Impotent Warriors

Front matter

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Contents

List of Abbreviations vii

Acknowledgements xiii

Introduction l

Part II Bodies And Boundaries

Chapter3 Leaky Bodies 65 Introduction 65 Body Substances 67 Body Substances as Commodity 77 Visibility 79 Shifting Boundaries 81 Extended Boundaries 82 Leaky Bodies 83 Internal Risks 87 Conclusions 90

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vi e Contents

Chapter4 “Weare the Enemy” 93 Boundaries and Borders 94 Theories of Causation and the Immune System 97 Military Metaphors 115 Conclusions 120

Part III Gws As Unique Illness

Chapter5 Veterans’ Associations* 125 The Construction of GWS Narratives 126 The Role of Women 139 “You Aren’t Mad — It’s Chemical” 141 Conclusions 152

Chapter6 The Disappearing Man: Narratives of

Lost Masculinity 154 Semen 155 The Soldier’s Body: The Embodiment of

Masculinity 172 GWS Bodies: The Disappearance of Masculinity 174 “Old Women’s Diseases” 177 Women 180 Conclusions 181

Chapter 7 Impotent Warriors: The Context of

Narratives of Lost Masculinity 183 Military Masculinity 184 Masculinity under Threat 188 Gender Anxiety 196 Leaving the Military 198 The Military Context 201 Conclusions: Embodying Male Lack 206 Conclusion GWS and World Trade Centre Syndrome 208 GWS: An Illness of Our Time? 208 Risk and Vulnerability 211 The medicalisation of Life 216 The Approach of Anthropology 217 Ethical Issues and Dilemmas 222 Conclusions 227 Appendices 229 Bibliography 235 Index 253

*This chapter is not available in the open access edition due to rights restrictions. It is accessible in the print edition, spanning pages 125-153.

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LIST OF ABBREVIATIONS

AGM Annual General Meeting and Respite Week

Here referring to the annual meeting of the GWVA, which provides an opportunity for members to meet, socialise and share information about GWS and the illness movement.

BATS Biological Agent Treatment Set

Preventative medication issued in the event of an attack by a biological weapon. Although it has been widely stated that no UK troops took BATS, a few veterans claim to have taken them.

BFT Basic Fitness Test

Physical fitness is a major aspect of military life and is constantly assessed. This test is the fundamental measure of fitness and must be passed by all recruits before they are accepted into the forces. All soldiers must also pass this test yearly. The test is designed to test aerobic power and muscular endurance. It comprises a 1.5 mile run, press-ups and sit-ups, all against the clock.

BSS Burning Semen Syndrome The experience reported by some veterans and their wives where their semen is described as burning (causing a rash) the woman when it comes in contact with her skin.

CFS Chronic Fatigue Syndrome

A chronic disorder of unknown cause characterised by fatigue, pain and cognitive disorders. Debilitating fatigue is the main symptom and the cause remains unknown.

DoD The US Department of Defence DU Depleted Uranium

Used in projectiles and tank armour and/or organophosphate insecticides.

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viii e List of Abbreviations

FM Fibromyalgia

A systemic condition of generalised pain, often with other associated symptoms, such as sleep disturbance, irritable bowel syndrome and chronic fatigue. The defining symptoms of fibromyalgia are chronic, widespread pain and tenderness to light touch. Veterans often use this term to describe joint and muscle pain.

FSS Functional Somatic Syndromes

A number of illnesses that cannot be identified by physical signs, whose scientific status and medical basis remain unclear. This group of illnesses include: ME/CFS, total allergy syndrome, MCS, food hypersensitivity, GWS, fibromyalgia and sick building syndrome.

GVMAP or MAP Gulf Veterans’ Medical Assessment Programme Part of St Thomas’ Hospital, London; the GVMAP was established in 1993 by the MoD in response to the non-specific symptoms popularly termed GWS, in order to respond to veterans’ health complaints. Any Gulf veteran is entitled to attend, whereupon they are interviewed about Gulf War exposures, health concerns and any other relevant issues. They are subjected to a full physical examination by one of the clinicians and given a battery of tests (see Appendix Three).

GWS Gulf War Syndrome

The term used to describe illnesses and symptoms experienced by veterans of the 1991 Gulf War. It is the popular term used by veterans, reflecting their belief that their illness is a unique organic condition caused by Gulf War exposures.

GWVA The Gulf War Veterans’ Association!

One of the main Gulf veterans’ association in the UK; it is seen as more controversial than the others.

IBS Irritable Bowel Syndrome

An illness characterised by recurrent abdominal pain and diarrhoea, sometimes alternating with periods of constipation.

MCS Multiple Chemical Sensitivity

A multi-system illness resulting from contact with, or proximity to, a variety of substances. Sufferers often report a sensitivity to certain chemicals and other substances such as petrol, smoke, pollen and pet fur.

l. This is a pseudonym.

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List of Abbreviations ¢ ix

ME Myalgic encephalomyelitis

The name given to an epidemic which occurred among the staff of the Royal Free Hospital in London in 1955. The conclusion was that the illness — characterised by headaches, malaise, dizziness, nausea and limb pain — was caused by a virus. This name has continued to be used for post-viral fatigue and is another term, more popular in the UK, for CFS.

MoD Ministry of Defence The overarching body that is in charge of the UK armed forces.

MUPS Medically Unexplained Physical Symptoms Symptoms reported by a patient that cannot be linked to an organic cause.

NAPS Nerve Agent Pre-treatment Tablets

The drugs issued for troops as protection against organophosphatebased nerve agents. Also known by the active ingredient in NAPS: Pyridostigmine bromide (PB).

NBC Suit Nuclear, Biological and Chemical Suit

The full-body suits used for protection against possible nuclear, biological or chemical attacks. The suits were often donned due to a perceived threat. Also called a “Noddy suit”.

NCO Non-commissioned Officer

Military ranks above Private, but below Lieutenant. An enlisted member of the armed forces appointed to a rank conferring leadership over other enlisted personnel, but who is not an officer. They are the junior management of the military. In the British Armed Forces, NCOs are divided into two categories: Junior NCOs (lance corporals, corporals and lance sergeants) and Senior NCOs (sergeants, staff sergeants and colour sergeants).

Non-deployed Veteran

A veteran who was serving at the time of the Gulf War, but was not sent to the Gulf. Some of these veterans claim to have GWS, believing that they were made ill because of contact with Gulf War exposures. Some say they were inoculated in preparation for war and others suggest they came in contact with substances like depleted uranium when they worked on returning machinery.

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x © List of Abbreviations

OPs Organophoshates

A family of chemicals that affect nerve signal transmission by a molecule called N-acetylcholine, which operates throughout the nervous system in many species. OPs have toxic effects due to their capacity to bind to and inhibit the enzyme acetylcholinesterase (ACE). OPs that block insect ACEs but have a lesser effect in humans are used in pesticides. Those that affect humans have been developed as nerve gasses.

Options for Change The move to downsize the military which occurred soon after the Gulf War. This course of action involved redundancies and contracting some duties out to civilians.

PB Pyridostigmine bromide

The active ingredient in NAPS; a drug that acts on the nervous system. It has been routinely used to treat myasthenia gravis, a disease of nerve/muscle junctions.

PTI Physical Training Instructor Individuals in the military whose role is to train soldiers in physical exercise and fitness.

PTSD Post-traumatic Stress Disorder

Often confused with GWS, but a different condition. A psychiatric condition codified in DSM-III in 1980 which is thought to be the product of indelible traumatic memory. Symptoms include flashbacks, difficulty in sleeping, nightmares, hypervigilance, avoidance phenomena, memory problems and concentration difficulties.

RAMC Royal Army Medical Corps

The regiment (part of the larger Army Medical Services) whose role is to promote effective medical services for the Army. Part of its role is to contribute to the fighting strength of the Army. It is responsible for the evacuation and treatment of the sick and wounded in war.

RBL Royal British Legion

The largest and best-known veterans’ association. Although they have been involved in the GWS discussion, they do not specifically focus on the illness. The RBL maintains an interest in GWS and hosts quarterly meetings: “The RBL Gulf Group Meeting” brings together veterans, scientists, doctors, MPs and advocates. During my fieldwork the RBL

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List of Abbreviations ¢ xi also organised and hosted a two-day US Congressional meeting at the House of Lords to discuss GWS and raise the profile of the illness.

Squaddie UK slang for a low-ranking soldier.

TA Territorial Army

A part-time volunteer reserve force. These soldiers often have other careers and are required to commit to 30 days: usually one evening a week, one weekend a month and two weeks a year.

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ACKNOWLEDGEMENTS

I would like to thank my informants. I am indebted to them for allowing me into their lives when it was sometimes difficult to do so. Although in pain and suffering, they were always friendly and courteous. The veterans’ associations were an enormous help in providing information and in finding people for me to interview. I would particularly like to thank the members and the organisers of the veterans’ association with whom I worked — without them this book would not be written.

This book is the product of discussions, dialogue and input from a large number of people. Roland Littlewood’s work on new illnesses was an inspiration for this work and his constant presence was much appreciated, as was his supervision. Allan Young deserves special thanks for inspiring me — at that time an undergraduate at McGill University — on that first day of his medical anthropology class. My Ph.D. examiners, Jeanette Edwards and Simon Cohn, challenged me and helped me to begin the process of refining the dissertation into a publishable piece of work. Their insights have improved this book enormously, and I am grateful to them for their continued encouragement and generosity. Vieda Skultans encouraged me to continue the process of publishing this book and made valuable suggestions on how to improve it.

I would like to thank Amanda Bale, Brenda Hazlewood, and Harry Lee and others at the Medical Assessment Programme for their input and allowing me time in their offices. Edgar Jones read my work and allowed me to explore historical issues; I appreciated his insightful comments. Simon Wessely provided a wealth of information on Gulf War Syndrome (GWS) and related issues. Many of the ideas in this work grew out of discussions with other researchers involved in GWS, making it difficult to remember who said what.

My thanks to friends and colleagues at UCL who provided me with encouragement and allowed me to develop and test my ideas. Murray Last, Nanneke Redclift, Sushrut Jadhav, Sahra Gibbon, Mukulika

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xiv © Acknowledgements

Banerjee, Danny Miller, Simon Dein and David Napier, among other UCL colleagues, offered a stimulating environment in which to work. A special thanks to Sandra Wallman who provided ongoing supervision and helped me to develop my ideas. My conversations with Alex Shand about seminal issues were exciting and stimulating.

Chapter 5 was closely based on a published paper (Kilshaw, S. 2004. ‘Friendly Fire: The Construction of Gulf War Syndrome Narratives’, Anthropology and Medicine Vol.11: 2, pp.149-160) and has been reprinted by permission of the publisher (Taylor and Francis Ltd). Iam grateful for funding from the Economic and Social Research Council (ESRC) and additional funding from the Ministry of Defence (MoD) and the Canadian Department of National Defence. John Royle’s early support made funding from the MoD possible. Ken Scott and Mark Zamorski in Canada gave me the opportunity to explore GWS issues in that country. ESRC made this work possible by funding both the Ph.D. research and a postdoctoral fellowship which enabled me to begin converting my work into this book. The final stage of writing was made possible by a Wenner-Gren Hunt Postdoctoral Fellowship.

My friends and family have kept me sane, particularly by humouring my ability to insert GWS into every conversation. A special thanks to Alixe Bovey and Jeremy Phillips for being such fantastic friends; and for not laughing when my Ph.D.-fuelled madness descended into odd cooking obsessions. Also to my mother, Margaret, and father, Miles, who have always inspired me and whose love of medicine started me on this journey.

A very special thanks to my husband, to whom this book is dedicated, who understood and accepted living on two different continents in order for me to undertake this research. I have been very lucky to have a partner who not only will read my work, but offer intelligent comments. For that, and much, much more, I am eternally grateful.

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Introduction

In June 1993 the UK television programme Newsnight featured a story about American soldiers who had fought in the Gulf War, soldiers who were now reporting a plethora of mysterious ailments. Fatigue, diarrhoea, hair loss and cancer were some of the reported symptoms, but the list included more unusual things like vomit that glowed in the dark and semen that burned. Formerly strong, fit and healthy soldiers were becoming weak and frail. The story spread through the UK Gulf veteran community like wildfire: suddenly the malaise that they had been silently experiencing had a name. They were not alone and they were not going mad, as many of them had suspected they were. For months many veterans had struggled to understand what was happening to them: why was it that they were so tired, so irritable, so unable to cope? Many were experiencing symptoms and illnesses that they found difficult to explain. Now they had a name for what ailed them: Gulf War Syndrome (GWS).

There was a flurry of media reporting which followed the Newsnight broadcast as more and more UK veterans came forward to report their particular symptoms and experiences. Many Gulf veterans became convinced they were suffering from a unique and new disorder which was attributed to: exposure to chemical warfare agents, vaccinations, NAPS (Nerve Agent Pre-treatment Sets) tablets, toxic fumes from burning oil wells, depleted uranium (DU) used in projectiles and tank armour and/or organophosphate insecticides. The story was a good one, as far as the media were concerned: healthy soldiers sent to war to fight for their country and defend Kuwait from the evil clutches of Saddam Hussein only to return ill and suffering. Not only were these soldiers ill in an inexplicable way, what was even more shocking was that it was widely suggested that it was not the enemy, but their own government who were responsible for their plight: a government that was refusing to listen to them or accept any responsibility for the illness. Even more compelling was the story that children were now being born to these soldiers with horrific birth defects.

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It had all the components of a modern-day tragedy. However shocking and upsetting the thought was that the government could be negligent in giving potentially dangerous vaccines and medications to their soldiers — or worse, that they did it on purpose as a vast medical experiment — it remained a believable story. In the aftermath of mad cow disease,! the debate over GM (genetically modified) foods and in the climate that led to the MMR (Measles, Mumps and Rubella) scare, there is widespread distrust of the government and in science and medicine. Scientists themselves are seen as the purveyors of anxiety and risk. Science seems uncertain: you can always find one study to support or dismiss a claim to truth. With this decline in the authority of science comes the decreased authority of doctors. Individuals now are more likely to question and mistrust their doctors. They diagnose themselves, often with the help of a media story, the Internet and/or friends. People feel vulnerable and this is felt bodily. Our immune systems, the key to our health and well-being, are constantly challenged by the increasingly toxic world. It is in this climate that GWS emerged: a story about soldiers becoming ill, their immune systems damaged, as the result of vaccines or toxins administered by a guilty government. It is a story of conspiracy, of secret chemicals and dangerous medicines. There are heroes pitted against villains and innocent children wronged. The story of GWS even has an evil dictator with his hand on the button, ready to destroy the world with chemical and biological weapons.

From September 1990 to June 1991, the UK deployed 53,462 military personnel in the Gulf War (Coker et al. 1999). Results clearly show that a proportion of individuals who served in the Gulf feel their health to be ‘significantly worse than comparable military personnel’ (Unwin et al. 1999). In 1998, 17 per cent believed they have something specific called ‘Gulf War Syndrome’ (Chalder et al. 2001). There is no disputing the fact that many Gulf veterans are ill and yet the reasons for this suffering remain unclear. There is a vast body of literature about the health of Gulf War troops, but very little include sufferer’s accounts. Medical and epidemiological studies have gone as far as they could in explaining GWS; this book argues that a new perspective is vital. An anthropological approach is needed to better understand how sufferers perceive and live with this illness. By looking at the various narratives that surround GWS, through analysing the comments and views given by veterans, insight will be gained into the cultural, social and psychological dimensions of the construction of the illness and into the ways in which this has influenced sufferers’ understandings.

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The GWS debate quickly became polarised, with various parties holding differing views about the question of its existence. At the heart of this discussion was the authenticity of GWS as a unique, physical condition. Despite veterans’ conviction of the organic nature of their illness and the media’s support, medical investigations produced no compelling evidence of a physical syndrome. Studies showed that veterans did not have increased rates of mortality, that there was no single cause and no distinct set of symptoms, suggesting that there was no specific syndrome (Gray and Kang 2006; Ismail and Lewis 2006). The suggestion is that this pattern of ill health is not unique to Gulf veterans. The consensus of the international scientific and medical community is that there is insufficient evidence to enable this ill health to be characterised as a unique illness or syndrome. Thus, the MoD, the government and medical institutions do not recognise “Gulf War Syndrome” as a medical condition. In this book I argue that biomedicine has a rigid, limited view of illness and suffering that is unhelpful and often obscures our understanding of illnesses such as GWS, thereby preventing therapy and recovery. Central to this inadequate standpoint is the dichotomy within biomedicine that sees illness as either physical or psychological.

There is no doubt that GWS has striking similarities to illnesses seen in other postcombat situations (Jones and Wessely 2004, 2005). The same symptoms are seen in UK military personnel who did not deploy to the Gulf as well as in the wider population. What is clear, however, is that soldiers who were involved in the Gulf conflict report more symptoms than comparable military cohorts. Indeed, I found that any symptom, illness or problem could be considered by veterans and/or their supporters as an indicator of GWS (Appendix I and II). The range of symptoms presented by sufferers is vast, but the most common are chronic fatigue, joint and muscle pain, problems with memory and concentration, stomach and bowel problems, and loss of sexual drive. There is considerable overlap with other new illnesses found in the general population, such as Chronic Fatigue Syndrome (CFS) and Irritable Bowel Syndrome (IBS), with veterans often suggesting that these illnesses are part of their overall condition. The biomedical community has focused on the similarity between GWS and these other illnesses, which are labelled functional somatic syndromes or medically unexplained syndromes, and are defined as physical syndromes without an organic disease explanation, demonstrable structural changes or established biochemical abnormalities. As no physical cause can be found, these conditions are often seen as somatising conditions: the expression of psychological problems through bodily complaints.

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4 œ Introduction

I suggest that the medical community’s position on GWS as part of a larger group of psychosomatic, somatising conditions is both limited and flawed. Whereas biomedical interpretations of somatisation often rest on the presumption that it is an expression of psychiatric disturbance, anthropologists have shown that it need not be limited to expressions of psychiatric distress (ie see Kirmayer and Young 1988; Kleinman and Kleinman 1985. There are a number of problems with the medical interpretation of GWS and other contested illnesses. Somatisation is used as though it is an explanation in and of itself and often represents the end of the search for explanation. Concluding that this illness is a form of somatisation is simply not good enough. Instead, one must go further and investigate the symptoms themselves and the specific composition of the illness: the way in which GWS is an expression of particular beliefs and experiences. GWS is not the bodily expression of a psychological problem. Instead, it is a complicated manifestation which reveals the way illness is a combination and intertwining of natural, biological, social, cultural and psychological factors.

We all express ourselves through our bodies and somatic symptoms. This need not be limited to the expression of suffering, but can also be a way to comment upon social or individual dilemmas or merely to convey experience. Somatic symptoms are the most common individual expression of social problems and emotional distress (Kirmayer and Young 1988) and are referred to as ‘idioms of distress’ (Nichter 1981; Kirmayer 1996). Idioms of distress are culturally understood ways of communicating. They are commonly experienced symptoms or problems that are recognised within the culture as indicating personal or social difficulties (Nichter 1981), yet may not be related to psychological problems. Symptoms are used to talk about and negotiate matters other than bodily illness (Kirmayer 1996).

I would agree that GWS shares many features with other medically unexplained syndromes, making it necessary to see it as part of a broader family of contemporary disorders. The cultural influences that shaped GWS are the same forces that helped to construct illnesses such as CFS, IBS and Multiple Chemical Sensitivity (MCS) and, thus, their similarities are deeply relevant. Just as GWS can be seen as part of a larger family of new and contested illnesses, it should also be understood against the backdrop of increasing anxiety about health in the present cultural milieu. Health scares, spurned on by media attention, provide a constant backdrop to twenty-first century Euro- American life. We live in a society perpetually fearful of toxins, allergens, chemicals and viruses that are seen as constant threats to health (Chapters 1, 2 and 3), mainly via their effect on the immune

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system (Chapter 4). Part I and Part II focus on GWS explanatory models and theories of causation and the way in which these resonate with more widespread cultural health beliefs and anxieties.

Although it is necessary to contextualise GWS by situating it amongst other new illnesses and widespread health beliefs, there is a need to bring back the particular. I argue that lumping these conditions together as manifestations of the same thing disregards the uniqueness of these illnesses. Biomedical analysis ignores the differences between these very diverse illnesses and by so doing lacks a real understanding of the conditions themselves and the unique factors which gave rise to them. In order to balance this generalising trend, Part III focuses on the symptoms and themes that make GWS a unique condition.

In this book I draw attention to the more collective aspect of symptom and symptom language. Central to this is the way that, as an anthropologist, I look at and interpret individual symptom reporting differently to researchers from other disciplines. Illness symptoms are not only ‘biological entities’, but can also be conceptualised as a form of communication whereby the individual, having troubles in various areas of life, conveys these in bodily terms (Scheper-Hughes and Lock 1986: 138-39). That is to say, physical symptoms can be seen as part of a process of making meaning out of experience. Of central importance is understanding what symptom reporting is conveying, rather than focusing on uncovering the objective truth of them. Burning Semen Syndrome, impotence and infertility have all become entwined with GWS narratives and become powerful markers of it (Chapter 6) and, thus, are clearly communicating something meaningful (Chapter 7), yet these symptoms are unlikely to be picked up by epidemiological and medical inquiry. The body is a site of angst and resistance. I argue that GWS can be interpreted as the expression of a collective social angst and is a kind of shared bodily language, an expression of social distress as well as a form of commentary. This book seeks to make sense of the cultural circumstances, specific and general, which gave rise to the illness.

By enlisting the methods and theories of anthropology, with its focus on nuances and subtleties, this book provides an additional interpretation of GWS. Between September 2001 and November 2002 I conducted fieldwork amongst the UK GWS community.” During this time I interviewed those involved in the GWS movement: core activists, Gulf War veterans and their family members, as well as

2. I also conducted a small amount of fieldwork into the Canadian GWS community during a short visit to Ottawa.

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doctors and scientists. My main focus, however, was on the sufferers themselves and what they had to say about their illness. I conducted 93 interviews,*? 67 of which were with UK Gulf veterans — the vast majority of whom described themselves as GWS sufferers. In addition to interviews,* contact was maintained with informants to allow for more informal discussions and observations. The veterans were very welcoming and a small number of them were kind enough to allow me to stay with them in their homes. I also spent five days at one of the associations’ Annual General Meeting and Respite week, where I met with many GWS sufferers and advocates.* These and other interactions, such as attending meetings, enabled me to immerse myself in the GWS community.

Aware that theories of GWS are constantly being negotiated and altered as new research emerges, I am interested in the way in which some information is accepted in some circles whilst completely dismissed in others. It is clear that GWS is being constructed and framed differently by different groups and that this process is ongoing. In order to explore the construction of GWS more fully and assess if, and how, knowledge, information, practices and language concerning GWS are mediated, appropriated and transformed, I planned to include selected non-medical sites, namely veterans’ organisations. Although there are a number of associations, I focused on one in order to better contextualise the narrative on a smaller level. Also interested in the way GWS was being constructed in the medical and government settings, I conducted fieldwork at the Gulf Veterans’ Medical

3. Other formal interviews included: eight Canadian veterans, four partners (not including those who were part of the research in a more informal way), fourteen non-soldier “experts”/advocates, and three focus groups, which were conducted with groups of veterans.

4. Most were one-off interviews conducted in the home of the veteran. An interview schedule was used to prompt respondents, who were asked a series of questions regarding their experiences with GWS and other health beliefs. Questions were broad, designed to provide respondents with space to describe their experiences, beliefs and assumptions. Informants were also asked to discuss their military and employment background. The interviews ranged from two to four hours and were audiotaped and transcribed at a later date.

5. The majority of informants were members of the veterans’ association and were contacted through the organisation; others were accessed by other means: the MoD website and newsletter, Soldier magazine, and other veterans’ associations. In order to find a wider selection of informants, the GVMAP selected 39 patients: 13 of whom were not ill; 13 who were ill, but did not attribute their illness to GWS and 13 who were suffering from GWS. The clinician wrote to them informing them of my work and asking if they would be willing to be interviewed. Of those contacted, 21 responded (20 agreed to be interviewed one declined). Four could not arrange interviews for various reasons and, thus, 16 were interviewed.

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Assessment Programme (GVMAP), based in the Baird Health Centre at St Thomas’ Hospital.° I hoped this would enable me to observe the cultural parameters along which medical narratives of GWS were being negotiated. It soon became clear that fieldwork does not always follow a plan and that GWS moves through arenas and society in a fluid way. So instead of focusing on sites, I studied the phenomenon of GWS in a variety of settings by following GWS itself into a variety of contexts in which it was being discussed. A methodological design is thus used which works across ‘texts, practices and contexts’ (Franklin 1998: 5). This type of approach is perhaps best exemplified in Martin’s study of the notion of ‘immunity’ in America that links seemingly disparate field sites and research tools (1994).