The End of Stigma?

Changes in the Social Experience of Long-Term Illness

Gill Green

• Publisher: Routledge
• Year: 2009
• Print ISBN: 9780415376259
• eBook ISBN: 9781134184279
• Edition: 1
• Topic: Scienze sociali
• Subtopic: AIDS e HIV

This innovative book investigates the roots of contemporary experiences of stigma, throwing new light on the phenomenon by examining a variety of long-term conditions.

Behaviour, lifestyle and identity are no longer the results of mass-production by social class and nation, but increasingly the quirky and unique eccentricities of the individual as consumer, reflexive citizen and free agent. But if the hallmark of the post-modern world is endless variety and unlimited sub-cultural freedom, should we not be witnessing "The End of Stigma"? The book takes Fukuyama's notion of "The End of History" and examines contemporary challenges to the stigma associated with chronic illness.

Award-winning author Gill Green examines cases of HIV, mental illness and substance misuse, to provide new insights into stigma in health. She demonstrates that people with long-term conditions refuse to be defined by their condition and highlights their increasingly powerful voice. The End of Stigma? will be of interest to a wide range of students and health professionals in medical sociology, health studies and social care.

1 Challenging stigma

The changing landscape of stigma associated with long-term conditions

I am a sculptor, living with cancer. Note that I do not say ‘I am a cancer patient’. I am living, and I just happen to have some cancer.

The above quotation is from the website of a sculptor, John Shonle, and serves as a useful introduction to this book in that it attests to the increased willingness of people living with long-term conditions to acknowledge and talk privately and publicly about their illness but not have their identity de-fined by it. They are becoming more vocal about their experiences and their needs whilst at the same time resisting, increasingly actively, the stigma and moral weakness traditionally associated with illness. We are witnessing a realignment of social relationships – the old order in which the sick and disabled are disempowered and marginalized is being replaced by a world characterized by their increasing confidence and a reassertion of their essential personhood. In contrast to the traditional notion of a long-term condition defining a person and their identity, people living with long-term conditions are increasingly resisting such labels and are actively defining their illness in relation to who they are.

These processes of redefinition can be seen as aspects of a wider and more profound set of socio-cultural changes, identified by sociologists as the move to the late modern or post-modern era. Since the early development of industrial societies, behaviour, lifestyle and identity have been the products of the relations of production and overarching political systems, articulated through an individual's membership of mass agglomerations such as social class and nation. The late twentieth century, however, witnessed the fracturing of traditional economic relations, the breakup of the big post-war political blocs and the burgeoning of electronic means of communication. These structural changes have brought us into an era in which behaviour, lifestyle and identity are increasingly determined by the individual as consumer and the quirky, unique and often playful eccentricities of the reflexive citizen as free agent.

In the political and economic arena, this process was characterized by Fukuyama (Fukuyama, 1989; Fukuyama, 1992) as ‘the end of history’, as there is no longer the cultural space for the large-scale ideological battles of the pre-modern age:

What we may be witnessing is not just the end of the Cold War, or the passing of a particular period of post-war history, but the end of history as such: that is, the end point of mankind's ideological evolution and the universalization of Western liberal democracy as the final form of human government.

(Fukuyama, 1989: 4)

‘The end of history’ describes the late twentieth-century ascendancy of western liberal democracy and the ‘unabashed victory of economic and political liberalism’ (Fukuyama, 1989: 3). Building upon Hegel's concept of the end of history following Napoleon's victory against the Prussians at the battle of Jena in 1806 and the triumph of the ideas of liberté, égalité and fraternité of the French revolution, Fukuyama contends that the two major challenges to liberalism in the twentieth century, fascism and communism, are essentially ‘dead’ as living ideological forces. The former was routed by military defeat and the latter with the tumbling of the Berlin Wall in 1989 and the incipient liberalization of the Chinese economy. He cites as evidence the rapid advancement of liberal economies and consumer culture that seem to promote and preserve liberalism in the political sphere. In contrast the highly centralized socialist-organized economies appear to be ‘woefully inadequate in creating what have been termed complex “post-industrial” economies in which information and technological innovation play a much larger role’ (Fukuyama, 1992: xv).

The notion of the end of history does not mean that all events and international conflict will cease, as ‘history’ still has a long way to go in less developed areas of the world and ethnic and nationalist conflicts persist, but rather alludes to the fact that large-scale conflict between big states is passing and this process is linked to the rise of modern political and economic liberalism that appears to be an inevitable ‘end-point’.

This book borrows the idea of ‘the end of history’ and the concept that there is no longer the cultural space for the large-scale ideological battles associated with modernity. I then apply the general notion to the social and cultural experiences of, and responses to, those with long-term conditions in the twenty-first century.

The fracturing of modernist structures, the freeing of social life from traditions and customs, the reflexive (re)structuring of the self, the empowerment of previously disenfranchised groups, and the inexorable rise of identity politics are all features of post-modernity. From a theoretical standpoint such changes will impact on aspects of social relations and self-identity and thus on stigma. Moves to combat the stigma of long-term conditions are apparent in the increasing strength of the user movement, in the Disability Discrimination Act and in the current government modernization agenda. In the light of this post-modern analysis identifying a fragmentation and fracturing of social relations and the emergence of the multifaceted identity, one might expect a reduction in the stigma associated with long-term conditions. If the hallmark of the post-modern world is endless variety and unlimited sub-cultural freedom, should we not be witnessing ‘the end of stigma’?

This book asks whether such changes are indeed taking place. It examines contemporary challenges to the stigma associated with long-term conditions and asks whether there has been a perceptible shift in the relationship between long-term conditions and stigma.

Stigma generally denotes the possession of a trait that marks one out as different from others and is negatively regarded. The field is still largely dominated by the work of Goffman, who shows how the ‘spoiling process’ associated with stigma may eclipse a person's social identity so that s/he is treated as belonging to a stigmatized category (e.g. as ‘a nutter’, ‘a cripple’) rather than as an individual, and devalued in the process. There is a wealth of literature about the stigma associated with long-term conditions, in which these processes are described.

Stigma is often portrayed as an inevitable companion of long-term conditions and there is an assumption, supported by a large body of empirical research, that long-term conditions are always accompanied by stigma. The rationale is that society has stigmatizing attitudes towards the chronically ill and they in turn internalize social attitudes towards them, leading to low self-esteem. A number of studies report that stigma associated with long-term illness is more difficult for the ill person to cope with than the physical impact of the illness. This has been reported in respect of people with HIV and other conditions too (Green and Sobo, 2000).

However, this book argues that social attitudes to long-term conditions are changing and as a result asks whether in contemporary society having a diagnosis of a long-term condition automatically leads to stigma. Is it now possible to be ill without stigma? Is it now possible to be ill and actively fight stigmatizing social attitudes rather than internalize them?

A feature of stigma is that it is a culturally relative construction and what is stigmatizing in one place and time may not be so in another. I therefore focus upon recent social changes to see how these have impacted upon the stigma related to long-term conditions and address the question: ‘Are we witnessing the end of stigma?’ In doing this, I draw upon the testimonies of people living with HIV, people with drug and alcohol problems, and mental health service users. These people's experiences of living with long-term conditions provide a key to understanding the roots of the contemporary experience of stigma. Their stories lead us to ask: ‘To what extent are stigma and social exclusion still salient features in the lives of people living with long-term conditions?’

Challenges to the stigmatizing processes around illness and disability have become a feature of popular culture. Newspaper columns, books and ‘blogs’ written by people with a variety of illnesses have become commonplace in publications and internet sites. Notable milestones along this road have included Oscar Moore's weekly column ‘Life as a Person with AIDS’ (see also Moore, 1996), John Diamond's newspaper diary and memoir C: Because Cowards Get Cancer Too (Diamond, 1998) and Adrian Sudbury's ‘Baldy's Blog’ about living with leukaemia (Sudbury, 2008). These writings invite the reader to understand and empathize with the dramatic highs and lows, as well as the everyday mundane realities, of the illness experience.

Illness features in soap operas and popular drama such as The West Wing, in which the audience follow the (political and illness) ‘career’ of the President of the United States when he is diagnosed with multiple sclerosis. The rise in documentaries focusing upon a plethora of common as well as hitherto unknown (and increasingly bizarre) conditions attest to the increasing interest in the ‘illness experience’. And there are examples of people using their illness to enhance their identity and popularity, a prime example being Pete Bennett, a young man with Tourette's syndrome, who in 2006 was the clear and popular winner of the UK reality show Big Brother. The image of him emerging victorious from the ‘Big Brother’ house is in clear contrast to the sense of shame felt by people with Tourette's syndrome described in the literature (see for example Davis, Davis and Dowler, 2004).

A further challenge to stigma is offered through the advance of technology. This is most clearly shown in the field of disability, in which the advance of new technology can for example stimulate damaged muscles to move. A particularly striking example of technological advance are the carbon-fibre prosthetic limbs (or ‘cheetah legs’) belonging to the athlete Oscar Pistorius, a double amputee, that enabled him to compete against able-bodied athletes and win a silver medal in the 2007 South African national athletics championships. Such feats challenge former boundaries between abled and disabled bodies.

The key message of such images is to challenge stigma by asserting that people living with long-term conditions are people with a right to full participation in society. Those who traditionally have been defined as ‘not normal’ or ‘other’ are challenging the definition of what is ‘normal’. This challenge is most apparent among those who perform extraordinary feats or those who have their 15 minutes of fame, and perhaps it symbolizes little more than the fact that there are some social contexts in which a normally stigmatizing attribute becomes affirmative rather than discrediting. But the fact that this is now commonplace, and examples abound of positive images of illness and disability, provokes the question whether this represents a fundamental shift in social relations between the ‘normal’ and the stigmatized.

Traditional images of stigma associated with long-term conditions

In 1966 a book was published titled Stigma: The Experience of Disability (Hunt, 1966a) that was based upon 11 essays written by people with a range of long-term conditions such as muscular dystrophy or rheumatoid arthritis and disabilities either inherent at birth or acquired through illness.

The writers highlight different aspects of the illness experience but all make reference to the negative societal reaction towards their disability or illness condition and concomitant social exclusion. They write about being ostracized from mainstream society and living in an underprivileged, inferior ‘sub-world’. Louis Battye, who was disabled from birth, writes, ‘We [disabled people] are not full members of that [able bodied] world, and the vast majority of us can never hope to be’ (Battye, 1966: 8–9), and Audrey Shepherd, who was left with a disability following polio, refers to treatment of disabled people as ‘pursuing a policy of apartheid’ (Shepherd, 1966: 64). Margaret Gill, who had polio, talks of the ‘shame of disablement and the knowledge of “being different”’ (Gill, 1966: 100), a difference that according to Roger Glanville (1966: 73) ‘makes one feel not quite right, a little ill at ease, and therefore tense’ or, put more succinctly, ‘If you are disabled, you don't ft’ (ibid.: 78).

A central theme of this edited collection is that disability creates problems not only due to impaired function but also due to ‘our relationship with normal people’ (Hunt, 1966b: 146). Hunt notes that the sick and disabled challenge ordinary society in the following ways:

• Being unfortunate as a result of lack of opportunities for marriage, children, work, independence, which are seen as key values in society. Disablement is therefore viewed as tragic.
• Being useless on account of the general perception that disabled people are unable to work and make a contribution to society.
• Being different.
• Being oppressed with limited opportunities to take part in ordinary society.
• Being sick and suffering, diseased and in pain.

All the authors writing in this book had physical and not mental impairments but their essays illustrated the way that they were treated not only as physically damaged but also, by extension, as mentally incapacitated. According to Reginald Ford, who had muscular dystrophy, ‘To many people still a disabled person is a cripple, in the old pitying, derogatory sense, not only in body but also in mind’ (Ford, 1966: 31) and as evidence the title of his essay is ‘He's a cripple but he's quite intelligent’, which is how he had been introduced by an acquaintance to a third party. This theme is echoed and developed by Paul Hunt's observation that An almost automatic linkage is made not only between a sick body and a sick mind, but also undoubtedly between an evil body and an evil mind, a warped personality’ (Hunt, 1966b: 156). Physical impairment thus leads to a perception among ‘normal’ people of difference and lack of ft, casting the disabled person as one unable to take part, mentally challenged and altogether unworthy. This trajectory was deemed the ‘personal tragedy’ perspective by disability theorists at a later date.

Whereas the social stigma of long-term illness and disability is present in all the narratives, a number of the authors also call for action to address the social consequences and limited opportunities engendered by the societal reaction to their condition. This book was later identified as a clarion call for the political activism that was emerging at this time from the disability movement (Thomas, 2007).

One can indeed discern the seeds of many of the battles that people with long-term conditions have later fought: challenging the stereotypes, working for more state support, struggling for greater independence and integration. For example, Denis Creegan asserts his essential personhood when he writes that ‘Society has to realize actively that first and foremost we are people equally with the non-disabled. Our social needs and aspirations are identical to theirs’ (Creegan, 1966: 112). Others call for legislative and policy change, such as more welfare support to address the poverty associated with illness and disability (Brown, 1966).

Paul Hunt (1966b: 157) urges society to listen to the voices of the ill and disabled, saying:

We are challenging society to take account of us, to listen...

Table of contents

• Cover
• Half Title
• Full Title
• Copyright
• Contents
• Preface
• 1 Challenging stigma
• 2 Stigma: changing conceptual frameworks
• 3 Technological, personal and organizational challenges to stigma and exclusion
• 4 The technological challenge to stigma: HIV and the advent of HAART
• 5 The personal challenge to stigma: substance misuse and the construction of the moral self
• 6 The organizational challenge to stigma: mental health services users ‘reclaim Bedlam’
• 7 Is the end of stigma associated with long-term conditions in sight?
• Notes
• References
• Index