About the Author
Thurecht is a consultant medical anthropologist specializing in Women’s
Health, Aboriginal Health and Ageing. Karen travels throughout the Gulf of
Carpentaria, Cape York and central
Good Girls Keep Their Legs Together is Karen’s first novel.
This book is a novel, a work of fiction. Yet it is also the truth, an investigation of the social barriers to Pap smear screening for cervical cancer.
It is based on research I carried out for my PhD, for part of which I spoke with 240 women and collected their stories about Pap smear test experiences. The stories of these women have been merged into one story about one woman, but also her mother, her grandmother, her daughter and her best friend. As the book is a novel, I have taken licence in constructing the plot. The events that take place are not real events; they are part of a story constructed to evoke empathy. Yet, while the plot and the characters are fictional, the experiences of the women in the story are real.
My qualification is within the discipline of medical anthropology. The narrative approach taken in this book has a long tradition in anthropology. Typically, anthropologists spend a long time with one cultural group, building rapport with them and gathering information about their cultural beliefs and social structures. Anthropologists sometimes become so close to their subjects that the line between insider and outsider status is blurred, and indeed, the validity of anthropological research itself is dependent upon this close insider/outsider relationship. The truth of claims made by the researcher about her subjects is evidenced in the fact of “being there” (Geertz, 1988:79). Yet when this type of experiential truth is translated into the objective stance of an academic text, there is sometimes a feeling of betrayal. The academic thesis seems artificially contrived. The very stuff of relationships, the essence of humanity, is squeezed dry; the data remain a collection of notions and concepts linked carefully and artfully but without emotion or depth. The text does not feel right. It does not feel like the experience. Too much is lost; often the representation no longer seems to bear any relationship to the truth of the experience. Somehow, the stronger that academic responsibility pulls toward distanced objectivity, the deeper is the sense of the researcher moving away from the truth rather than becoming closer to it. In an attempt to recover some of the essential nature of the experience of research, many anthropologists have overcome their dissatisfaction over writing their academic thesis by writing a second account of their fieldwork in narrative form. (Examples are Maybury-Lewis 1967, 1968; Chagnon 1968, 1974; Rabinow, 1975, 1977; Dumont 1976, 1978; Crapazano, 1980; and Shostak 1989.)
The philosophy underpinning the methods employed in the research for this book drew upon post-modern interest in the essential importance of subjectivity in human research. In the post-modern approach, the researcher is firmly at the centre of the data. Subjective responses to participants, data and text are used as powerful tools of explication, interpretation and communication. No interaction between human beings is possible without the product of that interaction being significantly affected by all the parties involved. When women told me their Pap smear stories, they were interpreting an experience within the context of their values and beliefs, and they were constructing a story for an audience. The stories they told me were constructed for me, a middle-class, white researcher. I am also a woman, and someone who can be expected to understand certain things about sexuality, childbirth and interactions with the medical world without qualification or reserve. Consequently, the stories that women told me were already stories. Then when I represented these experiences within the text of my PhD thesis, I interpreted these stories at another level and within the context of my own values and beliefs. Whenever the reflections of human beings are represented in text, the representation is the product of a number of complex levels of interpretation. The process of writing someone’s story down is itself an important stage of analysis (Clifford and Marcus, 1986).
at this way, the academic writing of this research was an interpretation many
levels removed from the pure truth of women’s experiences. The novel is not
further from this truth; in some ways, it is closer. This novel falls loosely
into what Van Maanen (1988) describes as an impressionist tale. In the
impressionist tale, literary and poetic effects are tools used to evoke
understanding. Van Maanen suggests that such tales may in fact represent the
contemporary world more truthfully than realist accounts.
Nonetheless, this book is not ethnography, the traditional product of anthropology: it is not about a single cultural group in a defined place and time. I draw upon the example of the post-modern authors who argue that the product of anthropology, the written text, is at least as interesting as the people studied, and no less an artefact of Western academic literary culture than the research itself (Clifford, 1988; Clifford and Marcus, 1986; Atkinson, 1992; Van Maanan, 1988). My four years’ research into the barriers to Pap smear screening for Australian women resulted in at least two artefacts. One was the academic thesis; the other is this novel. (The boxes of carefully catalogued notebooks filled with handwritten field notes stored in my garage are an additional artefact. If they were not, I would be able to throw them out.)
This book is also a product of the ‘new public health’. Public health is about whole populations rather than individuals, yet the public health of the twenty-first century is concerned with people’s experiences of the health system and the culture of health. People’s health beliefs have a major impact on their actions in relation to health. With recognition of this, there has come an expansion of health research, from the narrow interests of clinical medicine to a broader cultural view. With the close of the twentieth century, the all-encompassing influence of validity as defined by positivist science finds the grip is slipping on Western cultural institutions. Even the showpiece of twentieth century science, Western medicine, is beginning to acknowledge the shortfalls of a purely objective scientific approach to the health care of human beings. While medical science has assisted in the eradication of death on a mass population scale from many infectious diseases, and highly technical interventions have prolonged life at the individual level for millions of grateful consumers of health care, the solutions offered by medical science to persistent chronic diseases in Western developed countries have been less successful. The consumers of health care have become understandably sceptical of the truth claims of science and have developed an interest in alternative options (Lupton and Peterson, 1996).
Similarly, much public health research has turned its focus toward exploring ways of understanding more effectively how individuals construct their perceptions of health and illness within the Western context, how these perceptions interact to form belief patterns at the cultural level and how these belief patterns are made manifest in behaviour. An undercurrent of interest in the nature of the self and the relationship between subjectivity and human action (including research) has flowed freely, slightly below the surface of strict academic credibility, throughout the last century. Increasingly as we move forward in the twenty-first century, the credibility of such investigations is gaining force.
This book will be of interest to students of anthropology and of the health sciences, and to health practitioners and medical officers interested in women’s experiences of their bodies and our health system. Most of all, this book will be of interest to women, many of whom will see reflected their own experience in the text.
The thesis upon which this book is based responds to the question of why those women at greatest risk of developing cervical cancer are also the women least likely to have regular Pap smear tests. The central thesis proposed was that women who avoid Pap smear tests do so in response to the emotional discomfort they associate with the test. This discomfort relates to two distinct issues: fear of cancer and embarrassment due to the nature of the test.
Over the past
decade, much attention has been paid to the continuing high rates of women’s
cancers in developed Western countries, despite the advances in screening,
detection and treatment strategies. The Pap smear test is a particular enigma in
this regard. It has the potential to virtually eradicate mortality caused by
cervical cancer if women of reproductive age participate in regular screening
for this are well debated both in professional literature and among policy
developers. Changes in policy in
Women’s embarrassment with the test is not irrational or unfounded. It is not even surprising. Scientific evidence, which provides the basis for the Pap smear test role within the cancer pathway, is soon muddied once we examine it within the messy reality of its cultural context. Attitudes and behaviours, viewed from the perspective of positivist science, can be precursors to the initiation and progression of cancer. However, this science itself can be read in a different way. Popular knowledge of medical topics is not only adapted from a cultural interpretation; information is produced by the culture in which it exists. Information is a direct result of the culture in which it exists. Popular knowledge is not the result of a slow leak down rusty, imperfect pipes from the rooftop to the gutters; popular knowledge plays an important part in defining the culture in which scientific knowledge is constructed. What questions are asked, which research is funded and what aspects of the findings are popularly published are all inextricably linked to the politics and economics at a given time, and constantly shift over time (Manderson, 1994).
The way that scientific literature has handled Pap smear test and cervical cancer over the past five decades provides a window into how science is embedded in cultural change. Pap smear testing for cervical cancer is an appropriate glass through which to view these changes because it epitomizes aspects of contemporary women’s health: the junction between sexuality and health risk; sexuality, medical examination and intervention; women’s struggle to regain control of their bodies in their relationships with the medical establishment; and perceptions of cancer and the medical preoccupation with cancer.
In this book, I intertwine passages of text exploring the historical medical literature on Pap smear screening for cervical cancer, with the experiences of a group of women. The sections taken from medical literature examine the way a certain portion of western culture – the medical institution – constructs meaning for and presents itself to others. This construction has direct bearing on how women perceive and experience the test.
Reaching groups of women currently not attending Pap smear tests requires a broader conceptual approach than has been previously attempted. Certainly, pragmatics act as barriers to some women accessing health care, transport, child care and the availability of services locally. Costs are also real concerns for many women. Yet, even if all these circumstances could be set right, there would remain a fundamental reluctance, on the part of many women, to attend Pap smear testing. This reluctance is related to their emotional discomfort.
Until the Pap smear test was developed, surgery was the only option prolonging life for women with cervical cancer. The test was first developed in the 1940s but was not widely available to women for some decades. In the 1960s, attention turned toward prevention and the Pap smear test was introduced on a mass scale. The possibility of mass screening led to an intense research interest in the natural history of the disease. Knowing whether certain lesions were likely to develop into cervical cancer became an essential question.
Another issue of major interest throughout the 1960’s and 1970’s was that of risk. Identifying women at greatest risk for the disease had a double benefit. Firstly, the costs of mass population screening might be reduced if women at greatest risk were targeted, and epidemiological information on risk might validate and substantiate biological investigation into the aetiology of the disease. The concentration on risk identified sexual activity as a major risk factor. In turn, the epidemiological literature categorized and stereotyped women assumed to carry out more or less than was considered normal sexual activity. Medical literature followed through with investigation of certain sexually transmitted diseases and their possible links to cervical cancer. Syphilis was an early contender as a precursor to cancer; in the 1980’s the focus shifted to the Human Papilloma Virus and AIDS. This focus, while justified biologically and epidemiologically, contributed to a sense of stigma surrounding cervical cancer and the identification of an abnormal Pap smear.
Sexual stigma surrounding the identification of an abnormal Pap smear is complicated by fear associated with cancer. Fear of either potential or real cancer hovers like a dark cloud over the abnormal Pap smear result.
Abundant literature is available on cancer from both a clinical perspective and the perspectives of cancer patients. Much science-based literature entrenches fear of cancer with the use of military-style metaphors and battles raged within uncontrolled bodies (Sontag, 1978). Images of their bodies, of sexuality and moral, acceptable behaviour versus what is not, of monstrous growth or putrid decay, all accompany women as they make their way through the maze of information and advice on Pap smear screening for cervical cancer. Little girls are taught to be ‘good girls’. Good girls do what is expected. In addition, much of the non-science based literature proposes the view that only the weak or those unable to control their cancerous bodies succumb to the disease. The strong-willed, positive thinkers survive.
I (part sample)
Cells multiply and divide, multiply and divide. Each cell contains all the genetic information of the entire organism. Some cells continue the process of replication into and throughout adult life, while other cells reach a specific point and growth ceases. Injury or hormonal stimulation may induce these cells to re-enter the growth cycle temporarily until the injured tissue is repaired or until the stimulus is removed. Growth inhibitors function within the organism to regulate this process and ensure that uncontrolled growth does not occur.
Genes act to promote growth and suppress growth. As long as the balance between growth promotion factors and tumour suppressor genes remains intact, the cell will replicate according to the needs of the organism. Damage to the gene can be caused by environmental, hormonal or viral agents. Damage to normal healthy cells can change the signals transmitted by cells. New signals become part of the cell’s message as it replicates itself. The signals are read as though they are normal characteristics of each new generation of cells. The new message may be a signal to inactivate growth inhibitor genes. Cells continue to multiply and divide. Multiply and divide. Carcinogenesis is uncontrolled growth.
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