The Makings of a Modern Epidemic

Endometriosis, Gender and Politics

Kate Seear

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781317024668
• Edition: 1
• Topic: Médecine
• Subtopic: Politique de santé

Since its 'discovery' some 150 years ago, thinking about endometriosis has changed. With current estimates identifying it as more common than breast and ovarian cancer, this chronic, incurable gynaecological condition has emerged as a 'modern epidemic', distinctive in being perhaps the only global epidemic peculiar to women. This timely book addresses the scholarly neglect of endometriosis by the social sciences, offering a critical assessment of one of the world's most common - and burdensome - health problems for women. Drawing on a range of theoretical perspectives, including science and technology studies, feminist theory and queer theory, The Makings of a Modern Epidemic explores the symbolic, discursive and material dimensions of the condition. It demonstrates how shifts in thinking about gender, the body, race, modernity and philosophies of health have shaped the epidemic, and produces a compelling account of endometriosis as a highly politicised and grossly neglected disease. Drawing upon rich empirical data, including in-depth interviews with women who have endometriosis and medical and self-help literature, this ground-breaking volume will appeal to scholars and students across the social sciences with interests in gender studies, science and technology studies and the sociology and anthropology of medicine, health and the body.

Chapter 1 Crisis of the Modern: On Advocacy, Research and the Rise of Endometriosis

DOI: 10.4324/9781315555782-2

Declarations of epidemic are declarations of war.

(Waldby 1996: 1)

Despite its apparent status as the one truly global epidemic to impact women, there has been surprisingly little critical investigation of the dual notions, used so often in relation to the disease, that endometriosis is both an ‘epidemic’ and a ‘modern epidemic’. Each of these assertions seems to demand detailed analysis. To my knowledge there has been no critical exploration of the deployment of these terms, how and where they are used, what they might mean and – perhaps more importantly – how they function once deployed. Epidemics, of course, have already been the subject of much academic attention. There is, for instance, a well-established and sophisticated body of work pertaining to the HIV/AIDS epidemic (e.g. Sontag 2001; Treichler 1999; Altman 1986). In one of the seminal works in that field, AIDS and the Body Politic, author Cathy Waldby describes ‘Declarations of epidemic [as] declarations of war’ (1996: 1). In biomedicine, she suggests, epidemics are ‘crisis points in the Darwinian evolutionary struggle’ between the human and nonhuman. They are typically declared, according to Waldby, when ‘too many bodies succumb’ to colonisation by a viral or bacterial population (1996: 1). Epidemics, therefore, are a symbol of fear and panic, an ontological threat, insofar as the epidemic places, in the biomedical imaginary, at least, the very existence and status of the ‘human’ at risk (Waldby 1996: 1). Waldby's work suggests that questions about boundaries and binaries (such as human/nonhuman) are necessary and intrinsic to any critical study of epidemics. But how are these questions relevant in relation to endometriosis? What added meaning do these questions take on – or how might the questions we ask and the answers that we generate – be shaped by the fact that endometriosis is not simply an epidemic, but so, it seems, a specifically modern one?

It is here – with the question of what it means to speak of, write about, practise and treat a modern epidemic – that I want to begin my analysis in this book. Although I agree with Waldby's argument that declarations of epidemics are declarations of war, I want to suggest that the nature of the ‘war’ will likely differ depending on the specific epidemic in question. For instance, the kind of war articulated via the HIV/AIDS epidemic, saturated as it is with the politics of gender, sexuality and race, among other things, will differ from the kind of war declared via the endometriosis epidemic. If nothing else, the endometriosis epidemic is specific to women's bodies, so a different set of issues and anxieties are likely to be involved. This chapter explores these differences and similarities, with a view to isolating the specific and localised dimensions of the battles that are being materialised via the endometriosis epidemic. This includes, in particular, how each of the various components of the war (nature, culture, human, nonhuman) are enacted. In this sense, I am particularly concerned with how discourses about the endometriosis epidemic work to enact specific versions of (and ideas about) the battle between nature and culture, human and nonhuman, and the wider symbolic and material significance of those enactments. In what follows, I also consider the significance of the specifically ‘modern’ characteristics of this war and what this means for the wider analysis that I will undertake in the remainder of the book.

These issues are explored through accounts about the disease from the field of medical advocacy and research. I have chosen to look at these issues via medical research and advocacy because it is here that declarations of the endometriosis epidemic first appeared and are most often repeated. My focus in this chapter is with the way that two particular accounts of the epidemic – taken from the field of medical research and advocacy – perform the disease and the epidemic. What do these accounts take the epidemic to mean? What are the causes of the epidemic? And why should we be concerned about it? Is a war being declared? If so, who is at war? The two accounts I have chosen to examine appear between 30 and 50 years apart. This is a very deliberate choice on my part, because I am interested in how claims about the rising epidemic diverge and overlap, and any continuity and flux in the ideas contained therein. These accounts, I will argue, are connected in several important ways. Among other things, both involve what are generally understood to be important figures in the history of the disease: advocates who have done much to help bring attention to the increasing incidence of the disease, and to explore the possible reasons for that trend. Each account renders the ‘causes’ of the epidemic differently, but in ways that are interrelated. Importantly, as we shall see, the ‘modern’ figures in both instances as central to the spread of the disease, although the ‘modern’ is performed differently. The two accounts that I explore in this chapter are also connected through their relationship with binary logic. Binary logic, broadly speaking, is a form of rationality involving the use of dualisms or opposing pairs (such as order/chaos, or good/evil). Binary logic underpins Western thought and practice, with significant political, ethical and material implications. In what follows, I argue that accounts of endometriosis perform several binary pairs and that the various ‘limbs’ of each pair are enacted as being at war with one another. This, I will argue, is both symbolically potent and materially significant. Finally, I explore one of the other main ways that both accounts are connected – through their reference to and engagement with monkeys. Monkeys feature prominently in each of the accounts I will examine here, and yet their place in medical research/advocacy and the emergent ‘epidemic’ has been hitherto overlooked. I explore how both of these accounts handle and utilise the monkey, and how the monkey's appearance in each works to produce the disease, the epidemic and the war. In this sense, my deliberations on the role of monkeys demonstrate the importance of attending carefully to the various figures that feature in medical research and advocacy – including those that are often marginalised – with a view to exploring their role in the production of knowledge and the material world. In focusing explicitly on the role of the monkey in this way, I explore alternative ways of understanding the function of medical research and advocacy in relation to disease and epidemics, arguing that it is fundamentally implicated in the making of both.

In this chapter I will argue that medical research and advocacy perform endometriosis as what I will call ‘a crisis of the modern’. Put simply, the declaration of the endometriosis epidemic is a declaration of multiple, intersecting, symbolic, material and ethical concerns surrounding the ‘gendered, natural, human, traditional’ body. Endometriosis emerges as a literal and metaphorical point at which various ‘threats’ to the gendered, natural, human, traditional body are enacted. Through the disease, the dangers thought to be posed by culture, the nonhuman, modernity and industrialisation surface and coalesce. Although some of these dangers simultaneously enact gender (and thus emerge as gendered hazards), a few of the dangers that I will discuss here have no specific relationship to gender. Using my two accounts from medical research and advocacy as exemplars of this process, I also argue that the form of the ‘modern’ – and thus, the nature of the ‘crisis’ – changes over time. I consider the importance of this continuity and flux. As a disease hitherto neglected among most social scientists, endometriosis emerges as a condition deserved of serious academic attention, not least because of its symbolic and material status as ‘crisis’. It is, indeed, an always already gendered, highly politicised and ethically charged phenomenon. In what follows, I introduce a range of theoretical concepts that are relevant to the analysis in this chapter, before I move on to explore accounts of the disease/epidemic.

Binaries and Boundaries

Endometriosis is a disease thoroughly shaped by and through boundaries – by the notion, that is, that all things have their right and proper place, by notions about separation, containment, limitations and frontiers. As well as being underpinned by ideas about ‘bodies’ as bounded and regulated, endometriosis materialises boundaries and concerns about the inappropriate transcendence of them. Take, for example, the following three definitions of the disease found in medical literature. These definitions are typical of those that appear in other literature where definitions of the disease are offered. In each of these examples, notions of ‘inside’, ‘outside’ and the inappropriate transcendence of boundaries are conspicuous:

• Endometriosis is tissue that somewhat resembles the inner lining of the uterus, but that is located outside of the uterus where it doesn’t belong (Redwine 2009: 6; my emphasis).
• Endometriosis, defined by the ectopic presence of endometrial glandular and stromal cells outside the uterine cavity, is a benign yet common gynecological disorder affecting from 1 to 22 per cent of women of reproductive age (Guo 2004: 157; my emphasis).
• Endometriosis is defined as the implantation of endometrium-like glandular and stromal cells outside their normal location in the uterus (Varma, Rollason, Gupta, et al. 2004: 293; my emphasis).

In each of these examples, endometriosis is defined through a certain kind of ‘binary logic’ – an idea often associated with the French philosopher Jacques Derrida. Derrida (2002, 1976) argued that Western logic is dominated by and derived from a series of binary oppositions (or pairings). Examples of binary pairs include: mind/body, human/non-human, reason/emotion, objective/subjective, object/subject, nature/culture, authentic/inauthentic, passive/active, order/chaos and – as with the three examples that I have included here – inside/outside. In binary logic, the meaning of each term in a pair derives in part from its relationship to the other. As well, terms in a binary are positioned as mutually exclusive and hierarchical, so that one term enjoys a privileged and dominant status, while the other is always already deprived and subordinate. So, as Elizabeth Grosz (1989: 27) explains:

Within this structure the opposed terms are not equally valued: one term occupies the structurally dominant position and takes on the power of defining its opposite or other. The dominant and subordinated terms are simply positive and negative versions of each other, the dominant term defining its other by negation.

To take an example: ‘Body is … what is not mind, what is distinct from and other than the privileged term’ (Grosz 1994: 3). As well as the relational and mutually exclusive functions that we can identify as within each pair, there is an important relational function between binary pairs. Binary pairs, put simply, are ‘relationally aligned’ (Grosz 1994: 4). In this sense, the ‘mind’ is not simply the dominant term in the mind/body dualism, but symbolically linked to other dominant pairs, including reason, culture, authenticity and order. At the same time, the ‘body’ is symbolically and literally devalued – first through its association with the more valued figure of the ‘mind’, and then through its symbolic association with its relationally aligned binaries, such as emotion, nature, inauthenticity and chaos. Crucially, as Elizabeth Grosz (1994) has pointed out, the mind/body opposition has also been historically correlated with the male/female binary. In this way, men are symbolically associated with the mind, activity, objectivity, culture, authenticity, order and reason (among other things), while women are symbolically associated with the body, passivity, subjectivity, nature, inauthenticity, chaos and emotion. To the extent that each of the latter is produced as subordinate, women are always already symbolically and literally devalued. In this regard, binary logic has a political and ethical function.

To bring these ideas briefly back to endometriosis, I want to suggest that the disease can already begin to be understood as a thoroughly politicised and debased object. This is because, to begin with, the very definition of the disease is forged through binary logic, involving as it does the idea that tissue spreads ‘outside’ a set of established, normative boundaries. In this regard, tissue that goes ‘where it doesn’t belong’ (Redwine 2009: 6) – as the very hallmark of the disease – is a signifier of absolute subordination and abjection, and of the disease's greater symbolic significance as a state of thorough disavowal. This is obviously hugely significant, and a matter to which I will return.

Binary logic has received much academic attention in recent decades, in fields as diverse as semiotics, critical theory, feminism, race and cultural studies, critical nursing and queer theory. As well as focusing on the existence of binary logic, some of this work has sought to destabilise assumptions about the foundational status of binaries. In much conventional Western thought and practice, for example, the separation between ‘nature’ and ‘culture’ is taken as obvious or given. According to this line of thought and practice, men enter into the world as fundamentally and essentially different from women. The existence of distinctions such as these is already patently obvious, as is the way in which the categories are defined and organised. In addition, the body is understood as self-evidently natural, while the clothing that adorns it is understood as always already cultural. As an extension of this, the status, for example, of ‘nature’, is understood as predominantly stable: there is no sense in which components of ‘nature’ or the ‘body’ can move between binary categories; skin is always ‘natural’ and part of the ‘body’, while a pair of trousers is not capable of being re-categorised as part of the ‘body’, or as ‘natural’ rather than ‘cultural’. There are several reasons why we need to critically engage with assumptions such as these, however. First, and perhaps most obviously, the uncritical acceptance of the prior status of these categories and the boundaries between them tells us nothing about how these very same classes and boundaries are formed. By what means is the body defined as distinct from the clothing that adorns it? How is the body assigned to the category of nature when all manner of other ‘things’ (earrings, reading glasses, iPods, mobile phones) are not? These are important questions, of course, because of the potential for binaries to function politically and ethically.

Because, as I have already noted, binary logic operates ethically and politically (through, for instance, enacting some practices and/or subjects as devalued, while valorising others), the question of boundary maintenance is also crucial:

Binary opposites, once established, do not remain uncontested. They exist in a constant state of flux as boundaries shift to include or exclude, repairing their fractures and eliminating instability. (Magdalinski 2009: 43)

To what extent do binary-boundaries change and/or remain constant? How does contest happen? How might we account for the disruption and/or maintenance of such boundaries? It is critical that we explore the question of how boundaries, assuming them to be mobile and fluid, are formed, maintained and challenged. Questions around the function, formation, maintenance and disruption of boundaries, as we shall see, are crucial to understanding both the formation of the endometriosis epidemic and the politics of the disease. Up until now, I have said little about the question of agency as it relates to binary logic, or to the question of how binary logic might be understood to function. This is an extremely important question, especially for the analysis that I undertake in the rest of the chapter, and it is a question to which I will now turn.

The Power in/of Binaries

It is not possible to speak about binary logic without addressing the interrelated concepts of agency and power. I have already implicitly touched upon these links, albeit briefly, through the seminal work of Elizabeth Grosz. As Grosz (1994) reminds us, binaries always function ethically and politically, through registering some ‘subjects’ as passiv...