Chapter 14. Social responses to illness and disability
Susan Philpin
Introduction
Chapter 13‘s focus was on people’s experience of illness; this chapter will turn our attention to the ways in which society responds to illness, although of course people’s experience of illness is inextricably linked to society’s reaction to it. Social reaction to illness and disability profoundly affects the ways in which people think about themselves and their levels of self-esteem; for instance, as this chapter will demonstrate, society’s reaction to disability influences the extent to which ‘disabling’ barriers are a feature. In order to explore social reaction to illness, this chapter will draw on insights from sociological studies of the closely related concepts of deviance, labelling perspectives and stigma. In particular, labelling perspectives in relation to mental illness will be explored inasmuch as this is an area where there has been considerable controversy and debate. In addition, given that disability has often been presented as a form of social deviance, different aspects of social responses to disability will be examined.
Much of the research concerning social reaction to illness and disability draws on the methods described in the previous chapter concerning the experience of illness – qualitative interpretive studies. In relation to people with disabilities however, disabled people such as Oliver (1997) and Priestley (1997) argue for an emancipatory research paradigm based on the social model of disability, which is outlined later in the chapter. As its name suggests, this paradigm is concerned with emancipating socially oppressed people through the research process. Oliver (1997) argues that what made this type of research a new paradigm was ‘the changing of the social relations of research production – the placing of control in the hands of the researched, not the researcher’ (Oliver 1997: 17). (See Chapter 5 and Chapter 12 for accounts of critical theory.)
The key principles of the emancipatory research paradigm are set out by Priestley (1997: 92) as follows:
1 The adoption of a social model of disability as the ontological and epistemological basis for research production.
2 The surrender of falsely-premised claims to objectivity through overt political commitment to the struggles of disabled people for self-emancipation.
3 The willingness only to undertake research where it will be of some practical benefit to the self-empowerment of disabled people and/or the removal of disabling barriers.
4 The devolution of control over research production to ensure full accountability to disabled people and their organizations.
5 The ability to give voice to the personal while endeavouring to collectivize the commonality of disabling experiences and barriers.
6 The willingness to adopt a plurality of methods of data collection and analysis in response to the changing needs of disabled people.
The emancipatory research paradigm continues to raise questions and debate about the importance of objectivity and neutrality in research and also about how realistic it is to expect research to emancipate oppressed people. However, approaches based on this paradigm, such as ‘Participatory Action Research’ are now being used in many areas of nursing research in order to elicit patient perspectives and address perceived needs.
Ontology refers to the study of the nature of reality
Epistemology refers to the study of the nature of knowledge
Deviance and labelling perspectives
The word ‘deviate’ is commonly used to mean to depart from the usual path, and sociological understandings of deviance and deviant behaviour develop this idea of actions that depart from the norms, rules and expectations of a particular social group. In relation to health and illness, illness may be perceived as deviant inasmuch as it also departs from social norms and expectations. As we saw in Chapter 13, Parsons’ (1951) concept of the sick role is premised on the idea that sickness is deviant (in that sick people may be unable to fulfil their expected roles) and needs to be controlled in some way.
The intellectual roots of sociological studies of deviance, labelling and stigma stem from symbolic interactionism, which (see Chapter 13) attempts to explain social actions and interactions in terms of the meanings of those actions to the people involved. Within this theoretical approach, reality is socially constructed and open to negotiation and different interpretations, rather than there being one absolute social reality. Deviance and labelling perspectives are also products of a particular point in time – the 1960s – a period marked by the growth of radical movements and challenges to authority and ideas of absolute knowledge in various parts of the Western world. With respect to mental illness, which the labelling perspective has been applied to, this period also saw the growth of the ‘anti-psychiatry’ movement, where there was opposition to contemporary psychiatric diagnoses and treatments.
LABELLING PERSPECTIVES
Edwin Lemert (1961), one of the earliest proponents of the labelling perspective, proposed the following three-stage model of the relationship between deviant behaviour and society’s reaction to it:
1 Primary deviation – initial rule-breaking event
3 Secondary deviation – the response of the individual to society’s reaction.
Lemert is essentially arguing that the initial rule-breaking event only becomes important when its perpetrator has been identified and labelled as a rule breaker. Secondary deviation occurs as a result of society’s disapproval and subsequent treatment of the individual. For example,
‘the primary deviance of the armed bank robber is the robbing of the bank, the societal reaction is his arrest, conviction and jailing, and his secondary deviance resides in him identifying with other bank robbers and prisoners, committing further crimes and fulfilling the expectations of his custodians and others’. (Bowers 1998: 2)
Kelly (1992) elaborates the idea of secondary deviation in a slightly more complex way in relation to someone who has undergone surgery resulting in an ileostomy. Kelly argues that the ileostomy operation initially produces secondary deviation in that ‘the whole life of the person revolves around the operation and its sequelae’ (Kelly 1992: 94). However, he goes on to argue that gradually, provided the ileostomy ‘can be managed, concealed, and kept out of the gaze of the world at large, and the person goes back to leading a life of functioning ordinarily, then he or she is in a situation of primary deviance: his or her difference makes no difference’ (Kelly 1992: 94).
The following classic definition of deviance by Becker (1963) makes clear its link with society’s reaction to and labelling of behaviour but also takes Lemert’s ideas further by arguing that it is actually the making of social rules that creates deviance.
‘Social groups create deviance by making the rules whose infraction constitutes deviance, and by applying those rules to particular people and labelling them as outsiders. From this point of view, deviance is not a quality of the act the person commits, but rather a consequence of the application by others of rules and sanctions to an “offender”. The deviant is one to whom that label has successfully been applied; deviant behaviour is behaviour that people so label’. (Becker 1963: 9)
From this definition, it is clear that people who do not conform to society’s expectations of ‘normal’ behaviour, including people with illness and/or disability, are vulnerable to being labelled as deviant. In relation to people with disabilities, the subject of a later section, Hunt (1966) observes that ‘people’s shocked reactions to the obvious deviant often reflect their deepest fears and difficulties, their failure to accept themselves as they really are, and the other person simply as “other” (Hunt 1966: 152).
The application of labelling perspectives to mental illness
Although labelling perspectives have been used to illuminate many areas of health and nursing work (see Chapter 8) they have been particularly intriguing and indeed controversial in their application to mental illness. In fact, the North American sociologist Thomas Scheff (1966) went so far as to argue that labelling caused mental illness inasmuch as once the label is applied the person fulfils the role of ‘being mentally ill’.
Scheff argued that in society there is a ‘residue’ of odd behaviour, which does not fit into any named category and is not governed by any specific rules but that there are expectations or ‘residual rules’ concerning this behaviour. He illustrates this by drawing on examples from Erving Goffman’s (1963b) accounts of rules of behaviour in public places. Goffman describes the unwritten rule that when we appear in public we should appear to be ‘involved’ in some way with what is going on rather than wandering around (or ‘lolling’ as Goffman puts it) doing nothing. He notes that people who appear to be uninvolved in the public arena without a reasonable excuse are perceived as breaking an unwritten (residual) rule and that most symptoms of mental illness come into this category of residual rule-breaking.
Scheff argues that although everyone at times breaks these residual rules, the application of a ‘mental illness’ label depends on societal reaction to the behaviour. Societal reaction is influenced by such things as the status and power of the rule-breaker, the level of tolerance in the community for the rule-breaking behaviour and whether or not there are other explanations for the behaviour. However, Scheff argues that if the person is labelled as mentally ill and treated accordingly this leads to a change in his/her self-image. That is the mental illness label leads to a self conception and behaviour that fits the expectations of the mentally ill role, consequently the label becomes a self-fulfilling prophesy.
Scheff’s theory provoked much criticism; in particular in a series of publications by Walter Gove 1970 and Gove 1975 where he drew on his empirical studies of people with mental illness to argue that most people who are diagnosed with a mental illness do in fact have a mental disorder rather than simply being guilty of residual rule-breaking. His theory has also been criticized for not explaining the reasons for the original rule-breaking, only society’s reactions to it.
Despite these criticisms, an understanding of labelling perspectives in relation to mental health is important for those involved in healthcare in that they encourage a critical questioning approach to the impact of diagnostic and public labelling. Scheff’s work indicates the power of labels in becoming self-fulfilling prophecies. When healthcare professionals and the public apply particular labels people can become locked into their deviant roles. In spite of the importance of these insights, it seems that Scheff’s theory fell into disrepute as a result of his attempts to over-expand his theory into an explanation of the causes of mental illness.
However, the powerfulness of labelling is also suggested by another well-known covert observational study by Rosenhan (1973) involving eight researchers (three women and five men) feigning mental illness and having themselves admitted to psychiatric wards in twelve different hospitals in the USA. In this study, the researchers, after telephoning the hospital for an appointment, presented themselves at the admissions offices claiming to be hearing voices – in all eight cases they were admitted to the hospital, seven with a diagnosis of schizophrenia. Once admitted to the psychiatric ward the researchers (or ‘pseudopatients’ as Rosenhan calls them) stopped simulating any abnormal symptoms.
The researchers’ observations were interesting on a number of levels, including an aid to understanding the kind of care provided in these hospitals. The most significant point emerging from this study however, was what Rosenhan called the ‘stickiness of labels’. That is, once the label had been applied by a person in a powerful position, it was almost impossible to shift. ‘Having once been labelled schizophrenic, there is nothing the pseudopatient can do to overcome the tag. The tag profoundly colors others’ perceptions of him and his behaviour’ (Rosenhan 1973: 253). Thus, all the other (quite normal) behaviour was viewed through the lens of this original diagnostic label and interpreted as being abnormal. For instance, all pseudopatients openly made notes of their experience; in three cases, this was perceived as evidence of mental pathology – ‘Patient engages in writing behavior’ (Rosenhan 1973: 253). The label ‘schizophrenic’ had assumed what Becker (1963) calls a ‘master status’, cancelling out any possible other roles and identities.
Rosenhan’s covert research has been criticized on ethical grounds for its deception of participants. However, I would suggest that the study is a salutary lesson for health professionals on the power of labelling. It is worth remembering that in some instances, the other (genuine) patients in the hospitals studied detected the researchers’ sanity, while the health professionals’ perception of, and reaction to the pseudopatients’ behaviour was influenced by their diagnostic label.
Studies such as Rosenhan’s (1973) also alert us to the disempowering and depersonalizing effects of hospital admission, one of the consequences of which may be the acceptance and internalization of labels. For instance, the following excerpt describing an attempted social exchange between doctor and pseudopatient is a study in depersonalization:
‘Pseudo-patient: pardon me, Dr X. Could you tell me when I am eligible for ground privileges?’
Physician: ‘Good morning, Dave. How are you today? (moves off without waiting for a response)’. (Rosenhan 1973: 255, abridged)
Similarly, Goffman’s classic study Asylums (1968) describes commonly used admission procedures (at that time) – such as compulsory undressing and washing, removal and listing of personal possessions – that destroy self-identity as ‘mortification of the self’. Loss of self-identity may lead people to accept their diagnostic and public labels (see Chapter 4).
Stigma
The concept of stigma is complex, drawing together the previously discussed ideas of labelling and deviance by focussing on the affects of such negative labelling on social and self-identity. Erving Goffman’s (1963a) classic and easily accessible work on stigma – ‘Stigma: Notes on the Management of Spoiled Identity – provides the basis for much of our sociological understanding of people who are not accepted into particular social groups and is particularly relevant to our appreciation of society’s reaction to people with chronic illness and disability. For Goffman, stigma refers to a social label or attribute that is ‘deeply discrediting’, changing both people’s perceptions of themselves and the ways in which society regards them. He argues that if someone possesses an attribute that is different and less desirable, he or she is reduced in our minds from an acceptable person to a tainted, discounted one. That is, the attribute – or stigma – constitutes a discrepancy between the desired or ‘virtual’ identity and the actual social identity, and this discrepancy ‘spoils’ a person’s social and self-identity, cutting them off from social (and self) acceptance.
Goffman classifies stigma into three broad categories:
1 Physical stigma – such as blemishes or deformities
2 Personal/character stigma – such as mental health problems or criminal behaviour
3 Social stigma – such as belonging to a particular ethnic group.
In addition to these categories, Goffman also distinguishes between discredited attributes which are clearly visible, and discreditable attributes which are invisible and therefore only potentially stigmatizing. For example, facial scarring following a burn would be a discrediting attribute, while the condition of epilepsy, which may be invisible unless a seizure occurs in public, would be discreditable. He argues that people with a discrediting stigma try to use ‘impression management’ to deal with other people’s reactions in order to restore their self-identity. In contrast, people with a discreditable attribute, need to use ‘information management’ about their attribute in order to preserve their identity.
The medical sociologists Scambler and Hopkins (1986) developed Goffman’s ideas of information management in their study of people with epilepsy. They distinguished between felt stigma (the fear of being stigmatized) and enacted stigma (the actual experience of prejudice and discrimination). Their study indicated that felt stigma in people with epilepsy was so strong that they were predisposed to conceal their condition from others and to attempt to pass as normal. Scambler and Hopkins (1986) found that this felt stigma (fear of enacted stigma) was more disruptive to the lives of people with epilepsy than was enacted stigma, which rarely occurred.
These accounts of ‘information management’ (Goffman 1963a) and concealment in the case of felt stigma (Scambler & Hopkins 1986) alert nurses to the hard work (extra burden) on the part of patients who already may be dealing with the debilitating effects of their particular symptoms.
STIGMATIZING CONDITIONS
It is evident from these studies so far that some diseases will be more stigmatizing than others, depending on whether or not they are clearly apparent to other people. Thus, more noticeable conditions such as psoriasis, stammering, hair loss from chemotherapy or marked tremor may be stigmatizing, while less apparent conditions such as depression or epilepsy may not be stigmatizing as long as they remain hidden. However, visibility, although significant, is not the only factor to consider, some diseases are stigmatizing in themselves, without necessarily being visible. For instance, the sociologist Arthur Frank (2002) who was diagnosed at different times with both a heart attack and cancer, perceived differences in himself when telling people that he had heart problems and telling them that he had cancer. He notes that while his heart attack was simply bad news, he always thought that his cancer said something about his worth as a person – ‘this difference between heart attack and cancer is stigma’ (Frank 2002: 91). Echoing Goffman’s (1963a) perception of a ‘tainted self’, Frank found that he ‘experienced the visible signs of cancer as defects not just in my experience but in my self’ (Frank 2002: 92).
The writer Susan Sontag (1991) also comments that some diseases, such as cancer and tuberculosis become metaphors for evil. The stigma attached to cancer is complex, possibly arising from its perceived connections with death. Healthcare professionals and others often use code names – ‘The Big ‘C’; ‘CA’ – shrouding the disease in mystery and fear, implying that it is too awful a disease to even be called by its actual name. Bowel cancer, especially that requiring extensive resection of the affected part and the formation of a colostomy, has been found to be particularly stigmatizing (MacDonald 1988), since in addition to the stigma of cancer it also entails mutilating surgery and faecal matter extruding from the abdomen rather than the anus. Some aspects of cancer treatment are particularly visible, notably the hair loss caused by chemotherapy.
In addition to the stigma experienced by patients with other types of cancer, Chapple et al (2004) found that patients with lung cancer felt particularly stigmatized because of the strong association between this disease and smoking and hence its perception as a self-inflicted disease. Some of the respondents also felt stigmatized because the disease was associated with dirt and a horrible death, graphically described in anti-smoking campaigns. As one patient commented:
‘I hate those adverts that come on television when they finish it by saying two weeks after this, she died. And one of them said when you’ve got lung cancer you drowned’. (Chapple et al 2004: 1471)
Chapple et al’s study points to the need for healthcare professionals to exercise care and sensitivity when caring for people with lung cancer and also in the way they present health promotion messages in order not to exacerbate feelings of stigmatization.
Many writers have pointed to the highly stigmatized nature of HIV/AIDS; Angelo and Reynolds (1995) outline the reasons for this:
1 Associated with deviant behaviour
2 Viewed as the responsibility of the individual
3 Tainted by a religious belief as to its immorality and/or thought to be contracted via morally sanctionable behaviour and therefore thought to represent a character blemish
4 Perceived as contagious and threatening to the community
5 Associated with an undesirable and an unaesthetic form of death
6 Not well understood by the lay community and viewed negatively by healthcare providers (Angelo & Reynolds 1995: 305, abridged).
Similarly, Plummer (1988) refers to the triple stigma attached to AIDS in that ‘it is connected with stigmatized groups, it is sexually transmitted and it is a terminal disease’ (Plummer 1988: 28). Moreover, Plummer comments that people with AIDS may also display physical stigmata – the original meaning of the term – including extreme weight loss, lymphadenopathy and Kaposi’s sarcoma.
Reflect on the illness conditions of patients you have cared for. What is it that made some conditions more stigmatizing than others? Consider how your patients have coped with ‘discrediting’ and ‘discreditable’ conditions.
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