurement and for whom understandings are mainly composed from received images rather than from internalized understandings of the self. They are more familiar with the disability gradation of a nose as ‘depressed’ than as a lexical term for a psychological state. The closest to participant self-awareness I discovered was a self-reflexivity in the name of their faith, largely Islam with some 90% of Bangladesh Muslim. The dedication to individual cleansing and improvement in accordance with Islamic doctrine and the affiliation with a deity who is figuratively invisible has useful and potentially productive parallels with investigating awareness of, and experiences of, psychological health.

In profile. Image Credit: A. Bow-Bertrand

In profile. Image Credit: A. Bow-Bertrand

I would be wary of directly inviting participants to parallel their faith-based introspection and worship with an understanding and prioritisation of mental health and self-care, but the two are not so wildly irreparable. What was apparent from my research is that while there is little resistance to mental health per se, this openness is partly owing to its nature as an intangible entity. Stigmatisation of persons with leprosy is almost always related to the visible deformities or physical handicaps associated with late diagnosis and challenged disease management. However, national provision for mental health care and awareness of it as a priority within a multisectoral health system is all but non-existent and resource-poor.

Perhaps the increasing use of interactive healthcare and research techniques such as PhotoVoice in which participants are encouraged to photograph scenarios or things in their everyday life that represent the research focus, could be applicable to mental health work. Just because mental health is difficult to see, does not mean that it cannot be helpfully considered manifest in the physical – an image of a bed perhaps representative of anxiety-induced insomnia, or as a vast white island of security for the depressed patient. I am more than happy for this understanding to be free from labels of the ‘mental’ or ‘psychological’, providing an understanding and prioritisation is established for each person in their own manner.

If this means starting with selfies and inviting a conversation around the resultant medium, then this is something I’ll willingly keep posing in the name of.

Image Credit: A.Bow-Bertrand

Image Credit: A.Bow-Bertrand