Giddens Risk and Responsibility – Is risk still a relevant analytical category? By Cornelia Guell

In our March meeting, we discussed Anthony Giddens’ paper ‘Risk and Responsibility’ (Modern Law Review 62(1), 1999). This very readable paper had originally been delivered as a Chorley Lecture at the London School of Economics and Political Sciences in 1998, and was based on material from ‘Risk Society: The Context of British Politics’ in J. Franklin (ed), The Politics of Risk Society (Cambridge: Polity Press, 1998). Giddens summarises sociological thinking – his own and Ulrich Beck’s – on risk in contemporary society, particularly as it is evoked and examined by science. I had chosen it for our last meeting to discuss if we have conceptually moved on from risk as a useful theoretical notion, despite still (or even more so) researching behaviours as risk factors, or chronic conditions of which we all might be at risk.

Giddens suggests that ‘risk society’ experiences constant change, which is particularly accelerated by scientific discovery and technological innovations, and this leads to growing uncertainty. As scientific knowledge increasingly seeps into the public domain, we, as consumers, struggle to keep up with scientific inquiry and its “constant revision of claims to knowledge”, while science has its structures and techniques (evidence reviews, confidence intervals etc.) to manage uncertainty. He muses, for example, that we have been exposed to a variety of scientific claims over the years regarding both the health benefits and harms of a glass of red wine, and are none the wiser. This is certainly not a concern confined to the 1990s. More recent additions of complex, ambivalent and often contradictory health evidence that has entered the public consciousness includes latest studies on ‘good’ and ‘bad’ fats (there might be ‘good’ saturated fats after all), sugar versus fat (is a calorie a calorie?) and the benefits or harms of statins, to name a few. In Giddens’ example of beef, risk from BSE has been replaced by risk for cardiovascular disease and cancer. A further acceleration of this public uncertainty might have been unforeseen by Giddens in the late 90s; many medical publications now are accompanied by their own press release, and ideally, a few headlines and visits on breakfast radio or TV. In fact, impact of scientific research seems to be measured as much in media appearances and social media shares (Altmetrics) as in influence on practice and policy. Other prominent scientific fields such as climate change have undergone similar public jostling within the scientific community, and while consensus has largely been established on causation and extent of the problem, its remedy is much less subject to a majority view – both among scientists and the public. Can nuclear power have a role in weaning us off fossil fuels or will it ultimately just add to the human-made assault on our environment? Risk is communicated ever more prolifically in the public realm, we concluded, but without the tools to make sense of it.

Giddens states that we live in a technological world “which no one completely understands”, and in which “we stopped worrying so much about what nature could do to us, and we started worrying more about what we have done to nature”. Giddens describes this as a transition from external to manufactured risks, alongside new ways of negotiating and managing such risks. From the start, this paper’s Blairite undertone sparked a much wider discussion of the historic and political context of our analytical categories. As an example of shifting responsibilities alongside risks, Giddens picks another health example. He suggests that while many illnesses result from both unhealthy lifestyles and unhealthy environments, liability, as he calls it here, should not remain with society collectively. Instead, individuals should live responsibly, for example avoid smoking, but he does not refer back to his earlier points; we might well feel responsible for our own health but receive complex and sometimes contradictory advice on how to exactly go about making the right choices. More widely, the trouble of keeping up with scientific claims might apply as much to the collective as the individual. Bold public policy choices such as a tax on sugar-sweetened beverages are not easily helped by complex, contested and partial scientific evidence when addressing strong economic and political resistance.

Finally, returning to our point of discussion as to whether ‘risk society’ is a slightly outdated analytical lens, we also discussed the range of social theoretical writings on risk, from Mary Douglas to Michel Foucault, Deborah Lupton and Ulrich Beck. All offered very different perspectives and conceptualisations of risk, and we concluded that there might still be room for new conceptual re-imaginings. Sharing our own examples, I talked about my research on aspirations of healthy ageing. Chronic illnesses seemed less a concern for my study participant who had already experienced diabetes, cardiovascular disease or cancer than risk of dementia, still waiting on the horizon. Therefore, being socially and mentally active was as important in their strategies of leading healthy lives as being physically active. Similarly, in Sarah Hoare’s current work on dying, articulations of risk are closely linked to taking control. Depending on the perspective of those dying and their family and health professionals in charge, the home and the clinical space are respectively regarded as risky environments. This includes the space of the ambulance which, from a hospital health professional’s perspective might be seen as risky on the way to the home upon discharge (still technically in their care) but less so on the way to the hospital (when not yet under their responsibility). Perhaps what is needed is freeing our analytical category from ‘risk’, but retaining our empirical focus on exploring risks as these are (re)produced, (re)prised and (re)presented in our society.

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Dying inequitably? A report of the 2014 BSA Death Dying and Bereavement Symposium by Sarah Hoare

I was excited to attend the 2014, and my first, Death, Dying and Bereavement Symposium. Convened by SAHN blogger Erica Borgstrom (University of Cambridge), Julie Ellis (University of Sheffield) and Kate Woodthorpe (Centre for Death and Society, University of Bath) the symposium is a meeting of the British Sociological Association (BSA) Social Aspects of Death, Dying and Bereavement Study Group. I hoped by attending I would meet other death scholars, immerse myself in current thanatology issues and leave reignited about the possibilities of my research. I was not disappointed.

With a focus on inequality and social difference the scope of presentations was exciting and broad; we considered death in North America and Africa, in prisons and in hospitals and explored the extent of inequalities derived from sexuality, ethnicity and diagnosis. There were presentations on organ donation, military deaths and photographic memorialisation of stigmatised groups. Together with an intimate audience the day encouraged discussion and created a positive group atmosphere. Delegates arrived from across the UK, Germany and Canada and represented charitable organisations and academia, with scholars from a diverse range of fields including anthropology, sociology, psychology, and art history.

The day started with a presentation by Elizabeth Rolls (University of Gloucestershire) on the specific challenges faced by those bereaved in a military death. As well as discussing the cultural differences of these deaths compared to civilian ones, Dr Rolls addressed the practical consequences to forces families and the often obligatory transition to civilian home life. Marian Peacock (Lancaster University) gave an impassioned talk on death in prison where, as a consequence of neo-liberalism, there has been a growth in the prison population and the proportion of prisoners who require palliative care. Such care in prisons tests assumed notions of a good death and sets ideas of comfort and dignity against those of discipline and reform. The morning session concluded with a presentation by Erica Lawson (University of Western Ontario) on the role of bereaved black mothers in maternal politics and how they articulate their grief into a tool through which to bring about social change.

After a productive and friendly networking lunch Jessie Cooper (University of Liverpool) started the afternoon session by inviting us to consider the role of ethnicity in UK organ donation. Dr Cooper showed how decision-making between ‘problematic’ minority ethnic families and healthcare professionals was hampered by inaccurate amalgamations of ethnicity and religion and was resolved by technological and religious brokering. Emily Moran (University of Cambridge) explored the inequalities in care provision according to cancer or non-cancer diagnosis using empirical data from the CAPE (Community Care Pathways at the End of Life) Study and presented evidence to suggest that patients with a non-cancer diagnosis were less likely to receive adequate advance care planning.

Next we reflected on the impact of sexuality and gender on end of life care in a presentation by Kathryn Almack (University of Nottingham). Dr Almack showed how stigma was still a feature in the older LGBT community as individuals’ health deteriorated and relationships and identities had to be redrawn to accommodate increasing care needs. Ruth Evans (University of Reading) presented on the methodological complexities of doing death research in a different cultural context. Her experience of conducting a study in Senegal encouraged much audience discussion about how we could all be more reflexive to address the impact of our own cultural background on the research process. Finally, Lauren Summersgill (University of London) concluded the day with a paper exploring the role of photography to memorialise the dead. Focusing on two photographs of AIDs and police-death victims respectively, Summersgill argued that the photographers’ work was an act of care to the deceased. Her paper sparked a lively debate, and was a brilliant way to end the day.

Details of the BSA DDB group can be found here: http://www.britsoc.co.uk/specialisms/DDB.aspx
Sarah Hoare is a PhD student at the University of Cambridge studying end of life care issues and hospital admissions.

Experiential Knowledge, Public Health Evidence, and Health Inequality by Erica Borgstrom

Jennie Popay (Lancaster University) recently gave a talk on what experiential knowledge can contribute to a public health in relation to understanding health inequalities. Her premise is that understanding how people make sense and live their lives should be an integral part of public health research. Valuing experiential knowledge as evidence enables researchers to reframe their questions. This will provide the potential for context-appropriate solutions and the ability to shift the moral tones of current public health discourses.

The first part of her talk outlined how experiential knowledge can be considered as evidence. Popay reflected on philosophical literatures that describe knowledge as being about practical wisdom that can explain the contingencies of everyday life. She noted that how people make sense of and present their experiences is often very systematic and fits within the logic of their lives, even if it does not match the logic of (positivists) researchers. She stressed the need to trust that people are skilled interpreters and translators of their experience. With this definition, it is unsurprising that social scientists are more readily willing to accept knowledge as evidence as they typically use stories as data and their roles are to “excavate the stories of the everyday”.

The relationship between experiential knowledge and evidence within public health is an unequal one. There is a hierarchy of evidence, it was argued, that privileges quantifiable data (especially if collected in certain ways). For many of the SAHN members in the room, this dominance is often a lived experience that comes across in our engagements with health policy and in the research projects we work on. A useful way of framing the issue as she presented it was not to think about the validity of experiences, but in the purpose that these experiences have in helping us to understand the issues at hand.

In order to illustrate her case, Popay looked at several case studies where qualitative methods, social theory, and/or public engagement were used to understand health inequalities. For example, she drew on Hilary Graham’s research that describes smoking behaviour as an example of coping within their life contexts and asserting a positive social identity. Rather than negatively moralising such behaviours, as public health research and policy can do through an emphasis on individual responsibility, exploring experiential accounts helps to connect the actions with the material and social contexts in which it is being done through which positions of moral worth and control can be reframed.

Her talk is reflects a growing interest in experiential knowledge as evidence. Social scientists working within medical fields are uniquely placed to collect and make sense of these forms of knowledge as evidence. Popay suggested thinking of innovative ways in which this can be done, such as doing public sociology, to make use of lay understandings early on in research projects. Many of the non-social scientists in the audience may have left the seminar unconvinced about the role and ability of experiential knowledge to make sense of contemporary public health problems. For those of us with whom her talk resonated, the challenge is for us to reflect on the ways in which we engage with and represent people’s experiences and at what point we incorporate their views into research design and analysis.

-Erica Borgstrom, anthropologists based at the Institute of Public Health, University of Cambridge. Follow on Twitter @EricaBorgstrom

Patient Voices and Social Movements: The Crossleys’ on Habitus and the Antipsychiatry Movement by Guy Shefer

In our October session, we discussed two papers which are both related to the antipsychiatry and mental health ‘survivors’ movement (unlike references to survival of other illnesses such as cancer, the term ‘survivor’ in this context refers to people who see themselves as survivors of interventions by psychiatry). The main paper we discussed was ‘Patient’ voices, social movements and the habitus; how psychiatric survivors ‘speak out’’, by Michele and Nick Crossley. We also discussed Nick Crossley’s paper ‘R. D. Laing and the British Anti-Psychiatry movement, a socio-historical movement’.

We started the discussion with a brief overview of the habitus theory. I introduced its aim to incorporate both structure and agency by suggesting that an individual action can be improvised and skilful but is never entirely unstructured. Rather it is influenced by that person habitus. The habitus, to use Nick Crossley’s words, ‘is the active residue or sediment of his past that functions within his present, shaping his perception, thought, and action and thereby molding social practice in a regular way’. It consists of lifestyle, values, expectations, dispositions, schemas, forms of know-how and competence, all of which function below the threshold of consciousness.

While the authors embrace Bourdieu’s habitus theory, they argue that Bourdieu ignored the generative role of agency and the creativity and forms of innovation in practice, which generate  ‘transformation of habits’. Their paper about patients voices is a demonstration of how such transformations occur and in order to explain this transformation they refer to what they call oppositional habitus.

The paper compares two collections of testimonies of people who were diagnosed with mental illness and who mainly wrote about their encounters with the psychiatric system. The first book, ‘The plea for the silent’ is from 1957 and was edited by MPs. It is based on letters and complaints which they received from people in their constituencies who were detained in mental hospitals at the time. The second, ‘speaking our mind’ is from 1996 and is edited by and includes contributions from people who define themselves as mental health ‘survivors’. The Crossleys point to the various ways in which these two texts demonstrate the huge transformation in how people with mental illness present their arguments about mental illness and its treatment, and how their expectation differ in terms of how what they say is to be accepted by the readers.

The paper suggests there is a series of considerable differences between the two books and these can be found in their titles, content, language, presentation of the contributors and so on. All these differences depict the new ‘patient voice’ as much more confrontational, collective, unapologetic, phrased with reference to more general social categories like gender or race. The new voice, the authors argue, challenge the authority of professionals to diagnose and treat them in such a way that one can identify a whole new critical discourse on Psychiatry emerging. The authors use habitus theory to explain how several different social and political processes helped transform the patients’ habitus, voice and expectations in this regard.  The second paper is a more historical analysis of the origins and early stages of the antipsychiatry movement as it was developed by some leading psychiatrists, especially R.D Laing in what Nick Crossley calls the ‘revolt from above’.

One of the issues we discussed was whether the recent, more critical voice that the authors identified in the 1990s book is ‘the’ new voice of mental health patients (or at least, as they argue, their effective voice) or rather it is just a voice and not necessarily representative one. Many of us in the group felt that while it is definitely an important voice, there are other contemporary voices of people with mental illness who, for example, may not challenge the authority of professionals to diagnose and treat them but focus on less radical aims of improving the communication with psychiatrists. Some commented that it may not necessarily be a linear process but one that may occur in ‘waves’. The paper (written on 2001) reflects a voice that was maybe more dominant in the 1990s while today the patients’ voice(s), or at least some of them, may be less radically critical(?).

We also discussed the role of health sociologists and anthropologists in the current era, on the background of the more ‘revolutionary’ work of Laing or Goffman. Some people mentioned the work of some of contemporary academics who are involved in a more militant ‘action research’ than many of us,  although some thought  that not all researchers may be up for what it requires to be involved in this kind of action research.  In response to this point participants also pointed to the important role of anthropologists in exposing  and capturing the more mundane, nuanced everyday problems or concerns that people may have with regard to some aspects of their life, concerns that may be not traumatic or life changing enough to induce them for independent action but still deserves research attention. In this regard different views were expressed in regard the issue of the health anthropologists’ role in ‘giving voice’ to vulnerable population where some thought this may be part of the anthropologist role in some contexts, others thought such a perceived role as paternalistic and unrealistic.

Finally we discussed some similarities between the trends that were described in the paper regarding people with mental illness to other groups such as people with autism or, in a different way, to people who fight cancer.

Wisdom from a Writing Workshop: Plans, Practices, and Places to Go by Victor Roy

On September 24th, I joined with a fellow tribe for a one-day workshop on writing techniques. The tribe: social scientists (PhD students and post-docs) with aspirations of writing longer pieces related to health and illness.

I’m writing to share what I learned.

Multiple pressures confront us. The juggle of two or three research projects running concurrently. A brain divided between managing research and putting pen to paper. The challenge of avoiding poor writing and reaching for our best voice.

To take on these challenges, we used the day to explore ideas and practices related to writing. Matt Lane (Post-Graduate Skills Training Officer for U of Cambridge) led the morning session with interactive lectures and small group work, with the afternoon focused on our own individual writing projects within a group setting.

A few key pieces of wisdom emerged.

Planning to write
In preparing for battle I have always found that plans are useless, but planning is indispensable. – Dwight E. Eisenhower

Eisenhower’s view of battle is apt for writing. Many inputs go into writing a piece: finding a topic, defining a research strategy, executing the research itself, and writing smaller, cumulative pieces. Yet taking the time to plan these inputs often escapes us. “Just write!”, says the self.

But a little planning can indeed be indispensable. Lane encouraged us to view our writing projects beyond the completion date: what does wild success look like? What are all the things that need to get done to achieve this success? And perhaps most importantly: what’s the next immediate action you can take? Making this process concrete seems obvious, but is often a step that writers skip.

When it comes to finally composing a piece, Lane encouraged us to “write in layers”. Build the intellectual and rhetorical architecture, whether via an outline or topic and transition sentences. As we build the layers, Eisenhower’s voice returns: earlier plans for the writing often will get replaced with a new sense for direction. As the architecture of the argument and piece is built, attending to the body of paragraphs will come more naturally.

Practices for the moment
Before a run, I usually stretch for a few minutes. But just before starting to write, my usual thought is: let’s get started! Lane encouraged us to use “writing warm-ups” for 5-15 minutes just before digging into your main writing project. A warm-up prompt could be what do I want to find out today? what did I learn yesterday? what was I thinking about in the shower or over breakfast? A few minutes of warming-up activates the brain. I’ve been trying this approach since, and it’s been working!

The next practice on the list: time management. Often, when thinking about writing a longer piece, many of us imagine blocking out a week and large chunks of time during the day. But this perception can backfire. With the thought of large blocks of time, distractions more easily infiltrate the day. Uninterrupted sitting in front of the computer goes from minutes to hours. A long writing session might end with only a few minutes of real productivity. Instead, write in smaller chunks of time. Take a break after 45 minutes of focused attention. Set micro goals – completing a paragraph or section, for example – and have the discipline to walk away from the writing for a short break before returning to tackle the next goal.

Finally, in the afternoon, we tested “writing groups” to work on our individual projects. Writing in groups allows members to verbalize goals, hold each other accountable, and act as a support group to work through road-blocks. While writing alone is the norm, having people around can make the process more fun and productive. I had one of my most productive afternoons of writing in weeks!

Places to go for more resources

Spending intentional time to reflect on writing practices carries many benefits, such as figuring out new practices and habits worth trying out. The other benefit are the new resources that can be used for further exploration and learning. Here are a few places to go —

Check out a Cambridge writing group
How to Write a Thesis, Rowena Murray
The Craft of Research, Booth et al.
Getting Things Done, David Allen

For some inspiration, check out one of my favorite places to go: Brainpickings. Search for pieces on writing, and you’ll be sure to find many gems.

Victor Roy is a second year PhD student in sociology and political economy as a Gates Cambridge Scholar. He is also an MD candidate at Feinberg School of Medicine in Chicago as a Paul and Daisy Soros Fellow for New Americans.

Andrew Lakoff’s The Private Life of Numbers: Pharmaceutical Marketing in Post-Welfare Argentina by Erica Borgstrom

July’s session discussed assemblage theory based on The Private Life of Numbers: Pharmaceutical Marketing in Post-Welfare Argentina by Lakoff (2005) from the Global Assemblages: Technology, Politics and Ethics as Anthropological Problems edited collection by Ong and Collier. This is an edited collection I’ve been meaning to read for some time as several years ago (ahem!) several anthropology seminars I attended raved about the usefulness of the global assemblages concept to analyse bioethics; whilst I had read the introduction and select chapters, I had yet to read Lakoff’s work. It also provided an opportunity to think about how assemblages may or may not relate to platforms (discussed in May) or actor network theory (discussed several months ago).

We started the discussion with an overview of what assemblage theory is. As both the introduction to the book and Lakoff’s chapter were rather sparse in their descriptions of what an assemblage is, I turned to Manuel DeLanda’s (2006) A New Philosophy of Society: Assemblage Theory and Social Complexity for some inspiration. Assemblage theory can be described as a form of realist social ontology in which entities, as wholes, are created and stabilised from a heterogeneous group of parts that do not define the essence of the whole but are instrumental in understanding the whole. It can be used to describe both ‘natural’ and social entities, as an alternative to describing things as organic totalities. In this way, assemblage theory is seen to cut across the nature-culture divide. It provides a way to describe entities that exist not because of the proprieties of their parts but because of how the parts interact. This approach lends itself to looking at practices and enables a sense of dynamism in descriptions of entities as different parts work towards (or against) stabilising the whole.

It was after this introduction that we discussed the similarities between assemblage theory and actor network theory (ANT). The group felt that they were similar in their realist approaches and focus on practices but that the former provided a more flexible way of analysing and describing ‘the social’ beyond people. Several members considered assemblage theory as more accessible to non-social science audiences as ANT has a strict set of analytical terms that people felt could be alienating. Throughout our discussion, it was unclear if assemblage theory could allow for non-human entities to have agency, especially as the numbers within the chapter discussed were used and made sense of by humans and were not written as if they themselves had power. Several people felt ‘the loop’ was incomplete in Lakoff’s discussion as patients and their conditions were viewed as absent; however, others suggested that with either form of analysis, boundaries had to be defined and that the skill of the researcher is to define these and the perspective they take.

Lakoff’s chapter describes the pharmaceutical market in Argentina through a discussion of how numbers about prescribing habits and sales are used to inform the ‘gift relationship’ between doctors and pharma reps, which in turn shapes the ‘market’ for such products and knowledge. The first part of the chapter focuses on the unique history of drug development and sales within Argentina, which has enabled the kind of relationships and markets he later describes.

A description of this gift relationship could entail writing about what each party receives and is obliged to give, the timescale of the relationship, and the character of the relationship. Instead, by taking an assemblage approach, Lakoff describes how the access to numbers about prescribing patterns are used to reformulate the relationship between doctors and reps, through a form of auditing, that enables reps to know and shape their local territories and market share. The constant monitoring of the prescription patterns and incorporation of this information in their dealing with doctors, including deciding which doctors to approach and how, demonstrates the reflexive nature of the market and the disciplining technology of these numbers. In these accounts, we can see how Lakoff is also influenced by Foucault’s writing on governmentality, but rather than from a ‘state as powerful’ position he uses the concepts to describe a process he calls ‘neoliberal epidemiology’, which is specifically about the (nearly) absent role of the state and the focus on market rationality.

From his writing, neoliberal epidemiology is about the site of the data used to understand a health situation – in this case, the prescribing data. It is ‘epidemiological’ in that is a form of knowledge about health practice that guides expertise. It is neoliberal, not because of the focus on individuals, but because it focuses on a market rather than a population. The data described is itself a commodity within the market it is used to describe. He argues that it is the way this data is used and plugged into the gift relationship that explains the ‘psycho-pharmaceutical market’ within Argentina rather than relying simply on an understanding of increased/changing prescribing due to social and economic crises and changes in regulation.

There was considerable debate about whether or not Lakoff’s text could be read as critical of the pharmaceutical market in Argentina. One perspective was that the realist approach adopted by Lakoff means that he is presenting it ‘as is’, without an opinion about whether or not the way it operates is ‘wrong’. Others suggested that by labelling it as ‘neoliberal’ it was an implicit critique as that is usually how the term is used. Similarly, the Foucauldian references and discussion of power lead others to suggest that the text was not devoid of critique by outlining how the ‘free-market’ works even if adopting a realist analysis. It was noted that Lakoff’s informants were the very people he was writing about and that in order to maintain his rapport and respect for them, he could not be overly critical of what they do.

This lead into a discussion about if and how the chapter differs from expose-style journalism. Overall the text was received as accessible, easy-to-read, ‘a good story’ but by not including any overview of methodology there was no sense of rigour. Previous SAHN reading groups have revolved around debates about what makes ‘good science’ and transparent and robust methodology was one of the key elements group members felt strongly about. Lakoff’s descriptions of how he came across the numbers (which were rather absent in the text) were seen as off-hand and scant. For those not familiar with conducting ethnographic fieldwork, they had no sense of how he could go from collecting data to his analysis. Attendees expressed a desire to represent their own methodology and techniques in their writing, but most acknowledged that Lakoff could be given some leeway as the chapter was part of an edited collection aimed at anthropologists and therefore could assume the audience had certain knowledge about how this kind of research is done. A similar conclusion was drawn about his lack of reference and discussion of classic anthropological texts that could speak to his data and analysis.

Towards the end of our discussion we touched current concerns about BIG DATA. Lakoff’s analysis demonstrates how knowledge is turned into expertise and the social and material ‘price’ that data can command. People expressed similar concerns to Lakoff’s informants about not knowing who all has access to different, and perhaps intimate, pieces of information and the ways in which they will employ that knowledge. Some felt that it was shocking that companies had more data than the State, whilst others advocated that this was normal and that people should not presume that governments have control over numbers. Compared to similar literature within anthropology about audit culture, the use of describing the practice in terms of assemblage was the apparent flattening of the hierarchy were different powerful actors could be seen to negotiate, as may also be the case with BIG DATA.

Overall, the reading group felt that adopting an assemblage approach may be an accessible form of analysis (compared to previous theories and methodologies explored by the group). However, people noted that in their own work, more writing would have to be committed to describing details of methodology and linking the discussion to other theoretical and topical debates. Lakoff’s text was interesting and people felt that in order to have a fuller sense of his analysis one would have to read his book under a similar title.

Revisiting Erving Goffman’s Stigma: Notes on the Management of Spoiled Identity by Cristina Perez

In June, we decided to revisit Erving Goffman’s Stigma: Notes on the Management of Spoiled Identity, first published in 1963. We focused on the first of five essays (Stigma and Social Identity), in which Goffman begins the work of defining what he means by ‘stigma’, and his sociological theory. Although the continuity between Goffman’s essays in Asylums (published two years earlier, and based on mid-20th century ethnographic fieldwork in a mental institution) and Stigma is apparent in the focus on mental health as a stigmatising condition, Stigma is not itself based on original research, but is rather a review of the literature – defined somewhat idiosyncratically. The book starts with a letter to an agony aunt, and he illustrates each point with examples drawn from newspapers, magazines, autobiographies, and (finally) published academic case studies.

Goffman variously defines stigma as ‘the situation of the individual who is disqualified from full social acceptance’ and any ‘attribute that is deeply discrediting’, although he tries to nuance this latter definition by indicating that, rather than focusing solely on the stigmatised ‘attribute’, what we really need to understand is the social relationships that transform a simple characteristic into a fully-fledged stigma. In other words, we need a ‘language of relationships’, which moves beyond the individual and emphasises the socially-contingent nature of stigmas – rooting the concept in sociological concerns. However, another key element of stigma, as Goffman understands it, is that the bearer must have some sort of concern for what others think, and must internalise the social norms to which they fail to conform (part of what Goffman terms an individual’s ‘moral career’). In this way, stigmas retain both psychological and sociological components.

It seems as though Goffman wants it both ways: he indicates that stigmas are in some ways contextual and relational (a characteristic that attracts negative attention and discrimination in one circumstance, may in fact be positive or normative under different circumstances), but then he turns around and emphasises the fact that certain characteristics are viewed so negatively that (in a particular sociocultural milieu) they will always be abnormal and ‘deviant’. Despite this nod to deviance, Goffman tries to distinguish ‘stigma’ from the sociology of deviance that, though dominant at the time, he felt was too broadly defined. Although he draws heavily on examples relevant to the study of health, his theory is far from restricted to health-related matters – almost anything can be a stigma.

Goffman defines three, primary typologies of stigma: ‘abominations of the body’ (physical disabilities); ‘blemishes of individual character’ (‘moral’ failings); and ‘tribal stigma’ (race, religion, ethnicity). Examples of stigmas include everything from being born without a nose or having had a limb amputated (immediately visible disfigurements/disabilities) to urinary stricture, divorce, or homosexuality, which are more easily hidden. ‘Stigma’, as defined by Goffman, blends physical and mental, voluntary and involuntary, visible and invisible, in ways that are not always convincing. Perhaps if ‘stigma’ were more narrowly-defined in terms of health conditions it would be most useful, but Goffman seemed at times to stretch it too far. It also wasn’t always clear how ‘stigmatisation’ differs from other, related processes, like ‘dehumanisation’ or ‘prejudice’. It does capture the more visual element of being ‘marked’, but then not all stigmas are visible, and we weren’t sure how much it helped us to understand something that other concepts can’t.

While the use of terms like ‘spoiled identity’ and ‘socially discredited’ might imply some sort of judgement of the society that imposes them, they also focus attention on the individual and their potential culpability as the stigma-bearer. One strand of criticism within modern sociology is that Goffman’s theory focuses on the stigmatised rather than the stigmatisers – this has variously been criticised for framing stigmatised individuals as ‘victims’ (thereby stripping them of agency); for ‘victim-blaming’; and for not drawing enough attention to the broader, social-structural concerns that lead to stigmatisation.

The theory of stigma is in keeping with Goffman’s broader body of work. As a sociologist, he was primarily interested in micro-level interactions, especially in how individuals present themselves to others as actors in different situations (which he saw as analogous to theatrical ‘stages’). In Stigma, we can clearly see this concern with how people convey or conceal ‘social information’ about themselves, particularly in relation to stigmatised individuals’ attempts to hide their stigma and reduce their stigmatisation – a process of constant identity management. This so-called ‘dramaturgical’ approach has today fallen out offashion, and Goffman’s theory now tends to be retrospectively associated with the dominant sociology of deviance, from which he tried to so hard to set himself apart.

Although some of us liked it more than others, there was a general sense that Stigma wasn’t speaking to SAHN. Given that some of Goffman’s examples of stigmas, though colourfully illustrated, had not aged well, some of us wondered if it would be a more inspiring read if these were updated? What about problematising and updating his theory of stigma, by blending it with ideas from biopolitics? This would address the fact that power dynamics are, in general, conspicuously lacking from Goffman’s account. Some SAHN members felt that this would make it a more interesting topic for social scientists – perhaps what we need is a more explicitly political and critical approach. As others pointed out, in health research, stigma itself has become something to diagnose and treat or ‘cure’. It has become the object of intervention. Within public health (arguably a discipline that attempts to blend social, behavioural and clinical sciences), there seems to be a whole stigma industry, which serves a very practical orientation: operationalising, measuring, and acting to minimise stigma. Stigma is seen as a problem to be solved. Whereas the original text left some of us feeling flat, exploring the implications of this angle seemed to capture more of our imaginations…

Given the slightly tepid reception, I should take a step back and explain why we re-read Stigma. We wanted to link the SAHN discussion more closely with the Qualitative Methods in Health Research workshop series and, more specifically, with the related survey that we carried out last year (for details, see here). We asked experts working in health-related areas of research (both social scientists, as well as those with a more biomedical orientation) for recommended readings that brought theoretical insights into health research. We received about 300 recommendations. On the short list of ‘multiply recommended’ resources, Stigma featured especially often, usually justified in terms of its tremendous influence.

Although we all recognised this influence, the main issue that we struggled with throughout the discussion was whether Stigma is still relevant to researchers like us today. Conceptual awareness of stigma now stretches far beyond the social sciences. Our understanding of what it is to be stigmatised (usually in relation to exclusion, marginality, and discrimination), is not limited to academic discussions, but regularly mobilised in popular culture. Because of this familiarity, it just wasn’t as exciting as some of the other readings we have discussed. Although we recognised that Goffman’s essays catalysed this widespread interest in stigma, most subsequent authors have tended to diverge substantially from his initial text. Since we have moved so far from Goffman’s text, we wondered whether we even still needed it.

I think we ended by agreeing that we do need Goffman’s account, inasmuch as it’s a starting point. As one of us pointed out, just as the ‘culture’ concept is no longer sufficient explanation for health-related (or any other) behaviours, neither is ‘stigma’ – it might be a useful start, but without critically unpacking and deconstructing the term, it’s just not enough.

Keating and Cambrosio’s Biomedical Platforms by Richard Milne

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The term ‘platform’ pervades health policy and practice. Five minutes of googling pulls up examples including the “UK Dementias Research Platform”, the “Regenerative Medicine Platform”, the “EU Platform for Action on Diet, Physical Activity and Health”, the Fit for Work “Platform for Health and Wellbeing” the “ Platform for Better Oral Health in Europe” and even the “Accenture Public Health Platform”. In many of these settings, ‘platform’ seems to have replaced ‘initiative’, ‘programme’ or even ‘network’ to include collaborations for research and practice, data sharing frameworks, discussion forums and both software and hardware configurations.

Despite their prevalence, platforms are not widely recognised as part of the vocabulary of the social sciences. In this platforms contrast with networks – also used widely within the practice of research and clinical care, but a concept with a clear (although plural) sociological meaning. This month’s SAHN discussion paper, by historian of science Peter Keating and sociologist Alberto Cambrosio, represents the most significant attempt to analyse what both platforms are, where they come from and what work they do.
The paper presents a shorter version of the argument developed in more detail in their 2003 book Biomedical Platforms: Realigning the Normal and the Pathological. It sits broadly within a lineage of work within social studies of science and technology that seek to prioritise neither social nor the technological explanations, but rather consider them as coproduced. This STS tradition includes work in actor-network theory, work on sociotechnical networks and studies of infrastructure and standardisation, as well as discussions of assemblages, rhizomes and the like. Reflecting this genealogy Keating and Cambrosio emphasise the heterogeneity and interconnected nature of the platforms they describe, defining a platform as “less of a thing than a way of arranging things” which appeals to them “because of its semantic reach that covers natural and artificial entities, material artefacts and their blueprints, technical and political, material and symbolic referents”.

This work on biomedical platforms follows on from Keating and Cambrosio’s earlier study of monoclonal antibody technology. In the process of this work they identified a new instrument – the flow cytometer – as an object of particular interest, and at heart this work is the study of the development of this new technology and its ‘translation’ into clinical practice. Flow cytometry is central to the new platform of immunophenotyping which emerged to challenge existing pathological practices based around morphology. Their work is an excellent history of immunophenotyping and of the role of regulation in stimulating the innovation of routines and standards for the antibodies, reagents and interpretation of the knowledge generated by the new platform and thereby enabling it to cohere across sites.

Keating and Cambrosio situate the detail of the immunophenotyping platform in relation to the post-WWII emergence of biomedicine, in the process developing one of the best worked through discussions of biomedicine. They argue that biomedicine represents a new relationship between the normal and the pathological and between biology and medicine in which the answers to the questions that each asks are immediately available and relevant to both – without either biology of medicine being collapsed into the other. For example, they describe how immunological cell markers identified by biological research have immediate relevance within the practices of immunology and oncology, but retain their biological meanings. Keating and Cambrosio show how biology and medicine have become institutionally united in the post-war incorporation of biological research into medical training and architecture. They draw on the architecture and institutional organisation of hospitals built in France in the 1970s and 1980s to show the introduction of ‘platform hospitals’, in which the historical compartmentalisation of hospitals by disease or body part is resituated on top of a shared space of ‘biomedical’ technology.
The connection between the epistemological, social, historical, material and spatial constitution of biomedicine is persuasive and, for me, a valuable contribution to how we think about the organisation of contemporary biomedicine and the nature of biomedical innovation. Perhaps Keating and Cambrosio’s most valuable contribution is in highlighting the creativity and innovation associated with the routine and mundane, particularly in the establishment of the regulatory conventions that enable a platform to cohere. As a group, we liked the ability of a platform approach to provide us with a story of how things came to be ordered how they are – as opposed to networks which seem to offer a snapshot or cross-sectional view of the arrangements of actors. However, we also felt that platforms suffer from some of the same flaws as networks, including an inability to account for power relationships between actors, or to capture the motivations of the people involved. Finally, following Strathern, we wondered about the edges of platforms, and what lies beyond the platform edge.

Hospital St. LouisPlan A4:Mise en page 1

The Hospital St Louis, Paris – one of the hospital discussed by Keating and Cambrosio, with the towers built on a shared platform, next to the older pavilion style hospital

Hospital in Caen
The hospital in Caen – a platform hospital

Supermario
Super Mario Brothers – a different type of platform?

 

Michael Taussig’s Reification and the Consciousness of the Patient by Matthew Drage

For this month’s SAHN session, we discussed Michael Taussig’s 1979 essay, “Reification and the Consciousness of the Patient” from his 1992 book The Nervous System. Drawing on evidence from a North American teaching hospital, Taussig analyses what he views as the reification or “thingification” of disease – a process by which disease rendered, by its institutional and professional contexts, a matter of purely physiological and biological processes. Since, according to Taussig, only “professional experts” are qualified to understand and manipulate these processes, the patient herself is disempowered and alienated both from her own condition, and from the social relations inherent in its production. Her consciousness, and with it the lived experience of illness, is cordoned off and de-legitimised, whilst “health care providers” sustain a commodity exchange model of disease in which services are provided to the patient under contract within mutually debilitating institutional strictures. Even her frustration and misery is co-opted and used to ensure she complies with her side of the contract. The patient remains, Taussig concludes, stranded in a situation in which she is systematically deprived of supportive, reciprocal and caring human relations.

The group began by discussing how far Taussig’s description of the patient’s condition still applied, more than thirty years on. There was a general agreement that although there had been changes, Taussig’s criticisms still applied. While more sophisticated measures exist to understand the patient’s perspective, these measures are in place precisely in order to help ensure compliance. And the commodification of the healthcare system in Britain has only intensified in recent years.

This was not, the group agreed, a coincidence: medical science’s view of disease as “objective” – as a set of symptoms and conditions separated from the consciousness of a human carrier – largely precludes warm, rewarding and mutually vulnerable relations between patients and clinicians.

At this point, we briefly discussed the possibilities for action. Members of the group related the difficulties they would face if they were to try to mount a serious critique of healthcare. Some felt that they would need to keep their opinions to themselves, or that expressing them would be at best useless, or at worst damaging to their career prospects. Later, when we discussed the topic again, a little more optimism seemed to emerge: we talked about the possibility of following Taussig – and Deleuze & Guattari, in their use of medical metaphors to understand (diagnose?) wider social, cultural and political problems.

Towards the end of the session, we talked about Taussig’s use of the figure of Nervous System. Although it wasn’t mentioned in the paper under discussion, Taussig uses the idea of the Nervous System in the introduction of his book of the same title to frame his wider programme of analysis. The Nervous System, for Taussig, seemed to be (amongst other things) figure connecting methodology – his own nervous system and its sensory reach into the world – with the currents of fear and terror that flow through contemporary capitalist society. We debated the usefulness of the idea of the Nervous System, and whether or not it was an overstretched metaphor. Some comparisons / contrasts were drawn between Donna Haraway’s cyborg, Deleuze & Guattari’s “body without organs”, and Bruno Latour’s use of metaphor. No agreement was reached – some enjoyed and defended Taussig’s use of the Nervous System; others found it laboured and unhelpful.

These worries aside, there was in general much sympathy for Taussig’s critique, even (perhaps especially) from the medical practitioners amongst us. That his critique had not been addressed by the medical establishment seemed to some of us to fit with a general trend, on the part of the social sciences, away from sociology/anthropology of medicine towards sociology/anthropology for medicine. This is a trend which some members of the group hope to work directly against.