Eventful Bodies

Michael Schillmeier

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781317138518
• Edition: 1
• Topic: Sciences sociales
• Subtopic: Sociologie

Disrupting, questioning and altering the taken-for-granted 'cosmos' of everyday life, the experiences of illness challenge the different ways in which social normalcy is remembered, maintained and expected. This book explores the manifold experiences of life threatening, infectious or non-curable illnesses that trouble the practices and relations of human and social life. Challenging a mere deficit-model of illness, it examines how the cosmopolitics of illness require and initiate an ethos that cares for difference and diversity. Eventful Bodies presents rich qualitative and ethnographic data alongside print and on-line media sources from Germany and North America, exploring case studies involving Alzheimer's disease, stroke and the global threat of infectious diseases such as SARS. The book engages with debates in cosmopolitics and exposes the agency of those overlooked by contemporary discourses of cosmopolitanism, thus developing a new theory of illness and delineating a novel empirical agenda and conceptual space for sociological and anthropological research. A rigorous examination of the changes wrought in the social world by illness and the implications of this for social and political theory, Eventful Bodies will appeal to sociologists, anthropologists, social and political theorists, geographers and scholars of science and technology studies, with interests in medical sociology, health, illness and the body.

Chapter 1
Forgetting Bodies

Enacting a ‘National Crisis’ – Twenty-first Century Biopolitics of Dementia

Where have I been? Where am I? Fair daylight?

I am mightily abused. I should ev’n die with pity,

To see another thus. I know not what to say.

I will not swear these are my hands: let’s see;

I feel this pinprick. Would I were assured

Of my condition.

[ … ]

I am a very foolish fond old man,

Fourscore and upward, not an hour more nor less;

And, to deal plainly,

I fear I am not in my perfect mind.

Methinks I should know you, and know this man;

Yet I am doubtful for I am mainly ignorant

What place this is; and all the skill I have

Remembers not these garments; nor I know not

Where I did lodge last night … (…) Am I in France?

(King Lear in Shakespeare’s King Lear IV, Scene 7)

King Lear’s experience in Shakespeare’s tragedy tackles what should become a most challenging bodily event of twenty-first century aging societies: Dementia (cf. Alzheimer’s Society 2012a). Clearly, dementia is not a new phenomenon at all, but probably ‘as old as mankind itself’ (Boller and Forbes 1998: 125). Nevertheless, dementia not only remains poorly understood, but it continues to be an existential personal fear for many of us (Corner and Bond 2004) and is thought to be/come a substantial societal problem. In 2012, more than 400 years after Shakespeare’s King Lear, the British conservative Prime Minister David Cameron labelled dementia a ‘national crisis’ that demands ‘an all-out fight-back [ … ] that cuts across society’ (Cameron in Alzheimer’s Society 2012a). Dementia not only has a ‘devastating impact on the people who develop it, and the families who care for them’ as the former Secretary of State for Health, Alan Johnson (Labour Party) has put it, but – like a contagious disease – dementia troubles, infects and contaminates central societal institutions (Johnson in Department of Health 2009). Dementia, so Cameron says, as

[o]ne of the greatest challenges of our time is what I’d call the quiet crisis, one that steals lives and tears at the hearts of families, but that – relative to its impact – is hardly acknowledged. [ … ] [Dementia] is simply a terrible disease. And it is a scandal that we as a country haven’t kept pace with it. [ … ] The level of diagnosis, the level of understanding and the level of awareness of dementia is shockingly low. It is as though we’ve been in a sort of collective denial. Already a quarter, one quarter of hospital beds are occupied by someone with dementia. Already the total cost of the disease is around £19 billion in England alone. That is higher than the cost of cancer, heart disease or stroke. And in less than ten years, as we all live longer lives, the number of people with dementia will reach a million (Alzheimer’s Society 2012a). ‘Dementia’, he states elsewhere, ‘we as a society simply cannot afford to ignore any longer’. (Department of Health 2012: 3)

For Politics,¹ dementia is both a personal and societal pathology of epidemic character. The collective denial has been fostering the contagious forces to spread its devastating effects unleashing thereby an on-going national crisis. To coat the belated political recognition of dementia as an ignored societal problem – and not a merely personal and family tragedy one has to cope with as a normal, that is natural part of getting older – Cameron’s rhetoric comments on dementia as a ‘quiet crisis’. Accordingly, dementia acts like an undetected thief who ‘steals lives [ … ] at the hearts of families’ (Alzheimer’s Society 2012a). The progressive loss of cognitive abilities thoroughly questions, disrupts and alters the biographies of close and long lived socio-emotional bonds between partners, within families, relatives and with friends. Dementia, then, is not just ‘simply a terrible disease’ (ibid.), but a theft of close and highly affective social relationships. As a thief that steals social relations it progressively spreads malignant forces across society and future generations, whilst increasingly troubling our health care system and upsetting our economy. Dementia is the enemy of personal and social life. Thus, Cameron stresses, like other ‘killer diseases’ such as HIV and cancer, dementia needs to be ‘cracked’ (ibid.).

In many ways, Cameron’s diagnosis articulates a late version of what Michel Foucault (2003a) called ‘biopolitics’. For Foucault, biopolitics is an on-going complex development since the nineteenth century and refers to the ‘acquisition of power over man insofar as man is a living being, that the biological came under State control. (…) It is the power to “make” life and “let” die’ (ibid.: 239). It refers to

techniques that could be used to take control over bodies. Attempts were made to increase their productive force through exercise, drill, and so on. They were also techniques for rationalizing and strictly economizing on a power that had to be used in the least costly way possible, thanks to a whole system of surveillance, hierarchies, inspections, book-keeping, and reports – all the technology that can be described as the disciplinary technology of labor. (Ibid.: 242)

Later on, this process of disciplining bodies has been accompanied and transformed by a new technology: the ‘biopolitics of the human race’ that treats humans not as individual bodies, but as a ‘global mass that is affected by overall processes characteristic of birth, death, production, illness, and so on’ (ibid.: 242). With the technologies of biopolitics, medicine became a matter of institutionalizing medical care, which goes hand in hand with ‘normalizing knowledge’ and ‘campaigns (…) to medicalize the population’ (ibid.: 244). Foucault’s analysis also stresses that these biopolitical technologies ‘incapacitate individuals, put them out of the circuit or neutralize them’ (ibid.), which is primarily the ‘problem of (…) old age, of individuals who, because of their age, fall out of the field of capacity, of activity’ (ibid.).

Following the Foucauldean analysis of nineteenth century biopolitics, it seems that the collective denial of dementia – as a problem of old age – is very much an effect of biopolitical neutralization of old age related problems.² Dementia, however, returned as an issue of twenty-first century biopolitics once it was not conceived primarily as a problem of old age, but as a problem of aging societies. In that sense, Cameron’s biopolitics diagnoses first of all a ‘terrible disease’ of an aging population. Obviously, his diagnosis of dementia as a disease relies heavily on genetics, neuropathological and molecular biology (cf. Bond 1992, Fox 1989, Lock 2005). Cameron’s political aim is precisely to generate a common understanding of dementia that does away with the idea that dementia is a natural part of becoming old. To do so, he requires a general symbol that advocates his understanding: Dementia as disease. The symbol holds since it is grounded in research, although the aetiologies of the different conditions and symptoms that make up dementia are highly unknown and those which are meant to be known remain contested.

Thus, dementia became a biopolitical symbol of a contemporary societal disease that refers to a complex and serious neuro-pathological problem, which needs to be diagnosed and treated, prevented and cured. Moreover, as a spreading and progressing illness of aging societies it not only has fatal and devastating effects on the personal and social life, it also produces enormous costs that threaten the economy. Hence, illnesses like dementia are issues of common interest since they affect the nation, as Cameron would say. Dementia, then, is a general and public issue as it refers to a bodily impairment with dramatic effects for personal and social life. It names an impairing process

in which there is progressive decline in multiple areas of function, including decline in memory, reasoning, communication skills and the ability to carry out daily activities. Alongside this decline, individuals may develop behavioural and psychological symptoms such as depression, psychosis, aggression and wandering, which cause problems in themselves, which complicate care, and which can occur at any stage of the illness. The causes of these illnesses are not well understood to date but they all result in structural and chemical changes in the brain leading to the death of brain tissue. The main sub-types of dementia are: Alzheimer’s disease, vascular dementia, mixtures of these two pathologies (‘mixed dementia’) and rarer types such as Lewy body dementia, dementia in Parkinson’s disease and fronto-temporal dementia. The term ‘Alzheimer’s disease’ is used sometimes as a shorthand term to cover all forms of dementia. The dementias all share the same devastating impact on those affected and their family carers. Dementias affect all in society irrespective of gender, ethnicity and class. They can affect adults of working age as well as older adults. People with learning disabilities are a group at particular risk. (Department of Health 2009: 15–16)

For the biomedical model, dementia is a non-curable illness circumscribing the deterioration of mental agility and capability, memory and intellectual power, a slowing down of thinking and processing thoughts which goes hand in hand with problems of the intake and reproduction of new mental content. These processes of prostration affect problems and losses of understanding, orientation, judgment, calculation, language and the self. People with dementia often show altered behaviour, depression, difficulties in controlling emotions and abrupt mood changes. As a consequence, independent and taken-for-granted everyday life activities become more or less impossible and consequently social relationships (personal and non-personal) are often severely disrupted and altered.

The loss of bodily functions has neuro-pathological effects, which generate symptoms that trouble personal and social life. Dementia is a brutal but democratic actor: Everybody may be affected by it with the same ‘devastating impact on those affected’. Clearly, from such a perspective, it is the bio-medical impairment effects, and not the contingency of social markers, which manifest the self-evidence of a societal problem as one of common interest although the causes of the disease remain highly unknown and scientifically contested (cf. Alzheimer’s Society 2012a).³

Symbolic Biopolitics

Clearly, Cameron’s bio-medical spin is a half-baked one and highlights the symbolic viz. representationalist framing of contemporary biopolitics. From the current bio-medical point of view, dementia does not name a disease, but rather the symptoms of an illness of illnesses syndrome. The British National Health Service (NHS) stresses that dementia is not a disease but a collection of symptoms that result from damage to the brain. These symptoms can be caused by a number of conditions. The most common cause of dementia is Alzheimer’s Disease (National Health Service [no date]). Typical for symbolic biopolitics, the complexity of an issue needs simplification (cf. Scott 1999), a ‘standardized package’ (Star 1999), a catch phrase or a single word to address a problem as a compromised but ‘common’ one that effectively symbolizes or represents a problem of general interest that ‘touches’ everybody’s concern without having to name the specificities attached to it. Late modern biopolitics is symbolic Politics, politics of representation.⁴ Evidently, then, the better a symbol travels the better it fits a generalized public of possible voters that will recognize and promote the general issue as a common one.

This is my point: Although extremely talkative about common concerns, symbolic Politics is about general representations and not about the specificities of the issue at stake. In Cameron’s case, the rhetoric of ‘dementia as a disease’ leaves out the non-homogeneity and multiplicity of causes that lead to a complex and diverse set of symptoms that circumscribe ‘dementia’. Rather, Cameron’s simplified understanding of ‘dementia’ functions as an umbrella term that lumps together causes and symptoms. Clearly, it seems that Cameron mistakes the symptoms for its causes; by insisting that ‘dementia’ is a disease he is wrong. This, however, is not very problematic for current biopolitics, since what counts is the symbol that is meant to represent and perform a general concern, fully addressed by symbolic Politics.

Concomitantly, the symbolism of biopolitics defines how we should see dementia. Dementia that stands for Alzheimer’s Disease and other illnesses refers to an already publicly widely used symbol for a personal and societal adverse event. ‘Dementia’ symbolizes a propagating problem of the mind that could affect all of us. Although one does not know exactly what it is, as a symbol of a potential and serious risk for human health it works efficiently precise since it travels well and thus acts as a perfect intermediary for communicating biopolitical interests. In that sense biopolitics instrumentalizes ignorance, uncertainty and insecurity in order to secure its own particular understanding of dementia along the rhetoric of common interest. Thus, in line with nineteenth century biopolitics, it is important to convey that the disease is a biomedical problem that inflates with the ageing of societies and is not just a naturally occurring problem of old age.

Technologies of Reason and Truth

Symbolic biopolitics aims to attempt a common truth about dementia as one of common interest. Typically for such rationalizing and globalizing rhetoric is the instrumentalization of statistical data. These technologies of truth give the diagnosis of a problem a scientific, mathematical and logical outlook. They serve a symbolic economy of knowledge of self-evidence, even then when the issue at stake – like dementia – is (scientifically) barely understood. General statistics and purified scientific research results such as rates, figures, numbers, maps, patterns, and estimations function as necessary technologies which by abstracting from their own process of production simplify and thus dramatize the symbolic value of a societal issue that is meant to demand biopolitical action. These biopolitical technologies translate – more or less vulpine and inventive – controversial, uncertain and complex knowledge and knowledge processes into easily accessible matters of fact that provide the relevant synoptic informational ploy to argue as if it is a matter of stable, given knowledge and undisputable truth.

Following James C. Scott, the ‘stylized facts’, as described above, ‘are a powerful form of state knowledge, making it possible for officials to intervene early in epidemics, to understand economics that greatly affect public welfare, to gauge whether their policies have the desired effect trends, and to make policy with many of the crucial facts at hand’ (1999: 77). We have seen that Cameron’s diagnosis unravels dementia as an alarming, epidemic situation for which the nation is not prepared.⁵ It is precisely the societal neglect of dementia which has co-fabricated the progressing crisis. Cleary, in the case of dementia, the stylized facts are ways to cope with a long-standing history of neglecting the personal, scientific, social, political and economic challenges posed by dementia.

The stylized technologies function as symbolic techniques of self-assuring political reason and truth in order to settle an issue as generally understandable and of societal importance. As techniques of simplification these symbolic technologies are meant to bridge the gap between expert reasoning (scientific and so on) and everyday life knowledge. These technologies, however, are not just neutral tools of securing and simplifying knowledge for democratic use. Scientific and mathematical techniques are used as technologies that are meant, as good technologies, to self-evidently symbolize secure knowledge by reflect...