Graham Scambler

Stigma and disease: changing paradigms

But if diseases are not invariably stigmatising, some diseases and symptoms of disease clearly are, although which ones vary historically and across cultures. Sontag has argued that different diseases have aroused particular feelings of dread or repulsion during different eras. In the present century in the developed world, she contends, cancer has displaced tuberculosis in this respect. 3 It has been suggested too that in contemporary developed cultures more stigma typically attaches to disorders for which people are considered culpable (ie, achieved rather than ascribed stigma), and to conditions of the mind rather than the body. 4 Stigmatising diseases can be further distinguished by their visibility and intrusiveness. Goffman describes those with disorders that are stigmatising and that cannot be hidden or disguised (eg, blindness) as discredited, and those with conditions that allow people to “pass as normal” (eg, diabetes) as discreditable. Whereas the discredited may be confronted with problems of “impression management”, the discreditable may face difficulties of “information management”. 1

Health work female sex workers and HIV / AIDS: Global and local dimensions of stigma and deviance as barriers to effective interventions.

This paper addresses the near global attribution of stigma and deviance to female sex workers, and the salience of this attribution for health interventions in HIV/AIDS. A conceptual frame is developed as a guide to comparative sociological study in this area, and the importance of explanation at the level of social structure emphasized. After a general review of the empirical literature, more sustained attention is paid to specific aspects of female sex work in three contexts or figurations, the cities of London, Bangkok and Kolkarta. It is argued that norms of shame and blame and the labelling process with which they are bound up always arise within a structure nexus. We emphasis, in particular, the figuration-specific tensions between the global and the local, system and lifeworld and, the relationship between structure, agency and culture. The article concludes with a discussion of attempts to empower female sex workers and with a series of five orienting themes comprising a research programme for the future.

Generating a model of epileptic stigma: The role of qualitative analysis

This paper uses an account of the goals, methods and results of a British community study of coping with epilepsy to consider the nature and range of the contributions qualitative analyses can make to theory formation. Different functions and contexts of qualitative analyses are described, and illustrations given of ways in which these helped generate and inform a particular model of the impact of the stigma of epilepsy on day-to-day life.

Why parents of children with neurodevelopmental disabilities requiring gastrostomy feeding need more support

This was a qualitative research study of parental perceptions of gastrostomy feeding before surgery using an in‐depth interview in the parental home to examine the factors parents consider when gastrostomy feeding is recommended and to identify the need for support. Participants were a subgroup of families taking part in a larger research study evaluating gastrostomy placement in children with severe neurodevelopmental disabilities at a major paediatric centre in the UK between 1998 and 2000. Parents of 22 children (13 males, nine females; mean age 4 years 8 months [SD 3 years 6 months]; age range 1 year 1 month to 13 years 3 months) were interviewed. Categories of disability were: cerebral palsy (n=10), a syndrome of chromosomal or genetic origin (n=10), and unconfirmed diagnoses (n=2). Thirteen children were recommended for a gastrostomy and seven were recommended for a gastrostomy with an antireflux procedure. Four families were undecided about surgery at the time of the interview, two of whom went ahead with the procedure some time later. Parental accounts of oral and tube feeding were both contradictory and ambivalent. Concerns about the loss of oral feeding, which was regarded as having a range of psychosocial effects for the child and family, were raised. Both oral and tube feeding have multiple meanings for parents and signify more than obtaining an adequate nutritional intake. The need for additional information about the risks and benefits of gastrostomy and how tube feeding fits into the context of everyday life were dominant themes. The biomedical emphasis on health and weight‐gains may fail to reflect parental concerns about tube and oral feeding. There is a need for greater practical and emotional support for families feeding children with severe disabilities.

Sociology, social structure and health-related stigma

Abstract There is a long and cross-disciplinary tradition of analysing chronic and disabling illness in terms of relations of stigma. The present paper offers a sociological approach which emphasizes: (a) the causal importance of social structures for grasping stigma relations; (b) the importance of understanding stigma relations in the context of wider societal change; and (c) the ways in which relations of stigma typically interact with other relations, such as those of class and command. It is suggested that consideration of specific and often condition-related strategies to reduce stigma might profitably be set in such a context.

Sex Work Stigma: Opportunist Migrants in London:

The social institution of prostitution or sex work has a long and varied history in the West, during almost all of which women plying their trade within it have been stigmatized. After a brief excursus on contemporary sex work and the concept of stigma itself, this article applies the authors jigsaw model to throw light on the causal role of social structures in shaping sex work stigma, in relation to women migrants from Eastern Europe and the former Soviet republics working as escorts in central London, typically on a short-term opportunistic basis. Interviews with a small snowball sample of a dozen women inform and illustrate the analysis. The differential causal effects of relations of class, command, gender and ethnicity, as well as those of stigma, are considered. It is argued that stigma relations in a given context or figuration cannot be grasped in isolation, but are always part of a nexus of social structures of varying causal importance.

The relationship between medicine and the public: the challenge of concordance:

Concordance is based on the idea that patients and practitioners should work together towards an agreement on treatment choice. This requires a redefinition of the relations and encounters between doctors and their patients. This redefinition emphasizes the need for patient involvement and participation. In this article we examine concordance against the background of wider social change, structural as well as interpersonal. We focus in particular on challenges to trust, noting that the almost instinctive trust that people formerly had for professional experts has for many reasons diminished. One consequence of this, we suggest, is that concordance is being espoused at a time when its accomplishment may be particularly threatened. In fact there are strong grounds for claiming that support for the notion of concordance could possibly result in a growth of ‘hidden’ communication pathologies by means of what the social theorist Habermas (1984) has termed ‘systematically distorted communication’.

Stratification, Class and Health: Class Relations and Health Inequalities in High Modernity

This paper starts from a critique of the dominant and largely empiricist paradigm within which sociologists have approached the relationship between social class and health. Referring to the transformational model of social activity and the relational model of society advanced by Bhaskar, the nature and reality of class relations and the preconditions for their theorisation are discussed. A neo-Marxist theory of class relations owing much to Clement and Myles is outlined. The relevance of this theory for a revised and more sociological consideration of health inequalities is then explored and some pointers offered for future empirical enquiry. The authors contend that this theory may throw some light too on the theoretical and political timidity medical sociologists characteristically show in their current research on health inequalities.

Critical Realism, Sociology and Health Inequalities: Social Class as a Generative Mechanism and its Media of Enactment

The research lit erature on the sociology of health inequaliti es is disappointing, perhaps most conspicuously so when the focus is on social class. Publi shed papers too often betray a poverty of sociological imagination and ambiti on of a kind roundly and forcibly condemned by C. Wright Mill s (1963) a generation ago. The reasons for this state of affairs are several, but they comprise a recognisable and close-knit famil y group. They have to do with the sway of pioneering social epidemiological exemplars, especiall y the ‘Whitehall Studies’ conducted by Marmot and coll eagues; a continuing medical sociological commitment to (neo-) positi vist methodologies and ‘ variable analysis’ , underpinned by empiricist phil osophy in general and the Humean regularity theory of causation in particular; and a fail ure on the part of medical sociologists to distinguish between explanatory and predictive power, resulti ng in a stulti fying lack of interest in generative mechanisms. The object of this paper is not to mount a criti que of (neo-) positi vist approaches to the sociology of health inequaliti es per se (see Forbes & Wainwright 2001), but to move on to propose and begin to develop a more promising criti cal reali st approach. The opening section is a kind of prolegomenon, offering a few pointers to the advantages of criti cal reali st over (neo-) positi vist frames of reference. The second section summarises the extant literature on health inequaliti es and some of its lessons for sociology. The third examines and assesses two significant recent intrusions into this lit erature, by Wil kinson and by Coburn. The fourth posits a robust neo-Marxist notion of social class. The fifth introduces a model of logics/ relations/ figurations and goes on to postulate and elaborate on the greedy bastards hypothesis (GBH) (Scambler 2001b, in press), which asserts that Britain’ s persisting health inequaliti es might be regarded as the (largely unintended) consequences of the ever-adaptive behaviours of members of its (weakly globali sed) power elit e, informed by core members of its (strongly globali sed) capital-executive. The final section ventures some fairly caustic propositi ons on New Labour’ s American-inspired phil osophy of the ‘Third Way’ .

New social and health movements: Issues of representation and change

The potential of social movements to accomplish change relevant to peoples health, longevity and empowerment has received little sustained attention in medical sociology outside the USA. In the current era of global or disorganized capitalism the most discussed movements in Europe have been the new social movements (NSMs). In this paper the NSMs are defined and discussed in terms of their actual and potential impact in the health domain. Within a broadly Habermasian framework, a series of rhetorics associated with, and intermittently enacted through, NSMs are identified. This leads to a provisional typology of ‘mobilizing potentials’ characteristic of NSMs. It is suggested that it is the organic bases and flexibility of health-related NSMs, together with their potential to comprise a ‘culture of challenge’ in the public sphere of the lifeworld, which makes them serious political agents for lifeworld de-colonization.