Stigma and Social Exclusion in Healthcare

Caroline Carlisle, Tom Mason, Caroline Watkins, Elizabeth Whitehead

• Publisher: Routledge
• Year: 2005
• ISBN:
  9781134737062
• Edition: 1
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

Whilst those in healthcare might like to think that they work to reduce stigma and social exclusion of others, this book reveals many strategies by which healthcare professionals contribute to increasing these conditions. Written by practitioners, some of whom have themselves been stigmatised, the book exposes the hidden processes of prejudice and the dogma of ideology that permeate contemporary healthcare. Engaging with the realities of stigma through a grassroots approach, topics covered include:
* hearing
* sight
* sexuality
* HIV and AIDS
* drug use
* teenage pregnancy
* breastfeeding
* old age.
Stigma and Social Exclusion in Healthcare provides practical solutions to problems, recommendations for training and a blueprint for the future. It will prove a valuable reference for all those wanting to deal with the issues of stigmatisation.

1 Introduction

Tom Mason, Caroline Carlisle, Caroline
Watkins and Elizabeth Whitehead

Introduction

By and large people are social animals, with only a few life-long exceptions of hermit existences. Although most people do enjoy their own social space, time alone and moments of peace, quiet and solitude, there is a strong inherent drive for the company of others. This instinctual urge may be a primitive artefact when pre-historic human groups herded together for safety and protection, or it may be a socio-psychological coupling that is rooted in the drive for procreation. Whatever its heritage, the idea of belonging to a particular social group of our choice is deep-seated indeed. When denied that company, either through forced solitary confinement, exile or banishment, it is often considered a cruel and unkind act of punishment. Consider the testimony of those who were politically exiled, such as Alexander Solzhenitsyn, or those forced into solitary confinement, such as the Beirut hostages, or those transported to foreign lands as punishments for criminal acts, and bear witness to the pain and torment of their troubled emotions on being excluded. It is almost as if the overwhelming need to feel socially included has, as its binary opposition, its most potent punitive counterpart, that of social exclusion.

From a global perspective we all share the same planet, and should we come under interplanetary attack from some distant cosmological force we would, no doubt, bind together to fight this common enemy. However, we are all aware of the global fragmentation into continents, countries, clans and creeds as barriers, borders and boundaries are erected to separate and divide. Then, within these states, fractions may develop to cause North and South differences or East and West discrepancies, leading to further conflict and tensions. Even within cities, we know of areas of affluence and areas of poverty, areas which are predominantly one culture or another. Furthermore, we are all probably aware of the disunity that can exist in small environmental areas such as streets, playgrounds, wards or units, as gangs, cliques and clubs form to isolate the in-group from the out-group (see page). It would seem to be a human social characteristic to splinter into smaller groups and to sever ourselves from the main social body. Although, as already mentioned, this may have some properties remnant of the primitive past, in contemporary times it can, and does, lead to pain and suffering. From the Holocaust to ethnic cleansing, and from the bullied child in school to the discredited patient in the clinic, the human capacity to hurt, and be hurt, knows no bounds.

From a national perspective, in Britain, we can note the many tensions that exist between the nationalistic fervours of Scotland, Ireland, England and Wales; between the islanders and mainlanders; between those north of Watford Gap (a service station on the M1 motorway) and those south of it; and both between our cities and within them. It is not surprising that British society is deeply concerned with the levels of ethnic, racial and religious intolerance that underpins many of our social problems. In many ways the strategies by which we exclude each other are both sophisticated and simple, and yet so deeply entrenched in our social psyche as to be obscured and veiled. Through the exploration of our own roles and functions, and reflexively considering our own values and prejudices, we believe we can alter our human action. In order to progress we need to have the ability and maturity to question ourselves so as to change our behaviours towards each other. In this book we narrow our focus to concentrate our attention on the nature of stigma and social exclusion in healthcare settings.

Stigma and social exclusion: its impact

Stigma has its roots in ‘differences’. The pain and emotional hurt experienced by the stigmatised person is linked to others’ pity, fear, disgust and disapproval of this difference, whether that difference is one of personality, physical appearance, illness and disability, age, gender or sexuality.

Stigma can be defined as an attribute that serves to discredit a person or persons in the eyes of others (Franzoi, 1996). Attitudes towards these discreditable attributes vary through time, so for example the stigmatising impact of being an ‘unmarried mother’ has gradually lessened over the past few decades. Stigma is also culturally defined, and variation is evident in the ways in which particular attributes are either accepted or otherwise between culturally diverse groups. The practice of tribal scarring in particular cultural groups highlights this point. Similarly, healthcare provides examples of how politically correct terminology has entered the vocabulary, partly as an attempt to demonstrate acceptance of differences; hence we now refer to ‘gender realignment’ instead of ‘sex change’, and ‘Down’s Syndrome’ instead of ‘mongol’. Changes in vocabulary and the passage of time, however, cannot fully eradicate stigma and alter complex cognitive behavioural aspects of stigmatising attitudes. Indeed, when defining issues of ‘deviancy’, healthcare provision and medical diagnosis can shape and promote images of stigma bearers. So, for example, blindness may be defined in terms of the impact on people’s personality and psychological adjustment rather than as a technical handi-cap which can be compensated for by acquiring new techniques.

The impact of stigmatising attitudes on the stigmatised individual can vary in form and intensity. Much of the behaviour, however, towards the stigmatised serves to emphasise ‘difference’, and thus there are forms of discrimination and prejudice which can be identified in the interactions between the ‘normal’ and the ‘discredited’ (Goffman, 1990). Discrimination and prejudice in any form serve to separate and exclude individuals from society and from many of the benefits of society, such as equitable access to services like housing, education, health and social support. Discrimination in this way is a form of social exclusion.

At an individual level the impact of stigma and social exclusion can be devastating, leading to low self-esteem, poor social relationships, isolation, depression and self-harm. Groups as well as individuals can be stigmatised and prejudicial behaviour towards them based on race, sexual orientation, culture and religious belief is experienced at an individual as well as a group level. One of the largest potentially stigmatised groups is that of the ‘kingdom of the sick’ (Sontag, 1978) and it is no coincidence that many of the chapters in this book address those individuals affected by illness and disability. The impact of stigma on those individuals who are already coping with acute or chronic health problems can be profound, and we hope that this book will serve to raise the awareness of all healthcare professionals, and provide some insight into the experience of stigma and social exclusion for people affected by physical and mental health problems.

Contextual framework

As we noted earlier, there appears to be a very distinct human capacity to form groups, and in forming such groups certain social structures become apparent (Simmel, 1950). For example, a group identity is formed by which individual members can distinguish themselves from others (Hughes, 1945). This identity is underpinned by a set of values and normative prescriptions that govern the rules of behaviour for that particular group. For example, if a group values the belief in the superiority of their skin colour and the purity of their blood lineage, those values may form the normative prescription of excluding other groups from inter-marrying. Such prescriptive rules may manifest themselves as banning their children from mixing with, or dating, others from different ethnic/cultural backgrounds, or may incorporate stigmatising strategies of ridiculing, de-valuing and dismissive commentary. These latter strategies are employed by many members of a particular in-group who denigrate and disregard those in the out-group (Redfield, 1960). This can be seen when children form groups in the school setting as much as it can be seen in national racist humour that disparages other national groups (Coleman, 1961).

The major function of these stigmatising strategies is to establish the ‘them and us’ principle (Foucault, 1973). The complex interpretation of this principle is beyond the scope of this book but suffice to say that it is concerned with establishing those deemed within a value structure which is considered good and in favour, and those considered bad and out of favour (Foucault, 1973). This principle, once established, allows for any amount of stigmatisation and social exclusion, which is then justified and sanctioned by the prejudiced view that distinguishes the difference: i.e. ‘them and us’. Few better examples of this principle, although extreme ones, are found than in the extermination of many millions of people throughout history under the name of ethnic cleansing. Although we would reiterate that these are extreme examples, they typically begin with the same stigmatising processes as do the street gangs, the playground bullies and the workplace cliques. The difference is merely one of degree.

The final context that we wish to mention here concerns the social pressures that are wielded not only to exclude certain individuals from the in-group but also to include chosen members. Peer group pressure is a well-known social phenomenon that is employed to compel people to conform to a set of values. To create the feeling that a person belongs to, or is identified or associated with, a particular group is a powerful mechanism of communication, and can be as effective in rewarding conformist behaviours as well as punishing ‘aberrant’ ones. Once established as a member of any particular in-group it is often difficult for individuals either to extricate themselves from that group or to change group thinking. In short, the group socialisation process becomes a self-reinforcing circuit of control. In the healthcare setting this can lead to all manner of disturbing actions towards vulnerable groups, as witnessed in the numerous inquiries into allegations of abuse. For example, there are numerous reports concerning abuse by staff in learning disability hospitals (for example HMSO, 1972), reports on allegations of abuse by nurses of mentally disordered offenders (HMSO, 1992), and reports on the killing of patients by registered practitioners (for example the Beverly Allitt Report: HMSO, 1994). Furthermore we will no doubt have reports on the Bristol child cardiac inquiry, the case of general practitioner Harold Shipman, and the Alder Hey children’s organ removal scandal. What all these examples share is a belief in being a member of an ‘in-group’ with the power to stigmatise or socially exclude others. Healthcare settings can be very dangerous places!

Healthcare contexts and stigma/prejudice/social exclusion

These examples of stigma and its impact on or within healthcare systems have mainly identified specific situations or problems which are potentially observable. However, there are more subtle processes which are not so directly observable, but which nevertheless impact on and relate to the partial or impartial provision of healthcare. These issues originate from healthcare’s tendency to focus on illness and the prevention of illness which are suggested here as being the origins of stigmatising processes. Supporters of the biomedical model may push forward the medical profession’s knowledge as the only right explanation, using language to bolster these ideas – ‘doctor knows best’, ‘a little knowledge is a dangerous thing’ – so that these ideas are seen as the only ‘reality’ and others find it difficult to disagree (Berger and Luckmann, 1966). Furthermore, health professionals frequently, but mistakenly, think that lay health beliefs ‘are at best watered down versions of proper professional medical knowledge (i.e. no more than old wives tales)’ (Stainton Rogers, 1991: 3).

However, it is important to recognise that biomedicine is only one of many differing explanations. Illness itself is merely a matter of definition, which could be illustrated by the following:

The fracture of a septuagenarian’s femur has, within the world of nature, no more significance than the snapping of an autumn leaf from its twig; the invasion of the human organism by cholera germs carries with it no more the stamp of ‘illness’ than does the souring of milk by other forms of bacteria …

(Sedgewick, 1982: 30)

That is, illness is only what it means to the individual, and its implication for the person themselves is socially defined. There may be a number of explanations (‘sub-universes of meaning’) which compete with each other, both within society and within the individual (Berger and Luckmann, 1966). Therefore it is imperative that lay beliefs are recognised, and that both illness and health should be seen as normality and consequently as being within a normal person’s control (Dingwall, 1976), such that healthcare professionals are not viewed as the only source of knowledge.

Healthcare professionals must be challenged to take account of these lay beliefs, which may differ – even within an individual – according to the particular event and time point within their life. People choose from a range of conflicting attitudes, and this choice depends upon situational demands, mood, and perceived importance at that moment. People are endeavouring to ‘create order out of chaos, and moment to moment make sense of their world amid the cacophony’ (Stainton Rogers, 1991: 10).

Consequently, when healthcare professionals are trying to explain (as they are charged to do) what factors have contributed to a person’s illness and to discover what will enable them to recover, they must examine personal accounts. This is starkly apparent in those who have recently suffered a stroke, where it is the person’s own ideas of what will help them to get better and what will happen to them in the future that determine their short- and long-term feelings of wellbeing.

It is increasingly apparent that we need a system which allows people to be recognised as having their own ideas and opinions, which may or may not be directly in line with medical philosophies; as having their own ways of motivating themselves; and as needing to be allowed some choice and also some control over their own bodies, treatments and futures.

Taking account of people’s own ideas and aspirations poses a challenge to healthcare professionals who have developed in a society which encourages conformity. There are strong expectations of participation in healthcare treatments (e.g. rehab...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Illustrations
• About the Editors
• Contributors
• Foreword: Stigma and Social Exclusion: Narratives and Agendas
• Preface
• Acknowledgements
• 1. Introduction
• Part I: Theoretical Underpinnings
• Part II: Applications to Practice
• Part III: Where Do We Go from Here?