A delicate balance: negotiating renal transplantation, immunosuppression and adherence to medical regimen

Peta S. Cook and Alexandra McCarthy

Queensland University of Technology and Griffi th University, Australia a b s t r a c t Despite the volume of biomedical and psychosocial discourse surrounding both renal transplantation and the immune system, there is a limit to current understandings of immunosuppression in the context of kidney transplantation. For example, we do not know how the immunosuppressed renal transplant recipient experiences and understands their immune system and body. In addition, we do not know if the patient is as fi xated on 'graft survival' as their healthcare team or whether other concerns are more relevant. What is missing is the discourse of those who actually 'live' the medically altered immune system in the context of renal transplantation.

We propose that this gap in knowledge is bound to an acknowledged problem among renal transplant recipients and their healthcare teams -a lack of compliance with recommended medical regimens. Our argument here is that an exploration of patient intimacy with transplant-related immunosuppression might illuminate a different understanding of this experience that could enhance health professionals' understanding and their subsequent approach to treatment. We contend that the embodied and contextual experience of the patient needs to be equally valued in order to enhance patient outcomes.

Introduction: Biomedical perspectives of renal transplantation and immunosuppression

From the biomedical perspective, transplantation is the 'transfer of living cells, tissues or organs from a donor to a recipient, with the intention of maintaining the functional integrity of the transplanted material in the recipient' (Merck manual, 2006a). Renal transplantation, which involves the grafting of either live or cadaveric kidneys into a recipient body, is the treatment of choice for individuals in end-stage renal failure. This procedure obviates the time-consuming, lifestyle-constricting and costly dialytic procedures that are otherwise necessary to clear the body of accumulated wastes in the absence of functioning kidneys.

From the perspective of health professionals working in the area of organ transplant, 'survival' following renal transplantation is dependent on the host body accepting the donated 'alien' tissue. Such acceptance relies on the inhibition of the body's immune reaction to prevent the rejection of the donated kidney. This pharmaceutically induced suppression of physiological difference between host and donor, has made organ transplantation a viable treatment. The judicious use of immunosuppressive drugs, coupled with constant immunological surveillance of kidney recipients for the life of the donated organ, has resulted in standard renal transplant survival rates of between 70 and 90 per cent one year after transplant (Merck manual, 2006c). There have also been reports of functioning grafts up to 30 years after the procedure (Merck manual, 2006c). In theory, the dosage of immunosuppressive agents is delicately balanced between selective repression of the immune system to ensure graft survival, and ensuring some degree of immune protection against disease. The obvious and unfortunate consequence of this practice, however fi nely tuned, is the immunosuppressed body inevitably becomes open to infections and diseases that can lead to the death of transplant recipients [START_REF] Brenner | The spectrum of complications of immunosuppression: Is the time right for hand transplantation?[END_REF]Merck manual, 2006b). Some of these drugs also have considerable toxicities that are not well tolerated by patients. Their side-effects include, but are not limited to, oedema, systemic hypertension, hyperlipidemia, diabetes, mood and sleep alteration, high blood pressure, renal insuffi ciency, infection, obesity, osteoporosis, gastric ulcers and various malignancies [START_REF] Sherwood | Human physiology: From cells to systems[END_REF][START_REF] Burke | Medical management of the liver transplant patient[END_REF][START_REF] Green | Organ transplantation[END_REF][START_REF] Fireman | Immunosuppressants[END_REF]. Inherent in the great care taken to balance these issues is recognition that the post-transplant recipient teeters continuously and precariously between organ rejection and infection.

Understandably, given the acknowledged biomedical focus on maintaining the functionality of transplanted material in the organ recipient (Merck manual, 2006d), the compliance of patients to a medical regimen for graft preservation is of constant concern to health professionals. Renal patients in general are not notable for their compliance with pre-transplant medical regimens, let alone post-transplant medical regimens. Unsurprisingly, non-compliance is the most commonly cited reason for graft failure [START_REF] Chisholm | Impact of clinical pharmacy services on renal transplant patients' compliance with immunosuppressive medications[END_REF][START_REF] Kreiger | Novel immunosuppressants[END_REF][START_REF] Moloney | Renal transplantation, immunosuppression and the skin: An update[END_REF]. We believe that there are two reasons for this.

First, the patient's understanding of the immune system is largely fi ltered through the lens of biomedical science, involving macrophages, antibodyantigen complexes, renal insuffi ciency and disturbed metabolisms. This complex language is fashioned from a closed biomedical fi eld by select practitioners who work in that fi eld. Like the immune system, renal systems are biomedical constructs, assembled and maintained through biomedical knowledges and technologies [START_REF] Haraway | Simians, cyborgs, and women: The reinvention of nature[END_REF]. This establishes a strict boundary between transplant science and the patient, with scientifi c knowledge often provided to the patient in a supposedly attenuated, easily digested form by the healthcare professional. The aim is to provide some kind of scientifi c and medical literacy to enhance patient compliance to medical regimens. Additionally, patients and the lay public are 'educated' on science and medicine through the media. The media and their portrayal of these issues is an extremely important source of public information, but one that does not necessarily provide a comprehensive picture. Hence, in this initial framework, compliance is related to patient levels of knowledge and understanding. We will return to this later.

Second, and most importantly, while these biomedical discourses are valid, there is more to the experience of transplant-related immunosuppression and adherence to medical regimen than 'graft survival'. This connects to the lived experience of 'being' an immunosuppressed body. The literature on this is sparse, though sociologists and anthropologists of biomedicine have come some way to providing some understanding. In the process, they have provided invaluable insights that might enhance clinicians' comprehension of what it means to adhere to immunosuppressive regimens. This article explores these issues in terms of the immune system and the maintenance of social order; and the post-transplant body. It should be noted that this exploration is a theorization of existing literature. In the future, we plan to expand this to an empirical examination. The aim of our analysis here is to indicate signifi cant gaps in the fi eld, which, we believe, compromise the treatment and care of individuals who experience a compromised immune system, particularly post-transplantation. Empirical research is particularly lacking with respect to embodiment and the subjective, private post-transplant body. As such, this article covers signifi cant ground, drawing attention to the complexities of transplantation, immunosuppression and compliance; a complexity that is heightened by tensions that may exist between the social, biological and material bodies.

The immune system and the maintenance of social order

There have been numerous sociological and anthropological explorations of the healthy immune system (for example, [START_REF] Haraway | Simians, cyborgs, and women: The reinvention of nature[END_REF][START_REF] Martin | Flexible bodies: Tracking immunity in American culture -from the days of polio to the age of AIDS[END_REF]. While none of these studies focus specifi cally on immunosuppressed renal health: 11(4) transplant patients, they are none the less useful for our present purposes. This is because they expose the biomedical discourse of the immune system as saturated with aggressive and coercive imagery, which may infl uence the way healthcare professionals and patients alike approach post-transplant medical regimens. Additionally, these examinations highlight strong omissions in our understandings of immune system 'experiences'.

In Western thought, social order has long been a signifi cant concern, and the healthy body has often functioned as a metaphor for a politically healthy society. The body operates as a robust image for social pathology, as it represents the structure and function of society as a whole [START_REF] Otis | Membranes: Metaphors of invasion in nineteenth-century literature, science and politics[END_REF][START_REF] Mccarthy | A rebellious distemper: A Foucaultian history of breast cancer to[END_REF]. The discourse of the immune system provides the analyst with a particularly rich fi eld in this respect. [START_REF] Martin | Flexible bodies: Tracking immunity in American culture -from the days of polio to the age of AIDS[END_REF], for example, describes how the media position the immune system as the chief defender of the body. In such frameworks, the body is articulated as a machine, with the immune system maintaining and preserving the sanctifi ed police-state or nation-state of the body. In these discourses, three consistent sociopolitical themes emerge: martial imagery and the requirement for internal bodily surveillance and policing; the body as a regulatory communications network; and the hierarchy of labour divisions to maintain nation-state integrity. These categories provide a coherent framework that affords some understanding of how the immune system has been constructed and how the immunosuppressed renal transplant recipient may interpret and understand their own situation. We will now examine these socio-political themes in turn.

Martial imagery

The body is consistently portrayed by the media and healthcare professions as a revered nation-state vulnerable to the threat of the 'foreign', as embodied in the 'other' [START_REF] Martin | Flexible bodies: Tracking immunity in American culture -from the days of polio to the age of AIDS[END_REF]. Strict borders are drawn between self and non-self, which are patrolled and protected by a hyper-alert immune system. In these portrayals, the body is a martial nation-state at war with hostile and polluting agents. Constant vigilance, defence and retaliation are the obvious responses to non-self entities that dare to invade the body's external borders. [START_REF] Dwyer | The body at war: The story of our immune system[END_REF], writing from the biomedical perspective, draws on this imagery repeatedly. For Dwyer, the immune system consists of a series of security systems, forces and checkpoints, which protect 'the sacrosanct environment of a body ' (1993: 33). These self-preservation techniques additionally involve metaphors such as guard dogs, barbed wire, spotters, bouncers and identity checks [START_REF] Dwyer | The body at war: The story of our immune system[END_REF]. Every native cell in this policed body is equipped with a proof of identity that protects it against attacks from the body's own defence mechanisms, while intruder 'records' are stored in the vast archives of the immune system's memory cells [START_REF] Dwyer | The body at war: The story of our immune system[END_REF][START_REF] Martin | Flexible bodies: Tracking immunity in American culture -from the days of polio to the age of AIDS[END_REF]. The potency of this imagery is reinforced by the section titles of [START_REF] Dwyer | The body at war: The story of our immune system[END_REF] text, including 'The War and the Warriors', 'Taming the Warriors', 'The Defeat of the Warriors', 'Where are the Generals?' and 'Assisting the Warriors'. The brutal power of this metaphorical discourse is perhaps no more vivid than in the following: Quite destructive soldiers, kept for this purpose [to deal with an 'intruder' demonstrating 'destructive behaviour'], would seize upon the hapless violater [sic] and kill him with a combination of chemicals and repeated stabbings -the security business is not a pretty one. (Dwyer, 1993: 35)

Communication networks

In addition to these martial metaphors, [START_REF] Martin | Flexible bodies: Tracking immunity in American culture -from the days of polio to the age of AIDS[END_REF] analysis also makes it clear that this nation-state is not controlled by one organ alone. It is a 'kind of biologic democracy, wherein the individual members achieve their ends through an information network of awesome scope' (Jaret, 1986in Martin, 1994: 415). The role of communication in this nation-state is paramount. The immune system takes on this role, operating as the body's regulatory communications network: a sophisticated and fl uid confi guration of command-control-communication-intelligence (C3I) [START_REF] Haraway | Simians, cyborgs, and women: The reinvention of nature[END_REF][START_REF] Martin | Flexible bodies: Tracking immunity in American culture -from the days of polio to the age of AIDS[END_REF]. The cunning specifi city of this network means intruders who do not speak the language are subject to mechanisms of control through extermination. Hence, the immune system's communicative role of identifying self and other is vital for the militaristic immune activities. In this fashion, 'the immune system is a plan for meaningful action to construct and maintain the boundaries for what may count as self and other in the crucial realms of the normal and the pathological' (Haraway, 1991: 204). [START_REF] Martin | Flexible bodies: Tracking immunity in American culture -from the days of polio to the age of AIDS[END_REF] argues the outcome of this is a discourse permeated with imagery of force and control, which in effect domesticates violence and makes aggression seem an ordinary and natural part of daily life. We would argue that this aggression and violence also justifi es the severity of many medical practices in immunosuppression and transplantation. In turn, such approaches heighten the medical construction of body-as-machine (the disembodied object) in preference to the body-as-self (the embodied subject).

Labour divisions

All nation-states, including bodily democracies, tend effectively to function primarily through hierarchical divisions of labour. In immune system discourses constructed by the media and biomedicine, these hierarchies tend to be informed by the traditional, stereotypical gender differences of the wider body politic [START_REF] Martin | Flexible bodies: Tracking immunity in American culture -from the days of polio to the age of AIDS[END_REF]. This includes performing work often associated with the masculine ethos of the clinic. Thus, as [START_REF] Martin | Flexible bodies: Tracking immunity in American culture -from the days of polio to the age of AIDS[END_REF] demonstrates, the T-and B-cells, which are positioned in these discourses at the apex of the immune system hierarchy, are portrayed as masculine. Their war-like actions include killing intruders through phallic activities of penetration and injection. T-cells are also posited as highly specialized, tactical and almost intellectual entities, who orchestrate the defensive system health: 11(4) and store memories of past enemies for future reference [START_REF] Martin | Flexible bodies: Tracking immunity in American culture -from the days of polio to the age of AIDS[END_REF]. In contrast, lower-ranking members of the hierarchy, such as phagocytes and macrophages, assume a distinctly feminine cast [START_REF] Martin | Flexible bodies: Tracking immunity in American culture -from the days of polio to the age of AIDS[END_REF]. Their feminine work, which refl ects the labour of household maintenance, involves the drudgery of cleaning up or engulfi ng foreign particles [START_REF] Martin | Flexible bodies: Tracking immunity in American culture -from the days of polio to the age of AIDS[END_REF]. They are also stereotypically female and motherly in their self-sacrifi ce on behalf of bodily integrity when confronted with threatening invaders. The longstanding association of the female and the uncivilized that has been well explicated in feminist theories (for example, see [START_REF] Birke | Feminism, animals and science: The naming of the shrew[END_REF][START_REF] Birke | Animal performances: An exploration of intersections between feminist science studies and studies of human/animal relationships[END_REF][START_REF] Mccarthy | A rebellious distemper: A Foucaultian history of breast cancer to[END_REF] is also evident in immune system discourse that describes their other lower order function of cannibalizing dangerous parts of the self.

These biomedical portrayals of the immune system as a violent and gendered communication network may place the renal patient, who has their immunosuppression induced as a life-saving measure, in an ambiguous position. For example, one individual in Martin's study visualized the immune system as an attacker, designed to protect the body's boundaries from external assault: 'your body is going to get ready to defend itself and destroy the bad stuff, the bad guys ' (1994: 177). When given the opportunity, however, individuals may employ other imagery, particularly related to the more benign aspects of political networks. This includes metaphors of fl ow and fl ux that predicate the immune system as a constant that is everywhere and nowhere in the body; a responsive agent that is subject to variation and change [START_REF] Martin | Flexible bodies: Tracking immunity in American culture -from the days of polio to the age of AIDS[END_REF]. Therefore, while the lay person may not have a purely biomedical understanding of the immune system, they can demonstrate an understanding of its complexities and ambiguities. In other words, while their comprehension is not framed by rigid biomedical 'fact', they do have an understanding that involves complex human issues and expertise [START_REF] Claeson | Scientifi c literacy, what it is, why it's important, and why scientists think we don't have it: The case of immunology and the immune system[END_REF]. The public account and negotiation of illness, however, can be different to private accounts of experiencing illness. Importantly, the way people engage in this 'talk' is vital for the bodily experience of self [START_REF] Kelly | Medical sociology, chronic illness and the body[END_REF]. Thus, it is reasonable to surmise that the immunosuppressed individual may have their own ways of understanding the immune system, which are beyond medical understandings of immune system biology, and are infl uenced by their own experiences, knowledges of and interactions with the world [START_REF] Claeson | Scientifi c literacy, what it is, why it's important, and why scientists think we don't have it: The case of immunology and the immune system[END_REF].

While these studies are fascinating explorations of immune system perceptions, they are mostly conceptualized by those who are neither transplant recipients nor immunocompromised. This highlights a signifi cant gap in knowledge. Namely, we are missing perceptions and possible ambiguities of the medically-altered immune system by those who intimately experience its functions and alterations. We do not know how immunocompromised individuals understand or construct the immune system, let alone how they understand and construct their bodies in the immunosuppressed state. Such individualized negotiations and embodied experiences are undoubtedly signifi cant for the healthcare profession and professional. This knowledge gap may compromise patient treatment and their quality of life. A major problem in current knowledge therefore is a lack of empirical research. What this also highlights is that while it is important to understand how people who are immunocompromised view the immune system, it is also important to understand their diverse relations and the contextual experiences of their embodied selves in such a state. Consequently, we wish to explore the literature detailing the possible challenges in living with a post-transplant, immunosuppressed body. This is divided into two concerns: the objectifi ed and medicalized body; and the subjective and private body. The fi rst point relates to how medicine understands the post-transplant body, which is often framed around compliance rhetoric. The latter, with a focus on the 'lived' social and material body is often viewed in direct opposition, though no existing literature specifi cally deals with these issues. These considerations illustrate a complex network of immunosuppression, transplantation, compliance and contextual experiences of the body. Again, we focus on a theoretical examination of existing literature in order to emphasize the shortcomings in existing knowledge.

The objectifi ed and medicalized post-transplant body

As noted previously, post-transplant immunosuppression may cause signifi cant side-effects for the patient, such as infection and treatment-related disease. Pharmaceutically induced immunosuppression can therefore create further health problems or exacerbate existing ones, which may adversely affect quality of life and familial relationships. Such experiences highlight complex psychosocial problems associated with pre-and post-transplant adjustments, which include lifestyle adaptations that can alter relations between self, family and others [START_REF] Rauch | Accepting the gift of life: Heart transplant recipients' post-operative adaptive tasks[END_REF]. In addition, complex emotions accompany the wait and the receipt of a donated organ. These emotional states, which can be exacerbated by immunosuppressive drugs, have led to over 50 per cent of transplant recipients reporting mood changes, adjustment disorders, depression, post-traumatic stress, delirium and psychiatric problems [START_REF] Rauch | Accepting the gift of life: Heart transplant recipients' post-operative adaptive tasks[END_REF][START_REF] Fukunishi | Psychiatric disorders before and after living-related transplantation[END_REF][START_REF] Jowsey | Psychosocial challenges in transplantation[END_REF][START_REF] Dew | Onset, timing and risk for depression and anxiety in family caregivers to heart transplant recipients[END_REF].

Due to these numerous post-transplant challenges, it is not surprising that psychosocial and clinical research is primarily concerned with understanding those aspects believed to infl uence directly the patient's post-transplant quality of life, namely patient non-compliance with medical regimens. The enormous amount of literature on these topics indicates their intense interest to healthcare researchers and providers [START_REF] Martins | Compliance rhetoric and the impoverishment of context[END_REF]. We will now briefl y explore a small selection of this research.

As stated previously, renal patients are not noted for compliance with pre-or post-transplant regimens. In general, patient non-compliance with rigorous medical regimens and lifestyle changes are believed to be health: 11(4) prevalent in post-transplant recipients [START_REF] Jowsey | Psychosocial challenges in transplantation[END_REF], with Laederach-Hofmann and Bunzel (2000) reporting a 20-50 per cent non-compliance rate. As a result, the issue of patient compliance with medical regimens, which is variously referred to as adherence, commitment or concordance, is among the most voluminous, yet least understood, in renal and transplant literature. Compliance research centres on patient behaviours that increase infectious risk or pose a threat of transplant rejection. For example, [START_REF] Donovan | Evaluation of sun-protective practices of organ transplant recipients[END_REF] found that despite an increased risk of immunocompromised post-transplant recipients developing skin cancer, only 18 per cent of 205 transplant recipients practise adequate levels of sun-protective behaviours, with 23 per cent continuing to seek a suntan. Consequently, 'between 35-50% of transplant recipients will develop one or more skin cancers by the tenth year following organ transplantation' [START_REF] Donovan | Evaluation of sun-protective practices of organ transplant recipients[END_REF](Donovan et al., : 1852)).

Generally, 'transplant patients tend to be divided into those who comply with the treatment regime and those who do not' (Baines et al., 2005: 43). In order to identify and circumvent patient non-compliance post-transplantation, [START_REF] Wilkins | The impact of patient education and psychosocial supports on return to normalcy 36 months post-kidney transplant[END_REF] advocate holistic approaches focused on patient survival, rather than graft survival. In this approach, patient empowerment is fostered by building relationships with healthcare professionals and through targeted education programmes. It is argued this facilitates a return to normalcy, which, by default, promotes graft endurance [START_REF] Wilkins | The impact of patient education and psychosocial supports on return to normalcy 36 months post-kidney transplant[END_REF]. Similarly, [START_REF] Bunzel | Solid organ transplantation: Are there predictors for posttransplant compliance? A literature review[END_REF], [START_REF] Levenson | Psychosocial screening and selection of candidates for organ transplantation[END_REF] and [START_REF] Baines | Psychosocial profi ling: A holistic management tool for non-compliance[END_REF] believe patient non-compliance with medical regimens can be identifi ed, circumvented or interceded through detection methods such as psychosocial profi ling or screening. It is claimed these interventions are holistic, providing education and psychological support so patients can demonstrate their ability to comply pre-transplantation [START_REF] Bunzel | Solid organ transplantation: Are there predictors for posttransplant compliance? A literature review[END_REF][START_REF] Levenson | Psychosocial screening and selection of candidates for organ transplantation[END_REF], or to shift their behaviour towards compliance and emotional stability post-transplantation [START_REF] Baines | Psychosocial profi ling: A holistic management tool for non-compliance[END_REF]. We would argue, however, that these interventions are framed around subjective and ambiguous judgements on behalf of the healthcare profession. For example, it is pre-determined 'whether the patient can be suffi ciently educated for the transplant patient role', and 'will be able to form a collaborative relationship with physicians and comply with the medical regimen' (Levenson and Oblrisch, 2000: 23).

In these frameworks, patient non-compliance is perceived as an adaptive challenge that requires medical intervention through active patient cooperation. Educational programmes are aimed at creating psychosocial adjustment so that the patient will accept and deal with their immunosuppressed post-transplant condition in what is deemed to be an appropriate medical manner. This may involve psychological counselling. Hence, noncompliance is reframed as a mental illness. Furthermore, as patient noncompliance is viewed as a waste of precious resources, reasons for patient non-compliance are continuously sought. As a result, recent research has attempted to identify variables that lead to patient non-compliance to circumvent or predict the need for medical intervention. For example, [START_REF] Bunzel | Solid organ transplantation: Are there predictors for posttransplant compliance? A literature review[END_REF] identify non-compliance as determined by demographic and psychological variables, psychiatric disorders, poor social support, obesity, substance abuse and health-related factors. Irrespective of patient control over any of these variables however, failure to comply is often directly or indirectly placed on the patient, who is ultimately held responsible for medical non-compliance and any associated behaviours.

Regardless of the intervention strategy adopted, these are often not very effective in increasing compliance rates. As indicated previously, patient non-compliance is a commonly reported problem in pre-and post-transplant recipients by healthcare professionals. Generally, patients are well informed and knowledgeable about their medications and the consequences of their actions (Laederach-Hofmann and Bunzel, 2000), meaning education programmes targeted at producing or enhancing compliance could be viewed as nonsensical. Patient non-compliance may have nothing to do with adherence to or the diffi culties of medical regimens. For example, the individual might be asserting themselves in the face of medicalized control and power. Perhaps part of this continued healthcare professional impulse to counter patient non-compliance arises from biomedical militaristic metaphors of the immune system and the body as nation-state. Shildrick argues the 'issue of vulnerability, of controlling and eliminating the risk of weakness, … marks the immunocompromised body as a shortcoming ' (2001: 156). From this perspective, immune defi ciency marks the transplant patient as not only vulnerable but abnormal, operating contrary to the biological and societal standards of the nation-state. In other words, the threat of an immunosuppressed body lies in the transgression of boundaries, 'in being irreducibly other to the binary self' (Shildrick, 2001: 159). The irony for the immunocompromised renal transplant recipient is their immunodefi ciency, their 'abnormality', is deliberately induced to ensure graft survival and their survival.

Despite extensive research, which has mostly been defi ned in clinical terms, reasons for patient non-compliance are diffi cult to identify. It is our argument that this lack of biomedical understanding is partially linked to a failure to acknowledge subjective embodiment, as experienced by the patient. In other words, the ambiguity of the post-transplant immunosuppressed body has not been explored from the patient's perspective and their own embodied experiences and negotiations of this state.

The subjective and private post-transplant body

Our explorations have now brought us to this point -what is missing from this biomedical network of transplantation, immunosuppression and compliance?

We believe the answer is the most important voice of all -that of the patient. While it may be argued the patient's experiences have been heard through medicalized discourses of quality of life and non-compliance, health: 11(4) the issue is not that straightforward. Namely, what we have is a network of biomedical discourse wherein the patient, their experiences, their survival and their life, are simplistically relegated to compliance or non-compliance with medical regimens. Thus, work undertaken to date approaches the issue of patient compliance almost exclusively from the clinician's perspective, defi ning it in terms that are important to the healthcare professional rather than the patient. Few studies in the entire health corpus have explored the subjective notion of compliance from the patient's point of view. Therefore, despite extensive compliance literature, the voice of the immunosuppressed patient and the socio-cultural context in which they are embedded is noticeably absent. We plan to rectify this situation in our future research. For now, however, we would like to explore some sociological understandings of the subjective, embodied experience. While this literature does not focus explicitly on the post-transplant, immunosuppressed body, this initial theoretical analysis will provide some insight into how it might be understood and contextually experienced.

The debate about the terminology used with respect to patients' alignment to medical discourse highlights the focus that has been placed on clinician understanding of the concept, rather than that of the patient. In their work, Laederach-Hofmann and Bunzel (2000) suggest the terms 'compliance' and 'adherence' often indicate an unequal relationship between the doctor and patient, where the patient is viewed as passive and solely responsible for any behaviour that contravenes medical advice. This dichotomous relationship is based upon power and control [START_REF] Baines | Psychosocial profi ling: A holistic management tool for non-compliance[END_REF]. In recognition of this imbalance, the terms 'concordance' and 'non-concordance' have recently been posited by the healthcare profession as more desirable, suggesting doctor-patient consensus and patient empowerment rather than patient failure. For Laederach-Hofmann and Bunzel (2000), however, 'compliance' does not subvert the patient, as it implies a certain knowledge and awareness. In this conception, patient non-compliance cannot rest solely on the patient's shoulders, as compliance is measured in relation to patient behaviour that is consistent with a 'required and necessary' medical regimen [START_REF] Barber | Should we consider non-compliance a medical error? Quality and Safety in[END_REF].

We dispute these assertions and again point to shortcomings in compliance and adherence-based research. Even if patient compliance with medical regimens is concerned with health knowledge, this knowledge is viewed only in biomedical terms. For example, if the patient fails to take their imm-unosuppressive drugs regularly, their 'non-compliance' is interpreted as self-irresponsibility in choosing 'certain death' over 'certain life'. As our examinations demonstrate, patient non-compliance with medical regimens indicates to the healthcare professional a need for biomedical education, which will enable them to become an autonomous agent aligned with biomedical discourses. Consequently, the focus remains on patient behaviour; their failure to change and adhere to medical regimens; and the consequent negative outcomes perceived to result from such irresponsibility. Hence, medical compliance, patient empowerment and autonomy and their quality of life, are predicated upon a medicalized model of self-regulation, which, as defi ned and mediated by medical expertise, is accorded the highest importance.

While the reasons health professionals have positioned patient behaviour in these ways are understandable, such an approach fails to recognize the patient's own perceptions, knowledge and experiences. Here, a confl ict between the individual (subject) and the biomedicalized (object) body arises. Namely, patient non-compliance in the biomedical framework is viewed simplistically as medicinal, behavioural and attitudinal, and undervalues the complex multiplicities of difference that patients bring to biomedical encounters. In other words, patient non-compliance is medicalized through interventionist strategies, even though patient noncompliance may have no connection to medicine or their own health. Thus, the provision of healthcare should be a multidimensional process between the healthcare professional, the institution and patient, where each, and not just the renal transplant recipient, may need to adapt and change their expectations to facilitate a mutually desirable outcome. This approach may also highlight the ways in which patient compliance and non-compliance are socially constructed through a narrowed lens of biomedical knowledge, regimens and procedures. We have argued earlier that patient compliance with prescribed medical regimens may diminish or compromise quality of life and the lived body. By understanding compliance through lenses other than biomedical frameworks, we can see that compliance literature is not actually concerned with patient compliance as such. It is about power and control, and where these are most appropriately located. By focusing on patient insuffi ciencies and a patient's need for education and change, it is evident that the healthcare profession believes that power, knowledge and control are best located in the hands of the biomedical establishment and healthcare professionals. Patient autonomy is subsequently judged as either positive or negative and is based upon their behavioural relationship to medicalized control, which serves to continually produce and reproduce the rhetoric of good (compliant) and bad (non-compliant) patient. We will return to these points soon.

With these considerations in mind, we agree with Martins that both adherence and compliance, 'judge the patient behavior in ways that carry detrimental consequences for the patient and … fail to engage a more robust notion of context ' (2005: 75). In addition, the desire for patient compliance with medical regimens presumes agency and autonomy in the role of patient. This is not the case. Rather, patient compliance with medical regimens involves an individual's sacrifi ce of life [START_REF] Martins | Compliance rhetoric and the impoverishment of context[END_REF], body, self and identity. These sacrifi ces occur by resigning knowledge and control to the medical 'other' [START_REF] Martins | Compliance rhetoric and the impoverishment of context[END_REF]. As a result, power is withdrawn from the individual, who is simply reduced to being a biologically immunocompromised and post-transplant body. In other words, the desire of the healthcare profession for patient compliance is only concerned with health: 11(4) an objectifi ed and medicalized body, and not the subjective experience of lived embodiment. The ability to decide one's own quality of life, including self-sacrifi ce and self-determination, is generally not considered. That is, patient compliance with post-transplant medical regimens could, from the patient's perspective, compromise their quality of life rather than enhance it. It is not surprising that patients are 'non-compliant' when their social and embodied human lives are disregarded in such a reductionist manner.

Signifi cantly, these studies on the experience of immunosuppression also focus exclusively on the body as static. The inference is that the body is unchangeable and operates simply as a protective boundary from outside infl uences. Therefore, what is external to the body is perceived as a dangerous threat, which the immunocompromised individual needs to deal with by complying with a medical regimen. Non-compliance, as the antithesis of compliance, is viewed as choosing death over life; the pathological over normal; illness over health; and the undesirable over the desirable. These medicalized dichotomies, however, are not necessarily the everyday embodied reality of the patient. Rather, the relationship between the immune system and the body is complicated and ambiguous, intimately involving things external to the body on an everyday basis other than infectious 'threats'. When one considers the experience of immunosuppression, these complexities could be numerous. For example, accepting a foreign renal graft involves blurring the self and other. This experience is heightened further through natural and unnatural transgressions in immunosuppression. With or without the immunocompromised experience, however, the body is fl uid and open to the outside world [START_REF] Martins | Compliance rhetoric and the impoverishment of context[END_REF]. Therefore, the everyday 'lived' reality of embodiment blurs biomedical hierarchical binaries. At the same time, we do not know if immunocompromised transplant recipients actually experience their bodies in this fashion.

While biomedical interventions and technologies have destabilized the individual body and privileged the biomedical and objectifi ed body, the post-transplant body remains attached to individual people as subjects, who need to negotiate and manage the biomedical discourse in which they are now embedded. As mentioned previously, this management occurs in a particular socio-cultural context, and not simply in a biomedical framework. In particular, the meanings of immunosuppressed bodies produced by biomedical technologies and 'experts' are not necessarily meaningful or recognizable to the renal transplant patient, as biomedical interventions may construct the individual in ways that do not align with the patient's self-recognition and their embodied, lived experience.

In asserting the body as a social phenomenon however, we are not ignoring that the body has a biological component. Rather, bodies are social, material and biological constructions, and biomedicine has a socially acknowledged position in understanding the medically altered body. Therefore, meanings attributed to bodies by medical technologies and individual experiences of illness are crucial in the construction of self and social identity [START_REF] Kelly | Medical sociology, chronic illness and the body[END_REF], meaning the body can be experienced simultaneously as a medicalized object and an embodied subject. This multiple and complex nature of self and identity illustrates that the attention of health professionals should not be simplistically focused on the biological body, where the current aim is to align patients to biomedical discourses. In turn, sociologists should not be solely concerned with the social and material body. Rather, we need understandings of how and when the post-transplant and immunosuppressed body is experienced individually as object and subject, and when it is experienced simultaneously as object and subject. In other words, we need both a sociological and medical framework in which both the biological and social bodies are considered. Through such an approach, we need also to explore how these complexities intersect with the various complexities and understandings of being an immunosuppressed, post-renal transplant recipient.

Conclusion

The goal of kidney transplantation is to improve the quality of life of patients in chronic renal failure. Nonetheless, renal recipients must make enormous lifestyle changes to maximize their chances of survival and good health while undergoing lifelong immunosuppression. From a healthcare perspective, this includes patient compliance with medical regimens. As we have explored, biomedical discourse on patient compliance universalizes and mechanizes the body and its experiences, ignoring multiplicity, complexity and context. In addition, compliance rhetoric only targets one body -the biological body as diagnosed through and determined by medical expertise and technologies -and undermines the material and social body. This dualistic and hierarchical structure of privilege can only understand the body as a manipulative object, which can be rendered as obedient through appropriate medical manipulation and intervention via the healthcare professional. This medicalized approach to the body, however, fails to understand how immune systems, immunosuppression and transplantation are lived experiences of subjective embodiment. It is necessary that healthcare professionals maintain awareness of the individuals who have their own views, negotiations and practices of their complex body, without an impetus to 'intervene' or 'instil change' in patient behaviour. The reduction of the body to a biological and mechanistic object in need of 'expert' intervention does a great disservice to all concerned in renal transplantation.

Our argument here is that becoming a renal transplant recipient and subsequently being immunosuppressed involves the adoption of norms and an acceptance of judgements that often do not originate with the individual concerned. For those labelled as 'non-compliant', medical regimens may be the imposition of normative ideals and practices through a biomedically mediated framework for self-care behaviour which the patient may not identify with.

health: 11(4)

We want to look at the competing forces enacting on and of the body, and the contexts in which these occur. We acknowledge the close relationship between the lived experience of the social, biological and material body, and understand these are important in identity construction and a patient's everyday reality. In the words of Shildrick, 'corporeal and ontological anxiety [sic] are inseparable ' (2001: 159). We want to understand the immunosuppressed body as a lived and embodied experience, not simply as a conceptual or theoretical undertaking which unfortunately, due to the lack of empirical research, we have been restricted in doing here. It is necessary to 'capture how people live the discourse … (to view) people's bodies as meeting places for different fi gures of thought and practices' (Lundin, 1999: 5). When biological boundaries such as immune systems are blurred or effaced, 'then normative boundaries and individual self images' (Lundin, 1999: 6) are also renegotiated. Not only is the material body complicated, so is the biological body. Therefore, through our future research, we seek to understand the social, material and biological bodies in the post-transplant, immunosuppressed experience, and the intersections that exist between them. We seek the delicate balance in the complex network of transplantation, immunosuppression and compliance. As such, we are not only concerned with the 'lived' experiences and intricacies of the material and biological bodies, but also the complications that exist between them and the multiple contextual experiences of 'being' post-transplant and immunosuppressed. We believe that through such understandings, a common ground can be forged between the medical establishment and the immunosuppressed posttransplant individual. We have set ourselves no easy task.

  k e y w o r d s compliance; embodiment; immunosuppression; renal; transplantation. a d d r e s s Peta S. Cook, QUT Carseldine, E block, Beams Road, Carseldine, QLD 4034, Australia. [Tel: +61 7 31384780; fax: +61 7 31384719; e-mail: p2.cook@qut.edu.au] a c k n o w l e d g e m e n t s We would like to thank Dr Margaret Gibson and Mr Ramon Shaban for their comments on earlier versions of this article.

Cook & McCarthy: A Delicate Balance

Author biographies

p e t a s . c o o k is a sociologist at the Queensland University of Technology, Centre for Social Change Research. Her research interests include the sociology of health and illness, science, technology, non-humans, social policy, social change and the body. Her current research projects examine the local/global tensions of xenotransplantation (animal-to-human transplantation) as a medical tourist therapy (xenotourism); and an empirical examination of the socio-cultural aspects of xenotransplantation in Australia.

a l e x a n d r a m c c a r t h y is a registered nurse and sociologist located at Griffi th University, School of Nursing and Midwifery. Her teaching, research and political activities focus upon the clinical and sociological aspects of renal and oncology practice. Her current research projects investigate a range of issues related to compliance and self-care in dialysis patients; and the long-term socio-cultural and physiological implications of cancer survivorship.


A 'little world of your own': stigma, gender and narratives of venereal disease contact tracing 1

Antje Kampf

Johannes Gutenberg-University Mainz, Germany a b s t r a c t As in other countries, in order to protect the public from venereal disease (syphilis and gonorrhoea), contact tracing in New Zealand has been a public health strategy since the mid-20th century. So far, scholars have predominantly focused on the aspect of control of the cases traced. Based on a rare interview with a female contact tracer, together with a range of archival material, this article aims to expand the scholarship by focusing on the tracer instead of the patient. Using Erving Goffman's original concept of 'courtesy stigma', the article will show that his idea can be nuanced to take into account contact tracers and the ways in which this stigma can be refracted through gender. Working as a tracer had a distinct impact on her life and possibly even her marital status, which were compromised by secrecy, stigma, morality and the demands of public health policies -aspects that were, paradoxically, quite similar to those she traced. The courtesy stigma that contact tracers for venereal disease acquired limited their professional options, as well as isolated them in the non-stigmatized social world. k e y w o r d s contact tracing; gender; New Zealand; stigma; venereal disease a d d r e s s Prof. Antje Kampf, PhD (Auckland), MA (Cincinnati), Junior Professor for the History, Philosophy, Theory and Ethics of Medicine (Gender Aspects), Institute for the History, Philosophy, Theory and Ethics of Medicine, Johannes Gutenberg-University Mainz, Am Pulverturm 13, D-55131 Mainz, Germany. [Tel: +49 (0)6131 39 33401; fax: +49 (0)6131 39 36682; e-mail: antje.kampf@uni-mainz.de] health: 12 (2) Many thanks to Aaron Fox, Gabrielle Fortune and Sara Buttsworth for their insightful comments and suggestions, and Belinda Rule for her impeccable editorial help.

A recent assessment of the experience of nurses working in Sexual Health Services in New Zealand in 2003 identifi ed a 'psychological impact of negative social attitudes', not only on 'the people who visit sexual health services' but also on 'the staff who work there' (White and Mortensen, 2003). Working with a range of sexually transmitted diseases, it was found that sexual health nurses came to be associated 'with the "dirty" aspects of sexuality' (White and Mortensen, 2003). This is not, however, a recent problem. These nurses were standing at the culmination of a social trend that has impacted on public health nurses for decades. Some 30 years earlier, public health nurses went outside the clinic to search for the sexual contacts of infected patients, and to track down patients who missed their treatment appointments. These so-called 'contact tracers' were subject to a similar stigma to that of the sexual health nurses in 2003. Contact tracer 'Marsha' (pseudonym), a New Zealand Department of Health public health nurse, and from the 1970s to the mid-1980s a contact tracer for venereal disease (gonorrhoea and syphilis), was known by the police, the local Department of Health and at the venereal disease clinic, but when interviewed she maintained that her life was 'a little world of your own because you can't talk to anybody about it'. [START_REF]Interview with 'Marsha[END_REF] In his classic study on social stigma and illness, Erving Goffman (1990) drew attention to the 'spoiled identities' of stigmatized people suffering from mental disorders or disabilities. They were not alone in experiencing stigma, Goffman (1990: 43-4) argued, as those associated with stigmatized people also had to face social degradation -a condition he called 'courtesy stigma'. [START_REF]On the reception of his concept[END_REF] Family members or friends of those struck with a disease or condition that was connected with negative social attitudes had to live in two realities: in the world of the non-stigmatized, and in the social world of the stigmatized. Goffman's theory has remained important to sociologists, who have discussed the impact of stigma predominantly on families and friends (Alonzo and Reynolds, 1995). However, few have applied this idea to health care providers (Durham, 1994). I will use the concept of courtesy stigma for this historical account of the experience of contact tracers of venereal disease, extending Goffman's idea and arguing that health care providers are also stigmatized because of their association with stigmatized patients and (in the case of contact tracers) their connection with promiscuity and illicit behaviour. This article emphasizes that the stigma extended to those apparently in control of stigmatized persons, the contact tracers. In response to even the possibility of being ostracized, contract tracers withdrew themselves from parts of society voluntarily, as well as being excluded by their work.

There is a gender component here that needs to be explored, as there is a history of association between women and venereal disease, from the Contagious Diseases Acts of the 19th century onwards, particularly during both world wars, in Britain and New Zealand. Fear of venereal disease has been used as an excuse to regulate and intrude on women's lives, more than has been the case for men (Brandt, 1987: 161-74; Dux, 2001: 47-64; Fleming, 1989: 94-7, 177-81; Gilman, 1988: 245-312; Hall, 2001: 132; Jarvis, 2004: 79-84; Lemar, 2001: 144-7; Mooij, 1998: 139-42; Sturma, 1988: 725-40). What is specifi cally gendered about the profession and its associated stigma is that the majority of contact tracers were female, as were the majority of cases traced, while informants and doctors were predominantly male. As promiscuity and illicit sexual behaviour were connected to marital status, singleness was seen as an increased risk factor for acquiring venereal disease. To be single and to be female meant to be tainted and stereotyped. The original idea of a courtesy stigma, however, is not a specifi cally gendered concept. Recently, scholars have used the category of gender to refi ne an analysis of courtesy stigma for families and friends, but so far, little has been written on health care providers. This article will show that the concept of courtesy stigma can be nuanced to take into account contact tracers and the ways in which this stigma can be refracted through gender.

Despite the considerable number of scholars working in the area of the history of venereal disease, and on traced patients and their control, little has been written specifi cally on the contact tracers themselves (Davidson, 1996; Smith, 1996). A major reason for this gap in our knowledge is the scarcity of sources on contact tracers. Contact tracing and venereal disease infection have always been a sensitive matter. Thus, detailed information in health fi les is often missing. Specifi cally, for the second half of the 20th century, access to patient fi les has been restricted due to confi dentiality issues and privacy legislation. In New Zealand this situation is further complicated, as the number of contact tracers for venereal disease remained very small throughout the 20th century, meaning there was little organizational structure to their profession. In addition, it is possible institutional knowledge about disease surveillance and the contact tracing function was lost with the merger of the Department of Health and Hospital Boards in the 1980s. [START_REF] Thanks | [END_REF] So, how can we gain understanding of the role of tracers? Oral testimony has been a useful method of revealing the lives of those who are missing from offi cial histories. It is a method used particularly in Women's History, which has often found a tradition of female silence in other sources, and also valued in medical history for its ability to recapture patient voices (Davies, 2001; Geiger, 1992; Morantz et al., 1985). Tracking down New Zealand contact tracers has proved to be very diffi cult, which made the opportunity to interview Marsha in her capacity as a contact tracer special indeed. [START_REF]The interviews passed through the ethics procedure of the University of Auckland Human Subject Ethics Committee[END_REF] Now in her 80s, it was the fi rst time she had told someone outside of her profession about her work in the decades after the Second World War. There is an irony in continuing to conceal Marsha's identity by using a pseudonym; however, this is necessary to protect the privacy of the interviewee. My theoretical approach in terms of women's narratives has been informed health: 12 (2) by Chilla Bulbeck's method of dealing with women's oral histories, and a feminist ethics of dealing with the material and process of interviewing. While I do not adopt her self-consciously feminist stance, I parallel Bulbeck's effort to use interviews for an 'understanding of the meaning people ascribe to their lives' (Bulbeck, 1997: 6). I use thematic interviews to attempt to recapture the work of the contact tracer. This article uses this oral testimony in addition to the only other -to my knowledge -published interview of a New Zealand contact tracer during the Second World War. Taking a qualitative approach, this article places both accounts in context with interviews of health offi cials, partly unpublished archival material from the Department of Health and clinic reports. These further contextual sources are not supplementary material, but are used with the interviews for mutual illumination, each providing information and supplying new lines of inquiry for each other. This article cannot claim to provide a universal account of the contact tracer's role, but it can elucidate whether the experiences of the two tracers in question were an indicative example of a contact tracer's role, or constituted unique experiences (Singer, 1997: 1-33).

Development of contact tracing

As in other countries, there was a slow shift of emphasis in public health, originating in the late 19th century. A focus on the need to clean up the urban social environment was gradually replaced by an interest in the responsibility of the individual in preventing infectious diseases. Notifi cation, examination and treatment became the main tools of infectious disease control in the 20th century (Dow, 1995: 73-8; Porter, 1999: 165). Female nurses had a specifi c role in this process, of bridging and networking between patients, doctors and the State. With only part-time venereologists available, of whom the majority were male, nurses occupied a larger role than usual in frontline dealings with patients and follow-up of treatment. [START_REF] Interview | [END_REF] As nurses, they were more invested in this aspect of health care; yet the tracers' own patient focus did not by itself infl uence health policy to become more patient-focusedthat was left to Health Department offi cials and venereologists. Since the mid-20th century, following international trends (Davidson, 1996: 195-8; Lemar, 2001: 151-5; Wollacott, 1994), contact tracing has been a major public health strategy of the New Zealand Department of Health, used to protect the public from venereal disease and control outbreaks or further propagation.

The precursors of contact tracers in New Zealand were the so-called 'health patrols', which in order to 'protect the health and morality of young persons', were offi cially introduced with the 1917 Social Hygiene Act. This Act also established venereal disease clinics around the country, and stipulated for the fi rst time that an infected person was obliged to seek treatment (New Zealand Statutes, 1917, clause 12: 3-5). These public health measures were deemed necessary due to concerns about the health of returned servicemen, and about the increasing numbers of mainly young single women who were coming to urban areas in search of work and -it was feared by welfare groups, the Department of Health and doctors -of extra-marital affairs, which would lead among other ills to venereal disease infection. This action to curb an expected increase in venereal disease infection in the population was further infl uenced -as in other countries -by fears for national effi ciency, as the majority of those infected were in the prime of their lives, and by fears for maternal and infant health (particularly with syphilis infection) (Bryder, 2003; Porter, 1999: 166-82, 186-90).

By contrast to other infectious diseases such as pulmonary tuberculosis and AIDS, gonorrhoea and syphilis were not compulsorily notifi able throughout the 20th century. Thus, the health patrols were not originally intended to trace people already identifi ed by the Department as infectious, but instead were to target individuals of both sexes who were not chaperoned in public places, and in whom infection might be identifi ed and treated at the clinics. There were unfulfi lled suggestions, such as those by the YWCA, also to use the women patrols to encourage men away from the path of immorality (Coney, 1986: 92). The health patrols were comprised of women only, a policy similar to that adopted for tuberculosis control measures, where the Department preferred the use of women due to allegedly better effi ciency (Bryder, 1991: 120). The patrols turned their attention to the young, single females who were increasingly visible on the streets, and to children living in unhygienic conditions, which was believed to make them vulnerable to contracting venereal diseases (New Zealand Gazette, 1918: 2823).

Due to controversy over their alleged emphasis on moral rather than health matters, the Department disbanded the patrols by 1922. [START_REF]Herbert Chesson to Thomas Valentine (Director General of Health)[END_REF] The apparent public health need to control venereal disease did not abate, as by 1925 the Social Hygiene Regulations introduced conditional notifi cation, requiring doctors to notify the Department of patients missing from treatment for longer than two weeks, and calling for health inspector nurses to search out these 'defaulters'. Yet lack of staff and fi nancial resources circumscribed the outcomes of these initiatives. Until the Second World War, female nurses at the clinics only occasionally, and in an unoffi cial capacity, followed up cases.

During the Second World War, a perceived threat of increased venereal disease in wartime, and the presence of American servicemen in New Zealand -of whom alone in June 1942, 17,000 came to New Zealand shores (Baker, 1965: 73) -prompted health offi cials to make contract tracing a priority in disease prevention once more. [START_REF]Letter, Michael Watt (Director General of Health) to Arnold Nordmeyer (Minister of Health)[END_REF] Statistics seemed to justify these fears, as female attendance for syphilis and gonorrhoea per annum at the clinics nearly doubled between 1939 and 1942 (AJHR, 1945: 3; Mercer, 1941: 343-4). It was not established whether this increase in clinic attendance indicated a real increase in incidence of disease. The statistics related to clinic attendance only, and thus refl ected the absence of men due to the health: 12 (2) Services, and also failed to refl ect that many (married) middle-class females went to a general practitioner privately, of which we have scarcely any statistics. Nevertheless these numbers fed into the debate by the police and welfare groups about the sexual morality of young, single women who came to towns (Montgomerie, 1989) and were often regarded as 'the primemovers in proposing sexual inter-course', and the origin of infection. [START_REF] Anzw | Letter, New Women's Club to Nordmeyer, 7[END_REF] The 1941 Venereal Disease Regulations established the fi rst offi cial contact tracers for venereal disease, four years later than in England. They were to trace defaulters as well as suspected cases (Thin, 1984: 269-72). Most often these contacts came from male patients at the clinics who informed of their female contact. The number of contact tracers, however, was small. Sources document only three female nurses being employed, one each for Wellington, Auckland and Christchurch.

Dwindling venereal disease numbers after the Second World War resulted in the deprioritization of contact tracing. Then, in the mid-1960s, venereologists were alerted to an upsurge in venereal disease rates, related mainly to changes in the sexual behaviour of the young (associated with rising illegitimacy rates), and a persistent lack of notifi cation by clinics and doctors. [START_REF] Canterbury | Sexually Transmitted Diseases Questionnaire[END_REF] Legislative changes in 1964, however, left the notifi cation procedures as they were, as the medical profession and most Medical Offi cers of Health (MOHs) feared 'possible ethical and legal implication' if stricter notifi cation were instituted. [START_REF]Précis of New Zealand law on venereal disease with certain proposals[END_REF] They maintained it would drive infection underground, endanger patient-doctor relationships and compromise patients' rights (Platts, 1964: 83). [START_REF]Minutes of the Conference on Venereal Disease 29 October 1965[END_REF] Yet the venereologists' call for the attachment of professional contact tracers to all clinics gained ground only slowly. [START_REF]Venereal disease correspondence and conferences 1973-6[END_REF] The employment of these contract tracers was subsequently instituted under the old Regulations -the fi rst full-time public health nurse for contact tracing began work in 1974 at the Auckland Venereal Disease Clinic -but in an uncoordinated fashion and by the initiative of local hospital boards only. Venereologists seem to have preferred female workers 'as they get better results'. [START_REF]Venereal disease correspondence and general matters 1970[END_REF] Here, the narratives of contact tracing were gendered: the 'feminine' traits of social networking and involvement in the community seemed to be obvious in female contact tracers, who followed up more cases and were seen to be more caring.

There was a change to contact tracing in the post-war years, with the addition of international tracing and chain tracing to the list of contact tracers' tasks. Chain tracing was the idea of fi nding not only the immediate contact, but also any subsequent contacts. This modifi cation in contact tracing strategy refl ected a change in belief about the cause of venereal disease. At the times of health patrols, venereal disease was thought to be predominantly connected with the immorality of the prostitute or 'amateur', and later also that of the wayward husband. It was a matter of fi nding the one sexual contact. Now there was a change in focus, as the understanding was that at least three people were involved. [START_REF] Interview | McMahon worked as part-time venereologist in several hospitals, including military hospitals, around New Zealand from 1953[END_REF] Venereal disease was considered to be connected to promiscuity and individual sexual behaviour, and the group of people to be investigated was expanded. Contact tracers such as Marsha were to fi nd 'friends, acquaintances or relatives of cases who had similar behaviour patterns, and who were likely to be infected' (Bierre, 1973: 383).

By the mid-1970s contact tracing was considered 'almost more important than the actual treatment', illustrating the growing emphasis on personal behaviour and prevention at a time when the availability of drugs, which could cure venereal disease infection (penicillin and sulfa drugs), increased personal risk-taking. [START_REF]Minutes of the National Conference on Venereology[END_REF] At the same time, the Department introduced 'contact slips' at the clinics with a code for diagnosis, and a patient's number only, so that the patient was able to pass the slip on to his or her sex partner, saving patients 'the need for embarrassing explanations'. [START_REF]The public health nurse and contact tracing in the Venereal Diseases Unit at Auckland Hospital[END_REF] This so-called partner notifi cation in many clinics subsequently supplanted contact tracers' tasks.

The contact tracers' role

The contact tracers' tasks were defi ned as: fi nding contacts; handing out the Departmental forms; and bringing contacts to the clinics if necessary. The outcome of their work was treatment, and only in a very few cases prosecution. This work, however, entailed a much wider commitment. A tracer's role combined those of a public health nurse, a social worker and a kind of detective in one person. This role developed in an erratic fashion, it was uncoordinated and it existed under a cloud of secrecy.

The education and training of contact tracers remained piecemeal and inadequate, indicating the low status of the profession. There was a lack of professional development for the nurses. The contact tracers who were offi cially introduced in 1941 were trained public health nurses, but they did not receive medical training on venereal disease or manuals on tracing, except for a list of the current laws and regulations. The pay for their work was insuffi cient. It took three years after their initial appointment to provide contact tracers with the pamphlet 'Plain words: A guide to sex education', yet even this pamphlet most likely did not include information on venereal disease. [START_REF]Librarian Health Department to Postgraduate Nurses' School[END_REF] Wellington's contact tracer, Margaret Macnab, remembered her training had nothing 'to do with social hygiene, with people who were suffering from social diseases' (Macnab, 1989: 30). This lack of information parallels the lack of information given to servicewomen during the Second World War: it was feared that knowledge of venereal disease would somehow contaminate and corrupt women -in contrast to servicemen who were quite graphically informed. This pattern in gendered information provision continued.

The post-Second World War role of a contact tracer more closely resembled that of a social worker, with venereologists expecting her to help with 'Rehabilitation in family living, health education and personal advice in prevention'; in short to offer a 'community service'. [START_REF]Venereal disease correspondence and general matters 1970-3, CH588 14/6[END_REF] Yet initiatives to send tracers to the United States for training in social work and contact tracing were halted for fi nancial reasons. [START_REF]Minutes of the National Venereologists' Conference[END_REF] By 1971, still only 10 per cent health: 12 (2) had professional training. [START_REF]Minutes of the National Venereologists' Conference[END_REF] Marsha recalled being very much left to her own devices in tracking contacts, and that her success was due to her initiative and 'detective work'. [START_REF]Interview with 'Marsha[END_REF] Offi cial sex or venereal disease education was by the 1970s still in its infancy: before the late 1970s there were no New Zealand Departmental booklets on venereal disease, and the Departmental sex education booklets since 1964 contained only very general information. Marsha used an American comic-style book for educating teenagers, and on her own initiative occasionally gave talks at youth prisons and high schools, offering personal advice, as well as talks to doctors about how they could help with information provision. [START_REF]Interview with 'Marsha[END_REF] In short, contact tracers' work was sidelined, at least from a professional point of view.

The lack of informational material and training was coupled with a lack of authority to enforce their positions, at least for female tracers, although they could engage the police when patients resisted coming to a clinic or doctors' rooms for examination and treatment. Occasionally they had to ask for police protection but, in contrast to their male colleagues, for a time they had no warrants to legitimize their position to the police -a situation only changed after complaints from the contact tracers. [START_REF]Letter Hubert Smith to Watt, 27[END_REF] This problem reoccurred in the 1960s, a situation not eased by a Departmental policy that saw tracers working in civilian clothes and using private rather than government cars. 25 A major responsibility of a contact tracer was to protect the identity of informants and secure patient privacy; only the Department, medical practitioners and the police were to know of the persons with whom they had their appointments (Macnab, 1989: 35). As already noted, tracers did not wear their nursing uniforms or drive a government car. Confi dentiality, as Marsha acknowledged, was the main requirement for success: it was '110 per cent important that they can trust you'. [START_REF]Interview with 'Marsha[END_REF] Yet contact tracing was frequently handicapped by insuffi cient information, forcing tracers to use street descriptions or physical features (Macnab, 1989: 30). These descriptions could be useless, such as 'she goes to the hotel at Friday nights and she drinks Southern Comforts', or cheeky, as in, 'Kathleen -with a generous superstructure'. [START_REF]Interview with 'Marsha[END_REF] Wrong or out-of-date addresses gave contact tracers a tiring and often unsuccessful hunt around town. In 1944 one-third and 1945 more than one-half of the contacts in Wellington could not be located (Morgan, 1947: 90-1). With often insuffi cient or false data being provided, inevitably forms would be served to the wrong woman, causing much distress. Tracing reports for the 1940s and the 1970s reveal that of all notifi ed venereal disease cases only half, in some cases only a quarter, ultimately proved to be infected. [START_REF]III Venereal disease general 1943-57, Department of Health, Auckland District Offi ce BAAK series (hereafter BAAK), A358/143a, Archives New Zealand/Te Rua Mahara o te Kâwanatanga, Auckland Offi ce (ANZAKL), New Zealand; 'The varied role of a contact tracer[END_REF] Macnab, for example, remembered with regret how in one instance the notifi ed woman turned out to be a virgin, and the man a liar (Macnab, 1989: 38). By contrast, MOHs, who did not come into close contact with those traced, seemed to have been more worried about libel suits. 29 They took a view similar to that espoused in the only offi cially endorsed venereal disease pamphlet at the time: that no harm was done by false notifi cation except to the woman's 'self-esteem', a 'small price to pay for such a valuable means of tracing the source of infection' (Martyn, 1942: 23). The fear of defamation charges -as it was a libelous act to claim wrongfully that a person had venereal disease -was still expressed by the 1960s. William M. Platts, foremost venereologist in New Zealand in the post-war decades, warned in 1963 about the prospect of 'aggrieved female[s]' who 'may start thinking in terms of damages'. [START_REF]Platts to Taylor[END_REF] It appears that confi dentiality and secrecy limited the tracers' capacity for networking, and handicapped their personal and professional lives. At least until the fi rst conference of contact tracers was convened in 1985, sources do not reveal any networking activities between contact tracers (Keane, 1986). [START_REF] Keane | To the Contact Tracers Conference at Futuna Wellington on the 3rd November 1986[END_REF] Marsha, for example, did not know of her other colleagues. [START_REF][END_REF] As she was unable to share confi dential information, the work with nurses at the clinics was 'very diffi cult sometimes'. [START_REF][END_REF] There did not appear to be any advancement in professional status associated with their new role, and their work -though spearheading what could be called 'social work' -ended up contributing little to the general standing of nurses today. Instead, there was social exclusion in a professional sense.

The necessity to associate with places and persons of dubious repute contributed to the courtesy stigma and the ensuing social reclusion of contact tracers. Marsha's job, as that of the other tracers, was rough, diffi cult and often thankless. This 'underground work', for example, kept Marsha 'apart from my colleagues'; she was 'always working alone' and doing 'a lot of late night work'. [START_REF] Holmes | Interview with 'Marsha[END_REF] To deliver Department forms, the tracers had to walk in unsafe places at night, and stay in bars or run-down boarding houses; they moved 'amongst promiscuous teenagers and seafarers; in taverns and amusement parlors'. [START_REF]Napier Venereal Diseases Clinic Report 1973-74[END_REF] Marsha also remembered situations that brought her close to the drug scene and gangs. [START_REF]Interview with 'Marsha[END_REF] Clearly, these duties were contra productive to establishing a marriage, family or much of a social life, particularly as the tracer was not allowed to speak to anybody of her work. Contact tracers were thus isolated, a feature usual to the experience of stigmatized people. Contact tracers' concealment, a work requirement as much as a tribute to the stigma of disease, transformed tracers into what Goffman has called a 'discreditable' person, by way of a 'differentness [that] is not immediately apparent' (1990: 57).

Tracing contacts

Contact tracing was a controlling strategy, directed towards turning aside the increase in venereal disease infection and in numbers of defaulting patients that was also occurring in America, Australia and Great Britain in the 20th century (Fairchild et al., 2003; Hall, 2001: 135-6; Lemar, 2001: 150-60). 37 In New Zealand, health patrols were 'policing their own sex' in the early 1920s, and during the Second World War venereal disease sufferers were also subjected to greater control (Fleming, 1989: 197, 199).

health: 12(2)
Contact tracers did use some coercion. Contact tracer Cameron's plea that her job was not of 'a "Police" nature' reveals she was aware of the double nature of her duties -to care for and control -a position exacerbated by the authority to engage the police if a person resisted. [START_REF]Letter, Cameron to Watt[END_REF] Marsha also emphasized that word 'soon gets around. If you don't go you will be taken by police.' [START_REF]Interview with 'Marsha[END_REF] Yet contact tracers' control of patients, and tracing success, during the Second World War and in later decades, was often incomplete for various reasons, and it would be too easy to ascribe to contact tracers a purely policing role. Contact tracers' authority was sidelined when patients arrived, as many did, on the advice of their sex partners rather than as a result of the coercion of the tracer (Black and Farb, 1943: 34). This trend was supported by the Department, which insisted it preferred to have patients bring their contacts to clinics on their own initiative. [START_REF] Anzakl | Venereal disease general 1939-1943[END_REF] Despite stringent regulations, the majority of patients went to private doctors or used selfmedication, escaping contact with the law, and thus control (Dallas and Rainey, 1948: 39). Health offi cials were too busy with other issues to act to stop this, and feared legal action if patients were wrongfully removed; and many doctors also continuously neglected notifi cation. [START_REF]Letter Hubert Smith to Watt[END_REF] Arrests for failure to comply with notices served were negligible in the Second World War, as in later decades. In 1943, the police were called in 35 cases, constituting less than 1 per cent of venereal disease patients undergoing compulsory treatment at public clinics, at a time when national attendance fi gures were 1480 patients (AJHR, 1945: 3; Morgan, 1947: 90-1). Marsha, who served several hundred notices, had only six or seven persons arrested in her seven years of work -it was 'a very rare situation'. [START_REF]Interview with 'Marsha[END_REF] Although there was a conjunction with the medical profession, the Health Department and the police, contact tracers none the less worked predominantly by themselves and within the social worlds of those they traced.

There was also open resistance to contact tracers -confi rming Judith Walkowitz's point that women still exercised agency despite being subjected to control by reformers and social workers, and were 'not innocent because they [were] on the sidelines [of power]' (1992: 9-10). At times contact tracers experienced violence, when traced persons proved not to appreciate their supervision. Contact tracers complained of a large population of transient persons who were diffi cult to fi nd, and who were 'complete liars'. [START_REF]Wellington Report to Conference in Wellington 1972[END_REF] Patients often refused to give names or stated false addresses. While David Evans (2001: 241) found in the English context no proof of 'informal compulsion', sources for New Zealand suggest that at least some people felt cornered. Despite Macnab's (1989: 33) insistence that she never experienced 'any physical antagonism' towards herself, it seems unlikely that this did not happen. Tracers' work was dangerous at times, requiring fortitude and character. A Christchurch colleague listed in her report to the Nurse Inspector that she had had to pay 'Danger money. My life has been threatened twice.' [START_REF] Letter | Ramsay to Miss Mann Nurse Inspector[END_REF] Marsha was hit while serving a notice, or threatened with harm. [START_REF]Interview with 'Marsha[END_REF] She was only allowed to interview male clients for contacts, not to trace them, as it was a 'safety thing for me as much as anything'. [START_REF][END_REF] 'I got kicked, I got punched, I got physically assaulted many times.' [START_REF][END_REF] The tracers' role was somewhat contradictory. Although they were to reduce contact with the suspected infected woman to a minimum, and were expected not to involve themselves in the case emotionally, they were none the less to provide a community service that demanded a certain engagement. As Macnab insisted, she was not 'supposed to be concerned with these girls' morals at all … my concern was to be purely a physical one. But it was very diffi cult sometimes not to be involved ' (1989: 35).

It appears that contact tracers rather wanted to be seen as motherly fi gures for the often much younger women they worked to locate and assist. They extended their limited role as they saw fi t, often out of genuine, if patronizing, concern. Their concern was about promiscuity or sexual morals, but more often about social conditions. Their work revealed to the Department that some living quarters of notifi ed women were 'very far from perfect', resulting in inspection visits to hotels. [START_REF]Watt to Dr Shore and Dr McNickle[END_REF] Macnab (1989: 37, 41-2) remembered several instances where she cooked for prostitutes, and she cared for a desperate young mother. Nurse Instructor Flora Cameron recommended that in cases of non-attendance, contact tracers visited the women fi rst instead of sending them a letter. She feared many were too ill to respond. [START_REF]Letter, Cameron to Watt[END_REF] Contact tracer Ramsay listed as tasks in her report: 'fi nding her a suitable home … Finding employment for her … Just listening to her story may take up to an hour, especially if she really loves him.' [START_REF] Letter | Ramsay to Miss Mann Nurse Inspector[END_REF] Contact tracers often accompanied the women to the clinic (Morgan, 1947: 90-1), not only to ensure attendance but also for support. This seemed necessary, given that staff at the clinics apparently treated the women as 'outcasts', and 'had very little knowledge of social diseases and less sympathy with people who suffered from them' (Macnab, 1989: 37, 39). This stance was shared by Marsha nearly 30 years later: 'They have taken a mighty great step in even coming to this clinic.' [START_REF]Interview with 'Marsha[END_REF] A mothering approach appeared again when Marsha turned the misfortune of being traced around, by telling the traced woman that 'the boy has done you a favour' by reporting, as she otherwise most likely would not have noticed the infection. [START_REF]Interview with 'Marsha[END_REF] Her colleague Ms M Ward spent much of her time 'in social help and psychological counselling'. [START_REF]Venereal Disease Clinic Report Christchurch[END_REF] In this sense, contact tracers, after a period of sharing the same society as their stigmatized contacts, became part of their world.

Judgements about sex in relation to marital status have been important in the history of venereal disease. A concern for maternal and infant health was paramount to health offi cials, and that concern contained an underlying disapprobation of procreation outside marriage. In brief, it was the married ('innocent') who were believed to need protection from disease and from stigmatization, an understanding that was often shared by welfare groups, the Department of Health and doctors, in New Zealand and in other Commonwealth countries throughout the 20th century (Davidson, 2000: 237-58; Hall, 2000: 85-6; Lewis, 1997: 259-61). Times were set aside at health: 12 (2) clinics in the 1940s for 'married women and innocent people and children'. 54 The 1956 Health Act, section 89, warned specifi cally 'against contracting any marriage' while infected. Stereotypes were perpetuated in the 1970s, when contacts were still divided into 'innocent' (married) and 'others' (unmarried) (Bierre, 1973: 382). Contact slips were designed for tracing 'secondary contacts, such as wives, fi ancées and friends … where considerable delicacy is required'. [START_REF]The public health nurse and contact tracing in the Venereal Diseases Unit at Auckland Hospital[END_REF] For venereologists, treating the married was 'a very delicate situation' and had to be handled 'extremely carefully'. 56 Delicacy, it seems, was unnecessary for those outside the specifi ed categories -single persons who engaged in casual sex apparently did not merit concern.

Single women were predominantly blamed for what was thought to be their promiscuity and propensity to transmit venereal disease. Their sexuality was stigmatized. Unmarried women were a social target in New Zealand as in other countries (Alexander, 1995; Kunzel, 1993). Medical Offi cer Jepson asserted in 1963, 'The main reservoir of infection is in young girls.' 57 The view of venereal disease as not simply a biological entity but also a social disease resulted in married women preferring private doctors, who often did not notify of defaulters. The few statistics incorporating marital status suggest that it was mainly the single person who visited the clinics and who was traced. 58 In this context, contact tracers' work -with its long nights, visits to unsafe places (bars, brothels and gang headquarters) and dealings with stigmatized diseases and stigmatized people -was not conducive to marriage and family life. Indeed, 'husbands would want answers -where are you going? Why?' 59 To become a social recluse was a pre-emptive response to even the possibility of being cast out. There was no offi cial policy that contact tracers were to remain unmarried, and sources remain silent on the marital status of the tracers, but as Marsha put it: 'It was better that we weren't married', a persuasion that kept her, at least, single all her life. 60

Conclusion

When asked about his long-term experience as a venereologist, Dr Kelvin Bremner was adamant that by the 1970s venereal disease was still considered shameful, and infected people 'dirty', and these perceptions rubbed off on doctors who treated it, who were looked down upon socially and medically. 61 The same appears to be true of contact tracers, who came in touch with these 'spoiled identities', in turn rendering them equally isolated. This article suggests that the history of sexual health policy should incorporate the understanding that working as a contact tracer for venereal disease had a distinct impact on a tracer's social life. Tracers' lives were compromised by secrecy, stigma, morality and the demands of public health policy. The courtesy stigma that contact tracers for venereal disease acquired limited their options, as well as isolating them in the non-stigmatized social world. In this, paradoxically, the tracer had a great deal in common with those she traced, as she had to 'suffer many of the standard deprivations' of the courtesy group (Goffman, 1990: 44).

The gendered component should also to be stressed. Tracers often seemed to make sense of their mediating role -which demanded at the same time distance from and social engagement with those traced -by taking a motherly approach. Because the tracer shared the world of the stigmatized to an extent, singleness might have been a personal choice, but the work of the tracer made other options very diffi cult. Tracers' self-imposed social isolation and exclusion from certain aspects of society was also a result of their work. The role of the contact tracer ultimately did not contribute to the advancement of women in the health care system. Their work was too much a secret and too much associated with shunned diseases to provide a building block to further the professional status of health nurses today. Rather, their role refl ected more clearly the traditional female roles in public health.

Goffman noted that stigma, or a tainted social label, changes the way individuals view themselves (and are viewed by others). Marsha, contemplating what it had meant for her to be a contact tracer, was unsure: 'I sometimes wonder if I was chosen for the job because I was a loner or if it was the other way around.' 62

Notes

health: 12 (2) 57. 'Letter, Jepson (MOH)