Embodiment, Pain, and Circumcision in Somali-Canadian Women

EMBODIMENT, PAIN, AND CIRCUMCISION IN SOMALI-CANADIAN WOMEN

By Emily Glazer

A thesis submitted in conformity with the requirements for the degree of Master of Science, Graduate Department of the Institute of Medical Science

EMBODIMENT, PAIN, AND CIRCUMCISION IN SOMALI-CANADIAN WOMEN

ABSTRACT

Female genital cutting/circumcision/mutilation (FGC) is found predominantly in the Sahel, Northern Africa, removing parts/all of the clitoris, labia minora and majora in girls. Cutting the highly innervated external genitalia may change sensory processing leading to chronic pain. Fourteen Somali women in the Greater Toronto Area (21-46, Type III FGC) completed qualitative, quantitative and psychophysical methods to evaluate pain. Interviews analyzed by interpretive phenomenology form the core method, examining circumcision stories and present, embodied life. The second Short Form McGill Pain Questionnaire and quantitative sensory testing with a vulvalgesiometer form secondary components. Somali women with FGC have pain-filled stories about circumcision and daily life. Socio-cultural considerations are central for women to comprehend how their own bodies feel. SF-MPQ-2 indicates low intensity or no pain symptoms; however, many body regions were indicated. QST reveals low vulvar pressure-pain thresholds. Reports from three measures suggest that FGC may cause sensory changes including chronic pain.

ACKNOWLEDGEMENTS AND CONTRIBUTIONS

PRINCIPAL INVESTIGATOR AND GRADUATE SUPERVISOR Gillian Einstein, PhD Dalla Lana School of Public Health (DLSPH); Department of Psychology, University of Toronto

COMMUNITY ADVISORY BOARD Maryann Barre, MD Rexdale Community Health Centre Ms. Hawa Abdi Unison Health and Community Services Ms. Habiba Adnan Family Services Toronto

QUALITATIVE STUDY Janice Du Mont, EdD Women‘s College Research Institute (WCRI) Robin Mason, PhD WCRI Jan Angus, PhD Faculty of Nursing, University of Toronto Deanna Duplessis, MA DLSPH, University of Toronto

QUANTITATIVE STUDY Allan Gordon, MD Wasser Centre for Pain Management, Mt Sinai Hospital Sheila Dunn, MD Family Practice Health Centre, Women‘s College Hospital Sarah Romans, MD Department of Psychiatry, University of Toronto Caroline Pukall, PhD Department of Psychology, Queen‘s University Hawa Farah, MD

GENERAL Shelley Wall, PhD Biomedical Communications, University of Toronto Ms. Kowser Omer-Hashi WCRI

RESEARCH ASSISTANCE AND CRITICAL FEEDBACK Abi Muere, Kimberly Blom, Adnan Javed, Justina Jueun Lee, Mekong Huang, Peter Bevan

PROGRAM ADVISORY COMMITTEE Ze’ev Seltzer, DMD Faculties of Dentistry and Medicine, University of Toronto; University of Toronto Centre for the Study of Pain; Centre for International Health (DLSPH); University Health Network Joel Katz, PhD Department of Psychology, York University; Department of Anesthesia, Faculty of Medicine, University of Toronto; University Health Network Brenda Toner, PhD Department of Psychiatry, Faculty of Medicine, University of Toronto; Centre for Addiction and Mental Health

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TABLES OF CONTENT

Abstract ii Acknowledgements and Contributions iii List of Abbreviations v List of Figures and Tables vi Preamble 1

I. BACKGROUND 7 Female Genital Cutting/Circumcision/Mutilation 8 Theoretical Orientation 12 Embodiment 13 Biocultural Model of Illness 17 Literature Review of FGC and Health Complications 20 Recent systematic reviews 21 Research focuses and findings: Sexual and Reproductive Health 22 Evidence for a neurobiological perspective 22 Innervation of the Perineal Region and External Genitalia in Women 25 Pain: A multidimensional phenomenon 27 Mixed-Methods 30 Overview of the Field of Mixed-Methods 31

II. OUR STUDY 35 Research Aims 35 Establishment of the Community Advisory Group 36 Inclusion/Exclusion criteria 36 Recruitment 36 Qualitative Study 37 Interviews and Narratives 37 Selecting phenomenology: Philosophy made method 38 Quality criteria 40 Summary of methodology: Studying the neurobiology of FGC with phenomenological questions 42 Methods 42 Data collection 43 Data Analysis 44 Findings 50 Qualitative themes 53 Discussion 79 Quantitative Study 91 Methods 91 Results 95 Discussion 104 Integrating Findings from all Methods 116 Limitations of the Study 123 Conclusions 125 Future Directions 127 Bibliography 130 Appendices 144 I. Phenomenological bracketing 144 II. CASP tool 146 III. SF-MPQ-2 150

LIST OF ABBREVIATIONS

CAG Community advisory group CHC Community health centre CR Critical realism CNS Central nervous system FGC Female genital cutting/circumcision/mutilation GCT Gate Control Theory of pain GHQ-12 General Health Questionnaire, twelve item version GTA Greater Toronto Area MPQ McGill Pain Questionnaire NKCHS Norwegian Knowledge Center for the Health Services NRS Numerical rating scale PPT Pressure-pain threshold QST Quantitative sensory testing SF-MPQ-2 Short Form McGill Pain Questionnaire, second version WHIWH-CHC Women‘s Health in Women‘s Hands Community Health Centre WHO World Health Organization WCRI Women‘s College Research Institute

LIST OF FIGURES AND TABLES

Figure 1: Prevalence of FGC in the Sahel region of Africa Figure 2: The World Health Organization (2008) modified and previous classification of FGC Figure 3: Biocultural Model of Pain (Bates, 1987) Figure 4: Innervation of the female perineum Figure 5: Mixed-methods research designs (Creswell, 2009) Figure 6: Process of Data Collection Figure 7: Units of meaning from participants interviews converging and forming themes Figure 8: Body regions discussed by participants in the interviews Figure 9: Four vulvar sites tested with QST Figure 10: Qualitative and quantitative responses from five participants

Table 1: Socio-demographic profiles of participants Table 2: Participant medical histories and GHQ-12 scores Table 3: Participant‘s responses to questions about sexuality on the medical history Table 4: SF-MPQ-2 results and participants‘ medical histories Table 5: SF-MPQ-2 subscale means and ranges Table 6: QST (vulvalgesiometer) results Table 7: Comparing the findings of the current study with previous studies Table 8: Quantitative and qualitative methods elicit novel findings

PREAMBLE

My research interests and involvement in the FGC study

The project described here is a mixed-methods study looking at the long-term neurobiological consequences of female genital cutting/circumcision/mutilation (FGC). The impetus for participating in the research, initiated by my supervisor Dr. Gillian Einstein (GE), stemmed from my broader interests in chronic pain as a biocultural phenomenon – that is, a phenomenon whose development, maintenance and experience refract through a joint biological and cultural prism. Pain is an exemplary instance of the body being realized out of the constant exchange and collaboration of biological, social, psychological, cultural, environmental (and other) elements. With pain that is chronic, the intrigue of the puzzle is amplified.

A node within viewing pain as a biocultural phenomenon is the examination of gender and chronic pain, an intersection I felt was sorely needed and underexplored. Gender here is understood as socially constructed roles and behaviours, categories of masculine and feminine, rather than biological sex. However, my interest in how social constructs like gender are material to physical bodies renders the distinction blurry. Other writers share the suspicion of dividing sex from gender so resolutely. 1

In querying gender and chronic pain, some of my motivating questions included: Why do women suffer from more chronic pain conditions? Why do ―medically unexplained‖ conditions abound among these? How does this relate to depression and anxiety, two bitter and close companions of chronic pain also disproportionately found in women? How are these outcomes related to women‘s (still) lesser social status? What is the relationship between mind-body separatism that dominated pain science and the Cartesian cousin view of seeing woman as more bodily, less reasoned? Given the convergence of complex (biocultural) influences that feed into pain becoming chronic, what kind of neuroscience could explore and consider complexity that is not only physiological but also sociological? Such a neuroscience would certainly have to be feminist – attuned to socio-cultural context and situation, power and identity, and concerned with

1 That said, speaking separately of gender or sex still remains useful for descriptive and heuristic purposes.

2 equality and the health of all bodies. Such a neuroscience would force the social and basic sciences of pain to converse (cross-talk!) in order to contemplate the materiality of social constructions – such as how sexism does violence and materially impacts women‘s bodies both directly and diffusely – and the corporeality of social subjects. A further conversation seems merited between psychological and sociological foci on pain in order to bridge what happens in individual psyches with wider immersion in a social and cultural world.

I was aware that a research program concerning biological sex and pain was underway – a very positive development particularly considering the historical dearth of female animal subjects in pain research (and other biomedical research), which is a grave juxtaposition to the most common clinical problem: a woman in pain. Important studies have looked at topics such as pain threshold and tolerance, and nociceptive and analgesic responses in male and female human and nonhuman animals. The International Association for the Study of Pain (IASP) declared 2007-2008 the ―Global Year against Pain in Women‖, citing ―Pain conditions affecting women have a significant global impact. Yet, there is still a lack of awareness/recognition of pain issues affecting women‖ (IASP, 2007). IASP‘s fact sheets expressed interest in both biological and socio-cultural nuances in pain. Yet the latter are underexplored; alongside research on biological sex needs to be a stronger awareness that sexed bodies are also social bodies, with (multiple) identities, positions within power, and communal embeddedness, which all change across time, space and place. All actors are situated in socio-cultural schemas: Patients, researchers, scientists, clinicians, institutions, friends and supports.

Beginning my Master‘s degree, the time seemed ripe for gender and chronic pain to meet. A fruitful space for examining socio-cultural influences and their materiality has been creaking open, simultaneously inviting feminist thinkers in health – many of whom have long been interested in constructivism and the body – to engage with new ideas of body malleability. Complex biopsychosocial models of what influences pain were being espoused, of which Melzack‘s neuromatrix was an example. Surveying the zeitgeist, some other notable developments – signs of the door to the malleable body creaking open with room reserved for a gender lens – included growth in the following areas:

 Knowledge about neuropathic pain, and recognizing pain as a disease in its own right

 General, widespread interest in neuroplasticity2 o ...and the rise of cognitive behavioural approaches to pain management as well as recognizing the brain-rewiring effects of meditation, in which I have participated.  Increasing ability to image and visualize pain once described only from the first-person (whereas women have often been doubted and told their pain is ―all in the head‖)  Feminist engagement in neuroscience, science studies, and deconstruction of neurosexism3  Growth of the field of narrative medicine and attention to clinical listening, narrating practices, and the human face of disease  The pressing need to hear first-hand voices and interpretation of pain and to grasp its relationship with third-hand measures of pain and disease  A plethora of narratives on chronic pain by women in writing (Marni Jackson, Susan Greenhalgh, Melanie Thernstrom, Lous Heshusius) or performance (Julie Devaney) have emerged to challenge the medical gaze that treats the body like a machine, eschews personal experience, subtracts serious medical attention as a cost of womanhood, and finally to challenge the hegemony of neurophysiological voices in pain science4  The growth of embodiment as a paradigm

All of these developments have shaped my interest in biocultural research on pain (particularly focused on gender and chronic pain), my involvement in the present study, and my undertaking of a Master of Science with the Institute of Medical Science along with the Collaborative Program in Women‘s Health.

Some of the queries and developments described above point to different research sites to examine gender and pain: the gendered nature of the clinical encounter including bias, gendered expectations of pain throughout life, the gendered nature of stress, how psychosocial factors are

2Even in popular non-fiction i.e. ―The Brain that Changes Itself‖ by Dr. Norm Doidge. As a caveat, the flip-side or a warring camp to neuroplasticity is the paradigm of hardwiring of neural pathways. Accordingly, in popular non-fiction there has been an interest in inherent male and female brains i.e. the underevidenced and stereotype-affirming series by Dr. Louann Brizendine, but also more critical accounts like ―Dellusions of Gender: How Our Minds, Society, and Neurosexism Create Difference‖ by Cordelia Fine and ―Brain Storm: The Flaws in the Science of Sex Differences‖ by Rebecca M. Jordan-Young. 3 Such as scholars Deboleena Roy, Elizabeth Wilson, Cordelia Fine, and an upcoming volume edited by Robyn Bluhm, Anne Jaap Jacobson and Heidi Lene Maibom titled ―Neurofeminism: Issues at the Intersection of Feminist Theory and Cognitive Science‖, and conferences like ―Neurogenderings: Critical studies of the sexed brain‖ (Uppsala, March 25-27th, 2010) 4 I read all these texts during my graduate training with IMS and saw Julie Devaney perform ―My Leaky Body‖

4 generative of chronicity/how they affect body and brain, and of course the epistemological perspective: how knowledge about pain is created altogether. A gender and pain perspective – perhaps a feminist neuroscientific perspective – would not leave concepts like ―stress‖ unexamined or untheorized, or leave alone cognitions as individualized, asocial phenomena inside a single head. Rather, context around individual biologies would be considered, and thought patterns would also be seen as socio-culturally rooted. This requires attention to interpretation and meaning-making activities.

To gather together and elaborate on the threads of feminism weaving through my words and work, I would like to say that my approach to this project is feminist because I am interested in the improving and empowering the lives of women, influencing social change and recognizing the situated nature of knowledge (a lá Donna Haraway) and the power embedded in social relationships, including between researcher and research participants. To borrow from Obioma Nnaemeka – whose writings on transnational feminism resound here – this project involves strategic alliances between differentially-situated actors based on mutual respect and recognition of agency, sensitivity to context and complexity, and encouragement of cultural understandings.

Finally, gender is just one swath across societies. Gendered identities also mingle with race, sexuality, class, clan, and so on. Similarly, an exploration of gender and pain and the biocultural nature of bodies/pain/bodies in pain produces lessons pertinent to every-body.

Coming from these overall interests, I was excited to participate in research surrounding the neurobiological effects of a cultural practice of cutting the body, where the intersection of biology and social interpretation were implicated in the inquiry: What lasting neural changes ensue (including potentially chronic pain), and how are the outcomes in adulthood co-determined by biological, psychological, and socio-cultural factors? After all, the practice has context, meaning, and history, even as these change. This project is an instance of considering the socio- cultural and biological together. I have chosen an embodiment approach – loosely characterized above but elaborated upon later – and there are other approaches. The goals expressed here are ambitious, and this is just one modest foray.

I am indebted to the scholarship of many people including: Elizabeth Wilson, Elizabeth Grosz, Debolena Roy, Victoria Grace, Karen Berkley, Cordelia Fine, Iris Marion Young, Gillian

Bendelow, John Encandela, Judith Butler, Thomas Csordas, Gail Weiss, Arthur Kleinman, Maryann Bates, Margaret Locke, Maurice Merleau-Ponty, Margaret Shildrick, Anne Fausto- Sterling, and Davis Morris.

A note on terminology

The ritual cutting of women‘s or girls‘ genitals has been variously referred to as female genital circumcision, cutting, mutilation (FGC/M) or something else. All the terms used have pitfalls. In this thesis I will utilize the term FGC as short-hand because I believe it addresses the most concerns around terminology. My reasoning is as follows:

In African languages where the practice is done, other terms are used such as purification or circumcision, while African men and women have espoused each of circumcision, cutting and mutilation in English and in Diaspora. I am ultimately interested in supporting both the health and agency of girls and women from FGC-practicing societies, and this interest will perfuse the thesis to the best of my abilities. For some people ―mutilation‖ serves this purpose because it can be deployed in order to aggressively combat the practice. Yet the term also erases the context and history surrounding FGC – which I feel are necessary tools for both respect and for behaviour change – and its use has occurred alongside a showcase of the most extreme health consequences and stories surrounding FGC experience; therefore, ―mutilation‖ has the unintended bi-product of encouraging disgust and judgment without understanding towards the societies where it is practiced. This has the potential to exacerbate discrimination already faced by communities coming from FGC-practicing societies to Canada or elsewhere, and bears imperialist tones of constructing non-Western societies as Other.

While an ―ends justifies the means‖ argument can reasonably claim that all alarms – even when exaggerated or when featuring important omissions – should be sounded in the name of protecting girls‘ and women‘s health, I believe that often the unintended consequences described above have the opposite effect. It could also be argued that ―circumcision‖ or ―cutting‖ is not strong enough to mobilize efforts, when necessary, toward improving women‘s health, producing the intended consequences of allowing health violations to continue. However, I believe FGC is adequate for those purposes.

Out of further concerns for imperialist discourse and respect for difference, I do not want to speak from a North American, academic position as if we are not violent towards women‘s bodies, as if we are sufficiently and impartially knowledgeable about women‘s genitals, sexuality and associated health issues. Rather, we are also unaware, anxious, violent, and insufficient. I am aware of how anxieties get projected onto others and frame how they are perceived. I am also aware of the history of clitoridectomy in the United States and Britain as treatment for women‘s sexual ―deviance‖, and the present reality of griping over narrow vaginas during episiotomies and women electing to undergo labioplasty or vaginoplasty. Unfortunately, all societies perform violence to women‘s bodies, whether slowly over time and/or in discrete moments, and also support medically-unnecessary cutting (tattoos, plastic or cosmetic surgery, possibly male circumcision, etc).

Finally, as a matter of language and women‘s agency, the word ―mutilation‖ is a problem. In the mutilation discourse, women have to ―be mutilated‖, and their mothers and relatives are both ―mutilated‖ and ―mutilators.‖ While FGC may constitute violence and even passivity, relatives are most often attempting to offer their daughters the best opportunities within the particular context, economy or ecosystem. In that sense, it may be differentiated from abuse when abuse is understood as conscious intent to harm. In contrast, the terms ―cutting‖ and ―circumcision‖ offer both verbs and nouns for women to actively possess, having a ―cut‖ or ―circumcision‖ if they chose, rather than their bodies being passively constructed as marked.5

5 The reflections in the Preamble and Note on Terminology provide substantial fodder for the requirement in phenomenological research of ―bracketing.‖ However, further bracketing is available in Appendix I where I consider my position as researcher on a more personal level.

BACKGROUND

We established a community-based, exploratory study of chronic pain as a long-term, neurobiological consequence of female genital cutting/circumcision/mutilation (FGC) with adult women in the Greater Toronto Area (GTA) who underwent FGC in Somalia before moving to Canada. The project initially began with quantitative methodology in mind but the demands of the research question – recognizing women‘s rich stories and experiences and the subjective, biocultural nature of pain – necessitated that qualitative methods be included. Thus, mixed- methods were deployed. The qualitative data are relevant neurobiologically, both to physical pain and to quantitative tools seeking to capture or measure pain: The participants‘ narratives – including reflection on the setting and history of personal FGC experiences and on their bodies in everyday adult life – are insights in the cognitive, emotional, and sensory channels that converge and co-constitute pain (Bates, 1987). Thus, mixed-methods were used to understand neural changes and changes in somatosensation, combining biomedical measures of sensation and personal narratives.

We used critical realism as a perspective on mixing methods, and phenomenology as an analytical tool for the qualitative data. We used interviews and narratives to understand the meaning of FGC to the participants, and how their bodies feel throughout daily activity—the meanings and context in which our participants might experience pain. It is the qualitative study that comprises the core of the project. Next, we used standard pain instruments, medical histories, and quantitative sensory testing with part of the sample group to understand the physiological parameters of that pain. A descriptive and qualitative approach was applied to the quantitative data to look for trends, enabling our findings to be a pilot for a fuller quantitative study. Finally, we considered what all obtained findings signify together or in relation.

This report is structured so as to present critical background information for understanding the project overall first, followed by the qualitative and then quantitative components of the study separately with more detailed background information on respective approaches and instruments. Lastly, a consideration of components together is presented along with overall conclusions.

FEMALE GENITAL CUTTING/CIRCUMCISION/MUTILATION

Female genital cutting/circumcision/mutilation (FGC) is practiced predominantly in Northern Africa – within approximately 29 African countries, shown in Figure 1 – and has increasingly become a part of western consciousness as women with FGC have immigrated to Europe, Australia, and North America (Johnson, 2009; Momoh, 2005; Toubia 1994). As illustrated in Figure 2, The World Health Organization (WHO) (2008) classifies four types of genital cutting to describe the variation in parts of the vulvar region – including the clitoris, labia minora and labia majora – that are partially or completely excised or nicked for non-medical reasons. Fifteen percent of women with FGC have Type III, the most extensive form, which involves suturing together of the labia majora (infibulation), leaving a small opening for drainage of urine and blood, following in most cases the partial or complete removal of the clitoris and labia minora (WHO, 2008). Approximately 95% of Somali, Sudanese, and Ethiopian women who have FGC have infibulation.

Figure 1: Prevalence of FGC in the Sahel region of Africa. In Somalia, which is located in the eastern Horn of Africa region, the prevalence of FGC is over eighty percent of females according to this map, but more specifically as high as 97.9 percent at last WHO assessment (WHO, 2008).

Reasons for this long-standing practice vary by cultural context and include psychosexual, sociologic, and hygienic or health-related rationales (Gibeau, 1998). Gruenbaum (2005) notes that several studies have found genital cutting to be a marker of gender identity among a range of different FGC-practicing societies, where cutting removes ‗male‘ parts. In Somalia, it is often referred to as xalaalays or gudniin (purification), denoting the removal of the tissues, while the aspect of infibulation is referred to as qodob from ―to sew up‖ (Abdalla, 2006). Tradition and social pressure to conform can be strong motivators to circumcise one‘s daughter, especially given the deep-roots of the practice. While extreme acute pain and other complications have been documented (see literature review), at the same time, most parents or relatives seek to provide positive life opportunities for their daughters within the particular social economy of the local context.

Figure 2: The World Health Organization (2008) current and previous classification of FGC.

Health complications, research complications: Obstacles to studying FGC and women’s health

There is an enormous amount of literature about the practice of FGC; it encompasses the socio-cultural circumstances, histories, meaning, advocacy and pleas for its eradication, and medical complications, with overlaps of these perspectives depending on the writer(s) and their purpose(s). Health complications frequently cited by publications of different purposes are noted

11 in this section along with difficulties in FGC research; a literature review confined to biomedical and health-oriented research is presented later.

FGC is an emotional and controversial topic, and for that reason alone it is difficult to study. The topic is coloured with strong moral, ideological and cultural anxieties, which necessarily inform research foci. Hence Johansen (2007) calls the biomedical and health-focused literature the ―mutilation approach‖, meaning literature which is often also advocacy work aimed at eradication or behaviour change. Elsewhere, Leonard (2000) states that FGC research is at an impasse, where absolutists call for research in order to stop the procedure, and relativists resent outsiders imposing change. In summary, the topic is charged and so too is the research.

There are notable consequences for women‘s health as a result of FGC but attention also has to be paid to how they are presented. In the literature sequelae are often presented in lists (―laundry list(s)‖ of complications according to Shell-Duncan and Herlund, 2000) which, in bundling possible outcomes together, present an extreme portrait of the medical risks and complications of FGC in a manner void of socio-cultural context. These lists should be viewed as possibilities not inevitabilities, at the same time as the total health of women‘s bodies in context – including both threats to and enablers of it – should be taken seriously.

Listed health complications are frequently classified according to immediate and delayed complications (Johnson, 2009; Arbesman, Kahlar & Buck, 1993; Dirie & Lindmark, 1992). On other occasions, sequelae are divided according to sociological, psychological and sexual consequences (Berg, Denison & Fretheim, 2010; Vloeberghs et al., 2011). Minding considerations of how findings are presented, short-term complications may include shock, haemorrhaging, infection, swelling, tetanus, urinary retention or oliguria, injury to adjacent structures, sepsis, or death. Long-term complications may include epidermal inclusion cysts, keloid scarring, dysmenorrhea, dyspareunia, hematometra, hematocolpos, chronic vaginal and urinary tract infections, urinary retention, voiding difficulty, urinary calculi, incontinence, neuromas, or infertility (Arbesman, Kahler, & Buck, 1993; Ford, 2000; Johnson, 2009).

Many sequelae are disputed and others are hard to trace definitively back to circumcision absent other confounders. For example, if more women with FGC experience more emergency

Caesarean sections (C-section), what percentage would be due to hospital practice, or to inelasticity of scar tissue? It has been noted that obstetrical complications can ensue from FGC (Almroth et al., 2005), usually among infibulated women not deinfibulated before delivery, including obstructed labour, prolonged pressure of the head on the vagina, haemorrhaging after delivery, and rectovaginal or vesicovaginal fistulae (Arbesman, Kahler & Buck, 1993; WHO, 1998). Essen et al. (2005), however, found that in affluent societies with high quality obstetric care, FGC is not associated with prolonged labour.

Finally, numerous obstacles plague proper study design to establish evidence of health effects, elaborated well in Obermeyer (2005). One cannot conduct a randomized, controlled trial design, nor a cohort study with exposed and unexposed subjects. Studies often use respondents from health facilities but they may not be representative of a general population of circumcised women. Data collection can be very difficult. The concepts used in self-reports are not standardized. Other problems include specifying which type of operation participants underwent, and even then, the non-uniformity of tissue removal within each type. Of the 35 studies included in Obermeyer‘s (2005) review and stratified by quality, only eighteen included a control group, statistical significances and odds ratios to estimate increased risk for complications due to FGC (see literature review). Below, the theoretical orientation guiding the current research is introduced, followed by the focused literature review and presentation of the current study.

THEORETICAL ORIENTATION

A theoretical orientation in research can be described as the worldview, paradigm or philosophical framework, through which different methodologies are chosen and deployed (qualitative or quantitative) by using different methods, techniques or procedures (interviewing, focus groups, quantitative survey) (Sandelowski, 2002). My theoretical approach to the study consisted of two closely related concepts: Embodiment, and bioculturals model of illness. These concepts are theoretical understandings of how bodies are simultaneously biological and cultural; while they bear relevance to many issues of health and illness, in the current study these concepts have particular importance to pain, describing how the development and experience of pain depend on both biological and cultural factors. Phenomenology, introduced with embodiment, is an analytical approach consistent with this theoretical understanding and which allows FGC to

13 be regarded its lived, embodied, context-specific manifestations, as a phenomenon with meaning(s) for those experiencing it.

EMBODIMENT

There is variation in the meanings associated with the term ―embodiment‖ but at least three complimentary ideas are contained (Csordas, 1994):

1) A non-dualistic (integrative) view of the nature (ontology) of mind-body 2) The body is not a mechanical object; as a subject-object (never fully either), the body in- corpo-rates meaning (Johansen, 2002). Embodiment describes the process of taking meaning into the body 3) The body is the existential ground of selfhood, culture, and being-in-the-world (Merleau- Ponty, 1962; Csordas, 2002)6

A traditional neglect of the body by Western philosophy – either relegating it to an animal nature apart from the Self, offering little intelligence, or viewing it as a depersonalized, mechanical physical entity – has lead many interdisciplinary scholars writing on the body to replace ―body‖ with ―embodiment‖ (Weiss & Haber, 1999). This traditional neglect is often attributed to René Descartes who sought to free science (and medical science) from religious and spiritual animism, and in doing so engraved a lasting mind/body dualism on Western thought. Dualisms guide thought with an ―either/or‖, ―A/Not A‖ construction that usually values one side over the other and conceals interchange and overlap. Mind/body dualism also begat a series of interrelated dualisms such as culture/biology, nurture/nature, mental/material, and culture/practical reason (Csordas, 1994). This intellectual scaffolding has also had gendered (and racial, among other) implications when binary constructs align with other binaries, since one side is always favored. So for example, another dualism male/female ensures that ―male‖ aligns with mind, culture, reason, and female with body, nature, emotion. A hierarchy is implied and as a result, dichotomous thinking has contributed to degrading of women and the feminine along with the body at the moment mind/reason is touted (Bordo, 1995; Grace, 2000; Grosz, 1994; Shildrick, 1997).

6 Csordas‘ essay ―Embodiment as a paradigm for anthropology‖ originally appeared in the journal Ethos in 1990 (Vol.18, No.1) but the version I consulted is published in his 2002 book Body/Meaning/Healing, chapter 2.

Embodiment, however, cannot be understood within a dualist framework (Grace, 2003). Embodiment proposes that mind is embodied and that the body is mindful. The physicality of the body is immersed in socio-cultural and psycho-emotional worlds. Furthermore, the body is imbued with a sense of intentionality (Merleau -Ponty, 1962): People are not passive in the face of stimuli but rather are engaged; attention is always directed toward something in the world. The body is embedded in a world in which it proceeds with purpose and with which it exchanges, a world which provides a particular context. All experience takes place with relation to something other than itself (Thomas, 2005). Against viewing the body as a machine like other objects, embodiment is a holistic notion about the malleable and fluid nature of the body and self. As Merleau-Ponty (1962) wrote, we are bodies, not (just) possessors of bodies; human subjects are bodies with their attendant fleshiness, processes of illness and healing. The ―essential characteristic of embodiment‖, therefore, is ―indeterminacy‖ (Csordas,1994; Merleau- Ponty 1962). Many writers have spent time generating alternative terminology to describe the whole entity of mind and body; for Merleau-Ponty the operative action between them was an ―intertwining‖ (1962). Johansen (2002) writes of ―in-corpo-ration‖, Irigaray (1977) of ―morphology.‖ Although he seldom used the term, Merleau-Ponty‘s work has been credited with the concept of the ―lived body‖ (Leder, 1991; Goldenberg, 2008).

The phenomenologist Maurice Merleau-Ponty established a foundation for embodiment, while phenomenology is seen as a primary approach for addressing the simultaneous physical, existential, emotional and biological nature of lived experience, particularly illness. Building on Merleau-Ponty, Csordas (2002) conceived of embodiment as the ―existential ground of culture and self‖ and later noted that most authors regard embodiment as an existential condition (1994). Moving between the body as a biological, material entity and embodiment as a broader concept of a body-self in a lifeworld constitutes an ―indeterminate methodological field‖ belonging to phenomenology and ―defined by perceptual experience and mode of presence and engagement in the world‖ (Csordas, 1994).

Phenomenology as an analytical approach to embodiment

Phenomenology developed as an enquiry interested in how phenomena appear to consciousness, and in direct experience before it is reflected upon. It evolved throughout the 20th

15 century – making it more of a philosophical movement – and has been given application in health research interested in subjective bodily experience, and experience as it is lived. As a philosophy it was largely founded by Edmund Husserl (1859-1938), with debt owed to his teacher Franz Brentano (1838-1917). Husserl felt that experience, human consciousness, and the lifeworld (lebenswelt) were valuable objects of study, and wanted to study them with empirical methods. Husserl believed the essences or structures of experience could be determined by utilizing certain practices such as bracketing prior assumptions and expectations (epoché) and phenomenological reduction to pare down experience to its invariant components. Therefore, in seeking to exit one‘s prior assumptions and baggage, his phenomenology is considered transcendental. Husserl‘s ideas were a departure from the mechanistic paradigms of his time (and indeed phenomenology came about in dispute of them) but still fell within the positivist tradition, seeing pure consciousness as knowable objectively, with essences of experience being objective themselves.

Husserl‘s student, Martin Heidegger (1990-1976) built on Husserl‘s work but insisted that interpretation is involved in direct experience because people are always situated in the world. As such, he disputed Husserl‘s claim of objectivity. Experience comes about through being-in-the-world (dasein) and we must clarify the conditions in which understanding and consciousness (of experience) takes place. An individual participates in cultural, social, historical contexts of the world. To be human is to already be-in-the-world, and the acts of interpretation and understanding are handed down through language and culture forming each individual‘s ―background‖ (Munhall, 2007). Heidegger called this the ―thrownness‖ of people in the world, finding themselves already in a world of understandings they are disposed to inherit. Such an outlook fits between a deterministic and an entirely agentic/willful view of the person. People are endowed with situated, personal knowledge. A hermeneutic circle is posited to describe how pre- understanding (inherited, given) and understanding (distilled from experience) interact. Heidegger‘s philosophy resulted in interpretive or hermeneutic phenomenology, and gives much greater attention and value to life context.7 After Heidegger, Merleau-Ponty elaborated a form of phenomenology that acknowledged the embodied nature of subjects situated in the world, and it is his ideas that are most relevant to the current study.

7 Today, using the term ―interpretive phenomenology‖ is more common than Heideggerian hermeneutic phenomenology (Brykczynski & Benner, chapter 7, 2009)

Merleau-Ponty’s Phenomenology “Numerous authors arguing for the role of culture in pain emphasize that pain is perception, that perception is embodied, that embodiment is historically, socially and culturally situated; and indeed pain is perceived by a conscious being.”

“Maurice Merleau-Ponty’s [work titled] Phenomenology of Perception...provides an important theoretical reference point for research addressing questions of the soma and the psyche, experience, language, subjectivity, in non-dualist terms. He embraces the concept of embodiment in his exploration of the phenomenology of perception.”

(Grace, 2003, pp. 48, 52)

Merleau-Ponty (1908-1961) owes much to both Husserl and Heidegger; like Heidegger he also contributed to development of interpretive phenomenology (Brykczynski and Benner, 2009). Like Husserl, Merleau-Ponty sought a return to the things themselves, promoting the investigation of pre-reflective, direct, lived experience, which is the precursor of any scientific knowledge. However, Merleau-Ponty gave importance to the body, noting that human experience and being-in-the-world – the objects of phenomenological study – start from an embodied location and embodied interaction. The body is the centre from which all experience and consciousness emanates and originates. What grounds consciousness, giving it access to the experiential horizon, is perception, which is bodily.

Merleau-Ponty addressed perception in his most famous work Phenomenology of Perception. Although pre-objective – prior to being processed with and made an object of thought, analysis, or theorizing – perceptual processes are conditioned by cultural formations. Pre-objective experience is not pre-cultural, rather there exists a ―cultural formation of pre- objective experience‖ (Csordas, 1994, p.19). Merleau-Ponty‘s work on perception is a gateway to understanding even perception (and pain as perception) as socio-culturally molded. Merleau- Ponty was opposed to the positivist scientific view that sees people as static beings composed of autonomous parts and which explains facts based on causality (Sadala & Adorno, 2002). Even sensory perception is not mechanical, rather occurs through meanings and recognizes a set of meanings. Perception is intrinsically a meaning-giving act (Grace, 2003, p.52, building on Merleau-Ponty, 1962), and the perceptual orientation of the lived body is inscribed with culture and meaning. In the tradition of Merleau-Ponty, Grace (2003) quotes Levin and Solomin (1990) writing that ―the diseases afflicting us, as well as the body‘s processes of healing, are sensitive to

17 the effects of proprioceptively experienced meaning‖ (p.533, p. 58-59 in Grace 2003). By elaborating a lived body, Merleau-Ponty has contributed substantially to the concept of embodiment, which necessitates a focus on meaning in perception and experience.

BIOCULTURAL MODELS OF ILLNESS

The integrative perspective offered by embodiment and approached using phenomenology is rearticulated in a model that views the biological and cultural as co-productive in illness/wellness (Bendelow, 2000; Grace 2000, 2003, 2007; Grace & Macbride-Stewart, 2007; Morris, 1991, 1998). Leder (1990) writes:

The body is at once a biological organism, a ground of personal identity, and a social construct. Disruption and healing take place at all these levels, transmitted from one to another by intricate chiasms of exchange (p.99).

It can be argued that this is particularly important in the study of pain, where pain can linger beyond tissue damage, takes on an existential weight in individual and societal terms, impacts the concept of self (Chapman 1990), is subject to cognitions (thoughts, beliefs, expectations), and invokes fragile intersubjective relations because it cannot necessarily be seen.

In theory, an integrative model emphasizing multidisciplinarity has been active in biomedical research and clinical practice since the biopsychosocial model was proposed (Engel, 1977) and, for pain in particular, since the Gate Control Theory [GCT] (Melzack & Wall, 1965) and the consideration of sensory-discriminatory, affective-motivational, and cognitive-evaluative dimensions of pain (Melzack & Casey, 1968). A call to be ―more accommodating of the social, psychological and cultural facets of pain‖ lead to the development of biopsychosocial models of pain (Grace, 2003, p. 43). Grace (2000) has pointed out that the model is still additive, viewing influential components as interactive but still very separate. Furthermore, physical findings are sought first and if found, the ―bio‖ component is seen to be free of the ―psychosocial‖ components. Conversely, if physical findings are not identified, a psychogenic origin is attributed, implying mental illness or imagination. A truly biopsychosocial perspective faces the challenge of how to view components as equally important and interactive without being too independent so as to be optional. Rather, there is no physical sensation that is grasped without a

18 sense of meaning and context, no meaningful events that are not experienced by an embodied individual.

Part of the difficulty, according to Grace, is that current views of pain have no way to incorporate the subjective and meaningful – how do meaning-imbued events become biochemical processes? How biopsychosocial factors engender chronicity, affect body/brain (Chapman, Nakamura, & Flores, 1999)? Grace (2003) writes that ―we need a methodological framework that encompasses psycho-socio-cultural contributors to perceptual processes of pain. Theories of embodiment and questions of ‗meaning‘ provide important directions‖ (p.47). A focus on embodiment leads to a simultaneous focus the role of meanings in perception and experience. The biopsychosocial model still eschews subjectivity in pain, devoid as it is of considering language, meanings, and symbolic social content (Grace, 2003). These concepts are developed in relation: ―individual subjectivity is never entirely unique and singular, as individuals only exist within the intersubjective, meaning-laden framework of specific cultural mileux, which shape individual perceptual processes, and thus play a role in pain‖ (Grace, 2003). The experience of the physicality of pain is tied to ―perceptual processes involved in establishing the relational constructs of the self and (in the) world‖ (Chapman, 1990 in Grace, 2003, p.45).

A promising model is offered by anthropologist Bates (1987), illustrated in Figure 3, whose ―biocultural model of pain‖ builds on the core explanatory architecture of GCT. Bates begins to address the problem of leaving cognitions somehow self-explanatory and untheorized: What nature of thoughts and belief modulate or facilitate pain and why? The origins or contexts for such cognitions cannot be left supposed either: What contributes to cultivation of thought patterns and meaning-making? The biocultural model makes space for this thinking by proposing ―an integrated theoretical model – one that conceptualizes the interaction of physiological, psychological and sociocultural influences on human pain perception‖ (Bates, 1987, p.47). It illustrates the ―influence of the sociocultural structuring of cognition on physiological mechanisms of pain perception‖ and thus situates individual psyches in the social milieu they inhabit (Bates, 1987; p.47).

Figure 3: Biocultural Model of Pain (Bates, 1987). Processes of social learning and comparison shape cognitive and emotional factors (memory, attitudes towards pain) in pain perception.

Similarly, Morris (1998) suggests a consolidation of valuable biomedical knowledge about the human nervous system in pain into a more comprehensive biocultural model consisting of four claims: 1) Pain is more than a medical issue and more than a matter of nerves and neurotransmitters 2) Pain has historical, psychological, and cultural dimensions. 3) Meaning is often fundamental to the experience of pain. 4) Minds and cultures (as makers of meaning) have a powerful influence on the experience of pain, for better or worse (p. 118).

Summary of theoretical orientation

Embodiment and biocultural models provide good vantage points from which to understand how pain is variably developed, maintained, and experienced. FGC, the embodied human experience, is seen in its lived, context-specific manifestations, as a phenomenon with meaning(s) for those experiencing it. In considering the lived pain of adult life for women with FGC in Norway, Johansen (2002) wonders whether there is a difference between meaningful and accidental pain, in other words, whether there is a difference between pain belonging to a symbolic, culturally meaningful register as opposed to random pain with no referents, caused by external forces (p.313). It is possible that culturally-validated pains have their own nature, experience and life course. Similarly in this study, the potential development of chronic and/or neuropathic pain is regarded as dependent on physiological and socio-cultural factors, with a consideration of pain and meaning, which has been called a ―neglected intersection‖ (Oakley, in Bendelow, 2000). Indeed, a more constructivist approach may be necessary when studying health effects such as pleasure and pain (see Obermeyer, 2005 p.456).

LITERATURE REVIEW OF FGC AND HEALTH COMPLICATIONS

To achieve a deeper understanding of the consequences of FGC beyond commonly listed sequelae, a wide range of literature was consulted for this study.8 In a review of the literature below, focal subject areas are noted from the (1) biomedically and health-oriented research and from (2) qualitative research. Obermeyer‘s systematic review (2005; an update of Obermeyer, 1999) and a recent systematic review by the Norwegian Knowledge Center for the Health Services [NKCHS] (Berg, Denison & Fretheim, 2010) together provide a comprehensive survey of health research on FGC and are used to structure the review. It will first be shown that ample research has focused on sexual and reproductive consequences of FGC, and next, that some evidence points to health consequences related to changes in neural reorganization after the cutting. With potential neural rewiring incurred during FGC, a neurobiological perspective can address other long-term consequences for women with FGC such as chronic pain. Furthermore,

8 While a debate exists in qualitative research using phenomenology about when to review literature (before, or after as an extension of bracketing), the other components of the study required literature be reviewed a priori. It was determined ethical to be familiar with and sensitive to ethnocultural concepts and Somali approaches to health and illness (including expressions of pain) by reviewing literature before and throughout.

21 consequences such as chronic pain that are laden with meaning and subjectivity would benefit from the inclusion of participant/patient voices jointly with quantitative measures.

RECENT SYSTEMATIC REVIEWS

Obermeyer conducted two systematic reviews to present updated evidence available on health complications of FGC (1999; 2005). In fact, for a while a few reports seemed to dominate the field and were quoted iteratively, such as the Hoskens report (Hoskens, 1977). In 1999, only a few health complications were documented (such as scars and infections) but the increase in the research on sexual and reproductive health effects by 2005 (effects related to obstetrics/gynecology, such as labour and delivery, infertility and sexual function) led Obeymeyer to conduct another review.

Obermeyer (2005) reviewed the nature and quality of evidence in studies published between 1997 and 2005 that discuss the health consequences of FGC; she evaluated the literature through three content categories which are indicative of dominant foci in FGC research: infections and anatomical damage, reproductive health effects and impact on sexual function. In general, she found more research on women with the less severe FGC. Regarding infibulated women, less research was done in natal countries, and mostly without control groups. She remarks with dismay that too much research focuses on ―inventories of physical harm and frequencies of sexual acts‖ (Obermeyer, 2005, p.456). In Obermeyer‘s analysis of quality evidence, studies report the health effects of FGC as follows: 1) A few studies show statistically higher risks in women with FGC for some infections (i.e. bacterial vaginosis) but not other types of infections 2) Studies are inconclusive about whether or not FGC involves a higher rate of urinary symptoms, showing mixed evidence on obstetric difficulties and gynecological problems 3) FGC is statistically associated with some other [previously identified] health-related complications (abdominal pain and discharge) and not others ([previously identified, such as] infertility or increased mortality for mother or infant)

Following the report of Obermeyer (2005) which pointed to inconsistent findings, researchers at the NKCHS performed a meta-analysis of seventeen high-quality comparative studies on FGC encompassing 12,755 participants from nine African countries (Berg, Denison & Fretheim, 2010). Studies were included if women with FGC were compared to women without FGC and if quantitative measurements were used to ascertain three categories of outcomes:

22 psychological, social and sexual. Most studies (eleven of seventeen) were clinical or hospital based (Berg, Denison & Fretheim, 2010, p.30). The group of studies included in this review is akin to highest quality group in Obermeyer‘s review (2005). The most frequently reported outcome was sexual function, such as desire and arousal. It was determined that the evidence base was too poor to establish conclusions about the psychological and social consequences. Yet effect estimates showed that women with FGC are more likely to experience pain during intercourse, reduced sexual satisfaction and reduced sexual desire. The quality of the evidence, however, was too low to establish causal relationship between these outcomes and FGC.

RESEARCH FOCUSES AND FINDINGS: SEXUAL AND REPRODUCTIVE HEALTH

Notwithstanding a small segment of literature that concerns FGC and other themes (obstetric experience, culturally-sensitive care for women with FGC, relationship between FGC and HIV infection), overall, a predominance of the biomedically- and health- oriented research has concentrated on the sexual and reproductive consequences of FGC (Einstein, 2008; Johansen, 2007; Obermeyer, 2005), reflected in the plethora of articles on sexuality, and obstetric, urogenital, and gynaecological themes.

The NKCHS review states that women with FGC are more likely to experience pain during intercourse (Berg, Denison & Fretheim, 2010). Yet there is no consensus to support the notion that FGC is destructive to sexual function, or that FGC has a uniform effect on sexual function (Obermeyer, 2005; Gruenbaum, 2001). Obermeyer (2005, p.456) points out that some studies report that women with FGC experience sexual pain (see El-Defrawi et al., 2001) while others report no significant differences (see Morison et al., 2001). There is extensive interest in the effect of FGC on women‘s sexual pleasure and orgasm yet many claims are often not based on correct knowledge of female sexual physiology (Catania et al., 2007). The research of Catania and colleagues has found that women with all grades of FGC can achieve orgasm (many erectile structures thought to be intact) and that FGC ―does not necessarily have a negative impact on psychosexual life (fantasies, desire, pleasure, ability to experience orgasm‖ (Catania et al., 2007, p.1677).

EVIDENCE FOR A NEUROBIOLOGICAL PERSPECTIVE

Some health consequences included in the large focus on sexual health can serve as indications of neural changes or dysfunction, yet previous research has not been directly interested in the neurobiological or neurological effects of FGC (Einstein, 2008). Okonofua et al. (2002) found significant differences in the most sensitive part of the body between FGC and non-FGC women in Edo State, Nigeria: 63% of women with clitoridectomy/excision report their breasts as the most sensitive part of their body compared with 44% of uncut women (OR = 1.91; 95% CI = 1.51-2.42). Similarly, Megafu (1983) found significant differences in the most erotic organ of the body, suggesting shifting sites of pleasure. In Gruenbaum (2006), ―one [Sudanese] Pharaonically circumcised woman....described a tiny sensation she gets on the top of her head when she is sexually aroused, but said she had no pleasurable genital sensations‖ (p.127). There are a few reports on neuromas of the clitoris (Gordon et al., 2007; Fernández-Aguilar & Noël, 2003), which Fernández-Aguilar and Noël estimate are underreported in the literature. A guarded gait has been observed among circumcised women (G.E. personal communication with Comfort Momoh; Walker, 1992; Walker & Parmar, 1993) and married circumcised women after painful first intercourse (Johansen, 2002), although gait has also been found to be the same as non- circumcised women in Egypt (Thabet & Thabet, 2003); where present, abnormal gait, guarding, and careful positioning may be signs of chronic pain (Allaire & Taezner, 2005).

Interestingly, the NKCHS study lists chronic pain as a long term consequence of FGC, but no empirical studies are cited (2010, p.20). In Obermeyer‘s review (2005), she lists frequencies of pain ranging from 9-87% among studies without a comparison group – wide variation central to Obermeyer‘s critique – but this mostly referred to sexual pain. General pain and FGC has been discussed more directly in the qualitative literature – nursing (Finnström & Söderhamn, 2006; Ness, 2009) and medical anthropological literature (Johansen, 2002) – while previous biomedical studies mostly examined pain in relation to reproductive lifecycle events – such as coitarche and menarche, and whether or not women experience dyspareunia and dysmenorrhoea. Chronic pain that might result from neural compensation due to FGC has not been studied explicitly (Einstein, 2008).

Some anthropological research with Somali women immigrants indicate that women report many somatic symptoms, a set of psychosomatic9 complaints stemming from the complex interplay of social, psychological, biological and other factors that influence bodily processes (Talle, 2007, 2008; Tilikainen, 2001). Talle (2008) writes: The circumcision pain appears to linger on in women‘s lives, and repeatedly surfaces in feminine bodily problems of chronic abdominal pain and ailments (Johansen 2002; Rymer and Momoh 2005; Talle 2007; Tiilikainen 1998). Many years later, in the exile context of London or Norway, the painful intervention on their bodies when they were still very young is brought to mind in diffuse and contradictory feelings of shame and otherness, and sometimes leads to opposition against cultural practices. The newly experienced negative attention on their infibulated genitalia may evoke both pain and belonging to the place where the scar was initially carved (p.67).

Infibulated Somali women have also reported new symptoms after leaving Somalia (Catania et al, 2007; Tillikainen, 2001). In her conclusion, Obermeyer (2005) points to the need for an expansion of the scope of research to include pain. It is important to look at onset of pain and shifts in pain; a new perspective in neuroscience suggests a developmental course for pain memories, where nociceptive input to the brain at an early stage may be activated later in life ―based on mood states, affective states, or other stressors‖ (Institute of Medicine, 2011 p.34).

Chronic pain may result from cutting the densely innervated region of the external genitalia area. Long-term changes in somatosensation have been observed in women post- mastectomy for treatment of breast cancer, penile ablation for genital cancer, or limb amputation by trauma or surgery (Einstein, 2008); similarly, neural circuits innervating the perineum could be modified in FGC. There would be wide-spread antero- and retrograde changes in the nerves associated with extensive genital cutting, affecting both the nerves traveling to and from the spinal cord, in the spinal cord dorsal horn, as well as brainstem and brain. Given the complex convergence of visceral afferent input from the pelvis on the neuronal plexuses and spinal cord, chronic pain syndromes in one area of the pelvic cavity or pelvic floor can instigate the development of pain and dysfunction in other areas (Wesselman & Czakanski, 2001).

As is the case with pleasure and pain, phenomena such new symptoms appearing with migration (and the complex biocultural interplay of these psychosomatics, or ―sociosomatics‖;

9 In this thesis, the word ―psychosomatic‖ will always refer to pain that is real, but stemming from a complex interplay of factors as written above.

Kleinman & Becker, 1998) require an interdisciplinary perspective because of their subjective and contextual nature. These important health consequences require biological and socio-cultural perspectives to meet; chronic pain – now viewed as its own disease process – has biological, psychological, and contextual inputs, explored in greater detail in an upcoming section (Melzack, 2001). Yet Johansen (2002; 2007) has pointed out that while biomedical research focuses on sexual and reproductive health complications without regard for context, anthropological research (the ―rites of passage‖ approach) focuses on the meaning of the practice and disregards the body. Knowledge about FGC would benefit from medical and anthropological perspectives meeting and employing mixed or multiple methods to comprehend certain issues such as pleasure and pain, which are trademarked by subjectivity and influenced by context. Pain, including hypersensitivity and referred sensation, is one assay of neural changes and how lived sensory realities are shaped through genital cutting in childhood (Einstein, 2008).

Summary: Previous foci in the literature and towards a neurobiological perspective

In summary, in biomedical research about the health effects of FGC there is a predominant focus on sexual and reproductive parameters. FGC could alter neural circuits in a substantial way; evidence of shifting sites of pleasure, signs of abnormal gait, pain, and multiple somatic symptoms changed by geographic (and cultural) relocation suggest the need for neurobiological inquiry sensitive to socio-cultural context. Such inquiry could a better understanding of how FGC affects the nervous system and the lives of affected women.

INNERVATION OF THE PERINEAL REGION AND EXTERNAL GENITALIA IN WOMEN

FGC involves the cutting of tissue in the perineum, a highly innervated region (Figure 4). The pudendal nerve is the major source of motor and sensory innervation for the perineum including the external genitalia. The pudendal nerve originates from the second, third and fourth sacral nerves (sacral plexus, S2-S4) and divides into three branches, which themselves and/or their targets could be affected by FGC. The dorsal nerve provides sympathetic motor and also sensory innervation to the skin and shaft of the clitoris. The perineal nerve and a muscular branch provide motor innervation to the deep perineal muscles of the urogenital triangle: the ishiocavernosus, bulbocavernosus, and transverse perineal muscles, which underlie the clitoris, labia, and vestibular bulbs (Hoyt, 2006; Shafik et al, 1995). The perineal nerve also serves the

26 labia minora and majora; the posterior labial branch gives sensory innervation to the posterior aspects of the labia majora, whose anterior aspects are also innervated by the ilioinguinal nerve (first lumbar segment; L1), genital branch of the genitofemoral nerve (L1-2) and perineal branch of the posterior femoral cutaneous nerve. Parasympathetic innervation arises from the pelvic splanchic nerves; from these, the cavernous nerve supplies the corporeal bodies of the clitoris. As Johnson (2009) summarizes with reference to Einstein (2008), recent research indicates that ―all types of FGC have a neuronal impact that affects genital sensation and/or function‖ (p.238). Depending on the type and extend of cutting, neuronal innervations may be damaged either directly by the cutting itself, or indirectly via injury to nerves that innervate the vulva and surrounding muscle‖ (p. 237). Impact on the central nervous system (CNS) may cause ‗extra- territorial‘ effects on sensory inputs from neighbouring uninjured nerves.

Figure 4: Innervation of the female perineum and CNS structures processing perineal input. A. Nerve branches subserving regions within the vulva. N/nn = nerve/s (Reprinted in Sokol & Sokol, 2007, from Gabbe, Niebyl , & Simpson, 2002). B. Pathyways in nervous system of spinal nerves serving the pelvic floor and pelvic cavity (illustration credit: Shelley Wall, 2006).

PAIN: A MULTIDIMENSIONAL PHENOMENON

To examine pain as an indication of neural rewiring, it has to be understood for its multidimensionality. The International Association for the Study of Pain (IASP) defines pain as ―an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage‖ (IASP Committee on Taxonomy 2011 [IASPCT] update of Merskey and Bogduk, 1994). Pain is often separated into acute and chronic types based

28 on duration. Acute pain occurs immediately upon tissue damage and up to three months after the injury (or disease, toxin) if known, at which point it is considered chronic (IASPCT, 2011 update of Merskey & Bogduk, 1994). But perhaps more important than time course, chronic pain is best characterized by its neuropathic features, meaning ―pain caused by a lesion or disease of the [central or peripheral] somatosensory nervous system‖ (IASP, 2011). The dysfunction of neuropathic pain is that the body‘s sensory system for pain itself no longer functionally relays information about tissue damage. Instead, nociceptors and central neurons become sensitized and indicate pain in the absence of noxious stimuli. There may even be pain relay from sites far from an original site of tissue damage or pain in the absence of any original tissue damage (Melzack & Wall, 1996). Increased knowledge of the mechanisms of neuropathic pain has resulted in viewing pain as a disease (Melzack, 2001).

As indicated by the IASP definition, the relationship between injury and pain fails to hold in all cases; in some, severe damage to tissue is unfelt; in others, damage of peripheral nerves in arms and legs may be accompanied by pain that persists long after injured tissues have healed (Melzack & Wall, 1996). Melzack and Wall (1965) proposed the Gate Control Theory of pain (GCT), to account for the fact that extent of tissue damage is not necessarily proportional to the amount of pain experienced; they proposed that in addition to signals traveling from peripheral tissues to the spinal cord and brain upon noxious stimulation, there are also signals from the brain to the spinal cord adjusting the sensation. Certain factors will either close or open the ―gate‖ of pain. Not only are physical stimuli salient but environmental factors influencing the individual psyche caught in the pain experience are salient as well. Cognitive-evaluative, sensory-discriminatory and affective dimensions converge in the experience of pain (Melzack & Casey, 1968).

The GCT dramatically reshaped the field of pain research. Given the multiple converging pathways implicated, the feeling of pain is more of an intersectional negotiation. Chapman (2003) writes, that ―[P]ain may begin with a neural message of tissue injury or disease, but it is the end product of complex events within the brain.‖ How an individual feels pain and responds to pain depends on various cognitions and emotions, beliefs, expectation, attention, arousal, interpretation of the situation, cultural factors, his or her ability to grasp the cause and consequences of the pain, previous experiences, and memory (Chapman, 2003; Keltner et al.,

2006). Pain emerges into awareness only after sensory, emotional, and cognitive processes have combined to form a coherent, integrated pattern of experience (Auvray, 2010; Chapman, 2003).

Despite the influence of the GCT, it was flawed in several important ways, for example, by conceiving that inhibition is provided by large, unmyelinated sensory afferents by disinhibition of inhibitory interneurons (Fields, 2007). Other phenomena left unexplained were painful phantoms occurring below the level of spinal cord injury. Phantom limb is instructive because it indicates an ongoing pattern of neural networks in the brain, independent (but triggered) by stimuli. A neural representation of a part of the body can be active without stimulation in that part (Fields, 2007).

Melzack‘s (2001) concept of the neuromatrix posits a complex pattern or network of central neural processes subserving the body-self and underlying pain.10 The neuromatrix incorporates sensory input, genetic programs, the neural-hormonal stress system, and cognitive functions: ―We now have a theoretical framework in which a genetically determined template for the body-self is modulated by the powerful stress system and the cognitive functions of the brain, in addition to the traditional sensory inputs‖ (Melzack, 2001, pp.1381-1382).

Thus, biological, psychological, and socio-cultural factors are mediators of pain status. These factors also inform how or if an individual communicates about pain. The meaning of a given sensation and its embodiment, as refracted through socio-cultural systems (e.g., gendered expectations, a culture‘s value of vocalizing pain), will be important shapers of pain expression and may, in turn, influence the physiological development of chronic pain. Conventions around pain expression and meaning-making of sensation are connected in wider socio-cultural ideologies. As well, pain is difficult to differentiate from suffering, where the link is embedded in layers of socio-cultural meaning (Cassell, 1982; Chapman, 1990; Chapman & Gavrin, 1993; Chapman, Nakamura & Flores, 1999). Various notions of identity, then, are vital governing forces around potentially-pained bodies.

Attention to context and identity in the study of pain is also warranted by the distribution of chronic pain conditions among populations. Certainly pain does not discriminate, yet chronic

10 The body-self is a perceived unity ―distinct from other people and the surrounding world‖, the site of ―diverse feelings, including the self as the point of orientation in the surrounding environment‖. It is produced by central neural processes ―built-in‖ by genetic specification and modified by experience (p.1379).

30 pain conditions are disproportionately found amoung women and racial minorities (Berkley, 1997; Mechlin et al., 2005; Unruh, 1996), raising both biological and sociological questions.

In summary, pain cannot be separated from context – physiology from individual psychical activity, or individual psychical activity from the socio-cultural environment. Context is ―an extension of the corporeal body‖ (Finkler, 1994). Expanding on Honkasalo (1998), Grace and MacBride-Stewart (2007) write: ―There is a consensus emerging across the spectrum of interdisciplinary researchers on pain that chronic pain conditions cannot be understood and responded to in solely biomedical terms‖ (p. 48).

In this sense, pain is a valuable instance of the biopsychosocial quality of the body; pain is a multidimensional experience partly influenced by an individual‘s affective state and cognitions, which are necessarily seated in cultural and social context and models of identity. Pain warrants a multidisciplinary approach. Following her general critique of knowledge gaps surrounding FGC, Johansen (2002) writes that there is a void between ―bodily pain as nerve impulses, on the one hand, as is the approach in medical research, and symbolism, on the other hand, as tends to be the focus of anthropologists‖ (p.313). To gain a fuller picture of potential long-term sensory changes stemming from the cultural practice of FGC, it is informative to combine the socio-cultural with the corporeal, to deploy methods that include narratives and quantitative and or physiological measures.

MIXED-METHODS

“In order to understand pain, we must consider a panoply of meanings, motives, aspirations, attitudes, beliefs, and values, the analysis of which requires a complex methodology.”

(Souza et al., 2011)

“It is still my view that theoretical and methodological eclecticism is crucial to the feminist project of better understanding and improving women’s lives.” (Wilkinson, 2000, p.360)

The fact that pain is a multidimensional experience depending on neural signals, interpretation, culture, and past pain experiences influenced the design toward mixed-methods research.

OVERVIEW OF THE FIELD OF MIXED-METHODS

The terms “qualitative” and “quantitative” allude to a wide range of referents – sometimes paradigm, but sometimes method or tool – which makes discussions about them complicated and often ambiguous. As paradigms, each approach contains assumptions about the nature of truth and reality and how we can come to know them (i.e., ontological and epistemological assumptions). “Qualitative” can refer to naturalistic or interpretive inquiry that takes human beliefs and understandings about a reality as its central concern. It supposes a reality of contextual truths, questions objectivity, and favours inductive reasoning. As a paradigm, this nature of inquiry is interpretive or constructivist (Giddings & Grant, 2009). Qualitative methods of research ask the participant to put in their own words what it is like for them and as such, represent a subjective approach that privileges the participants own narratives. Qualitative approaches allows for the revelation of a given life experience in all its varieties and divergences from a „norm.‟

From the same perspective, ―quantitative‖ refers to the outlook of positivist or post- positivist inquiry, which seeks objectivity, favours deductive reasoning to test hypotheses about discoverable truths, and concerns itself particularly with causes and explanations. Quantitative methods rely on pre-determined questions asked of all participants with large numbers smoothing the rough edges of individuality and yielding averaged response. As such, quantitative methods represent a third-person approach and tend to privilege the norm of a given group. Medlinger and Cwikel (2008) write: The combination of two methods provides researchers with multiple ways to look at a complex problem. On the one hand, the quantitative method allows for deductive thinking, scientific testing of hypothesis, standardized data collection from a large number of respondents, and statistical analysis. On the other hand, the qualitative method emphasizes inductive thinking, an exploration of complex issues in depth and breadth, building of models and theory, using descriptive materials from different types of data collection (e.g., in-depth interviews and focus groups) and analysis (p. 282).

Some view mixed-methods as their own paradigm, a rogue ―third paradigm‖ (Johnson and Onwuegbuzie, 2004), although others believe mixed-methods can be deployed for any of positivist/post-positivist, interpretive/constructivist, or critical scholarship (Giddings & Grant, 2009). Because ―qualitative‖ and ―quantitative‖ themselves can refer to paradigms or to methods,

32 combining them in mixed-methods research can occur at different levels and with different emphases. Morgan (1998) summaries two groups of potential sources of difficulty in mixed- methods research: technical issues and paradigmatic conflicts. It might be reasonable to imagine that conciliation is inherently impossible at the paradigmatic level where qualitative and quantitative embody conflicting ontological and epistemological assumptions.

Critical Realism

Critical Realism (CR) crosses (post)positivist and interpretive paradigms by admitting to a reality independent of consciousness, while also admitting that knowledge of it can only come through the study of consciousness. CR is pragmatic, yet regards meanings as fluid (Bazeley, 2009). CR embraces methodological pluralism in the service of the enquiry (McEnvoy & Richards, 2006): ―From a pragmatic perspective, the primary issue is to determine what data and analyses are needed to meet the goals of research and answer the questions at hand‖ (Bazeley, 2009, p.203)11. The current study embraces a Critical Realist approach by investigating participants‘ narratives and meanings (the qualitative component) but also taking physiological measurements (the quantitative component).

Mixed-Methods Research Design

Mixed-methods research can adopt a variety of project designs. Creswell (2009) outlines four aspects of mixing methods that will determine choice of research design: 1. Timing (sequential or concurrent) 2. Weighting (emphasis) 3. Mixing a. Connected mixing: One method enables the second method b. Integrated mixing: One type of data is translated into the other form c. Embedded mixing: Positioning one form of data in support of the other form 4. Theorizing (whether a theory will guide the research or not)

Some examples of research designs combining methods are offered by Creswell (2009), illustrated in Figure 5.

11 Also see, Einstein (2011). ―Situated Neuroscience: Exploring a Biology of Diversity.‖ In Robyn Bluhm, Heidi Maibom, & Anne Jaap Jacobson (eds), Neurofeminism: Issues at the Intersection of Feminist Theory and Neuroscience, Palgrave, NY (forthcoming). This chapter discusses a feminist neuroscientific approach by adapting current neuroscientific methodologies for studying the body in context.

Figure 5: Mixed-methods research designs (Creswell, 2009). Notation is adapted from Morse (1991). Capital letters indicate a priority method, while arrows indicate sequence.

Greene, Caracelli, and Graham (1989) state five goals that mixed-methods research can accomplish or reasons for its use: (a) Triangulation: The corroboration of sets of findings across different methods; (b) Complementarity: Enhancing or clarifying specific findings from one method by using the other; (c) Development: Using the results from one stage of research in a sequential design for the development of the methods for the following stage; (d) Initiation: Developing new frameworks or perspectives through highlighting paradox, missing, or conflicting findings; and (e) Expansion: Extending the breadth of a study by using different methods for various research components (see Medlinger and Cwikel, 2008; Figure 2, p. 285).

Spanning these goals, enriched findings are the most common overall reason for combining methods (Bazeley, 2009). Mixed-methods are said to utilize the strengths and minimize the weaknesses of either approach (Johnson & Onwuebuzie, 2004).

Integration of Findings

Bazeley (2009) cites Woolley (2009), writing that integrating components in a single study so that they are ―mutually illuminating‖ can produce findings that are ―greater than the sum of their parts‖ (in Bazeley, 2009, p.204). Integration is ―the interaction or conversations between the qualitative and quantitative components of a study‖ (O‘Cathain, Murphy & Nicholl,

2010). Matching thematic, scaled and numeric data can increase the potential for rich conclusions (Bazeley, 2009). Integration of components requires interdependence in reaching a common theoretical goal (Bazeley, 2009).

Despite the promising outcomes, integrating findings at into a novel analysis is difficult and until recently, uncommon. Morgan (1998) points to the difficulty in analyzing the data together coherently. In fact, Morgan repels contradictions in data, which certainly may arise between data collected from different methods. Instead, Morgan emphasizes practicality accomplished through a complimentary division of labour. Thus, most often when the term ‗triangulation‘ is used, it means ‗confirmation‘ or ‗convergence‘ (Morgan, 1998), whereas integrated conclusions via ―blending data or meshing analyses‖ to produce synergized findings or gleaning finding from contradictions are less common (Bazeley, 2009, p.204).

So clearly, as Morgan (1998) himself iterates, while mixing or integrating at the data analysis level is a challenge, it might be another important form of triangulation even beyond confirmation or convergence. Rather than being a glitch, contradictions between analyses may result in a methodological explanation or insight into the substantive issue (Bazaley, 2010 citing Mathison, 1988, p. 92). Towards a methodological insight, findings from different methods can be viewed as the influence of context on how people report. New hypotheses can also be generated from contradictions. Bazaley (2010) describes three groups of integration strategies based on when and how data types are brought together (p.88):

1) Separate data and analyses: Keeping analyses of different components separate, and then bring the findings together afterwards in a conclusion. Studies use this strategy for triangulation (either complementing or extending, or confirming), expansion, and development. 2) Combining data types for synthesis: Keeping analyses of different components separate, and additionally combining data types for synthesis or comparison in analysis. A secondary opportunity is created by utilizing earlier integration of the data from each component, breaking through compartmentalizing to evaluate if patterns exist. Simple matrices, organizational software databases or spreadsheets are practical tools for comparative and pattern analysis. 3) Mixing approaches to analysis of data: Converting one form to another, such as qualitising numerical data, or quantising qualitative data.

Quality criteria and validation of mixed-methods research

The strategies of ensuring the quality of mixed-methods research should be congruent with the paradigm chosen and the data one is relying upon (Giddings & Grant, 2009). This study proceeds from a critical realist standpoint but given the small sample of quantitative data that resulted, criteria applicable to an interpretive paradigm are emphasized. Given that abstracted interpretation is conducted with the researcher as the tool for analysis, emphasis within in the interpretive paradigm is traditionally placed on the trustworthiness of the researcher (Giddings and Grant, 2009). Giddings and Grant (2009) also argue that trustworthiness is related to the processes of data collection and analyses. Firstly, careful reflection has been undertaken in this study to examine my prior assumptions and understand my starting point. This has application for all research components. Next, the qualitative analysis is validated in line with the Critical Appraisal Skills Program (CASP) appraisal tool (Public Health Resource Unit England [PHRU], 2006) and criteria specific to phenomenology. Validation of the specific measures used in the quantitative study component is also discussed.

Summary

Mixed methods can capture many perspectives; a combination of personal narratives and external perspectives (objective or pseudo-objective) can obtain overlapping, unique, contradictory or mutually-enabling types of information. Mixed-methods is designed to capture the complexity of experience and thus are well suited for research into chronic pain, where sensory input, perception and interpretation are all material. This approach demands that physiological and quantitative data can only be understood in the context of women‘s stories and their whole lives, and that lives are dynamic and changing. OUR STUDY

Ethics approval for our study was obtained from the University of Toronto Research Ethics Board.

RESEARCH AIMS

We hypothesized that neural changes occurring as a result of FGC would lead to chronic pain later in life. We aimed to explore this possibly primarily through subjective reports of pain

36 and secondarily, by objective measures of pain including hyperalgesia localized to the vulvar region, and survey reports of multiple regions of pain (in the vulvar region or globally). We were interested in discussing testable pain along with interpretation and meaning of bodily pain and FGC from the perspective of women with FGC.

ESTABLISHMENT OF THE COMMUNITY ADVISORY GROUP

A community advisory group (CAG) was established through an initial contact, a member of the Toronto Somali community working in a community health centre (CHC) in the GTA. The initial contact asked three members of the Toronto Somali community to join the CAG. Once formed, the CAG was consulted about the value and direction of the project, translational issues (cultural and linguistic) and about which instruments would be appropriate,. We met with the CAG once every three months on average over the course of the study to discuss issues arising, modifications to the protocol, as well as to keep them informed of our progress.

INCLUSION CRITERIA

Somali women of reproductive age (pre-menopausal for consistent hormonal status; approximately ages 18-45) who had undergone Type III FGC in Somalia were included in the study. We opted to work with the Somali community because a uniform type of circumcision Type III), which is also usually the most extensive surgically, was practiced in Somalia on an estimated 97.9% of girls at the time adult women were at the age of circumcision (WHO, 2008). We required that they had a minimum of two years living in Canada..

RECRUITMENT

Recruitment was carried out by members of the CAG comprising a convenience sample. Fourteen women were tested over two sessions, involving first a qualitative interview then a quantitative interview. Data collection took place on-site at the CHC. Participants received fifty dollars in compensation for their time and expenses for each visit. At the first visit, participants were asked to come back for the second visit if they felt comfortable. The process of data collection is illustrated in Figure 6.

Figure 6: Process of Data Collection

The socio-demographic profiles of the participant group are presented in the qualitative study section, which is presented first. The results of the medical histories and GHQ-12 are presented later with the quantitative data.

QUALITATIVE STUDY

Qualitative research is used to understand people‘s beliefs, personal experiences (Harding 1987), personal meanings of social categories (Marecek, Fine & Kidder, 1997), and to explore variables not previously identified or not identifiable with quantitative methods (Marshall and Rossman, 1999). Qualitative methods show a greater deal of flexibility than generally offered in quantitative methods. They are often guided by different approaches such as grounded theory method (Glaser & Strauss, 1967) or phenomenology, which favour their own methods (techniques) following from their goals and assumptions. Methods or techniques include focus groups, ethnographic observation, or arts-based mediums. A common qualitative method is the interview. Interviews can be guided by pre-determined questions, which the researcher follows verbatim. Alternatively, interviews can be less constrained, use questions as general guides, and give greater reign to free narration of the participant (semi-structured). Narratives that emerge from interviews are typically analyzed for key themes (thematic analysis), which can be descriptive (Sandelowski, 2002) or can proceed to another level of abstraction or interpretation.

INTERVIEWS AND NARRATIVES

Narratives are critical to clinical encounters to extract symptoms and diagnostic clues, providing factual information. But narratives also demonstrate the composition of people‘s perceptions, granting access to ―how pain beliefs are shaped in social interaction, and how emotions, perceptions of pain and social characteristics are embodied‖ (Johansson et al., 1999). In other words, narratives access the social construction of pain, pain perceptions, and other perceptions about health, illness, and normalcy, demonstrating how people intake (and recycle, refashion) concepts from the world around them even into their bodies. Narratives can show the fluidity of mind/body and biology/culture.

Furthermore, language, narrative, and speech are more insightful about health/illness than merely what is said or represented: Language is a ―gestural, intentional form of expression or communicating‖; language is bodily/embodied and communicates perception and consciousness, which have an embodied nature (Grace, 2003, p.53). Grace (2003) speaks of the need for a strategy in qualitative research for analyzing meanings, from narratives in particular, within a non-representational theorization of language commensurate with phenomenological accounts of embodiment. Discourse analysis is one strategy to analyze, in addition to what is being said in speech, what speech is doing (Wilkinson, 2000); furthermore attention to ―bodiliness‖ in verbal data is a strategy of the embodiment approach (Csordas, 1999, p.148). Narratives can be important in a holistic picture of a person‘s sensory world, especially if people‘s beliefs influence not just their behaviours but also materially influence disease processes. Pain research, however, been dominated by a neurophysiological focus on sensory aspects at the expense of first-hand voices (Bendelow, 2000; Bendelow & Williams, 1995; Chapman, et al., 1999; Morris, 1991). Mixed-methods research can bring the sensory aspects of pain and first-hand voices into conversation.

SELECTING PHENOMENOLOGY: PHILOSOPHY MADE METHOD

The ―first generation‖ phenomenologists (Husserl, Heidegger, Merleau-Ponty) primarily developed their ideas as philosophies; later writers have adopted them for the purpose of research. Well known ―second-generation‖ phenomenologists include Giorgi, Colaizzi, Van Kaam, van Manen, or Benner, the first three of which were psychologists (Munhall, 2007; p.159). In keeping with its philosophical origins, phenomenology is used to study lived

39 experience and the meaning for those living the experience. Phenomenology as a method does not generate theory, rather it is a descriptive mirror, or furthermore, an interpretive characterization of the phenomena or experience as an outgrowth of the description told by participants.

Following Heidegger‘s notion of being-in-the-world, interpretive phenomenological methods explore the contexts of phenomena of interest (lifeworlds), search for situated meanings, and situate interactions in time, space, and embodiment, because people are constantly making meaning of ongoing experience (Munhall, 2007, p. 148). Interpretive phenomenology gives attention to perceptions and subjectivities, and the intersubjective spaces formed between people. Interpretive phenomenology may challenge objectivity, positing instead many truths because people‘s lives and realities are interpretations. According to Munhall, ―state of the art‖ of phenomenology reflects a postmodern stance upholding multiple interpretations and realities (Munhall, 2007; p. 159).12

Phenomenology was selected as a methodological guide on the basis of its relevance to research of first-person experience, meaning-making and interpretation of one‘s bodily experience, perception, and sensation. It was also chosen for the tradition of giving close attention to everyday life, particularly one‘s body throughout the day. This is congruent with meaning as an important variable in pain and sensory experience. Furthermore, through a phenomenological approach, both socio-cultural models (of illness, of pain, as examples) and personal negotiations of these are explored; participants can be seen as agents and individuals but also as embedded in culture(s) and the world(s) around them.

A flexible approach or attitude

Phenomenology is more of an approach or an attitude than a method; a researcher using phenomenological approaches is encouraged to ―think phenomenologically‖ (Munhall, 2007 p. 146; van Manen, 1990). Any phenomenological method should have a familiarity with the philosophical underpinnings and assumptions, and make use of the precepts and strategies contained in the source philosophy such as bracketing and phenomenological reduction (Thomas,

12 Phenomenology can also take on critical forms that are non-essentialist and non-absolutist, assuming an ontology of processes or relations and an epistemology of situated knowledge rather than hermetic, static, essential truths (Grace, 2003).

2005).13 A diversity of schools exists within phenomenology and often there is diversity in usage of the same terminology. Norlyk and Harder (2010) surveyed empirical phenomenological studies over a 1.5 year period, finding eighty-eight articles in four categories based on stated label or approach. Furthermore, references to phenomenologists informing the studies (van Manen, Benner, Giorgi, Colaizzi, others) overlapped between categories. A review of the articles in the largest category (studies simply labelled ―phenomenological‖) also demonstrated wide variation in use of key phenomenological terms and practices.

While understandably problematic in terms of grasping philosophical assumptions or the concepts intended by keywords, the reality of flexibility with phenomenology may not exclusively constitute a problem, as Norlyk and Harder (2010) imply. Rather, flexibility contributes to the goal of allowing the data generated in progress to inform the preset directions of the study design. In phenomenology, the direction cannot be known at the outset because the inquiry is a process of the unknown (Munhall, 2007, p.152). In other words, the flexibility within phenomenology may uphold some of the values of qualitative research that respect plurality and specificity of context.

QUALITY CRITERIA

Qualitative research is not interested in generalizability, but how individuals interpret meaning of experience in their own ways, and sometimes transferability (Giddings & Grant, 2009). Concepts of rigour, relevance, and credibility have been used instead. The Critical Appraisal Skills Program (CASP) appraisal tool (Public Health Resource Unit England [PHRU], 2006) is an example of a practical tool for analysing quality in qualitative research, and includes many of the major agreed upon principles. The CASP tool states:

Three broad issues need to be considered when appraising the report of qualitative research: Rigour: has a thorough and appropriate approach been applied to key research methods in the study? Credibility: are the findings well presented and meaningful? Relevance: how useful are the findings to you and your organisation? (PHRU, 2006)

13 Thomas (2005) advocates more strongly for a “solid foundation and demonstrated knowledge of” the philosophical underpinnings.

The screening questions of the CASP tool seek to determine that a qualitative methodology is appropriate and that a clear statement of aims is available (PHRU, 2006). Quality is then processed through ten sections: (Available in detail in Appendix II)

Appropriate research design: Was the research design appropriate to address the aims of the research? Sampling: Was the recruitment strategy appropriate to the aims of the research? Data collection: Were the data collected in a way that addressed the research issue? Reflexivity: Has the relationship between researcher and participants been adequately considered? Ethical issues: Have ethical issues been taken into consideration? Data analysis: Was the data analysis sufficiently rigorous? Findings: Is there a clear statement of findings? Value of the research: How valuable is the research?

Within qualitative research, phenomenology seeks further qualities specific to its approach, emphasizing fidelity to the phenomenon, and vividness. An important source of fidelity comes from inclusion of substantive (and an appropriate number of) participant quotations and importantly, poignant, descriptive, written accounts, which lend vividness. Polkinghorne (1983) poses four questions: Does the research convey a sense of reality? Does it compel the reader and draw him or her in? Can readers enter the account emotionally? Can readers recognise the phenomenon from imagining the situation or from their own experiences? Citing Dahlberg et al. (2008), Finlay writes: ―The best phenomenology highlights the complexity, ambiguity and ambivalence of participants‘ experiences. Lifeworld research is characterised by its capacity to present the paradoxes and integrate opposites demonstrating holism‖ (2008).

Participant review of findings is potentially a source of validation; Giorgi (2006) negates the use of participant validation because participants are not familiar with the phenomenological process. Other researchers are cautious but not dismissive of it, wary of participants‘ being self-conscious of their appearances when reviewing the findings

42 but also aware that their validation is an important moral-political part of the research process (Ashworth, 1993). Quality of the data in the current study was further ascertained by reflecting on the findings with the CAG, the qualitative team (see Methods below), plus an additional sharing seminar with five research participants where GE presented our preliminary findings and participants gave feedback to GE and myself.

SUMMARY OF METHODOLOGY: STUDYING THE NEUROBIOLOGY OF FGC WITH PHENOMENOLOGICAL QUESTIONS

The qualitative component of this study is guided by interpretive and embodied phenomenology producing narratives on circumcision and daily life. Phenomenology is particularly suited to the study of pain, a potential health complication of FGC which requires more attention to local context, and which calls for multidisciplinary collaborations to take into account local norms and patterns of communication about the body, as Oberymeyer (2005) writes: ―While it is theoretically possible for an outside observer to assess the presence and seriousness of most of the health complications of FGC, this is much more difficult in the case of pleasure and pain, where the central variable is the respondent‘s experience, and where such experience is socially mediated (p.447).‖ Phenomenology offers an excellent approach for addressing meaning-making in human experience, as something that characteristically differentiates humans from other systems, objects and other animal subjects. As such it is particularly well-suited for the study of sensation and pain as first-person experiences and perceptions that are shaped somewhere amid the co-production of biology and culture. It inquires into the first-person voice and experience without denying biological processes. The objective of the inquiry in phenomenological terms was to investigate what it is like to experience daily, embodied life as a circumcised adult woman in the Somali Diaspora in Canada, and what circumcision means in reflection.

METHODS

Semi-structured interviews were held with fourteen Somali-Canadian participants. Respective meetings to discuss this material were held with 1) a qualitative research team consisting of Jan Angus (JA, Department of Nursing, University of Toronto), Janice DuMont (JD, Women‘s College Research Institute [WCRI]) and Robin Mason (RM, WCRI) and with 2)

CAG members. The qualitative component of the study is informed by phenomenology in all research phases.

DATA COLLECTION

Interview guide

Interviews were conducted by RM, JA, and Deanna Duplessis (DD; M.A. Dalla Lana School of Public Health, University of Toronto).

Semi-structured interviews included prompts on the following information: 1) Place of birth, family, and your immigration to Canada 2) Your circumcision story 3) Take me through a day in your life and how your body feels 4) When does your body feel best/worst 5) Five words to describe FGC and/or how your body feels

Data sources for analysis

Data sources for a phenomenological analysis can be interviews, observations, or documents (Creswell, 2007). Primary data came from fourteen interview transcripts and the associated audio recordings, which confirmed non-verbal mannerisms like pauses, emphases, tone and mood. Additional notes came from CAG meetings, qualitative team meetings, and one knowledge translation and feedback seminar with five study participants.

Data analysis was assisted with several secondary data sources (in addition to literature on Somali approaches to health and illness and/or FGC), which imparted a sense of the realities faced by participants in Somalia, experiencing circumcision, immigration, and in the Canadian the health care system, including:

1) Health pamphlets prepared by local, community organizations and/or Somali women‘s groups including: a. Horn of Africa Health Project: Health Education Workshop for Somali Female Students at Silverthorne Collegiate Institute by Dr. Cadigia Mohamed Ali, 1995 b. Somali Women's Health Group at the Sandy Hill Community Health Centre, Vanier, Ontario

c. York Community Service Study on the Mental Health Needs of the Somali Community in Toronto, September 1999, Prepared by Abdullahi S. Elmi 2) Symposiums on immigrant health and/or FGC including: a. Symposium on Female Genital Cutting (FGC): ―Focus on Canadian Approaches to Addressing FGC‖ hosted by the Sexuality Education and Resource Centre, (Viscount Gort Hotel, Winnipeg, May 4th – 5th, 2011) b. Global Health Discussion Forum with Dr. Deqa Mohamed and Dr. Hawa Abdi (physicians at the Hawa Abdi Hospital, Lafoole, Somalia): "Emergency Medicine in Somalia: Improving the Capacity of Doctors‖ (Sickkids Hospital, Toronto, July 13th, 2011) c. The launch of ―Every Woman Matters: A Report on Black Women and Women of Color Accessing Primary Healthcare in Ontario‖, a collaboration of Women's Health in Women's Hands CHC (WHIWH-CHC) and The University of Toronto Factor-Inwentash Faculty of Social Work with support from several GTA CHCs.

DATA ANALYSIS

Analysis of interviews was done primarily by myself using manual coding, while in a collaborative team setting offering dialogue, discussion. Sorting, organizing, retrieval and some coding was assisted with the qualitative data software Nvivo (version 8 and 9; QSR Software International). Interview data were collected until theoretical saturation, when no new themes arose (Glazer & Strauss, 1967).14 As the interviews were conducted, emerging themes were discussed with the qualitative team. Ongoing reflection and analysis in a team context is an asset to qualitative research (Cohen, Kahn, Steeves, 2000). An audit trail was created and maintained out of all sources and notes, and confidentially stored in the Laboratory of Cognitive Science and Women‘s Health in Sidney Smith Hall, St. George Campus of the University of Toronto.

Phenomenological analysis of the interviews

Phenomenology strives to build a whole picture of the phenomenon, rich descriptions that fit and explain most pieces of the data, conveyed through themes. A thematic analysis develops

14 Additionally, by some numerical accounts, the quantity of participants was also adequate for a phenomenological study: Creswell (2007) advises conducting extensive interviews with up to ten people, while Morse (1994) recommends interviewing at least six participants.

45 or discovers themes that extend across the set of interviews; themes are structural components of a phenomenon that give it its shape, but also include contradictory data. Thematic analysis strives to distil participants‘ meanings and interpretations out of their narrative accounts (Denzin & Lincoln, 2005).

In interpretive formats, the researcher engages in hermeneutic or interpretive reflection to bring the essence(s) of phenomenon. She uses language to ―make visible‖ (Creswell, 2007) something known to participants. Phenomenological methods are concerned with both what is revealed and concealed, so silence is also parsed. There are several types of silence for reflection: literal silence (pre-verbal awareness around knowledge we have), epistemological silence (awareness that more can be said than the speaker knows), and ontological silence (silence of being where dumbfounded in face/presence of truth) (van Manen, 1990). The researcher reflects on four existential of the phenomenological framework: Lived space (spatiality), lived body (corporeality), lived time (temporality), and lived human relation (relationality) (van Manen, 1990, pg.101). The essences of a phenomenon result from syntheses of textual and structural descriptions of what and how participants experienced the phenomenon.

Given that phenomenology is more of an approach or perspective, Munhall (2007) proposes using a guide rather than a linear method. Analysis proceeded with steps adopted from Saldana and Adorno (2002) who use hermeneutic procedures informed by Merleau-Ponty‘s consideration of embodiment. Saldana and Adorno (2002) write about description, reduction and interpretation; interpretation incorporates hermeneutic procedures into the analysis, including capturing aspects of what is being revealed and concealed, the manifestation of preconscious phenomena, and understanding the meaning of the phenomenon that the participant experiences. These steps are rooted in Merleau-Ponty‘s elaboration of description, reduction, disclosing the essences or structures of meaning immanent in human experience, and intentionality, which can be in order described as follows (1962): (1) Use naive description of participant. Avoid premature explanatory constructs. (2) Take the meaning of experience exactly as appears to the participant‘s consciousness. (3) Look for invariant and unchangeable characteristics in the phenomenon. (4) Explore how each human being is related to the world and to objects through intentional acts. Consciousness has intentionality, it is conscious of something.

Used as a guide, the steps of Saldana and Adorno (2002) are indicated below in bold. Naturally some further specification and even tailoring to the project was required within these general steps; elaboration is indicated in plain typeface. Description, reduction and interpretation were conducted via ideographic (within one interview unit) and nomothetic (across all interview units) analyses:

1) Descriptions of experience were analyzed – I read the transcripts several times for general impressions and familiarization. The first read grants a view of ―sensitizing concepts‖ (Ritchie & Lewis, 2003). On the third read, I paraphrased each interview as directly as possible, trying to stay true to exactly what was present without interpretation. 2) Ideographic analysis with individual manuscripts – The first iterations of the paraphrased statements were expanded upon by searching for patterns. Units of meaning were identified in the participants‘ language. Attention was also paid to units that did not seem to relate to the research question, perhaps contra Saldana and Adorno (2002). I identified units of meaning of different sizes, including repeated words, highlighting prominent statements, facts, events, story arcs, chapters, emotions, and repetitions of each. First elucidations of units of meaning were then interpreted in the researcher‘s language. I reviewed the transcript and my description and highlights to produce notes per participant of reoccurring themes. I discussed each interview with another reader – a volunteer in the lab Kimberly Blom (KB) (B.Sc. Psychology, Queen‘s University) – whereby we reviewed the prominent features, units and later themes. 3) Nomothetic analysis across the set of manuscripts – Invariant aspects of the phenomenon were distilled, and a distinct level of researcher interpretation also emerged. I looked for convergences of units of significance across interviews. These were arranged into broad themes/categories. I discussed convergences with KB; in addition to commonality, we also noted outliers. Nomothetic discussion continued later with two other undergraduate students of Human Biology volunteering in the lab, Justina Jueun Lee (JJL) and Mekong Huang (MH). We then used a method of reviewing qualitative narratives to establish a collective understanding of pain conveyed by participants, described later on. Reviewing the set of interviews also granted some further, data-driven queries to pose back to the manuscripts. I also held discussions with DD and JA who

conducted some of the interviews to ensure what I was finding resonated with their impressions.

Within the nomothetic analysis, I hierarchicalized units of meaning, subsuming smaller units that did not stand alone under larger units as instances or illustrations. To assist with this, KB and I mapped out all the units on a board, and while looking at each interview, linked common units (of all sizes) together. This helped to place smaller units beneath larger, umbrella units and see relationships that constituted themes or categories. Themes that were discussed at the qualitative meetings with JD, RM, and JA (convened when interviews were still being collected) were very similar; KB and I discussed these and assimilated them into our work, though the overlap was striking and confirmed our understandings.

At this point in the analysis, I came across Bates‘s biocultural model of pain (1987). Interestingly, the components that Bates describes as feeding into physiological pain perception, such as ethnocultural conceptions of pain, attitudes towards pain, and socio-cultural comparison, were queries that I brought to my reading and were felicitously being tracked in the analysis underway. The themes provided context to the past and current-lived experience of FGC, and could be seen as feeding into sensory realities and potential pain. Bates‘ model helped to conceptualize this, and further expands on Csordas‘ invocation to consider bodiliness in verbal data: contextual information can be viewed as bodily.

Acknowledging researcher assumptions, and both a priori and data-driven queries

Phenomenological description is a mirroring and naive process; the phenomenological enterprise is like a distillation of experience and how a phenomenon appears to a sample of people who have undergone it. As described, in some traditions there is also an element of interpretation. As in most research, the inquiry is driven by preset ideas of what the topic is about. Even deciding some inquiry is important, based upon knowledge gaps, affects the research by imposing a certain frame. Particularly if the researcher has conducted (or throughout the process, is conducting) a literature review, her ears will be attuned to certain questions.

In this case, the interviews are framed within the inquiry of neurobiological changes and pain, alongside an interest in its biocultural nature, phenomenological meaning and

48 interpretation, and a working knowledge of pain physiology. As a result, themes were allowed to emerge from the data of participants‘ experiences, while certain queries were also hovering above the data when analyzed and certainly influenced the findings. Queries were questions that I posed to the data when reading and analyzing, in addition to (or surrounding) the responses to concrete prompts and questions given to the participants. Queries do not have to be random, uninformed, or biased. As an example, existing literature can inform queries by suggesting what a phenomenon might be about. Furthermore, some queries in the study were data-driven, emerging during the analysis, in addition to the queries that were conceived of a priori.

These queries are acknowledged and reported here as a reflexive form of bracketing. Queries included: 1) How does the participant talk about her body? Attention to body talk. 2) Is this participant experiencing pain in her daily life as an adult? How does she describe her own health? How does she relate to the term ―pain‖? a. How do I as a researcher know about pain? How do explicit and implicit expressions of pain and illness arise and interact? When can I as a researcher determine that a participant experiences pain (or does not) when her self-report is the opposite? 3) How does the participant perceive the place or significance of pain or illness [in life]? How does she express pain and when (on what occasions in conversation, about what)? 4) What cultural realities does she allude to, cite and/or reshape, or speak about explicitly? 5) What are transitions in her body consciousness and awareness? What are transitions in understandings of body, gender, health? a. How does her experience of her circumcised body change with migration? 6) What meaning and context does she give to her experience of FGC, her circumcised body? 7) What constitutes sensory experience and perception? (especially pain) 8) Discourse: what is talk doing?

Answers to these queries (for example, ―reluctant to use term pain‖) helped to elicit units of meaning. To further confirm our understandings against the participants‘ words and to further develop and enrich the themes, I went back to text with preliminary themes and the above

49 queries and, using Nvivo software, labelled sections of manuscript text. The themes were expanded further, and quotations were identified.

Assessing pain conveyed in the interviews

As with much of the analysis, collaboration was undertaken in assessing pain from the interviews between myself, JJL and MH involving a grading system. I sought a common understanding and consensus on pain as conveyed in the interviews. We read them thoroughly and produced scores based on Gaston-Johansson et al. (1990), who find that across several cultural groups a similar hierarchy of terms for painful experiences exists: ―pain‖ is at the apex, followed by ―hurt‖, and ―ache‖, offering a scale of zero to three. Zero referred to an imagined average thirty-something mother, who is generally pain-free with occasional aches. We independently rated the interviews, observing number, frequency (with event or spontaneous; intermittent or constant) and intensity of somatic complaints, use of the term ―pain‖ (or others such as ―hurt‖, ―ache‖), and adaptation in daily life. Raters assessed the entirety of a participant‘s statements and remained mindful of the disparity in understandings of pain and use of terms, and other forms of pain expression such as resting informed by ethnographic literature and conversations with the CAG.

Use of pseudonyms

Pseudonyms have been assigned to participants after careful consideration. The pitfalls and risks of assigning pseudonyms are that names could be culturally inappropriate or have undue connotations. However, I feel that pseudonyms can dignify participants and their experiences by re-creating three-dimensional personas in the presentation of findings.15 As a result, generationally appropriate, non-sensational Somali names have been selected by consulting literature sources and with a volunteer in the lab Halima Arush (B.Sc. Psychology University of Toronto, Occupational Health and Safety, Ryerson University) who has greater familiarity with common Somali names and is a part of Somali community in Toronto. Within participants‘ speech, proper nouns have been removed and indicated with an [X].

15 Not everyone would agree that pseudonyms accomplish these goals; rather others maintain that pseudonyms erode these goals. I have deliberated upon many considerations with colleagues in diverse fields such as Community Development, Urban Planning, and Poverty Law who are interested in multiculturalism and addressing inequality in society. I also weighed the use of other labels, such as initials, before making my decision. Other approaches are possible, and I could be mistaken.

FINDINGS

Socio-demographic profiles (N = 14)

Table 1 shows the socio-demographic profiles of the participants. All participants stated that they had Pharaonic circumcision or infibulation (Type III) and were completely or partially de-infibulated for marriage (sexual intercourse) and/or childbirth. Women used terms like ―opened‖ or ―closed‖ to describe de/infibulation, while one woman described herself as ―repaired.‖ This was confirmed upon physical examination. Of thirty-seven total births in the group, eighteen births were delivered by C-section (48.6%). The modal age of FGC was seven years old; three women could not recall the precise ages (―9 or 10‖) so an average for the group was not obtained.

Pain conveyed in the interviews

The assessments described among different readers above granted a common sense of what degree, amount or nature of pain was conveyed in each interview. As an outcome of our grading system, five women were labeled ―zero/average‖, three women ―one/ache‖, two women ―two/hurt‖ and four women ―three/pain.‖ Nine women, therefore, were present on the pain-hurt- ache spectrum.

Age Years Birthplace Marital Children Type of Participant Age of in Education Employment in Somalia Status [ages] Delivery FGC Canada

16 years of 3 [12,18, Naima 46 Mogadishu 10 18 Home daycare Married C-section school 19]

3 [4, Jamila 41 Unknown 9 17 Unknown Unknown Unknown Vaginal 19,20]

Works at 9 or Deqa 36 Mogadishu 18 College (USA) community Divorced 1 [15] Vaginal 10 organization

Works inside 2 [10 Waris 27 Mogadishu 7 12 College Married C-section her home months, 3]

Daycare Khadija 39 Unknown 6 13 College Married 3 [6, 9, 11] C-section assistant

1 C- Educational 4 [3, 7, 10, Ayaan 41 Galcaio 10 19 University Married section, 3 instructor 13] vaginal

1 [8; three Beled step- Weyne, School Nasra 43 6 4 University Married children C-section moved to supervisor ages Mogadishu 11,14,15]

Some high Hakima 29 Giohar 13 2 Shopkeeper Married 2 (4, 5) Vaginal school

No formal Works inside 5 [10, 13, Amina 45 Rural area 12 10 education; Married Vaginal her home 14, 20, 25] some ESL

2 [6 - Amal 39 Baidoa 9 16 High school Administration Married C-section twins]

Mogadishu 6 [range (family 9 or Works inside Lul 38 21 High school Married 2.5-13 C-section from Beled 10 her home years] Weyne)

Teacher, but 3 Fardosa 45 Unknown 7 21 High school currently not Married Vaginal [Unknown] working

"in the Works inside 2 Maryam 46 6 18 High school Married Vaginal city" her home [unknown]

None; pregnant Not Fatima 21 Unknown 7 6 Unknown Unknown Unknown at time of Applicable interview time

Mean 38.3 13.9

Range 21 - 46 6 - 13. 2 - 21. 0 - 6

Table 1: Socio-demographic profiles of participants

QUALITATIVE THEMES

The qualitative interviews elicited vivid memories of the circumstances surrounding the experience of childhood circumcision, and busy lives as adult women in Canada with children, family, jobs, weekend relaxation, religious practice, and other activities. The phenomenon of reflecting on circumcision and daily life as an adult Somali woman immigrated to Canada is marked by the themes of natural-cultural passing through, negotiating normalcy, moments of reflection and transition, pain and feeling as a part of life, and feeling good in my body.

Themes contained subthemes which overlapped, while themes themselves could have been subthemes for others. Subthemes are separated to make reading more digestible; yet the subthemes and themes are knit in a woven tapestry of interrelated essences that describe the phenomenon. Themes are presented with first-hand material from participants. Discussion follows after, and places the themes in the context of existing literature. At times the findings and discussion are difficult and even inappropriate to separate; rather existing writing is needed to frame the findings and so is included. An illustration of how units of meaning channeled into themes is given in Figure 7.

Figure 7: Units of meaning from participants’ interviews converging and forming themes (subthemes below in italics). Coloured lines unite related units of meaning, organizing them into converging points. Converging points meet with one another based on similarity and form themes. Natural -cultural passing through Subthemes:  Everyone else had it: social pressure, comparison and belonging  Just was: No choice  Never a good time: contention around timing a daughter’s circumcision

Participants described the ubiquity of FGC, as a known and routine tradition that can be described as natural-cultural. The ritual was discussed as widespread, offering communal belonging among other perceived benefits. Natural-cultural can refer to the fact that FGC was inevitable, perceived as a natural passage in life owing to long-term cultural tradition. As a result, participants‘ speech recalling the event and the surrounding reality took the shape of

55 resigned16 and factual, elaborating on how it ―just was.‖ Given this, even though most women described being eager for FGC and wanting it, the notion of ―choice‖ is blurry. Despite the givenness, there was also a lot of contestation around timing when the ritual took place – often in the name of ensuring daughters‘ health – that also suggests struggling with the tradition that is so natural.

Everyone else had it: social pressure, comparison and belonging

As young girls, the participants were aware of peers, friends and relatives going to have their circumcisions. The ubiquity gave it a naturalistic status for many participants. In reference to FGC being something that everyone has, Khadija rhetorically exclaimed: ―Can you complain why I‘m having a baby? Why the man is not having a baby? You can‘t say that, right? So back home it was like that.‖ In addition to an awareness of others going through the ritual, participants spoke of social-communal setting of having FGC together with sisters, cousins, peers, friends, brothers even, accompanied by mothers (for the majority of participants) and often aunts or grandmothers. Naima described it as a ―group circumcision.‖ The majority of participants eagerly looked forward to an experience that they were aware all girls had, which other kids spoke about frequently – particularly at school – and which caused feelings of immense social pressure and also reward.

An awareness of the necessity of having FGC was also accompanied by an awareness of the shame of not having it: Nasra stated that all her friends were doing it, and her own brother teased her for not having it yet. Deqa knew of a woman in her community who was not circumcised and was mocked. Amal even said that girls will lie that they have it already when they have not. Fatima extended the potential sense of embarrassment to her parents, noting that parents would be ashamed if their daughter did not get circumcised. Fatima‘s mother told her that she would be fine enduring the cutting, that ―we‖ all went through it and she would not be the first one. The negative attitudes towards being uncircumcised, both from adults and from children, made the participants feel they needed FGC. ―Need‖ and ―my turn‖ were key words in how the participants viewed FGC and how they beseeched their mothers. Ayaan was aware of older girls who had been circumcised and knew it would be her ―turn.‖ In fact, a distinct trope

16 Resigned in the sense of accepting, and sometimes though not always negatively tinted.

56 was apparent among the participants‘ stories, a sense as girls that everyone but them already had FGC, when of course, it is impossible for everyone to think that. Maryam was a notable exception, describing how she was the first among her peers to be circumcised and was an example for other girls.

Just was: No choice

The naturalistic status described by Khadija earlier illustrates the complexity around choice; Ayaan and Naima made it clear that there was practically no decision made because it was so natural: Ayaan: But like everybody had to be circumcised. There wasn‘t a major decision to be made or anything. It‘s just all like- Interviewer: Of course, of course. So it all just seemed very natural (overlapping) Ayaan: Yes (overlapping). ‗So-and-so, you know the neighbors, they‘re in my age and they were circumcised and how come I didn‘t get my turn yet? (laughing) Interviewer: Yeah Ayaan: Everybody had to have that, yeah.

Simultaneously, Ayaan‘s reflection as a adult has lead her to dismay about the lack of reasoning involving in the ―unthinking‖, doxic practice.17 For Naima, accepting the culture (including FGC) was a matter of pride, and this dampened any possibility of choice: ―Yeah, we don‘t have choice. We have our country. Our culture, everything we have to accept it.‖

Never a good time: contention around timing a daughter’s circumcision

Despite the naturalness, mothers (mostly in charge of arranging FGC) contended with their eager daughters over when to have them circumcised. When participants asked their mothers to have it done, mothers balked at whether they were old enough, whether they weighed enough, in other words, whether they were healthy enough. Often contestation occurred between mothers and male relatives (mostly fathers, but in one case, an uncle), around doing FGC at all. In fact, FGC was often reported as being done when fathers were absent; this might indicate a sense around the potential dangers of circumcision, contention between parents, or the fact that it is a mother‘s duty.

17 Referring to what is taken for granted in society, fundamental values (Johansen, 2004).

Negotiating normalcy Subthemes:  The only body I’ve ever known  I am like everyone else, am I?  Women’s lives  Silences

The only body I’ve ever known

An important mental activity comprising participants‘ responses was contemplation of what is normal; the interviews were rife with themes of normalcy and attempts to situate themselves (ab/normally) among various reference groups. Often participants questioned how they could describe what their bodies were like; after all, these are the only bodies each has ever known. Deqa mused: Deqa: (...) It‘s hard, uh, for me, uh, just to sit here and tell you, uh that‘s how my body feels, that‘s how my body feels....Because, I, this is what I know. Interviewer: You don‘t know anything else Deqa: I don‘t know any better, right?

A few women wondered what there was to discuss, not just from the perspectives of punctuating that ―FGC happened‖ or the quandary of knowing how one‘s body feels without having known another body, but also with respect to knowing the results of a practice from childhood when a so-called prior body was barely experienced for a few years.

I am like everyone else, am I?

As part of what I call ―negotiating normalcy‖, when contemplating both their circumcision stories and their adult sensory lives, participants situated themselves among their peers. From a biocultural perspective of sensation, ―social learning and comparison processes within ethnocultural group situations‖ has an impact on cognitive control of and descending inhibition of pain (Bates, 1987). Reference points included other circumcised Somali women, but also similarities with all women circumcised or not. The very commonality of knowing a singular body experience, paradoxically, served as a sort of reassurance to individuals: everyone knows one body.

The word ―normal‖ itself arose repeatedly to describe feelings in many contexts: sexuality, daily comfort/pain, lifecycle events. Sentences beginning with variants of ―you

58 normally feel‖ also surfaced frequently, using the second-person to illustrate normal feeling in these contexts with a sense of commonality (all women or all adult women with FGC), and as a part of illustrating the ubiquity of the practice of FGC (all Somali girls when I was growing up, and you too if you had been there). From the perspective of analyzing discourse, or what talk is doing (Wilkinson, 2000), describing others‘ circumcision experiences might allow participants to be reassured about the normalcy of their own body experiences. The second-person ―you‖ and the tendency to ―normal‖ descriptions can also be seen as a discursive strategy in the context of being placed in focus in a conversation, moreover with an interviewer who has not experienced circumcision and who comes from a culture than interrogates it. It might allow women to both identify with and distance from FGC.

Naima described how her circumcision took place in a clinic where a lot of people used to go; furthermore, she pointed out that other people went through a lot of ―procedures‖ (while she did not). Deqa divided out the experiences of women from small towns or rural areas and those in cities as totally different from one another. Being from the city, Deqa had a ―lighter‖ experience, with doctors and nurses in a ―normal‖ hospital: Deqa: We-we been taken to a normal hospital to get it done. Interviewer: Yeah Deqa: Yeah. Because other places like, I-I-I know most of my friends has a different story than mine.

Deqa went on to discuss her knowledge of friends who had it done by midwifes who, in her view, were unlicensed, unknowledgeable and unreasonably powerful. Nasra‘s and Fatima‘s mothers described how the daughters‘ experiences were not as bad as their own. Ayaan knew other people who were circumcised unanesthetized, and that her own circumcision was not as bad because she received anesthetic. For Ayaan an important reference point was her sister: Ayaan: … her [the sister‘s] experience is way more difficult than mine. I was circumcised in a…doctor, anesthesia. She didn‘t had all that. Interviewer: Okay, is she older or younger? Ayaan: She‘s younger. Interviewer: She‘s younger than you. Ayaan: But because I lived with my grandma and in a big city, I had that facility. Interviewer: Ohhhh, okay. Ayaan: When I was seven years old, I moved from my family to my extended family. So she didn‘t have that.

Women’s lives

A significant part of participant‘s discourse of situating themselves, was the oft articulated belief in the nature of women‘s lives as busy, tiring, marked by pains and by lifecycle events, which themselves are often painful. Participants described busy lives, with most women waking up early to pray before mobilizing children to start their days too. Busy-ness and tiredness were accepted as a normal part of all women‘s lives; women described feeling how every woman feels. Fardosa and Waris described being constantly tired. Waris noted that all women are constantly tired. Khadija described being tired at night; yet according to Khadija, everybody is tired at night, especially women who work both inside and outside the home. In this way, participants confidently situated their feelings within the normal lives of women.

When contemplating normal experience, women also wondered if FGC affected their personal ―turns‖ at events that women experience. Participants expressed that lifecycle events are particularly abundant and transitional for women and are influential shapers of women‘s lived bodies. Their speech indicated that lifecycle events can even re-double, echo or reinvent one another. They can be a discrete event, or include a recovery and residual period. In the interviews, noted (bodily) events and aftermaths included circumcision, week(s) of recovery from circumcision, marriage, first intercourse (including deinfibulation) and the weeks after (regularizing intercourse), and the events of pregnancy and delivery, including post-natal care in hospital. The recovery period after circumcision included discussion of resting, pain while urinating, strategies to prevent infection, and visits from family. Events were sliced in different ways; one participant said ―marriage‖ to include intercourse and childbirth, while another described them separately. A saying in Somalia notes the three pains or sorrows of women‘s lives (Abdalla, 2006). Interestingly, within these interviews Fardosa noted that women endure pain three times, through circumcision, marriage (deinfibulation/intercourse), and childbirth; Amal spoke of the three problems or pains related to FGC: the operation, one‘s period due to a small hole (and drainage difficulty), and marriage.

Khadija was unsure whether her difficult menstrual pain was normal or whether it was heightened because of FGC; later she stated that women with FGC have an extra job. As mentioned above, Deqa was unsure of how her body feels because it is her singular, given body. Her speech continued, noting that women with and without circumcision should compare in order to situate themselves:

Deqa: I don‘t know any better, right? Interviewer: Of course (overlapping) Deqa: So, I might keep on telling you I- I feel better, like, I‘m okay. But I won‘t know- until maybe, uh, they put it into a-a group of women who‘s been circumcised, and a group of women who‘s never been circumcised together, and they share Interviewer: Experiences (overlapping) Deqa: The-the-the feelings that you have, or how you, uh, how you feel your body. Otherwise I wouldn‘t know because this is what I know. And I- I might-I might say I‘m fine, right? Without knowing. (a few lines omitted on the topic of organizing a group dialogue) Interviewer: Yeah. But I think it‘s a really neat suggestion to potentially have women come together and talk about their experiences Deqa: I-I-I thought so, because, so, so we know (laughs). Interviewer: Yeah Deqa: You know, how other women feels.

Deqa exemplifies elegantly an aspect of Bates‘ (1987) biocultural model of pain; Deqa‘s contemplations illustrate that how one feels or knowing how one feelings depends on knowing how others feel and how one is supposed to feel, namely, what normal feeling is. Somehow one‘s own sensory perception is wrapped up in this social calculator.

Sexuality was a topic – an array of moments – for contemplating normalcy.18 Deqa felt that Somali women (possibly just of her generation) are reluctant to talk about sexuality. Where she was raised, girls were ―in the shell of being a girl,‖ conditioned not to discuss sexual pleasure. The CAG also felt women of that generation were discouraged from talking about sexuality and sexual pleasure. Deqa insisted that she still has ―feeling‖, whereas other circumcised women have no feeling: Deqa: I don‘t (….) um, my body feels fine. I know (..) uh, it really didn‘t affect me, in a way where (.) I have (..) no feelings. Interviewer: Okay Deqa: Like I said, the same people told me they have no feelings. Interviewer: MmmHmm Deqa: So… Interviewer: But that‘s not your experience? Deqa: No.

Khadija described moving to Canada, getting married and having normal sexual feelings:

18 Further discussion on sexuality and normalcy is presented later under the themes of moments of reflection and pain and feeling as a part of life. There, the reoccurring and idiomatic use of ―feeling‖, as well as lifecycle events are discussed further.

Khadija: And then we started a life over here. And get married. So, the problem I get for, what happened to my when I was a child is? Interviewer: Mmhmm Khadija: For, (.) when I get married, (..) for sexuality you feels, normal, anyway. Interviewer: Mmhmm Khadija: Everyone has a different feeling, right? Interviewer: Mmhmm Khadija: But as sexual-sexuality is not something that you don‘t feel anything. Interviewer: Right. Khadija: You feel normal. Aaaaand yyyyyoou feel everything Interviewer: Mmhmm Khadija: thaaat, (.) when you, when you have sexuality with somebody that you will feel anyway.

Khadija also talked about the difficulty of first having sex, the pain of opening the infibulation. After a month, the pain subsided, and she felt (and, Khadija said, others in the same situation would feel) normal. ―Normal‖ to Khadija, in terms of women‘s lives and lifecycle, implies situated somewhere in the diversity of experiences and in the normal range of how biology fluctuates: Khadija: So. And the feeling how I tell you, you will feel. Everyone will have a different feeling. And how you know even for… biology. Like when you pregnant, you see? Your body will change. Interviewer: MmmHmm Khadija: So same thing when you have (...) when you have, you know (..), partner. You will feel something. Like the other ladies feel. Interviewer: MmmHmm Khadija: Yeah, it is normal.

Waris also said that she has normal sexual feelings; she is tired and wants to rest at night, which is normal for women in particular. Fardosa described seeing a doctor for sexual pain who had never seen a circumcised vulva. In considering her ongoing experience with sexual pain and her encounter with a doctor who made her feel unusual, Fardosa normalized her experience (italics added for emphasis): Interviewer: So, after, uh, you went to the doctor, when you were married, ah, to be opened, (..) um, did that change the sex at all that you had with your husband? Fardosa: You know why? My case it was completely different. Interviewer: Uh huh Fardosa: The reason it is, (..) my husband he doesn‘t have a time, he‘s only one month (..) from leaving Interviewer: (overlapping) Ya, ohhhhh, I see, ya Fardosa: Secondly, I have a pain already every time he come to me, I have a pain.

I can‘t cry, cry, and always I use the toilet

Fardosa understands that her situation is ―different‖, that her husband was leaving soon to go abroad and there were time constraints on sexual intercourse after they got married. It is precisely this difference or uniqueness that makes her feel that her pain is normal, given her situation. Fardosa describes normalcy in difference/differentiation. Finally, for Maryam, Canadian women are lucky they did not go through circumcision; Fatima felt similarly; to her it is clear that uncircumcised women feel differently: Fatima: Annd, I don‘t know, I don‘t know how another girl would feel who-who wasn‘t circumcised, but (..) I think, or as I read in sometimes, the- it‘s a different feeling when you‘re having sex Interviewer: MmmHmm Fatima: when you‘re circumcised, or when you‘re not Interviewer: Mmmm Fatima: so it‘s two different ways of feeling…

Silences

A silence dwelled around sharing experiences of the ritual event, and sometimes experience with infibulation/FGC throughout life, as in lifecycle events. As mentioned, girls are aware of FGC existing so it is factual in the atmosphere, somehow communicated: Deqa: I knew what was happening, I knew. Like, you‘re aware, as um..(tisk). Girls know really at early age that there is something called circumcision Interviewer: MmmHmm Deqa: So it‘s something you loo- wait for. Interviewer: MmmHmm Deqa: To come. Interviewer: Okay. Deqa: So you know someday you gonna have it (laughs) Interviewer: And do you know, do you know, is it talked to you about by your mother, or your grandmother, or your friends? Deqa: It‘s everybody! (overlapping) Interviewer: Everybody‘s just talking (overlapping) Deqa: It‘s talk- everybody talks about it. Even little girls when we‘re playing hide and seek or we‘re playing alone and someone said, Oh you know such and such, she got circumcised.‘ And you go ‗Really?!‘ ‗Yeah!‘ And someone said ‗I can‘t wait until I get mine!‘ (laughs)

So while the ritual is known and spoken about as a factual event, at the same time, a noticeable silence came through the interviews around speaking and sharing the childhood memory and living with FGC the embodied fact. Five women said that they never shared their stories before.

Nasra, Khadija, and Lul felt that no one talked about the pain of FGC before they had it done; at the same time, Ayaan did know from older girls that it would hurt and involve heavy bleeding. Nasra said that she only talks about circumcision with her doctor. Deqa comfortably talks about circumcision with her close friends, but felt she was unprepared for her experiences with the wedding night and birth. Regarding the way nurses cut episiotomies during her birth, Deqa explains: Interviewer: And was there any discussion about that when it was happening? Were you able to tell her that you were unhappy? Deqa: No because I didn‘t know, I didn‘t know any better right? I didn‘t know. Like, I wh- I wish I would have had the, experience I have now. Interviewer: MmmHmm Deqa: Um…Because, if I would‘ve- my older sister, I have a older sister who already give birth. Um, I didn‘t ask her because I didn‘t thought it was something, need to be talked about. Interviewer: No-I-yeah, I think it‘s things- something that women often don‘t talk about (overlapping) Deqa: Yeah, exactly. And she never tell me anything about it. But after I tell her I said, that- what happened to me, she says ‗that never happened to me‘.

Silence was also uneasy alongside rumours and mythology about what might happen if you do not remove vaginal tissue, denigration of women who do not have FGC, and stories overheard about the wedding night. Waris never talked about her FGC experience and struggled to find the English and even Somali language to capture it. It happened to everybody, she explained, so what is there to talk about? On the other hand, Waris was also frustrated that no one spoke to her about what would happen on the wedding night. She had tried to ask questions and no one was receptive. Waris enjoyed talking to the interviewer; when asked if she would return for the quantitative interview, she asked if she could come back just to talk. Fatima had never spoken her story before either, and never had anyone ask her how she feels about it. She was likely referring to how she feels about FGC being practiced; she mentioned how in Somalia it is embarrassing to talk about, that one cannot say that it is bad, and that her mother would silence her. Another reason for silence, therefore, might be caution around expressions that resemble disagreement with the strongly root tradition that has what Johansen (2007) calls a ―doxic character‖ (p.251).

Finally, silence dwelled in the language used to describe genitals/circumcision; Amal and Khadija referred to their infibulations as ―that thing‖, or ―that thing we have.‖ These expressions rang similar to encapsulations of circumcision: ―what‘s done is done,‖ ―just is‖, ―it is what it is.‖

Moments of reflection and transition Subthemes:  Reflection in Canada: The changing communal body and gaze  FGC and lifecycle: When did circumcision affect me?

Reflection contains a series of ongoing emotional and cognitive meditations that can be brought on by shifts in place, time, and meaning (on the heels of place and time) simultaneously; reflection has profound effects on the experience of one‘s body. Immigration brings embodied reflection generally; more specifically, migration for our participants has meant movement to an environment where female circumcision is seen as abusive, patriarchal, immoral and horrifying. In Canada, it is also illegal.19 Naima reported being shocked when she moved to Canada, upon learning that it was seen as bad. This new attention and surveillance of Somali women‘s infibulated (or once infibulated) bodies can be manifested in many ways and can exert effects in many ways. In many cases reflection was happening for the first time outside of Somalia, or in greater degree. The interviews demonstrated that women have reflected abundantly (a mixture of willful and imposed) about their bodies, as a sort of ―feel-thinking‖ (Johansen, 2002). Certain moments anchor this reflection; many lifecycle and transitional events, including moving to the anti-FGC Canadian context, afforded moments of reflection and alterations in awareness. It is interesting to consider how changes in attention and awareness would affect women‘s body schemas and sensation.

Reflection in Canada: The changing communal body and gaze

One form of rather intrusive surveillance or imposed gaze occurred (and occurs) for the participants in encounters with health professionals. Deqa‘s bad episiotomy experience was part of the reason for her expressing that doctors and nurses in Canada treat women with FGC differently. Waris felt that she was not given a choice in her birth experience but was led to a C-

19 The Department of Justice first considered amending the Criminal Code (CC) in 1991 to make FGC in Canada a criminal offense. It was thought to be covered under section 268 Aggravated Assault and section.267 Assault Causing Bodily Harm. The CC was amended in 1993 (chapter 45 section 3) to add the offense of removing a child outside of Canada to commit an act considered aggravated assault or assault causing bodily harm. In 1997, FGC was defined explicitly in the CC.

65 section without her proper consultation; she felt that women without circumcision have more choice. Fardosa was the first circumcised woman seen by a new gynecologist, who then asked her a long series of questions. He was shocked and asked her questions for ―half an hour‖ about how and why her parents did this to her.

Negative clinical experiences were sometimes tied to a lack of familiarity with FGC. The doctors Nasra visited in both India and in Canada were unfamiliar with female circumcision. Being unfamiliar with FGC does not lead inevitably to negative interactions between provider and patient; some participants had very positive experiences with health providers. Khadija had an extremely supportive nurse that she still remembers eleven years after her son was born. She recalls with humour how while resting in the ward after delivery, she would hear a baby crying and begin to cry herself; the nurse would come immediately and reassure Khadija that it was not her baby crying, that her tears were normal, and together they would laugh. For Deqa, despite her bad experience with episiotomy, another gynaecologist she visited was very compassionate with her: Deqa: And then, uhh, and she told me, like she realized I was circumcised and she was looking at me and said ‗Oh you‘re…‘ and I said ‗yes‘. And then she was, uh, giving me, um, advices about what to do.

Nasra saw a doctor for sexual pain when she first got married; the doctor was unfamiliar with female circumcision at first, but took the responsibility to research it for his patient: Nasra: Then, uh, we came Canada… I went to the doctor and I showed them. I say, ‗I have that problem.‘ And the doctor say, he so.. shocked, he say, ‗What is this?‘ and I say- he don‘t know that one. And he say, ‗I have to check‘ ‗I have to find out what is this.‘ And I- I don‘t know even English what they call Interviewer: Okay Nasra: But I say, ‗This is traditional. We have to, girl when they are that age, we have to cut it‘ ‗We have to do that, we have to stitch again, blah blah‘ Interviewer: So the doctor was not familiar with circumcision Nasra: Uh, yeah, he‘s not familiar (overlapping). And he say, ‗I have to find out‘ Interviewer: Okay Nasra: ‗You have to make other appointment.‘ He make appointment. He - Interviewer: And how old were you at this time? (overlapping) Do you remember? Nasra: When I came here, I was… twenty-two or something like that Interviewer: Twenty-two? Okay Nasra: And when I- the doctor say, ‗Oh-,‘ next day when I went to see, ‗- oh, I got it, ‗I find out, yeah. I see, yeah, lot of country, like Sudan, Somalia, Egypt,

they did that.‘ And I say, ‗I don‘t know. I only I know Somalia, I don‘t know‘ And he say, ‗I find out. That is a something I wanted to know‘

Nasra‘s doctor was able to proceed more knowledgably and sensitively with questions to assess her. On the other hand, in performing surgery for her to be opened, the doctor invited medical students who were also new to female circumcision. This was uncomfortable for Nasra: Nasra: And then he say, ‗If you mind‘ because some student, four or five kid- uhh, students- teach- uh, students. They wanted to see because they don‘t know either. But the doctor say the..the girl coming to see circumcision. Also she wanted to..to cut. Then some students and some doctors they came also. Interviewer: And how did you feel about so many people being there? Nasra: Maybe two-two other ask me (overlapping), the-the doctor ask me, ‗Don‘t worry about everybody. They want information. If you mind, they want to see how is- how you c- feel‘ Interviewer: Okay Nasra: I say, ‗I don‘t want to. All this people coming to see me.‘ And he say, ‗No, they are all doctors‘ Interviewer: Okay Nasra: But they- they didn‘t know even this things, they wanted to know Interviewer: Okay Nasra: Because all- some- ehh- uhh students they becoming gynecologists and they wanted to know. And I say, ‗Okay.‘ And then they, uhh- then they- he cut it. If- I don‘t know what they do because they put me- I was sleep Interviewer: Ohhh (overlapping). Oh, you were asleep while it happened. Nasra: I- Yeah, because, yeah I was asleep. What happened, he say ‗How much you want?‘ He-he measure me, he say, ‗Iiiii- is it that much? You want it that much? Or you want that much?‘ Because- Interviewer: Ohhh, so he gave you the choice. That‘s how- Nasra: [coughs] Yeah, I-I say the choice. I wi- I wi- I don‘t- ‗I want that much,‘ I say. Say, ‗Okay.‘ And he cut it. Then, I‘m bleeding lot when I come out. When I wake up.

There is clearly a difficult balance for health providers when encountering an unfamiliar reality of female circumcision; on the one hand they use questions and probing to gain familiarity, potentially recruiting other practitioners into a learning opportunity. Yet on the other hand, such practices can be dehumanizing and erode the comfort they are supposed to ensure. For Ayaan, the unfamiliarity of her gynecologist was not bothersome per se, yet illustrates the irritating necessity of having to give an introduction as if her body needs a caveat: Ayaan: When I had my first baby, uh, it was a wonderful experience as a mother. But when I had to go and see a doctor, and I, and I had to ask, before my family doctor refer me, I needed a female doctor who is familiar about circumcision Interviewer: Okay

Ayaan: Because I just didn‘t want to go into somebody who‘ve never seen this or never heard this and have that shock. So the doctor, [X], my family, uh, obstetrician was her lady who, who knew about it. So I told her, ‗I am circumcised‘ (laughing) ‗As a child, I was circumcised‘. Interviewer: Yeah Ayaan: So she knew and it- you know she examined me and it was, it was okay. But then I had to make an introduction and I had to tell her...In, another, another time when I saw fema- fffamily doctor, that was a different, when I moved to, when I moved. And she said, ‗What happened to you?‘ and I said ‗Oh, I forgot to tell you. I was circumcised‘ Interviewer: Oookay (overlapping). So she was surprised Ayaan: Yes. So she was like, ‗What happened to you?‘ and you know (…) Y-you have to always make an introduction and keep the people‘s head up, that‘s one thing.

In addition to these clinical encounters that heightened and transformed women‘s awareness of their bodies, participants‘ sensibilities about the rationale for FGC was transformed in the context of a different socio-cultural milieu. For some women they had greater access to Islamic teachings; for all women, other communities of Muslims and Islamic practice became more readily available for comparison.

Individuals have different valuations and definitions of culture versus religion; for Lul in her personal learning curve, she came to know that FGC is bad and not actually a part of culture as people believe it to be. In other words, culture was expressed as a valuable and authoritative source whereas for Amal, Fatima and Waris (who did research upon coming to Canada), culture crumbles against the more worthy cause of religion. These three women had initially thought that FGC was tied to religion, but later came to an understanding that the practice is cultural. In other contexts for the group, culture was seen as something that one has to accept and of which one can be proud. Culture and religion are extremely hard to disentangle. When religion and culture were pitted in the interviews, religion was seen as non-optional, as a source of obligations that one must do, whereas culture was seen as a source of practices tangential to religion or symbolizing peoplehood generally. For Amal, realizing that not all Muslims had ―this thing‖ led her to understand that FGC is not religiously mandatory. For Fardosa, Fatima, and Ayaan, religious or cultural practices require education and thoughtful weighing and deliberation. These women felt that uneducated culture (Ayaan), and misconceptions about religion (Fatima) and healthy bodies (Fardosa) lead people to practice FGC, which these women

68 now oppose. Fardosa described how people think that FGC is related to purity; they do not know, said Fardosa, that human bodies are ―already pure.‖

FGC and lifecycle: When did circumcision affect me?

Finally, lifecycle events afforded participants moments of reflection on their bodies; they were focal points of discussion on pain and bodily sensation and fluctuations in these. Lifecycle events consist of biological changes, life transitions, and the resounding of past events echoed in ongoing events. Nasra felt that since she immigrated to Canada, her body became heavier, slower, and more held back. Not surprisingly, several women expressed a lessening of menstrual pain with marriage, when the vaginal introitus is enlarged. Life events also offered women reflection on their senses of when FGC affected them, if at all. For most women, the question of when FGC affected them was unavoidable, a question with which to wrestle and contend. Ayaan said that her circumcision ―hit‖ her when she got married and had kids, and continually ‗hits her‘ as she visits doctors: Ayaan: I know circumcision was very hard when I get married and when I was having my children. That‘s..that‘s when it hit me, like, ‗Oh, I was circumcised‘ (laughs) Interviewer: Yeah? Ayaan: Yeah. We did this why? Interviewer: And those were difficult experiences? Ayaan: And those were- (overlapping), yeah that‘s very difficult experience.

Khadija regretted FGC as soon as she experienced pain during urination during her recovery, even though she received ice cream and got to play games: Interviewer: And did you still feel happy? You were so excited before the circumcision, were you feeling happy and excited after the circumcision? Khadija: W-when I, when I go pee.. I used to cry and I say ‗why I did have this?‘ And mommy [her mother said] ‗you the one who choose!‘ [then Khadija said] ‗Why you don‘t a stop me because I was a kid!?‘ See, so it is. But,…w-w-what- do-you, you know, it is something that everybody has!

Deqa and Lul also said that they were opposed to or dissatisfied immediately after they were circumcised, even as both also begged their mothers to have it. Deqa wondered about the logic and felt it to be irrational. Despite almost instant regret, Deqa maintains that FGC only affected her at birth, and the effects were certainly exaggerated by the poor care given by the health

69 providers she saw. Naima emphasized that she did not feel differently after her circumcision, though she did not specify in what regard. For Amina, the experience of FGC echoed later during childbirth and being cut in the same region. Both Maryam and Amina felt that the first cutting and associated pain brings subsequent pains, especially in other instances of cutting like episiotomy.

Women‘s narratives indicated that life events changed health issues broadly; for several women (Nasra, Amal, Lul and Waris) getting married and having a baby helped them with period pain. Deinfibulation, however accomplished, would have improved expulsion of menstrual blood. Nasra had bad infections until her son was born. Her leg pain, she noted, also improved after her son was born. For a few women, however, having a baby also brought sexual pain that lasted. Symptoms linked in memory to events, and furthermore, talk about symptoms unfolded gradually. As her narration progressed, Nasra gradually called to the foreground her sense of bodily symptoms. She gradually drew her attention to the pain of her period (experiencing pain in her stomach, around her waist, in her right leg and back), later adding detail about general headaches, muscles ache, and nausea.

Pain and feeling as a part of life

Subthemes:  “When pain is common”: Pain and identity  “Feeling”

The conversations contained a considerable amount of talk on pain, although not universally: notably, half of the women said that they were not experiencing any pain. Notwithstanding the fact that researcher interpretation enacts a decision on which women and how many seem pained (see Discussion), this minority is important to note. Other women described full-body achiness, sexual pain, back and neck pain. Figure 8 summarizes the bodily talk of the interviews. The participants described busy lives with work and family concerns that induce stress and fatigue, possible aggravators of muscle soreness like back pain. Participants get up early in the morning – many around five a.m. and many to pray – and mobilize their kids and families to start their days. They have busy jobs, some classes, and they take their kids to various activities. Themes of tiredness and the necessity of ―resting‖ emerged repeatedly; again, participants usually considered this inherent to life and to women‘s lives in particular.

Almost half (six) of participants explicitly attributed some pain in life to being circumcised, including Nasra, Amal, Maryam, Amina, Fardosa and Jamila. A few women attributed current pain to being circumcised. Jamila described being in pain since her circumcision. A stitch was left inside her infibulation and she sought help from doctors in Somalia and Canada. In Canada, a cyst was found around her clitoris under the infibulation scar. She describes having pulling pain not just around her external genitalia but also widespread pain around her pelvis, stomach and back. She had surgery to be deinfibulated and manage the cyst but still feels pain today. Nasra said that FGC causes pain in life. Although she asked her mom to be circumcised (and her mother felt she was still too young and skinny), her experience of being held down, pushed and cut by strong men still feels heavy in her chest and anchors some of her current life pain. She experiences some sexual pain, bad period pain impacting her stomach, the circumference of her waist, right leg and back, headaches and general muscle aches.20 Fardosa and Maryam experience some discomfort since their circumcisions. Khadija asserted that circumcision never affected her, but also mentioned that women will regret it as soon as they marry (and encounter the pain of intercourse).

20 Nasra was also involved in a rickshaw accident in India where she fell on her coccyx, although she also had pain prior to the accident; this incident was gathered in her medical history, not in the interview.

Figure 8: Bodily talk that emerged during the interviews. Text size represents the amount of attention each topic received, so that the attention given is both absolutely and relatively (topics when compared with one another) comprehendible.

“When pain is common”: Pain and identity In contrast with Fardosa and Maryam, Khadija stated: ―It is not something that, I always remember that stop my life. It never happened. It never been that way.‖ Many participants dismissed any notion of pain in their lives because it is not something that bothers their daily activity; some said that they are too busy to think of pain. Participants all spoke about their busy days and roles as mothers and employees, underscoring how they could not be in pain, that pain was not an option. ―If I feel more pain then I go to a doctor but usually I don‘t do anything, I just do my daily activities‖ Jamila said. Ayaan replied similarly:

Interviewer: Do you find that there‘s any point in your day um, or in the week where you, where you don‘t feel good? Where either your body doesn‘t feel good or you‘re just not feeling well? Ayaan: Noo..unless I‘m sick with a cold or something and I don‘t have a lot of things to do, then it‘s, sometimes you know when you have like I tell you today, I had a guests that came from [X]? And they leaving twelve o‘clock and I had to come here, I did… So, and my husband had to go somewhere so I just say him hi and bye, basically. (laughing) Interviewer: Aww!

Ayaan: I had to go, buy milk, come, like it‘s a rush like that but there is no day that I, I feel, you know, little bit down Interviewer: Yeah Ayaan: And things like that. I don‘t think I have the time for that. (laughing). Maybe if I didn‘t had a lot to do. Ayaan related bodily discomfort to sickness, and moreover, to the idea of mobility, engagement in activity, and busy-ness, activity continued over time. Since Ayaan is busy with ―a lot of things to do‖, she does not feel bad in her body. Later in the conversation, Ayaan repeats how her busy life precludes her from stopping to think of pain:

Interviewer: Um, so, there‘s, there‘s, there‘s nothing you find particularly notable then about, about how your body feels on an everyday basis. Ayaan: No.., no.., yeah. My body feels fine. I-I was fortunate that I was healthy and so my body said no, also I, I guess in my upbringing I don‘t have that mentality, you know, I have to do something, I have to do something. So.., I don‘t pay too much attention how, what I want, it‘s what needs to be done.

Deqa described some sexual pain and neck and back pain from sitting and working long hours. Yet for Deqa the pains or symptoms she experiences do not spill beyond the activities that provoke them, because she is always busy with the task at hand. Her neck and back aches arise from tension at work but dissolve when she can relax, especially on the weekend. Her sexual pain is not on her mind when she is not ―in the act‖ (of sex). Waris described feeling fine on an everyday basis; being busy, she has no time to think about how she feels. Maryam said she does not feel much pain now, but has bad days, which are those that interfere with her life. Finally, Khadija described the necessity of ―doing‖ in life; she is busy with work to get done and does not contemplate how her body is feeling or adapt accordingly: Interviewer: Um, and then is there any time that you feel like, maybe when you‘re at the daycare, when you‘re just doing your daily activities, that you feel like you have to adapt what you‘re doing because of how your body feels? Is there ever anything that you‘re like ‗oh I can‘t do that because of how my body‘s feeling right now‘. Khadija :What I do, it is not sss-it is your life. Like, when you‘re working, it is, you have to do it; otherwise, who‘s gonna pay your bills? Interviewer: MmmHmm Khadija: It‘s something you have to do it. So it is, a lot of time that I feel okay. It‘s good to go bed, or rest, or do something else. Interviewer: MmmHmm Khadija: But… but it‘s okay. Interviewer: It‘s okay

Khadija: Yeah, but it‘s okay. I-it‘s, it is something that you have to do. You-ha-e- every morning you have get up, if you- sometimes you want to sleep longer. Interviewer: Yeah Khadija: But you can‘t. Because of the light. You have to wake up. And do something. The group of participants showed a remarkable amount of resilience and a strong, dedicated work ethic. Many respondents negated the possibility of having pain by saying that they are not sick. Ayaan said that she does not feel unwell unless she is ill. As quoted above, to the query of whether there are moments when her body does not feel good she responded: ―No…unless I‘m sick with a cold or something and I don‘t have a lot of things to do.‖ Similarly, Amina said that if she is not sick, she is fine. Hakima was more explicit about pain: she is not sick, and therefore not in pain. Hakima said that she feels normal, how she should feel. In speaking about the weeks after her circumcision, Khadija pointed out that ―you are sick‖ because you have just undergone surgery: Khadija: You will be, you will be having the pain for one week. Interviewer: For one week? Khadija: For one week. Interviewer: Okay (overlapping). And did you stay home for that one week? Khadija: Yeah. I used to stay home and mommy used to cook any the soup on the stove something. Ice cream, whatever you like. They, they will treat you like you, you know? Interviewer: Mmhmm Khadija: …You are so sick. Anyway, and you‘re sick too! Because you have that done, like you have operation. Anyway…

The recovery period is not just a moment of pain and healing but also (potentially celebration, pride, and) immobility, where girls recovering often have their legs tied together to ensure healing. They lie down and rest. Sickness, pain and immobility may have arisen together in Khadija‘s thinking. As was noted, when Fardosa first got married she experienced sexual pain that was prohibitive for her. Sickness was part of the way she expressed her difficulty to her husband when he approached her about sexual intercourse; it also became one of her associations with circumcision, along with pain: Fardosa: … I have a pain already every time he come to me, I have a pain. I can‘t cry, cry, and always I use the toilet...he doesn‘t enjoy, I don‘t enjoy (laughs) Interviewer: Yeah, yeah Fardosa: It‘s not a love. Interviewer: Yeah.

Fardosa: Hated. ‗Please! Tonight I can‘t, I‘m sick tonight‘.

In analyzing the interviews, attention was paid to how the term ―pain‖ was utilized or the idea of ―pain‖ managed. As mentioned previously, some women talked about pain in daily life – using the term ―pain‖ in ways conventional by dominant North American standards – to express either localized or whole-body aches on either an ongoing or provoked, activity-dependent basis. Yet more often than not, the term ―pain‖ was wielded in association with life events like the FGC operation and recovery, menstruation, first (or current) intercourse and childbirth. It was used less preferentially with reference to daily life. One possibility is that these life events are acutely painful while symptoms that arise in daily life can be tolerated and may not interrupt the things you need to do. Life events were not universally experienced as painful; Ayaan did not feel her circumcision hurt at the time but did hurt after in recovery. Deqa and Khadija did not feel childbirth was painful. Khadija had C-sections, while Deqa was induced into labour. Alternatively, maybe Deqa does not encode/remember it: She said that a ―labour is a labour‖ and when it is over, you forget the pain. Khadija describes experiencing pain when her children are sick. Interviewer: Or you‘re feeling physically that you‘re not okay when your children are sick? Khadija: W-emotionally, somehow… I feel it. Interviewer: Okay (overlapping) Khadija: Okay yeah. …. Do you have a kids ... by the way? Interviewer: I don‘t have kids yet, no. Khadija: Okay. It is.., it is something that I think most mommy has. Interviewer: Mmhmm Khadija: When you‘re .., when your son or your daughter gets sick, you wanted you, you get that, you want it that, the babies gonna be okay and you get that pain, on you. I don‘t know why. Interviewer: Yeah Khadija: Nobody likes it to pain, but you know?

Life events are mostly in the past, and daily states are by definition ongoing. Describing discomfort in the former is part of relating a closed story whereas with regard to daily life, pain‘s telling could also bleed into an issuing of complaint, expressing bother and difficulty. Therefore, present pain might not be told to avoid complaining.

“Feeling”

Interestingly, many women made use of the word ―feeling‖ in an unqualified way, not specifying what was being felt. This may have been an issue of translation (words or idioms) but there were potentially other reasons for the unique usage. Spoken alone, the word ―feeling‖ evoked a notion of valuing sensation as opposed to in-sensation/non- sensation – feeling versus not feeling – where an expected binary might have been feeling pleasure versus feeling pain. ―Feeling‖ itself may be a vital sign in life with more opposition to not-feeling, (or without distinction-from altogether) rather than conceiving opposition between pleasure and pain, which tend to co-mingle. Nasra: Then after week, I went back to the doctor. And I feel better and then the doctor say, ‗Oh, you can do whatever you want now, you‘re okay.‘ Then after that, I- I didn‘t comfort still well Interviewer: Okay Nasra: But we using that but I feel something, I‘m not feeling well when I‘m using for, umm, doing for intercourse, and little bit feel…a pain Interviewer: Okay Nasra: And, um, I didn‘t feel even I need it. I didn‘t feel it. My husband feeling, but I didn‘t feel it. I just say, ‗Okay‘ Interviewer: (laughs) Nasra: When he finish it- uh- I‘m waiting ‗til he finish whatever (laughs). Yeah Interviewer: Yeah, but it‘s not comfortable Nasra: Not for me Interviewer: Mmmhmm Nasra: Really. Because I didn‘t feel nothing Interviewer: And when you‘re feeling the pain, was that just in the genital area? Or was there pain other places as well? Nasra: Because if-if-if you feel something Interviewer: Mmmhmm Nasra: You didn‘t feel a pain, right? Interviewer: Mmmhmm Nasra: But when you do- sexually, you didn‘t feel the sexual Interviewer: Mmmhmm Nasra: You feel the pain, right? Interviewer: Okay Nasra: So... just th- and-and, uhh, when I- but what happened, the period, the pain, I get less.

Here Nasra uses ―feel‖ unqualified in seemingly both pleasurable and pain senses. With sexuality, especially with a history or ongoing reality of pain, pleasure and pain overlap and the meshing may influence a tendency toward conglomerated expressions:

Deqa: So, yeah, it took me for a while, for me, to have the confidence again to have, uh-uh (tsk), make love with my husband after because I was so scared the whooole experience was like, oh my gooood. Interviewer: MmmHmm Deqa: You know (overlapping) Interviewer: And was that very different after… you‘d, given birth and gone through those processes? Deqa: Yeah, it was, yeah. Yes, because like (…) Well, some people, I say, uh, I don‘t- I‘ve seen some people who told me they don‘t feel anything. Interviewer: MmmHmm Deqa: I‘ve met people like that. Interviewer: MmmHmm Deqa: And, I-I- I was looking at them and I say ‗are you sure?‘ Interviewer: (laughs) Deqa: And they said ‗yeah (.) uh- we been circumcised and we don‘t feel anything.‘ I said ‗no that‘s not what it is.‘ (.) I do feel. Interviewer: MmmHmm Deqa: I do feel!

The way that Deqa indicates a change in her experience of painful intercourse once she has given birth, seems to indicate that she is speaking of feeling pleasure. Later, she continues: Deqa: So I‘ve seen people tell me that they don‘t feel anything. I‘m not sure whether they still, in that shell? Or, they just don‘t want to say ‗I feel something‘. It‘s not, sex is for men only. Interviewer: Right (overlapping) Deqa: And man only. Interviewer: So they don‘t want to discuss the feelings that they have. Deqa: Yeah well, either they don‘t want to discuss. Or either, something to do with their circumcision, or-or, they cut a nerve or something, or, I‘m not sure what. Interviewer: Yeah, yeah Deqa: Right? (laughs) Interviewer: Yeah (laughs) Deqa: So, it- people are different. I‘ve seen people say they don‘t feel anything. Interviewer: MmmHmm. But for you that‘s not the case. Deqa: That‘s not the case, no.

Here Deqa is speaking about ―the shell of being a girl‖, where girls are conditioned not to speak about sexuality or their own sexual pleasure. In contrast, she is more willing to discuss her ―feeling‖– of pleasure. In Johansen‘s (2007) discussions about sexual pleasure with Somali women in Norway, the women‘s first term was usually dareen,

77 meaning ―feeling‖, which Johansen notes has to be specified (but was not, like here). As quoted above, Khadija said: Khadija: But as sexual-sexuality is not something that you don‘t feel anything. Interviewer: Right. Khadija: You feel normal. Aaaaand yyyyyoou feel everything thaaat…when you, when you have sexuality with somebody that you will feel anyway. Interviewer: Okay Khadija: But, it, it is, the beginnings a little bit..., it is kind of tight. Interviewer: Okay Khadija: So you, you won‘t feel comfortable. Interviewer: Okay Khadija: Yeah. The more...then...you doin‘ it then you will pass.

―Feeling‖ may also remain unqualified in the arena of pleasure owing to norms of sexual prudence.

Overall, despite the aches and pains found in the interviews, participants did not regard themselves as people in pain or ill; pains did not amount to what could be called an illness identity or pain mentality. This becomes even more apparent with the positive valuations women give to their overall health and embodiment.

Feeling good in my body

Subthemes:  Pleasure and relaxation: My body in relation  FGC part of lived embodiment

Pleasure and relaxation: My body in relation

For the most part, women discussed feeling best in their bodies when they were able to relax on weekends and spend time with their families: Nasra: Weekend. ‗Cause everybody at home and I cannot do everything, right? Interviewer: Yeah Nasra: Uh, the-the girls, they take care of chores. They clean up, they doing that, they- one she go to the washroom, clean up, one she go to the kitchen. Whatever. Then I get to relax Interviewer: (laughs) Which is nice Nasra: Then we have to- (overlapping), yeah. We have to ss-speak my husband or sometime to watch basketball or hockey, whatever‘s going on. I feel perfect. Sometimes we have to prepare tea, we together, the- so the kids they go upstairs, watch. They have a TV upstairs and computer. And my husband and me, they are watching there and only my husband, some-

Interviewer: Get to spend time together (overlapping) Nasra: Only my son sometimes coming saying, ‗Mama, Dada, I have to sit between, I want to talk together, blah blah blah‘ Interviewer: (laughs, overlapping) Nasra: Like that. But everything fine, you know Interviewer: Y-Yeah (overlapping). So you feel good on the weekend Nasra: So that‘s, uh (overlapping). The weekend is the my best. ‗Cause my husband, [X], the kids help me, so Interviewer: Yeah. Well that‘s nice Nasra: I just enjoy (overlapping). Yeah

Similarly, Deqa, Naima, and Amina cited the weekend as their optimal felt time. Naima said her achy body is better on Saturday and Sunday. Amina said that she gets a lot of rest on the weekend. For these women, feeling good was described in terms of feeling rested, being supported, helped in housework, and time spent with significant others. Ayaan described her best feeling as result of waking up on time and having her day go smoothly. Khadija shared that when she is swimming with her kids she feels best, light and happy. As for negative feelings, Lul, Khadija and Nasra shared that they feel the worse when they experienced menstrual pains. Khadija also mentioned feeling bad when she is not rested and working, looking at the clock at the end of the day. Naima feels the worst immediately when she wakes up and is sore.

FGC part of lived embodiment

Overall, women were very positive about their bodies and how they feel. Even women who were discussing pain in their lives were ultimately expressing contentment, a somewhat paradoxical but positive reaction best illustrating by Jamila. Jamila discussed how aside from debilitating period pain and the lingering pain of circumcision, she feels good in her body and loves her body. Likewise, even after her discussions of pain, Nasra evaluated that ―everything is fine.‖ Waris, Deqa and Amina expressed feeling good and ―fine‖ in their bodies. Lul expressed feeling ―strong and good.‖ For the participants, having aches and feeling strong and good are not necessarily contradictions.

Feeling good overall and in contemplation of the consequences of circumcision on life, was expressed alongside the givenness of one‘s body, ―the only body I‘ve ever known.‖ Women did not feel like individuals who are sick or pained even if they do experience pain regularly. Circumcision or infibulation (―what‘s done- ‖) and perhaps even aches and pains are a part of

79 their lived embodiment (―-is done‖), and among the group, bodily pleasure, intimate loving relationships, and fulfilling family, community and work lives situate lived bodies.

DISCUSSION

The qualitative themes, representing the essences or structural scaffolding of the phenomenon, are discussed here in interaction with related literature and as they relate to the research question exploring FGC and neurobiological changes, chronic pain and issues of meaning and interpretation. The discussion is not organized along the thematic lines used above, because the themes need to be discussed in relation. Prior to delving into discussion, a summary of the portrait captured in the interviews is given, and it is suggested that many aspects of the findings also occur in other cultural settings even as they manifest uniquely in each.

A summary of the portrait captured

The interviews introduce busy and active women engaged in rich family, work, and social lives. More participants expressed some pain or discomfort in their lives than expressed little to no discomfort. Regardless, most women felt healthy and positive in their bodies. Often feeling healthy and pain-free was considered in relation to a broader idea of sickness and/or to a sense of being capably active and productive in daily life.

The memory of FGC was strong and vivid for all participants. An equal number of women felt unaffected by FGC as felt that FGC caused pain or reduced satisfaction in their sexual lives. Imagining oneself in relation was an important mental activity: For a large portion of the conversations, women contemplated their FGC experiences and current bodily experiences (including activity through daily life, sex, childbirth, etc) by situating themselves amid peers, the wider community of Somali women or all women, to calibrate what is normal or to be expected. Situating oneself involved a balance of sameness and difference, uniqueness and commonality, and a logic for fulfilling each (as in the case of Fardosa understanding why her unique situation of experiencing pain was justifiable given her particular constraints). Finally, when talking about how their bodies felt during a typical day, women also situated their body feelings amidst their experiences with FGC and amid the norms and mores of a certain time and place growing up in Somalia and then living as a Somali woman in Canada.

Insight offered by participants on their experiences and interpretations came through not just speech but also silences, including subjects that were obvious or tacit to them. Participants emphasized the commonality of circumcision in a certain time and place, often resorting to very accepting, resigned, or factual expressions and language. The culture at the time was such that FGC was inevitable; in addition, their bodies as they are now have been bodily fact for the last dozen years. They identified existing silences around the buried (but sharply vivid) memory of FGC and how no one talks about it, creating a juxtaposition between how well FGC is known, the depth of its history and tradition, and how little women share experiences of both the ritual and later bodily passages in life.

Unique but familiar

The interviews are notable for uniqueness and also for being familiar and commonplace; they are rich for the problems of daily life that transcend context, even as similar problems manifest differently in other contexts for other groups of women. For example, silence regarding how life events are experienced and questions of what is ‗normal‘ are pervasive across cultures. During the time of writing this thesis, several works of popular culture were published in this vein. To cite two examples, Douglas (2000) shares lessons from mothers in Canada on what to expect during pregnancy and delivery because women do not share enough and would benefit from sharing. Next, two well-known comedians started a joint blog citing that ―there is so much about childbirth and taking care of babies that is not talked about‖ (―Eating over the Kitchen Sink‖ by Allana Harkim and Samantha Bee of Comedy Central‘s The Daily Show, 2011). Many groups of women, it appears, do not know what is ‗normal‘ and too often refrain from sharing experiences. In our study group, the question of whether or not participants were ―normal‖ (their words) came up regularly. Further consideration of how certain values that arise on the topic of FGC are shared across cultures – particularly in Canada – are occasionally brought into the discussion below.

Narratives as feel-thinking

Johansen (2002) writes about Somali women in Norway reflecting on female circumcision, ―not as a theoretical topic or cultural tradition to be maintained or discontinued, but rather in the sense of ‗feel-thinking‘ about it as part of their bodies, their sexuality, their lived

81 experiences‖ (p.313). For the current study participants, it seemed to be both a topic to consider continuing or discontinuing as well as a part of their lived experience every day. The content of reflections offered in the interviews is embodied and material presence in the speakers‘ lives. As such, they are relevant context and meaning for development and experience of pain or illness.

Natural-cultural tradition: Grey zones and challenges to binaries

The choice to use seemingly opposing adjectives to characterize the tradition as natural- cultural is purposeful, alluding to the naturalistic language around the cultural practice. The social pressure described by the participants, the sense of desiring circumcision as a turn all girls take, as well as the ubiquity of the practice has been illustrated elsewhere (see for example Johansen, 2002, p.321). The ubiquity and even naturalistic status, while not uncontested or total, certainly gives a meaningful framework or psychological context for the practice. One has to wonder how this affects the neural circuits of pain, both culturally meaningful and potentially problematic aspects. The present interviews, along with aspects of FGC overall, illustrate the blurriness and intermingling amid apparent binaries, such as nature/culture as well as:

a) Pleasure/pain – as illustrated in the conversation around ―feeling‖ and sexual experience

b) Feeling pained/ feeling strong – as illustrated in the conversation around feeling good despite aches

d) Self/other – as illustrated in the continuity and breaks between one‘s own body and the normative body/bodies through contemplation of sameness and difference as well pride/condemnation of FGC as a practice, and the body as fixed/mutable. Regarding the latter, FGC and occasional re-infibulation contains the idea that bodies need to be modified to assume their proper biological sex, that virginity can be constructed, or that surgeries can reverse or repair ‗what‘s done (is done).‘21 The fuzzy line where religion begins and culture ends is also debated by participants. And finally, the interviews illustrate a difficult challenge around the binary of choice/not choice. Participants as girls voiced choice to have their genitals cut within a context of social pressure and a desire to be like everyone else; mothers chose to have their

21 Pursuits of youth through an active, anti-aging cosmetic industry could be an example in a Western, Canadian setting posing the same challenge.

82 daughter‘s circumcised to ensure belonging, acceptance, community, and opportunity, in a context where that meant pain for their daughters.

Further challenging boundaries, changes in how FGC is understood are hard to pinpoint to a time; this was illustrated by a debate between two members of the CAG during a meeting. One member felt that FGC is undoubtedly abuse; while the other agreed, she felt the label of ―abuse‖ was related to time and circumstance. In the second member‘s opinion, if a mother in Canada now took her daughter to Somalia to be circumcised, this would be abusive because they now know more about the health detriments. The first member questioned: How is it abuse now and not abuse ―then‖? How is ―abuse‖ relative, and when was ―then‖? Would the year 1991 be the cut-off, gestured the first member? The year 1991 was when Siad Barre‘s regime was toppled and clan warfare ensued; the beginning of civil war ushered in a period of enormous migration of Somalis to countries such as Canada.

The contention around a daughter‘s circumcision is itself complex and illustrates debate about the natural, cultural, or inevitable status of FGC. Contention may be viewed as site of resistance, opposition or reshaping of the practice or potentially a part of the ritual itself, as a mosaic of perspectives converge in minding the daughter‘s health and future. The members of the CAG perceived the behaviour of Somali men as fathers as contradictory. They confirmed that circumcision is a mother‘s duty which fathers sometimes oppose, yet pointed out that fathers would never have married uncircumcised women themselves.

Silences: Understood commonality

Expressions of ―what‘s done is done‖, ―it just was‖ are also used almost verbatim in Johansen‘s study of Somali women living in Norway (2002) speaking of their circumcision experiences. Other silences in the interviews surrounding labeling of genitals/circumcision (―that thing we have‖) were similar to how Somali women in other instances in Diaspora have spoken; Khadiya in Talle‘s (2008) study in Norway spoke of ―her part‖ to describe her clitoris. Careful if vague language when speaking about genitals could reflect the sensitivity of area of the body and similar language around the practice could reflect its commonality. To support the latter, the commonality of having gone through FGC for adult Somali woman of that generation could make disclosing stories or memories pointless. Careful/vague language around the practice could

83 also reflect a need not to overthink. Kowser Omer-Hashi, a Somali midwife who was involved in anti-FGC activism in Toronto in the 1990s, recently said at a conference about Canadian approaches to FGC that if she thought too much about having been circumcised as a young girl, she would go crazy (Winnipeg, May 4-5th, 2011).22 There may be something in common among all these silent referents – both those referencing genitals and those referencing the FGC event – place-holders for the same general sentiments. Accepting, terse language can reflect a number of possibilities including the factualness of it having occurred and the permanence of the body mark, understanding and deference to the cultural time and space era where it happened, pride and belonging, and the impossibility of regret.

Silence around the memory of FGC, the experiences of the ritual, and infibulation throughout life was confirmed in many other sources. The practice of FGC is ―muted‖ both in interpersonal discourse and cultural models; women in our study said they do not share experiences of pain with one another and this is supported by other studies (Johansen, 2002). Furthermore, while many taboo subjects are broached in other mediums like Somali poetry, there is a particular quiet around FGC (Johansen, 2002). Our participants as well as the participants in Johansen (2002) said, ―why should we talk about it? Everyone has experienced the same thing‖ as well as ―what is done is done‖ (pg. 325). Silence is related to commonality and factualness: One woman on the CAG said that a circumcision in a room of Somali women is comparable to the status of underwear: there is nothing to talk about since presumably everyone is wearing it. At a presentation of ―The Cutting Tradition‖ in Toronto (Toronto International Film Festival Bell Lightbox theatre, March 3rd, 2011) filmmaker Nancy Durrell told of two Somali women sitting with her on a panel for an Amnesty International program who never exchanged stories before, even though they were well acquainted. Durrell was surprised. Yet silence makes sense from the point of view of obviousness, givenness, or commonality.

Silences: Muting of pain?

Silence itself might be related to pain in a subtle way. Johansen wonders why such significant practice is muted, that perhaps there is something ―intrinsic to the pain itself‖ that is ―muting the experience‖ (p.325), partially related to loss. Somali women in Norway she held

22 Her position should be noted; Kowser comes from the position of ardent opposition to FGC and activism to end it.

84 conversations with experienced the lasting effects of the painful practice as a sense of loss. Silence may betray a sense of loss, and subtly, past and ongoing pain. In Johansen‘s (2002) ethnographic research the sense of loss was aggravated by movement to a culture with a different view of feminine embodiment, sexuality, and intactness; ―loss‖ was not connected to presence of body parts alone, seeing as one participant in her study expressed loss but had discovered an intact clitoris and labia minora under the infibulation scar. Talle (2007, 2008) writes that the link between pain and infibulation is so obvious that it does not have to be spoken aloud: ―The pain of circumcision, however, was common sense and seldom articulated‖ (2007, p.73).

Silence surrounding the memory of pain and around current pain was a major research challenge. The shear difficulty of finding language that can account for pain ―constitutes a challenge for both the researcher and the one who has suffered pain‖ (Johansen, 2002, p.325). There were potentially other expressions of pain in our interviews, such as the talk of resting (see Finnström & Söderhamn, 2006). Importantly, untreated (or silenced?) persistent pain can lead to chronic or intractable pain (Brennan, Carr, & Cousins, 2007). Yet, does silence also signify ―part of the management of the pain‖ (Johansen, 2002, p.326)? Does it signify an acceptance of pain as normal? Can silences in the interviews be interpreted, partially, as signifiers of pain? I have emphasized here that from the current study, part of the pull toward silence(s) comes from commonality, deference to a time and place where FGC occurred and the impossibility of regret. It could be that these tacit knowledges suppress the acknowledgement of pain, or materially assuage or aggravate pain. As for loss, a few women in the current study expressed a sense of loss of feeling and of body parts; an equal number of women emphasized no sense of loss or body parts. References to loss, whether loss was endorsed or not, may have arisen because our participants are forced to contend with an ideology in Canada that regards FGC as mutilation and that can operate as accusation requiring response.

Finally, despite the silences around sharing stories and experiences, many women who had never told their stories before expressed gratitude to be sharing it at the interview. The interviews were rich because participants were divulging narratives willingly and abundantly.

Semiotics of Culture, Pain and Identity

It is necessary to discuss pain while keeping in mind habits of terminology, which are also habits of identity. Use of the term ―pain‖ could indicate that a feeling of sensation is negative, out of the ordinary, unbearable, or disruptive to something. Yet occasions for expressing pain, how one expresses it and labeling something ―pain‖ to begin with will vary across socio-cultural contexts where baselines and expectations are shaped and where an individual‘s references points for her body are molded. Bendelow and Williams (1995) write, based on Kleinman (1988), that ―culture fills the space between the immediate embodiment of disease as a physiological process and its mediated and meaning-laden experience as a human phenomenon‖ (p.153). The interpretation, expression and meaning of pain – as well as responses to pain including pain behaviours – are shaped within a given socio-cultural milieu.

Researchers have written about important Somali values including stoicism (Finnström & Söderhamn, 2006) and endurance (Tiilikainen, 2001), which shape attitudes towards pain. Members of the CAG indicated that expressing pain is discouraged among children in Somalia and that control is valued. Children are told to control themselves and are seen as strong for hiding complaints. One CAG member said that you have to save your energy for the ―big stuff‖; why waste tears on the little things? Fardosa and her sister were told if they did not cry during their circumcisions, they would get gold earrings. Her sister got the gold earrings because she did not cry and was acknowledged as braver whereas Fardosa cried.

Additionally, expressing pain is shaped not just by the value of stoicism, which could reserve ―pain‖ for the requirement of urgent help, but by connotations of illness. Our CAG told us numerous times that the Somali word xanuun covers a broader set of connotations than the English word ―pain‖, encompassing pain, ache, and sickness or illness. Other studies report the same (Finnström & Söderhamn, 2006). Helander (1995) writes about the continuum between disease and disability among the Hubeer clan but also among Somalis generally; prolonged immobility itself connotes a problem, that something is wrong. ―Somalis in general,‖ Talle (2008) writes, ―also those in exile, identify themselves as a nomadic people, and within that identity construction, movement or travel is a social and cultural value of great importance‖ (p. 69). The idea of being in pain, if connected to illness, may connote a condition that hinders your daily routine, where movement and mobility is highly valued. As a result of these factors, in Somali language and/or having been acculturated in Somali culture, an individual might not use

86 the word pain unless urgent help was needed, or illness (or soreness) compromised her ability to do daily activities. This framework was seen to shape many of the responses by participants in the current study, where pain was negated with ―I‘m not sick‖ or an insistence on being active, indicating health and removing the ability or need to think of pain.

Study participants‘ experiences of pain are shaped by beliefs about women‘s lives. Busatta (2008, citing Pieters and Lowenfels 1977, p. 731) writes: ―Somali women express a stoical attitude to pain, which is considered a natural part of their lives, which is simply the truth, given that the complications [of circumcision] are numerous and all painful.‖ Busatta‘s statement is useful in dilution; her absolute manner of expressing truth for all Somali women is concerning. But touching on prevalent attitudes that may have an impact on Somali women‘s health (both for better and worse), including stoicism around pain, is valuable. Similarly, Johansen (2002) writes: ―There is reportedly a general value [in Somalia] placed on women's endurance of the hardships of life, which, it has been suggested, may be made relevant for the individual management of pain (Adan, 1996; Dirie, 1998)‖ (p.321). Indeed, participants in the current study believed that women‘s lives are busy, tiring and even painful, said with reference to all women.

Accepting pain in women seems to be a cross-cultural reality. Insufficient attention is paid to women and pain in North American contexts as well (IASP, 2007-2008), and can have a material impact on women‘s health. Grace and MacBride-Stewart (2007) asked women with chronic pelvic pain to reflect on why they have pain. The diagnostic process sets up a normal/pathological dichotomy such that when no pathology is found, women internalize that experiencing pain is normal. In their responses, the women employed mechanistic medical discourse, reiterated not knowing and also normalized their pain. Souza et al. (2011) write: ―In our experience, statements such as ‗I don‘t know where this pain comes from, doctor, they said I was normal . . .‘ and ‗. . . it‘s normal for women to feel pain, isn‘t it?‘ are common‖ (p. 6). Accepting pain as a part of women‘s lives – even when it does not relate to female-specific biological events such as pregnancy – is a widespread, cross-cultural reality.

In summary, pain, identity (including notions of gender) and values are linked. What does it mean for individual women to see themselves amid this broader conception of women‘s lives as busy, tired and painful? How do women tend to their bodies and to what are they alert and

87 heeding? One CAG member said: ―When pain is common, it is not pain.‖ Perhaps if pains are perceived as part of a communal, tacitly understood or inherent gestalt, they cease to be labeled ―pain‖, cease to be worth expressing, and from a biocultural perspective on neurobiology, cease to become pain in the first place. Pain, if regarded as nociception, can be differentiated from suffering. Where culture and biology mingle at the ―gates‖ of nociception, they may also mingle at the billowing (or not) of pain into suffering.

Sociosomatics of migration: Shifts in meaning and shifts in the normal body

A number of considerations counterbalance the factors above that would limit pain expression. Firstly, the participants have lived in a Canadian environment and thus encountered other ideologies of health that could encourage labeling and addressing less debilitating forms of pain.23 Another reason to be more expressive about pain and symptomatology are the sociosomatics of suffering due to fleeing political turmoil and war as refugees, leaving home, and immigrating to a new context. The notion of sociosomatics expresses a ―fundamental dialectic‖ between the body and the social world (Kleinman & Becker, 1998, p.391). Sociosomatics integrates context into psychosomatic approaches, placing mind/body in context. In Carroll (2004) a Somali woman is asked ―Does she [her mother] have pain with murug [sadness because of the stress of war, impoverishment, sickness in the family]? The woman replies ―Yes – stays home, doesn‘t eat, sleep, headache‖ (p.122). Prolonged sadness and worry can cause headaches, loss of appetite, crying, and a lack of interest in social activity – something termed pain, potentially also because it is immobilizing. In Tiilikainen (2001), the talk of illness belonging to Somali refugee women in Finland is at the same time talk about refugeeness and suffering; they expressed a multitude of somatic complaints, widespread in their bodies.

Similar mingling of suffering and pain has been reported by Somali women refugees elsewhere. Recently, at the Harborview Medical Center in Seattle, Washington, several doctors were seeing Somali women patients with aches and pains they struggled to treat successfully (Doughman, 2011). Nurse Bria Chakofsky-Lewy, who supervises a program for immigrants and refugees, considered that the women‘s symptoms could be a mixture of physical trauma and

23 Tempering this possibility, Scarry writes that even as immigrants to new countries progressively assimilate or refashion their habits, their disposition towards physical pain and how or whether to express it remains steadfast (Scarry, 2008, p. 65).

88 emotional pain from fleeing war and relocating across the world. Chakofsky-Lewy started a program for Somali women called Daryel (Somali for ―wellness‖) to ease the pains of war and exile. Daryel combined yoga, massage therapy, and discussions over tea within a setting of ―culturally-competent care‖, where women could speak Somali or utilize an available translator and exercise in comfortable, modest clothing with other women. Many women had witnessed violence and death in Somalia and been the lynchpins holding their families together as they migrated and resettled in an unfamiliar place; many would set aside their own physical pain to be strong for their families. In the current study, participants are not recent refugees and have been residing in Canada for almost fourteen years, ranging from two to 21. Based on participants‘ statements of feeling comfortable and at home as well having a longer average length of stay, the women in the current study likely feel more settled than the newcomers in the Seattle program. However, they express similar busy-ness, requirements for keeping families functioning, frequently the need to maintain several jobs, and some stressful spread of family between the United States, Canada and Somalia.

Immigration is certainly a process of shifting that is very bodily. Talle (2008) writes about the relocation of Somali women to London not only as a physical immigration but a relocation of ―circumcised bodies‖ that places women ―as actors in shifting contexts of meaning and hegemonic power that are of profound consequences for Somali female identity and perception of self‖ (p.57). ―Diaspora and displacement‖, Talle (2008) writes, ―are embodied processes‖ (p.59). In Talle‘s (2008) research, many Somali women experienced a social degradation and also a ―dramatic and sudden repositioning of body-self‖ (p.60). Talle (2007) argues that displacement is painful for circumcised women. Pain from the past, from circumcision, childbirth and marriage, ―surfaces through the gazes of others – on the streets, at the health centers, and in the media. The public noise of the global debate around circumcision is painful, intimidating exiled women and drawing boundaries between ‗healthy and unhealthy‘ bodies‖ (p.105).

In the current study, participants express multiple and widespread somatic complaints; despite the significant differences from newer refugees, aspects of the sociosomatics of migration may still be relevant. A few participants did speak about the way their bodies felt different in Canada. Symptoms were often spoken about in relation to life events, of which

89 migration was one. From a methodological perspective narratives are important as triggers and identifiers of past and current pain. Life events cause transition in bodily experience – or in the case of menstruation, for example, they are transitions in bodily experience. People recall bodily experience and life events through one another. Experiences of pleasure and pain are constituted by their environments, as much as the experiences actively constitute environments, meeting, forming and co-creating one another in a hermeneutic circle. Participants experienced a significant geographic and cultural move in immigrating to Canada, one which produced moments for reflection on FGC. ―Voicing muted experiences…removes the praxis from the doxic realm, making it possible to reflect on it‖ (Johansen, 2002, p.329). From a biocultural perspective, does the possibility of reflection and questioning that arises from relocation ―affect the experience of their embodied pain?‖ (Johansen, 2002, p.329). If pain did not exist, could it arise following newfound reflection? A statement from Amber in Johansen (2007) illustrates the entanglement of migration, shifts in meaning, and pain: ―I had a very small hole, the smallest among my peers, and I felt very proud (...) Then I came to Norway, and realized that most of my classmates were not circumcised. My small hole, which caused me so much pain every time I had to pee, was nothing to be proud of (…) it had no meaning for me anymore‖ (p.260). The possibility of reflection was new for many participants in Canada. Although the participants are predominantly not new refugees, ascertaining a timeline for the process of reflection and ―feel- thinking‖ – felt reflection triggered by a new environment – is more difficult that noting time taken to find employment or gain permanent residence. Sociosomatic processes (like immigration) do not negate the possibility that FGC may cause pain later in life, but gives another context for worsening it or re-hashing it.

As the quotation from Amber illustrates succinctly, a theme of reflection arising from migration is normalcy. Like the current study participants, Amber went through a process of situating herself among her peers, and this was important for her experience of her own body. ―Social learning and comparison processes within ethnocultural group situations‖ appears at the apex of Bates‘ biocultural model of pain (1987; see Figure 3). Discussing normalcy – of bodily feeling as a circumcised woman in Canada, in particular discussing sexuality – has to be understood in the context of an invasive questioning from the outside of how circumcised women feel, full of uninformed presumptions, speaking for/over the women themselves, and moral horror. Questions of pain or sexuality are not new questions in Canada per se for the

90 participants, stemming only from this surveillance. Rather questions of sexuality, for example, have already informed part of the rationale for FGC itself, while local contestation of FGC does exist alongside the strong tradition within Somalia. More dialogue around FGC seems to exist today than when the participants were younger, which was also the opinion of the women on the CAG. Yet this Diasporic context had to be understood as part of the background for women contemplating the normalcy of their bodies and body experiences. Normalcy is understood by participants through a simultaneous mixture of difference – I am normal in my unique circumstance, and I am similar to those who are different in the way I am. Recall Fardosa‘s grasp on how her experience with sexual pain was normal because it was different, meaning unique or particular: Fardosa: You know why? My case it was completely different. Interviewer: Uh huh Fardosa: The reason it is, (..) my husband he doesn‘t have a time, he‘s only one month (..) from leaving

Normalcy is also understood through diversity, ranges and fluctuations. Participant‘s felt that at shifting moments in life one should also bear shifting expectations, as bodies change; moreover, it is natural for there to be a range of bodies. At the same time, women wondered about how they would feel in different circumstances. Given that the vast majority of women in Canada – wherever they were born – are not circumcised, the common or communal female body, the normative body and reference point with regard to expected gender, genital and sexual embodiment,24 contrasts their previous experience sharply. In fact, instead of suspecting and dispensing of the clitoris, the Western belief strongly valorizes the clitoris (Johansen, 2007, p.265). In contrast, the ―absent‖ clitoris (Talle, 2008), is ―incorporated as a body ‗habitus‘ of adult Somali women‖ (p.68). We can understand women‘s attempts to situate themselves, particularly with regards to sexuality, as a response to this contrasting normative environment.

Summary

In summary, many findings of the qualitative study component are consistent with other qualitative studies including: some pain in the lives of adult Somali women with FGC living in Diaspora, and pain according with certain aspects of identity such as notions of woman lives as

24 I am not touching upon issues of racialization or attitudes towards accents or visible Muslim dress in Canada that also affect women‘s experiences of normal embodiment.

91 painful and tiring. Therefore the notion of ―pain‖ may recede from articulation or never appear, also in light of other values such as mobility, or activity. Illness connotations of xanuun were also present in expressions of ―I‘m not sick‖ when relating to the idea of pain. The current study also suggests that the same women feel healthy and strong, and are resilient and hardworking, maintaining busy, vibrant and active lives.

Similar to reports in other resettlement contexts, immigration to the Canada context has stimulated a lot of reflection about the meaning and necessity of FGC. The current study, however, has captured deep comparative reflection taken on and embodied by participants as they consider their own experiences (past and current) within a mosaic of other women‘s experiences and ideas of normalcy. This study reemphasizes the import of Bates‘ biocultural model of pain (1987) as a framework giving attention to social comparison and cultural situations and attitudes towards pain. Participants processed their experiences on a busy rather than blank slate, trying to situate themselves among peers and other references points. The question of how reflection, shifts in meaning, and different regimes of meaning both prevent/reduce and induce/exacerbate pain remain open to study by neurobiology interested in context.

QUANTITATIVE STUDY

METHODS

Quantitative Interview and Instruments

Participants who felt comfortable attended a quantitative interview. At this second interview, participants were asked if they had any further thoughts on the qualitative interview. The quantitative interviews were carried out by G.E. with Dr. Hawa Farah or myself. Informed consent was obtained. All the quantitative interviews were carried out in English, but participants were offered the presence of a Somali interpreter. Instruments and informed consent documents were translated into Somali by a professional translating service (―Apex Translations, Inc.,‖ Toronto, Ontario). The CAG back-translated the words. Pain descriptors without a one-word Somali language equivalent were interpreted into expressions that conveyed the meaning of the original English descriptor but in Somali. The final sample size was too small for a statistical

92 quantitative study, so principles of design validity are not relevant. Measurement validity is discussed briefly. The following measures, including validity and scoring information, were administered as follows:

1. A socio-demographic and health history including questions on sleep, marriage and sexuality, reproductive health and circumcision. Pain was directly queried in the health history in several ways: whether the participant ever sought professional help for pain, experiences distress due to pain, and is currently in pain.

2. The twelve-item General Health Questionnaire (GHQ-12) to assess recent or current mental distress (Goldberg, 1972; Goldberg, 1992). The GHQ-12 inquires about capabilities in daily functioning in the recent four weeks, asking the respondent to rate a list of positive and negative items against typical, personal patterns – for example, of being able to concentrate or play a useful part in things. Four responses are available in a scale of ―more‖ or ―less‖ than usual. The GHQ-12 has been validated within several different groups and languages; it was used in ten languages in a World Health organization study of psychological disorders in general health care (Goldberg et al., 1997) and within general populations (as examples, a community sample of Canadian women in Katz et al., 1995, or a general population sample via a national household survey in Britain, Pevalin, 2003). One study used a scaled version of the GHQ (28-item) within a Somali Diasporic community in England. Ahmed and Salib (1998) investigated the psychosocial correlates of khat chewing and compared psychological symptoms among regular Somali male users in Liverpool with nonusers. The original GHQ can be scored in four different ways (Goldberg, 1972) while a bimodal scoring method of the four responses for each item is recommended for the GHQ-12, producing scores between 0-12 (Goldberg, 1992). A caseness of >3 is recommended for dichotomous scoring (Katz et al. 1995 citing Goldberg, 1992). Dr. Sarah Romans scored the GHQ-12. The GHQ-12 was used not as a screening tool but rather to characterize the participant sample.

3. The second version of the Short Form McGill Pain Questionnaire (SF-MPQ-2) to assess and characterize non-neuropathic and neuropathic pain in a one-page questionnaire (Dworkin et al., 2009) (APPENDIX III). The first SF-MPQ was shown to be valid and reliable (Grafton et al., 2005; Melzack, 1987). The second, revised version showed internal reliability (Cronbach‘s

93 alpha) of 0.91 to 0.95 for total scores; and 0.73-0.87 for subscale scores (Dworkin et al., 2009). The SF-MPQ-2 consists of 22 descriptors of pain and related symptoms each with a numerical rating scale (NRS) of 0-10 where ten is the worst pain ever felt. Descriptors belong to four subscales: continuous, intermittent, affective or neuropathic pain characteristics. Participants indicated which parts of the body they wanted to evaluate on the questionnaire, able to fill out multiple forms if desired. When necessary, the Somali interpreter helped to translate or clarify. The first two women tested were given the Long-form MPQ as a pilot but it was found too cumbersome and relatively unintelligible even when translated into Somali.

2. Quantitative Sensory Testing (QST) of pressure-pain thresholds (PPTs, in grams [g]) in the vulvar region using a Vulvalgesiometer. QST is the primary approach for studying somatosensory psychophysiology and pain perception. It is not objective in the sense of being free from patient report, but when tested in a standard fashion, provides a valid characterisation of response to quantified physical stimuli (Backonja et al., 2009). Neurological injury causes both positive sensory phenomena and sensory deficits (negative phenomena). The vulvalgesiometer was first explained and demonstrated on the participants‘ hands. The vulvalgesiometers are manually-applied mechanical devices that exert predetermined, standardized force via the use of springs with various compression rates (Pukall et al., 2004; 2007). A disposable cotton-swab is attached to one end of each device and is the only part of the instrument that comes into contact with the area being tested. The set of vulvalgesiometers exerts pressures ranging from 3g to 950g. An upper limit of 500g was used in the current study. It is validated to discriminate between groups of women with and without provoked vestibulodynia (PVD), with inter-rater reliability of r = 0.77 (p = 0.01); Pukall et al., 2007).

Women were asked to remove their clothes from the waist down, and lie in the lithotomy position on a standard examination table with their feet in the examination stirrups and lower bodies covered with an examination sheet. When participants were ready, we began by noting the extent and type of FGC that they had (Personal communication of GE with Dr. R. Elise B. Johansen, WHO). A small amount of KY-Jelly® was applied to each cotton-swab to prevent irritation of the moist vulvar area. The vulvalgesiometers were applied to the skin surface at a perpendicular angle. The lowest pressure was applied first to all sites, followed by consecutively higher pressures. Four vulvar sites were tested, illustrated in Figure 9: 1) the clitoral region

(keeping in mind that external clitoral tissue has been excised), 2) the left region of the labia minora, 3) between the introitus and the anus (i.e., the perineal body), and 3) the right region of the labia minora. For each level of pressure at each region participants were asked, ―Is this touch or is this pain?‖ As soon as they indicated ―pain‖, testing ended for that region and the pressure was recorded as her threshold. If at 500 g, a participant was still reporting touch, we stopped applying pressure and noted 500 g+ for that region.

Figure 9: Four vulvar region sites tested with QST denoted by the hours on a clock.

DATA ANALYSIS

Descriptive statistics were noted for the SF-MPQ-2 as follows:

For each participant:

1) Means for each of the four subscales of a body region selected a. The highest subscale for each body region 2) An overall mean for each body region, an average of the four subscales 3) Average of all body region means 4) Number of body regions chosen

For the group:

1) Subscale means (an average of all participant subscale means) and range 2) Overall mean, an average of overall means 3) The subscale most frequently participants‘ highest subscale 4) The descriptor with the highest total score for the group (relative intensity)

5) The most frequently endorsed descriptor (counted when ranked one or greater) 6) Number of body regions chosen

Descriptive statistics were obtained for the QST as follows:

1) Threshold values for each vulvar region per participant 2) Overall mean for the posterior vulvar vestibule for the group

RESULTS

Self-Reported Medical Histories (N = 12)

Table 2 presents information from the participants‘ self-reported medical histories on general health, shown alongside the results of the GHQ-12. Nine of twelve women (75%) ranked their health as six or greater. None of the women reported being on any medication for depression or anxiety. Participants had not sought counseling and were not taking hormonal birth control. No one took medication for pain stronger than acetaminophen. Aside from C-section births, surgeries included two participants with gallbladder removal. Diagnoses were given to six women including arthritis, irritable bowel syndrome, back pain, and headaches. Two participants were involved in car accidents; Deqa experienced initial neck and back pain that resolved with physiotherapy. Nasra fractured her coccyx upon impact; she experiences back, abdominal and leg pain, and other symptoms but mentioned that she experienced pain prior to it. Based on the qualitative interviews, six participants reported that they received a local anesthetic before circumcision, four did not receive anesthetic, and four participants could not recall.

Importantly, for expressing pain, most participants did not respond to the three direct questions about pain in the medical history even as responses to pain were given in other sections (health concerns, sexuality, or interference with work or other activites). Only four participants affirmed being ―currently in pain‖; two of these participants reported ―distress due to pain‖. When combined, the number of participants with a diagnosis of a painful condition or reporting current pain was seven out of twelve, or approximately 58%.25

25 When Ayaan is included in this figure by considering her diagnosis of large intestine diverticulitis, this figure is 67%. However, the extent of this condition, where abdominal pain fluctuate considerably and is not necessarilyy ongoing, is not known.

MEDICAL HISTORY GHQ- Distress Sought Vaginal Self- Injuries & Currently 12 Participant Diagnoses Medication due to help for infections/ reported Comments surgeries in pain? pain? pain? Dryness health /10

For arthritis Health is Arthritis, and high good, has no Naima high blood C-section No No Yes No / Yes 5 1 blood health pressure pressure concerns

Concerned Arthritis in Rickshaw Blood about high foot, accident, pressure blood headaches, Nasra fractured medicaton, Yes Yes Yes Yes / No 4.5 pressure, 2 Irritable coccyx; C- Tylenol if thyroid, Bowel section pain arthritis in Syndrome right foot/heel

Car accident April 2009: No health Tension Deqa Neck and None No No No No / No 8.5 concerns & no 4 headaches back pain illness resolved.

C-section; Concerned Hernia from Yes, tries about pain, Amal None pregnancy; Tylenol Yes Yes No / Yes 6 1 to forget getting tired a Pelvic lot inflammation

Avoids drinking and Lul None C-section No No No No/ No 8 Is healthy 1 sleeps for headache

Is healthy, no Waris None C-section None No No No No / No 8 one can be 0 100%

No health Khadija None C-section None No No No Yes / No 10 1 concerns

Health is pretty good Headaches, Amina None None No No No No / No 4.5 but not great. 2 back pain Always has stress

Hakima None None None No No No No / No 10 No comment 0

Large Gallbladder No health Ayaan intestine None No No No Yes / Yes 9 0 removed concerns diverticulitis

Not healthy becuase of Cholesterol high Mild Gallstone 2-4 Fardosa medication, Yes Yes ? Yes / Yes 7 cholesterol, 1 arthritis years ago Tylenol low blood pressure, always tired

Maryam None None None Yes No ? ? 7.5 Back pain 1

Means 7.23 1.167

GHQ Range: 0-4

Table 2: Participant medical histories and GHQ-12 scores.

Have you How Are you experienced Sexually frequently Do you find ever pain after sexual Are you active in prefers to sexual aroused Associations Free Participant contact: within afraid sex past be activity without with sex** commentary the last year, will hurt? year? sexuality enjoyable? wanting to before children, active? have sex? after children?*

Yes (that's Pleasure, I like it - no No, Never/almost Naima Yes Frequently why Yes No Relaxation, choice though, never, Never married) Love, Shyness man is there

She pretends Yes, Pleasure, Love, she enjoys. Nasra Yes Never No No Often/always, Yes Pain, Shyness Worried about Often/always pain.

Pleasure, Yes (when No, Never/almost Deqa No N/A Yes No Relaxation, married) never, N/A Love

"My mind says No ("my Yes, I am going to 2/week or Yes (but has feeling is Never/almost Relaxation, get pain, it's Amal Yes Yes more the pain) about the never, Love, Fear going to go pain") Often/always away when we finish"

Yes, Sometimes Pleasure, (next day), Relaxation, Not too Sometimes ("I Yes, Love, Pain/"Not Lul Yes 50/50 Yes much feel but not too normal a lot of pain", much, been the Shyness, To be same") avoided

No, Often/always 1/week or Relationship, Ayaan Yes Sometimes No (when first got No Pleasure, Love less Intimacy married), Never

Pleasure, Yes, 2/year, Shyness, Pain, Often/always Yes husband No ("it's Fear, Sometimes Fardosa Yes No (pelvic area next (because of visits from okay") "to be avoided", day), pain) USA Feels neutral Often/always about "hate"

No, Sometimes Pleasure, [Declined [Declined [Declined (from Waris Yes No Relaxation, comment] comment] comment] circumcision), Love, Shyness Never

Depends on No (just mood, 1- No, Often (when Pleasure, when first Khadija Yes 2/week Yes Yes first married), Relaxation, got (also busy, Never Love married) kids)

Unsure, When Was afraid Pleasure, No Never/almost husband before Relaxation, (separated never, Amina used to ask No Yes childen, Love, Shyness, from Never/almost (this is the when Fear, Some husband) never (can't culture) infibulated "hate" remember)

No Pleasure, (husband [Declined [Declined [Declined Hakima No No Relaxation, in comment] comment] comment] Love, Shyness Somalia)

No, 2/week, Often/always, Pain, Shyness, more than Maryam Yes No No Sometimes (pain Yes To be avoided, She hates it that doesn't in pelvic area Hate like morning after)

*Never/almost never, ** Associations occasionally, Times selected with sex sometimes, often/always

Pleasure 10

Relaxation 8

Love 10

Pain 4

Shyness 8

Fear 3

To be avoided 3

Hate 2

Table 3: Participant’s responses to questions about sexuality on the medical history

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Table 3 shows information on participants‘ sexual health. Despite reports of sexual pain, ten women were also willing to address enjoyment (two women declined to comment): Four women expressed enjoying sex (including one who also reported pain). Three women did not enjoy sex, and another three were neutral or unsure. When asked to consider a list of words they associated with sex, most participants confirmed pleasure, relaxation, love, and also shyness. A minority of women associated sex with pain, fear and avoidance. Four women experienced vaginal dryness, and four women experienced vaginal infections within the last year.

General Health Questionnaire (GHQ-12)

As presented in Table 2, GHQ-12 scores were low, ranging from 0-4 (mean 1.17) with one participant (with the ceiling score of 4) scoring greater than the recommended caseness of three. The results for the other eleven participants did not indicate psychological distress at the time of the interview or six weeks prior.

SF-MPQ-2 (N = 9)

Table 4 displays the results of the SF-MPQ-2; the responses about diagnoses, surgeries, injuries, general health and pain from the medical history are repeated alongside the SF-MPQ-2 results. Participants completed pain questionnaires for multiple body regions, resulting in a total of twenty questionnaires; since a few participants referred to overlapping regions, twenty-three body regions were implicated. In total, women reported back bain (n=6), whole body pain (n=2); headache (n=3), abdomen (n=4) legs (n=6 of which n=2 for thighs/buttocks or knees, and n=2 for feet or heels/ankle), shoulder (n=1) and wrists (n=1). One participant (Ayaan) did not fill out a form, citing that she has no pain.

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medicalhistories

2 results and participants’ participants’ and results 2

MPQ

- Table 4: SF 4: Table

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The SF-MPQ-2 as a summed instrument resulted in low subscale and overall scores. Table 5 shows the means of subscale scores for the group. Subscale means were as follows (standard deviation): Continuous pain = 1.45 (1.29), intermittent pain = 1.17 (1.35), affective descriptors = 1.43 (1.63) and neuropathic pain = 0.70 (0.64). The low scores are not because participants did not have some sensations that ranked high, but because many pain items were rated as zero suggesting that many of the pain sensations were not salient to our participants. Seven of nine participants ranked at least one pain sensation as 4 or higher (78%). The affective subscale was the highest of the four subscales in half of the completed questionnaires (ten of twenty). The most common descriptor of pain was ―tiring-exhausting‖ (affective), endorsed most often; ―tiring-exhausting‖ was given a numeric value (rather than being negated with a zero) for eleven of twenty SF-MPQ-2 forms, more than any other descriptor. It was also the descriptor with the greatest relative intensity (total score encompassing all participant values: 43.5), followed closely by ―sharp pain‖ (intermittent; 41.5) and then ―aching pain‖ (continuous; 41).

Subscale Mean (SD) Range of participant total scores

Continuous pain 1.45 (1.29) 0.00 - 4.50 Intermittent pain 1.17 (1.35) 0.00 - 5.00 Affective descriptors 1.43 (1.63) 0.00 - 5.00 Neuropathic pain 0.70 (0.64) 0.00 - 2.00

Overall 1.19 (0.35) 0.25 – 2.64

Table 5: SF-MPQ-2 subscale means and ranges for the group. Scores are out of 10.

QST (N = 7)

Table 6 displays the results of QST alongside data on age of FGC, anesthetic use and childbirth (where applicable). From observation of the vulvar region, four women remained partially infibulated with a scar/seal to a greater or lesser extent. On view and without palpating, it appeared that participants had no external clitoris or labia minora. Important trends in the findings are noted and summarized below.

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PPT by vulvar region (grams)

Type of Local Delivery Age of Vulvar 12 Participant anesthetic 3 6 9 FGC appearance o'clock used? (C) C-Section (V) Vaginal

C Lmaj intact, Naima 10 Yes 40 45 80 250 minor stitching

V Lmaj intact, Deqa 9 or 10 Yes 350 300 150 25 stitched

C Ayaan 10 Yes Lmaj intact 500 (+) 400 200 400

Lmaj intact, C Nasra 6 No opened and no 500 (+) 15 25 500 stitching

Lmaj extensively C Amal 9 Yes removed, 250 20 150 200 opened and not stitched

Lmaj intact. V Partially Lul 9 or 10 No 250 500 (+) 300 500 (+) opened/closed, larger introitus

Lmaj partially 1 C/3 V removed, 2/3 Fardosa 7 No 500 (+) 250 250 35 introitus stitched

Mean -- -- 165* --

40 – 15 – 25 – 25- Range 500(+) g 500(+) 300 500(+)

* SD = 94.82 g

Table 6: Results of the QST (vulvalgesiometer). Maxiumum vulvogesiometer recommend in the vulva is 500 g. (Pukall et al., 2007). (+) indicates "touch" at 500g. Shading indicates lowest threshold for participant. Bold indicates highest threshold for participant. For all participants, FGC was observed to be type III, with the clitoris (C) and labia minora (Lmin) removed and labia majora

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(Lmaj) stiched. Stitching refers to infibulation or closing, rather than the suturing of the edges of the Lmaj in deinfibulation (Johnson & Nour, 2007)

For the two lateral (labial) and one anterior (clitoral) sites tested, four participants (Ayaan, Nasra, Lul, Fardosa) still reported ―touch‖ at the maximum recommend pressure [500g(+)], at which point testing was stopped. However, the ranges in PPTs were 15g-500g(+) and 25g-500g(+) for the right and left labial sites. The range for the anterior (clitoral) site was 40g-500g(+), and the range for the posterior site was 80 g – 300g. Four participants had regions for which all pressures were ‗touch‘ up to 500g (towards high threshold), and inversely, all participants had at least one vulvar region for which touch became pain at pressures of lower than 250g (towards low threshold).

A group average was obtained for the posterior site: M = 165g, SD = 94.82 g. If a group average was calculated for the other regions making use of 500 g as a value for regions with 500 g+ (when the threshold would be higher if had testing continued), even using the artificially low means of the other sites for comparison, the posterior site had a far lower threshold for the group.

The most sensitive site per participant is indicated with shading in Table 6. Despite the group sensitivity in the posterior vulvar vestibule, the posterior site was only the most sensitive site for one woman. For the group there was no pattern for the most sensitive site, rather it moved around. The least sensitive site per participant is indicated in bold in Table 6. The clitoral region was the least sensitive for the group; it was the least sensitive site for five of seven women.

DISCUSSION

Medical histories

The data from the socio-demographic and medical histories align with several phenomena already noted in the literature on FGC. The survey found a high incidence of dyspareunia compared to uncircumcised women akin to the NKCHS (2010) systematic review; five out of twelve (41-42%) of our participants reported pain associated with sexual intercourse, while others previously experienced sexual pain. In a non-circumcised North American general population of premenopausal women, Landry and Bergeron (2009) report that large-scale

105 epidemiological studies estimate that prevalence of dyspareunia ranges between twelve and 21%. In a survey among 450 teachers in Ilorin, Nigeria, (without histories of genital surgery) the rate of dyspareunia was twelve percent (Adegunloye & Ezeoke, 2011).

Outside of participants reporting current pain with sexual intercourse, all participants reported sexual pain upon first intercourse, and many had past sexual pain that resolved upon deinfibulation and/or childbirth. While the extent of tissue removal is only known from observation for seven participants who returned for the quantitative visit, two participants who are completely (Nasra, Amal) and two who are partially (Lul, Fardosa) deinfibulated still experience sexual pain. This suggests that sexual pain can persist in spite of deinfibulation – recommended as the treatment to resolve sexual pain (Nour et al., 2006) – suggesting an aetiology other than simply a restricted introitus.

The participants who responded as currently in pain (Nasra, Amal, Maryam, Fardosa; n=4, 33-34%) had the major diagnoses or injuries in the group: arthritis, a coccyx fracture from a car accident, and a prior hernia. These prior injuries are considered further in the discussion of the SF-MPQ-2.

The number of C-section births was high (48.64% of all births in the group). A minority of the births were in Somalia or another country prior to immigration to Canada (such as Italy). In Chalmers‘ and Omer-Hashi‘s (2001) survey of 432 Somali women in Canada about their birth experiences, C-section was wanted by fewer than one percent of the group but was experienced by over fifty percent. The WHO recommends a national C-section rate of maximum ten to fifteen percent (1985) ; in Canada the rate of C-section was recently found to be 25.6% overall for the years 2004–2005 (Public Health Agency of Canada, 2008).

The self-reported health rating appears consistent with other women in Canada; although utilizing a different scale, on a Canadian community health survey from 2007, 65-70% women in Canada aged 25-44 rated their health as excellent or very good, which is comparable to mean of the present study participants of 7.23 out of ten (Ferrao & Williams, 2010).

SF-MPQ-2

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The first row on Table 7 shows the total scores and subscale scores of the SF-MPQ-2 compared with two groups of chronic pain patients presented by Dworkin (2009). The results of the pain questionnaire for our participants show either a lack of painful symptoms or that the instrument used was adequate to describe and measure their pain, or both. Most participants reported relatively low pain ratings for the sensations they felt were descriptive of their pain. The results show a particular absence of neuropathic pain symptoms, and if anything a trend toward affective descriptions. The affective subscale has been predicted by helplessness and pain-related anxiety (Sanchez et al., 2011), and bears higher correlation with the Mental Component Summary (reflecting mental functioning) than the Physical Component Summary (reflecting physical functioning) in the initial development of the SF-MPQ-2 (Dworkin et al., 2009), indicating it may reflect symptoms of depression or anxiety. Yet participants did not report distress in the last six weeks as indicated by the GHQ-1226. Thus, it may be that the affective portion describes how they feel about their pain which, to them, is the most salient issue.

Method Study Participant group Finding / Mean (SD) Present study

Overall: 4.93 (2.04) 1) Respondents on Continuous: 5.82 American Chronic Intermittent: 4.92 Pain Association Neuropathic: 4.26 website Affective: 5.46 Overall: 1.19 (0.35) Continuous: 1.45 (1.29) Dworkin et al. Intermittent: 1.17 (1.35) SF-MPQ-2 (2009) Affective: 1.43 (1.63) Overall: 3.47 (2.17) Neuropathic: 0.70 2) Randomized clinical Continuous: 3.62 (0.64) trial for diabetic Intermittent: 2.89 neuropathy Neuropathic: 3.77 Affective: 3.69

QST of Sutton, Pukall PVD: 162.31 g Women with provoked posterior & Chamberlain (186.62) Control: 165 g (94.82) vestibulodynia (PVD) vulva (2009) 640.87 g (304.86)

Table 7: Comparing the findings of the current study with previous studies

26 Nor did they espouse illness identities or seem to be catastrophizers, as seen in the qualitative interviews.

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Despite low scores, participants did select numerous regions of their bodies to rate. It is notable that despite descriptions of sexual and occasionally vulvovaginal pain in the qualitative interviews, sexual pain on the medical history, and low pressure-pain thresholds in the vulvar region, participants did not mention the vulvar region on the pain questionnaires.

1) Medical history relevant to the SF-MPQ-2

A few injuries or diagnoses may have confounded the SF-MPQ-2 scores. Nasra had the highest SF-MPQ-2 score (2.64 for her back/abdomen), the most regions reported on the SF- MPQ-2 (four), and the lowest (most sensitive) posterior PPT in the vulvar region (25 g) and overall (15 g); she injured her coccyx earlier in life, has irritable bowel syndrome, headaches and arthritis in her foot. Yet that she also reported that she was complaining of abdominal, leg, and lower back pain to her mother before her accident, suggests that her chronic pain is not related to the accident or not exclusively. Another participant with arthritis (Naima), reported three regions on the SF-MPQ-2, had the second most sensitive PPT in the posterior vulvar region (PPT = 80 g), yet had middle-range SF-MPQ-2 scores. In addition, Naima described her pain quality as hot and burning which are neuropathic descriptors not usually associated with arthritic pain (rather, gnawing and aching are favoured), suggesting that she could have chronic pain independent of arthritis (Katz & Melzack, 2011). So ongoing conditions may or may not influence the pain scores, and may bear the same variable relationship to the QST.

The relationship between the measures and diagnoses, surgeries or injuries was inconsistent. Despite having the most sensitive vulvar regions, Nasra also had two vulvar points with PPTs of 500g or higher. Lul, the participant with the highest PPT in the posterior vulvar region (least sensitive; 300 g) also had one of the higher SF-MPQ-2 scores (more painful; 2.27 for headaches).

2) Vulvar pain and the SF-MPQ-2

In one study (Haefner et al., 2000), women with chronic vulvar pain completing the long- form McGill Pain Questionnaire used fewer descriptors (P < 0.001) and had lower total scores and subscale scores (P<0.001) than women with chronic headaches or chronic pelvic pain (P < .0001). Controlling for age, ethnicity and marital status did not alter the significance. This is

108 insightful regarding the descriptive habits evoked by chronic vulvar pain and the nature of vulvar pain if characterized with few and reoccurring descriptors. Yet even so, they did not chose to fill out questionnaires for the vulva, rather, they chose other regions.

3) Cultural and linguistic nuances and the SF-MPQ-2

It is possible that the relevance of the SF-MPQ-2 is mediated by cultural and linguistic nuances around pain. For example, the SF-MPQ-2 is typically used by researchers or health providers among patients with complaints of pain, while in the present study, the instrument was given across a group of participants hypothesized to have pain but not reporting it. It should be noted that the instrument itself is young. To our knowledge, this is also the first use of the SF- MPQ-2 with Somalis either in Somalia or in Diaspora. In fact, the SF-MPQ-2 has not been researched and validated in any African languages or communities. Some words were novel: for example, to the word ―gnawing‖ is not found in Somali and so was translated based on describing a little animal nipping at the heals. Similar difficulties have been found in translating ―gnawing‖ into Hebrew and into Khmer [personal communication with Dr. Ze‘ev Seltzer]).

A predetermined instrument can be beneficial for stimulating thoughts about pain and giving a vocabulary to sensation, using items that have been empirically found relevant to painful symptoms. However it might miss out on original or unique descriptions found in other languages or cultures. In a study of neuropathic pain among amputees in a refugee camp in Sierra Leone, Lacoux & Ford (2002) write that despite translation, stump and phantom pain were described in similar ways to how they are described in other parts of the world. Yet it is unclear as to whether despite the presence of global similarities in description, additional novel descriptors emerged from novel local frames of reference, such as ―pepper‖ in the Sierra Leone refugee group (Lacoux & Ford, 2002). In a related paper, Lacoux et al. (2002) caution that ―problems in translation and explanation may have influenced the low incidence of phantom pain and high incidence of stump pain.‖ In short, translated versions of the SF-MPQ-2 might not have generalizability to other languages for cultural-linguistic reasons (Dworkin, 2009). It would have been interested to see what, if any, words would be elicited from free association, in English and Somali.

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4) Meanings of pain and the SF-MPQ-2

Further dissonance between the participant group and the SF-MPQ-2 may result from differences in how pain is understood, when it is expressed, and expectations of pain, i.e. what kind of pain experiences are presumed throughout life.

On a pain questionnaire, in order for a respondent to will to utilize a descriptor and give it a substantial numeric value, she has to express pain at the threshold the instrument expects, identify (already or newly) with the terms offered, feel that her sensation is out of the ordinary and termed painful, and be consciously aware (already or newly) of the symptom. A common language and habit of pain expression, as well as perception of what is normal must exist between experimenter/instrument and patient. The biomedical language may be novel and previously unavailable in equal measure to different populations. Ideally, the instrument serves as a prompt, a language and forum for re-conceptualising a bodily sensation, potentially offering the ability to express pain and altering consciousness of pain in order to do so. Yet this ideal scenario may not transpire if certain descriptions are not already in conscious awareness or habits of describing are not congruent with the instrument owing to different cultural tendencies.

Noticing pains and then expressing them are socio-culturally embedded thresholds and processes. It has already been noted that writing on Somali conceptualizations of pain indicates a tendency to value stoicism, not to express pain frequently unless requiring immediate attention or experiencing disruption to daily activity (Finnström & Söderhamn, 2006). The CAG confirmed a culture of discouraging crying and complaining among children. The word for pain in Somali (xanuun) may be a loaded term with connotations of illness and disability (Finnström & Söderhamn, 2006); several participants related to the idea of being in pain by responding that they are not sick. It is possible that the affective subscale was most resonant with respondents because all four descriptors omit the word ―pain‖, and also appear relatable to daily life. ―Tiring- exhausting‖ is commensurate with qualitative descriptions of busy and tiring lives among participants.

The method of numerical rating did not seem to bear meaning for participants, perhaps because Somalis have a strong oral culture - as one CAG member said, ―Somalis like to talk.‖

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The comparison of daily pains with the worst pain imaginable (implied by the ten of the NRS) could evoke comparison with FGC, a severity of pain that most people will not experience in their lifetimes. Many Somali women express that FGC was the most painful experience of their lives. The early and acutely painful experience of FGC could be formative to Somali women‘s lifelong relationship to pain.

Despite socio-cultural milieus in which all people are implicated, there is always intra- cultural variability, linked to other positions and identities such as region, class, clan, and the diversity ensuing from these intersections can be greater than intercultural variability (Bates et al., 1995). Although cultural models are formative of individuals, individuals also negotiate culture models based on personal experience (Shore, 1996; Kirmayer & Sartorious, 2007). Additionally, participants in this study are living a North American Diaspora, a different socio- cultural environment from where they lived until adulthood and are subject to acculturation effects. In discussing the pain descriptors, CAG members reflected on several items and realized that they identified with them unlike previously thought, demonstrating both an alternative conceptualization of what is known as pain as well as adaptability for bridging with a new approach.

Overall, pain scales may not bear relevance to all groups, and they require validation among them before use. Dworkin at al., (2009) notes that ―future use of the SF-MPQ-2 should ideally be preceded by qualitative research in the target population to confirm that the item content is appropriate, meaningful, interpretable, and complete given the specific intended use of the measure‖ (p. 41). Finally, more research needs to be done on pain between cultures, which would benefit our understanding of the conditions under which pain develops and their neurophysiologic correlates. From a neurobiological perspective, psychological factors such as attention, arousal, and expectation can alter pain perception and neural processing (Keltner et al., 2006); how socio-cultural meanings, belongings and identities are implicated is a large area yet to be researched.

QST

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Most of what is known about vulvar region pressure-pain thresholds has been ascertained from research on vulvar pain conditions. What is most striking in our study is that all seven women tested had low PPTs in the posterior vulvar vestibule, and that the group mean value was similar to mean values reported among women with provoked vestibulodynia (PVD), a chronic vulvar pain condition (Pukall et al., 2004; 2007). Three other vulvar regions were tested and are reported here, but no previous data exists for comparison of these regions. Another remarkable finding is the wide variability in pain sensitivity within small region of vulva. What follows is a consideration of our findings from QST in relation to vulvar and pelvic pain in women, conditions, mechanisms and prevalence.

1) Vulvar pain conditions and mechanisms

The results of the QST suggest that the participants have low PPTs characteristic of allodynia in several vulvar regions, particularly at the posterior portion of the vulva. The results may experimentally demonstrate what has been noted clinically. Many health workers interviewed in Johansen‘s ethnographic study with Somali women in Norway reported that infibulated women felt extreme pain at the slightest touch to the vaginal area (2002). Similar experiences were reported from an African women‘s clinic in Middlesex, England (Gordon et al., 2007; McCaffrey, 1995). Low PPTs appear in participants who delivered both vaginally and via C-section.

Low PPTs in the vulvar region have been found in women with the most common subtype of vulvodynia or vulvar pain, namely provoked vestibulodynia (PVD, previously known as vulvar vestibulitis). Vulvodynia is chronic vulvar pain (longer than three to six months) without an identifiable cause (National Vulvodynia Association, 2011). PVD is characterized by pain localized to the vulvar vestibule and is thought to be a neuropathic condition (Sutton, Chamberlain, & Pukall, 2009; Tympanidis et al., 2003). As demonstrated using the vulvalgesiometer, women with PVD exhibit tactile allodynia, showing significantly lower PPTs in the vulvar vestibule than control women (Pukall et al., 2007; Pukall et al. 2002. Using other means: Bohm-Starke et al. 2001; Giesecke et al. 2004; Lowenstein et al 2004). In one study using the vulvalgesiometer to test PPTs (Pukall et al. 2007), women with PVD had a mean QST score of 165.3 g (SD = 174.4) for the posterior vulvar vestibule while control women had a mean

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QST score of 820 g (SD = 235.1), (F (1, 28) = 75.01, p<0.001) (see also Table 7 for the similar findings of Sutton, Pukall & Chamberlain, 2009). The present study participants scored similarly to women with this subtype of vulvodynia for the posterior region.

The fact that women in our study reported multiple sites of pain may be indicative of a neuropathic pain condition. Among women with PVD who report low PPTs in the posterior vulvar vestibule, hypersensitivity may be manifested in other vulvar regions and furthermore, in other body regions. Pukall et al. (2002) found that women with PVD tolerated less pressure in the deltoid and tibia that control women. Pukall et al (2009) also notes that, in women with PVD, hypersensitivity is not restricted to the vulvar vestibule. In another study where 23 vulvar regions were tested, a lower pain threshold at the posterior introitus was associated with a lower pain threshold in the entire vulvar region (Giesecke et al., 2004). Giesecke el al. (2004) also found that women with vulvodynia having various vulvar dysasthesias (not limited to the PVD subtype) exhibited significantly increased pressure-pain sensitivity in both the vulvar region and peripheral body regions (deltoid, thumb, shin). In the present study, participants report multiple body regions of pain symptoms on the SF-MPQ-2; reports of multiple body regions is a common clinical presentation among women with PVD, as well as women with other painful conditions such as migraine or fibromyalgia (Danielsson et al., 2000; Pukall et al., 2002).

These phenomena suggest that both peripheral and central nervous system (CNS) mechanisms may play a role in PVD, and that women with type III FGC (infibulation) may develop a similar generalized sensory dysregulation. Other evidence indicating a CNS component in PVD includes greater cortical activation in pain-related regions27 in response to painful stimuli in women with PVD (Pukall et al., 2005). Pathological peripheral mechanisms are suggested by the relative success of vestibulectomy to locally excise innervating fibers (Pukall et al., 2002; Lavy et al. 2005). Tympanidis et al. (2003) found significantly greater nerve density in the posterior vestibule of women with vulvodynia and incidentally found that some study participants experienced relief from the local excision. Women with vulvar pain appear to exhibit pain-maintaining mechanisms throughout the neuroaxis (Pukall et al 2005).

27 Specifically the bilateral midposterior insular cortex, bilateral Brodmann‘s area (BA) 6 (pre-motor cortex), left BA40 (part of parietal cortex) and left anterior insular cortex.

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As an example of generalized, sensory dysregulation, in fibromyalgia patients - who exhibit central sensitization28 and widespread hyperalgesia in the body - are thought to have deficient endogenous pain modulation (Goffaux et al., 2009; Staud, 2011). The excitability of spinal cord neurons is modulated – both inhibited and facilitated - by descending pathways, via serotonin, norepinephrine, and endogenous opioids (Fields & Bausbaum, 1999). Adaptive pain modulation relies on a balance of this system (Staud, 2011, citing Gebhart, 2004). Staud offers that ―[i]t is conceivable that differences in pain modulation may result in local (osteoarthritis, back pain) or widespread pain syndromes (fibromyalgia). (...).Whether abnormal pain modulation is the cause or consequence of these chronic pain disorders, however, is unclear at this time‖ (2011, Epub ahead of print). In other words, it is unclear whether sensory dysregulation can ensure following cutting of the body which results in a widespread pain disorder. Although central sensitization is a common feature of chronic musculoskeletal pain syndromes, ―it is unclear which specific events initiate and maintain central hyperexcitability. (...) There is...no consistent evidence for specific painful events such as trauma or surgery prior to the development of chronic pain‖ (Staud, 2011, citing Vierck Jr, 2006). Therefore, current evidence does not seem to suggest that prior injury or surgery precipitates certain types of musculoskeletal chronic pain disorders and/or the sensory dysregulation associated with them. The current study, however, suggest this might be possible.

The results of the QST in the current study could be indications of more global chronic pain regions or systems dysfunction. The external genitalia, tested in the QST, have sensory characteristics similar to the skin. The skin can be the recipient of a network of referred pain. Pelvic pain is an example of visceral pain that refers to somatic structures such as muscle and skin and is difficult to localize (Wesselman & Czakanski, 2001); The muscular component may be so prominent that pelvic pain can actually be overlooked in favour of attending to back pain, for example (Wesselman & Czakanski, 2001). Partial overlaps of sensory innervations of intestinal, urinary and reproductive organs and significant pain associations between these locations may also complicate both peripheral and central pain perception (Giamberardino,

28 Central sensitization is hyperexcitablity in the dorsal horn of the spinal cord - where sensory input arrives from peripheral body tissues and relays signals to the brain - that is adaptive in the short-term but persists pathologically with chronic pain. ―Central sensitization generally occurs after intense and/or repetitive C-fiber stimulation, resulting in increased excitability of dorsal horn neurons‖ (Staud, 2011, citing Melzack et al., 2001).

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2008). While pelvic pain and vulvar pain are distinct, they can be related and co-morbid (Allaire, 2005).

2) Prevalence of Vulvar and Pelvic Pain

Seven out of seven women tested had at least one vulvar region with pressure-pain thresholds indicative of vulvodynia. North American data suggest that women have about five percent lifetime risk of pelvic pain (Wesslman & Czakanski, 2001), while epidemiological data from the United States reports that 14.7% of women in reproductive ages report chronic pelvic pain (Wesslman, Burnett & Heinberg, 1997). Vulvodynia may affect up to seven percent of women in the general population at a given time in the United States or up to sixteen percent lifetime prevalence (Harlow & Stewart, 2003). In general, little physiological research exists on the frequency of genital pain conditions such as vulvodynia in African or African-American women, while the epidemiological data is inconsistent. Some epidemiological studies report that women of African descent have lower incidences of vulvodynia (Foster, 2000, personal communication cited in Tympanidis et al., 2003). In Haefner et al., (2000) women with vulvar pain were less likely to be African-American (P = .003) as compared to those with chronic pelvic pain and headaches. By contrast, surveying women in an urban population presenting to a university clinic for family planning or gynaecological services, Lavy, Hynan and Haley (2007) found that the prevalence of vulvar pain was similar among women of different racial/ethnic groups (see also Reed et al., 2004; Harlow & Stewart, 2003). Jamieson and Steege report that from among 581 women patients of three primary health care practices in North Carolina African-American women had a greater risk of pelvic pain than Caucasian women (1996). The current study shows that participants have a prevalence of 100% vulvar pain significantly higher than any previously reported study of North American general population. Even if one assumes that only women with vulvar pain allowed themselves to undergo QST, they still account for 50% of our sample which is, again, higher than any other study. This again suggests that cutting of the nerves of the vulvar region in FGC may play a significant role in the etiology of their vulvar pain.

Caveat: Limitations to comparing women with FGC and non-circumcised women with or without vulvodynia

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Importantly, our participant group is differentiated from a non-circumcised population with vulvodynia by a history of genital cutting, a common procedure cutting nerve and muscle in childhood. Vulvodynia is a diagnosis of exclusion in which physiological cause has been ruled out. Where there has been a previous peripheral injury, pain may be triggered in the absence of nocioceptor activation, as injury may lead to nerve sprouting in the presence of nerve growth factor (NGF) and to hyperexcitability (Tympanidis et al, 2003). Interestingly, in Tympanidis et al. (2003), out of twelve participants with vulvodynia, five women had experienced low back injury and pain or major pelvic surgery before their symptoms occurred, where nerve hyperplasia in the peripheral field of nerves injured in surgery may have played a role.

Despite similar PPTs, findings from the current participant group demonstrate a different pain pattern than other non-circumcised women with vulvar pain. In women with PVD, the affected area is predominantly localized to the posterior part of the vulvar vestibule during insertion or provocation (Tympanidis et al 2003). While the posterior region may have been the most sensitive region for the present group as a whole, each participant actually had greater sensitivity in other regions. In contrast, in the current study, participants reporting a history of painful intercourse spoke of their pelvises and abdomens, and occasionally their vaginas. Out of the four vulvar regions tested, the clitoral region appears to be the highest PPT for the participant group; thick scarring may lead to an insensitive response, otherwise high PPTs are surprising because greatest density of nerve fibres were sectioned at the clitoris. In the present study, there was a lot of intra-participant variability comprising different combinations of PPTs with some allodynic and others, average. Yet for the posterior vulvar vestibule, inter-participant variability was comparatively narrow with the standard deviation from the mean of the posterior region narrower than in both the affected and control groups in the studies of Pukall and colleagues.

Perhaps more analogous to the current study group are women with generalized vulvodynia (the other subtype), who experience symptoms in a variety of regions subserved by the pudendal nerve (Murina et al., 2010). Murina and colleagues (2010) explain: ―The pain can be intermittent or constant, it is typically unprovoked, and it worsens with provocation, although pain patterns are highly individualized. The etiology of vulvodynia remains unclear, especially the generalized form‖ (p.221). The diffuse pattern of generalized vulvodynia may be more similar than PVD is to women with type III FGC than PVD. Still, similarity to vulvodynia

116 overall suggest neuropathic symptoms in the current participant group due to the cutting of nerve and muscle. Despite differences, women with FGC may have much etiology and pathobiology in common with certain subpopulations or subtypes of non-circumcised women with vulvar pain.

INTEGRATING FINDINGS FROM ALL METHODS

The initial intention in the current study was to assign qualitative and quantitative methods equal priority. The possibility that methods could assume equal priority is a lesser developed aspect of the mixed-methods research field; it is accommodated in Creswell‘s concurrent triangulation design (Figure 5), but not within the writing of others like Morgan (1998) or Morse and Niehaus (2007). In this study, we did sequential data collection and nearly concurrent data analyses; discussions and analysis of the qualitative data were underway as they were collected, prior to quantitative data collection being finished. Owing to recruitment difficulties, the quantitative sample is too small for hypothesis testing, while the qualitative study reached saturation. Yet descriptive statistics of the available quantitative data afforded a preliminary grasp of outcomes, a pilot for a next step having established the merit of the research. This was valuable particularly given that the research question and associated measurements had never been deployed before, after which subsequent studies would be advised to employ a different recruitment strategy or within a different population. In their analysis, therefore, quantitative data were treated descriptively and qualitatively, (―qualitising‖, Sandelowski, 2000). Similarly, in wanting to have a common understanding of daily pain in the interviews, some quantizing was done of qualitative data through a delicate grading system.

With all the data collected, we were able to accomplish preliminary triangulation, complementarity, and initiation, and offer development towards a future, follow-up study (Greene, Caracelli and Graham, 1989). Finally, akin to the approach of combining data types in Bazaley (2009), we did another analysis across all data and findings for the purposes of mutual illumination. Using what we had, we reflected each method off of one another in order to deepen our understanding of how FGC might affect the whole body of Somali women within the contexts of their lives.

Do the methods show the same results for the group?

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The first aspect of integration was to see if the findings from each approach found the same results. To restate the separate findings:

1) Qualitative interviews showed some pain in participants‘ daily lives but not universally; regardless of pain report, most participants felt healthy and strong, led busy, active and often tiring lives, and did not have an illness identity. Narratives conveyed vivid memories around circumcision – a passage all wanted to take – the commonality of the practice, which is often carried out communally with relatives and/or peers, strong social pressure, and both pride and a flirtation with regret. Immigrating to Canada has contributed to new reflection on what are ―normal bodies‖ and normal sensations.

2) Medical histories showed that a quarter of respondents (4/12) reported current general pain – which, when considered together with diagnoses of painful conditions rose to two thirds (8/12) – and approximately half (5/12) reported current sexual pain. Almost all participants reported being in good health.

3) Pain questionnaire (SF-MPQ-2) showed low scores relative to people with chronic pain suggesting a sample with low intensity or no chronic pain. However, many regions were selected as painful by participants, suggesting many problem areas.

4) Psychophysical testing (QST) showed abnormally low vulvar PPTs in the posterior vulvar vestibule (and potentially other regions) similar to women with chronic vulvar pain, suggesting 1) stimulus-induced, chronic, unreported vulvar pain and 2) FGC- induced changes in peripheral and/or central sensory processing of noxious, punctuate, mechanical inputs from the vulvar region.

Each component shows a spectrum of sensations that may ostensibly agree with one another in describing the group as a sample with greater pain reports than expected of women of the same age and health status but disagree with one another in their particulars. For example, the QST suggests that half of the original group (those who completed QST) have a chronic pain condition while the interviews suggest similar distribution and amount of pain but not in the vulvar region, and accompanied by an overall sense of wellness and no illness-identity.

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Caveat: Separate analyses are not (separate)

It was not possible to conduct entirely separate, analyses without using understandings from other components to mediate. The remarkable variability, even contradiction, within (and as mentioned, between) components invited greater inspection using data from other methods. For example, what does it mean that the SF-MPQ-2 showed low scores but indicated many body regions in pain? Hypothetically, components could modify one another as follows:

1) Qualitative interviews: Participants experienced other symptoms that are not reported (vulvar pain, for example, as indicated by the QST) – perhaps unreported due to the context of the interview, modesty, the view that they are not important, routine forgetting, or denial/suppression for various reasons such as defending one‘s culture and traditions when FGC is perceived as on trial.

2) Physiological testing (QST): Vulvar pain is not a frequent and/or severe symptom for participants and low pressure-pain thresholds are an evoked physiological finding unrelated to daily experiences of pain or indicative of other types or regions of pain. Therefore it is unreported in the free speech of the interviews.

3) Pain questionnaire (SF-MPQ-2): The instrument was not adequate to describe participants‘ pain nor did it reflect their understandings of pain. Scores as they are may be underestimates.

The separate (qualitative, quantitative) discussion sections presented earlier demonstrated how other data/findings were required for interpretation, breaking the compartmentalisations.

Do participants’ individual reports bear continuity between methods?

A second aspect of an integrated analysis was to look at how participants‘ reports continued through each method. Figure 10 shows five participants ranked for severity of symptoms according to each report with a colour-coded line connecting each method the individual completed so her accumulated findings can be traced.

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Figure 10: Qualitative and quantitative responses from five participants. Trends can be followed for individual participants across measures with the help of colour-coding. Participants are ordered by severity of pain symptoms according to each method, where the top of the list is the least severe. For the qualitative interviews, the consensus grade was used. Subjective and objective reports for an individual often grant a different portrait of her health status.

Among the five participants in Figure 10, different measures are inconsistent and not predictable. Only Nasra‘s responses are consistent across methods in reporting daily pain, also affecting her self-concept of health (rated 4.5). At the other extreme (incongruity), Deqa‘s interview is rated less severely (1) and her self-reported health was high at 8.5, but her pain questionnaire and posterior QST are among the most severe; furthermore Deqa was the only participant who reported psychological distress in the last six weeks on the GHQ-12. In summary, Figure 10 illustrates that methods of eliciting pain often deviate from one another.

Table 8 shows two examples of participant values across all methods, noting novel findings that emerge from each method and places of convergence or agreement. Table 8 indicates that for the majority of participants, different methods elicit novel aspects of their physical experience. Figure 10 and Table 8 together are variations of a ―convergence coding matrix‖ described by O‘Cathain, Murphy & Nicholl (2010).

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QUANTITATIVE QUALITATIVE INTERVIEW MEDICAL HISTORY INTERVIEW

Currently in QST (g) General "Pain" pain?/ Ever Circumcision Body in daily life Grade SF-MPQ2 Health describes.... sought help (/10) (12, 3, 6, 9) for pain?

Had group circumcision. She Sensitive, slightly Circumcision requested to have it. Did at a painful neck, can and recovery; clinic where lots of people used also be first to go. Other people went pleasurable. Back intercourse. through a lot of procedures. She bothersome when Did not didn‘t feel different after. lifting. Hard to get experience Back 0.68 40 / 45 / 80 NAIMA Shocked when moved to up in morning, birthing pain. 1 Wrists 1.72 6 N / Y / 250 Canada, and circumcision seen experiences whole- Knees 1.82 as bad. Says ―we feel it's body ache. healthy to be circumcised". Sometimes rests "Accept", no choice, "proud" after work, lies "culture". down. Achy body better on weekend.

Was older than "usual" age of Sharp pain during Circumcision circumcision. Begged mom to sex that runs up and urinating have it. "Most people" have a hip, "not terrible", after; first lady do it at their home; hers sometimes sexual was a different experience, with happens outside of intercourse; doctors and anaesthetic. "I sex. Still some current sex; couldn't feel, most girls feel." menstrual pain, but menstruation; Kids will bully each other. Girls marriage and being Back 1.53 lie that they have circumcision "opened" improved Legs/Feet already. Women wait for it. Aching and pain 250 / 20 / AMAL 3 0.77 6 Y / Y marriage to be "opened", this is in back and 150 / 200 Abdomen the culture. She learned stomach. Always 0.64 circumcision was about culture has back pain, and not religion. Doesn't tell people whole body ache, that went to a doctor to be sometimes worse "opened", is embarrassed . with housework. "This thing." Three problems, Very tired. pains, of circumcision: circumcision itself, menstruation, marriage.

Table 8: Quantitative and qualitative methods elicit novel findings. Findings that arose from only one method (novel findings) are indicated in red, while findings that are corroborated by another method are indicated in blue.

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Summary

To summarize, integrated findings can be divided into substantive and methodological considerations:

Methodological Substantive

Novel information can be elicited through Most importantly, vulvar pain was only elicited different methods. through the QST and not reported via the other instruments. The lack of reporting vulvar pain may reflect that it is not a daily reality for the participants or not a priority. Responses with QST are evoked. Their vulvar pain may only manifest in sexual intercourse or insertional activity (when provoked; some sexual vulvar pain was reported on the medical history and qualitative interview), or may be an indicator of pain felt elsewhere in regions that were reported. Modesty issues may have impacted on reporting; yet seven women were comfortable enough to undergo QST of the vulvar region and most participants discussed sexual pain and pleasure during the qualitative interview and medical history.

Information from different methods can be Most importantly, understanding responses to mutually-illuminating. direct questions about pain (medical history, NRS on the pain questionnaire) required insight into participants‘ attitudes towards pain. This was gathered via the use of qualitative interviews. It could be argued that participants‘ perspectives on pain could have been understood from consulting with the CAG and literature reviewing. However, conducting qualitative interviews to understand participants‘ perspectives was substantially more robust in exhibiting how individuals contemplate social models and process their own experiences. Many participants indicated a tendency to view pain as integral to women‘s lives, as related to sickness, and as related to immobility. These tendencies framed the medical history and SF-MPQ-2, which could now be understood as approached with

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diverging viewpoints from the instruments on when to express and label pain, and when sensation is an ordinary part of life. Descriptors such as ―tiring-exhausting‖ selected on the SF-MPQ-2 were contiguous with participants‘ free speech about their bodies in daily life and women‘s lives in general. This reaffirmed their selection of the descriptor while also suggesting it was either loosely related to pain or that pain is indexed with daily life.

A single measure can have contrasting Participants reported multiple body regions of pieces of information that may need pain symptoms on the SF-MPQ-2, even as they interpreting by other measures. were not highly ranked nor had many pain sensations associated with them. Qualitative interviews helped to confirm painful body regions, to understand participants‘ approaches to pain and to grasp that despite feeling some pain, participants view themselves positively and as healthy. QST gave evoked physiological responses that suggested sensory changes that may underlie pain symptoms and even expressions of feeling healthy. Still, some sites tested with QST exhibited average sensitivity.

Subjective experience can contrast with The personal reports of qualitative interviews objective measures. demonstrated that despite daily discomforts, participants feel good in their bodies and consider themselves to be healthy and strong. Participants did not have an identity or mentality formed around daily pain. This nuance would not have been understood from the QST – where participants might have been seen to experience daily pain – or the SF- MPQ-2 – where participants might have been seen to be pain-free when considering the scores. It may have been gleaned from the medical histories.

Experiences of pain are not always life- Various socio-cultural cues guide people on impeding or necessarily negative; not how to handle, or more subtly when to notice, everyone considers pain intrusive or asks pains and why. Asking for help, if sought, may for medical help. happen at different junctures on the timescale of illness.

Pain is elicited through life stories and On the medical history, participants responded

123 narrative. little to direct questions about pain but rather gave commentary about pain when answering other questions. Within the interviews, despite a general relegation of pain talk (as it related to daily life) to sickness or immobility, pain was discussed universally with regard to life events. Pain talk also unfolded as participants‘ delved further into their stories, gaining momentum and memory. Physical complaints were also marked in relation to events, which have biological, psychological-memorial and symbolic values. Narratives have an ability to access life experiences.

Images can elicit talk on pain where scales Participants circled several body regions on the sometimes do not. SF-MPQ-2, even as they were not highly scored.

Understanding and explaining subjective pain is collaborative process of people and methods.

Instruments need to be culturally relevant and incorporate the value and attitudes of a target group.

LIMITATIONS OF THE STUDY

This is the first study on FGC to focus on chronic pain as a neurobiological consequence of FGC and to address this using qualitative interviews, pain questionnaires, and sensory testing. In that respect it is novel, and its findings important. Yet, we are not able to show that FGC is causative of our findings. The present study is exploratory and there are a number of important limitations that when considered will assist future research on FGC:

First, the sample is small and essentially, one of convenience. This is due to the sensitivity of the topic and the understandable reluctance of women to participate. Participants have been in Canada for a long length of time and results may be different for samples of newer refugees. This may have led to a selection bias in recruitment: Were participants with chronic pain those who participated? We believe that this was not the case, based on the script for recruitment and our CAG‘s insistence that they did not mention pain when recruiting.

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One important goal of this study - in addition to focusing on type III FGC - was to keep it within as culturally a homogeneous group as possible as one of the problems with the literature on FGC is the inclusion of multiple cultures and types of FGC (Obermeyer, 2005). Thus, it became harder to obtain a control group. Among Somali-Canadian women, likely only those born in Canada would not have FGC. To compare those born and raised in Somalia to those raised in Canada and, twenty or more years younger would have introduced too many other variables to consider them a control. Comparing our sample to uncircumcised Canadian women for the purpose of the QST is still problematic, less from the point of view of age than from the perspective of ethnocultural background. Yet the vulvalgesiometer was already utilized with and data obtained from two groups of uncircumsized, Canadian age-matched women (with and without PVD).

SF-MPQ-2

Cultural variations in pain understandings likely affected responses to the SF-MPQ-2. We believe we partially compensated by trying to enter the participants‘ perspectives and health beliefs. Yet without fully uniform conceptualization between participants and instruments/researchers, and absent a pain questionnaire validated in a Somali population, inconsistencies in pain reports between the methods were exacerbated. This highlights a need to research quantitative measures among groups discouraging pain expression and to use multiple methods to elucidate pain.

QST

The fact that the chronic pain we measured is in the region of the circumcision, does not prove that FGC is causative; all our participants had long lives prior to our study with their requisite various experiences including sexual encounters and childbirth. One interesting point however, is that both participants who gave birth via C-section births and vaginally had low PPTs.

Within the literature, insufficient discussion has been allotted to the influence of factors such as expectation and instructions in QST on both examiner performance and participants‘ responses (Backonja et al, 2009). One participant, who said she had no pain (Deqa), retracted her

125 body forcefully when a pressure of 30g was applied. One might assume she was in pain but she specifically said, ―touch‖, and we recorded ―touch‖ according to her report.

In addition, neuropathic pain is characterized by both spontaneous pain symptoms and negative sensory phenomena. Having stopped QST at 500g, it is also unclear whether any negative sensory phenomena – abnormal insensitivity - could have emerged. However, the vulvalgesiometer has not been yet been utilized to gather and interpret hypoalgesia, and hypoalgesia (or negative sensory phenomena) does not appear to be a feature of vulvar pain.

Future research should verify pressure-pain sensitivity and central sensitization by testing distal body regions. A constraint for doing so in this study was that women complained of pain in several regions and ‗neutral‘ sites would have varied between participants.

We tried but were unable to control for menstrual cycle phase. The late follicular phase is typically when vulvar pain studies are conducted, as pain perception varies with the menstrual cycle and at this point vulvar pain thresholds are not as sensitive (Pukall et al. 2007; Riley et al., 1999). Although we tried, in our community sample, it was impossible to schedule women to come in at any particular time of the month. There may have also been prohibitions around discussing the menstrual cycle that entered into booking appointments. Finally, our method for measuring hormones was a urinanalysis and all but one woman were reluctant to pee in a cup.

Finally, interpretation of our findings is constrained by extant knowledge gaps in related fields: neurobiology of pelvic and vulvar pain in women, in particular generalized vulvodynia29; PPTs of multiple vulvar regions in control women and in women with vulvar pain; pelvic and vulvovaginal pain in diverse samples (including African women); and the applicability of pain questionnaires to cultures discouraging pain expression.

CONCLUSIONS

Attempts by the nervous system to recuperate after injury can cause positive sensory phenomena and sensory deficits (Backonja et al, 2009). Often, one negative outcome is chronic

29 Reed et al. (2008) state: ―Until recently, vulvodynia was thought to be rare. Additional studies, however, indicate this is not the case.‖

126 pain. Therefore, chronic pain as well as referred sensation might be considered an ‗assay‘ for neural rewiring, as might altered sites of pleasure, and phantoms (Einstein 2008). For these reasons, post-surgical pain (including phantoms) have been documented with mastectomy for breast cancer or penile ablation for genital cancer, as examples (Einstein, 2008). A traditional body modification may have similar neurobiological consequences; with the acknowledgement of cognitive-emotional-attitudinal factors in pain experience and that material aspects of pain experience are determined partially by aspects of the environment -– the health impacts of FGC need to be examined with a neurobiology that is sensitive to context, interpretation and meaning (Einstein, 2011). FGC has histories and roots, implicating a variety of communal and personal identifications. Additionally, in a cross-cultural research context the definitions and conceptualizations of deeply subjective items like pain (or pleasure) must be considered. Subjective considerations are important if we are to advance what it means for items like expectations or attention to be material in the experience of pain.

In investigating the long-term, neurobiological consequences of FGC, therefore, it can be reasonably assumed that the results will be refracted through physiological injury and make-up as well as through meaning-making activities, socio-cultural referents, and psychological context. It was in this spirit that we used three methods to capture pain reports from women with FGC. The findings of this study suggest that Somali women with type III FGC have a greater chance of experiencing chronic pain in daily life as adults; however, chronic pain in adulthood is not universal in presence or degree, and the report of pain will depend on what methods are used to access it. Even with pain, women also experience pleasure and report active, healthy lives.

This study found known symptoms of vulvar pain with a potentially different pathway or mechanism given the novel pattern: A combination of high- and low- threshold sites within a small region of the vulva, and a more consistent or narrower spread of thresholds within the posterior vulvar regions of the group studied. This is relevant for the field of vulvovaginal and pelvic pain and perhaps even for outcomes for women who elect genital surgery.

Finally, this study demonstrates that expectancy and behaviour around pain are indexed to various socio-cultural variables such as identity or roles, including gender. Moreover, various cultures have different expectations about and behavioural responses to pain that may shape

127 longer-term pain outcomes. This study reinforces that social reference points and are crucial for individuals contemplating their own body experiences of health and illness. Notions of normalcy are significant for individual health. Across many cultures there is a tendency to accept pain in women and this has to been examined in relation to the disproportionate amount of chronic pain conditions in women, as a cause and not as an effect. Taken together with a comprehensive, neuroscientific theory on pain, the implication is that ideas, images, discourses, and attitudes about women‘s bodies have a directly material impact on women‘s health. Importantly, the social interaction of clinical encounters, between health providers and women‘s seeking help for painful symptoms including FGC, could potentially be adverse and iatrogenic if providers are insensitive or dismissive.30

FUTURE DIRECTIONS

A neurobiology sensitive to context

Neurobiological research on pain outcomes needs to continue being mindful of socio- cultural situation, context, meaning and interpretation. Understanding of neurobiological changes due to FGC or other cultural practices, particularly of the development of pain, contributes to the understanding of the conditions under which neuroplasticity leads to pain (maladaptive) or does not. The relationship of interpretation and meaning and furthermore, shifts in interpretation and meaning, to the nervous system and pain, are poorly elucidated (where immigration is a prominent example of a shift). Future research should continue to employ a multidisciplinary perspective to understand what disrupts or enables/supports healthy pain processing in individuals as embodied psyches in socio-cultural context. This is an area for bridging between the social and basic pain sciences.

FGC and the whole neuroaxis

Future research on the long-term, neurobiological consequences of FGC should continue to address altered sensory processing leading to ongoing pain and in particular, vulvar pain.

30 The work of researchers examining the overlap between social and physical pain is illustrative (i.e. DeWall, MacDonald, et al., 2010).

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Advances in peripheral neuroimaging may illuminate in detail neuroplastic changes that ensue as a result of the initial cutting; tools such as fMRI may illuminate central changes, including to spinal nuclei, to novel locations of cortical activation or hyperactivation of common cortical regions, and to somatotopic maps after removal of highly innervated tissues (clitoris) with manifestations in the form of phantoms as well as a profound effect on the sense of one‘s body in space (Einstein, 2008). Thus, owing to the latter, to change culture is to literally change the mind—which might explain why it is so difficult to change any human cultural tradition.

Future research should encompass:  Pain thresholds of distal body regions  A control group, potentially recruiting younger women whose age cohort might comprise circumcised and un-circumsised women . Such research is encouraged to be collaborative or community-oriented  Testing of participants at the same time points in their menstrual cycles  Epidemiological studies examining the prevalence of chronic pain in different contexts (Diaspora, natal countries)

Other goals and applications

Our results act as a pilot exploration of a valuable area of research for future work, working towards the following goals and applications:

For FGC and health:  Improving our understanding of FGC  Improving clinical encounters for women with FGC by generating knowledge, awareness, respect and sensitivity  Enabling dialogue between women regarding FGC

For research into pain:  Improving knowledge of pelvic and genital pain in women o Improving our understanding of current elective cosmetic surgeries such as vaginoplasty/labioplasty or vulvectomy for cancer  Understanding what widespread changes occurs through central neural rewiring when we modify one part of body  Promoting respect for personal narratives about the body in pain  Understanding different attitudes towards pain, pain expression and towards utilizing the medical system for pain management o Validating of pain questionnaires among groups discouraging pain expression  Considering socio-cultural processes in the development and maintenance of chronic pain o Utilization of phenomenology for this purpose

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 Establishing bridges between biomedical and social pain sciences  Denaturalizing pain in women and empowering women in their personal and collective health  Further the development of mixed methodologies, including strategies for the integration of findings from different components

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BIBLIOGRAPHY

Abdalla, R.D. (2006). ―My grandmother called it the three sorrows‖: The struggle of women against female circumcision in Somalia. In R.M. Abusharaf, Female circumcision: A multicultural perspective. Philadelphia: University of Pennsylvania Press.

Adan, A. H. (1996). Women and words: The role of women in Somali oral literature. Comparative Studies of South Asia, Africa and the Middle East, 2, 81-92.

Adegunloye, O. A., & Ezeoke, G. G. (2011). Sexual-dysfunction – A silent hurt: Issues on treatment awareness. The Journal of Sexual Medicine, 8(5), 1322-1329.

Ahmed, A. G., & Salib, E. (1998). The khat users: a study of khat chewing in Liverpool‘s Somali men. Medicine, Science and the Law, 38(2), 165-169.

Allaire, C., & Taezner, P. (2005). History-taking, physical examination, and psychological assessment. In Society of Gynecologists and Obstetricians of Canada Consensus Guidelines For The Management Of Chronic Pelvic Pain: Part I (pp.785-789).

Almroth, L., Elmusharaf, S., El Hadi, N., Obeid, A., El Sheikh, M. A., Elfadil, S. M., & Bergström, S. (2005). Primary infertility after genital mutilation in girlhood in Sudan: A case-control study. Lancet, 366(9483), 385-391.

Alsibiani, S. A., & Rouzi, A. A. (2010). Sexual function in women with female genital mutilation. Fertility and Sterility, 93(3), 722-724.

Arbesman, M., Kahler, L., & Buck, G. M. (1993). Assessment of the impact of female circumcision on the gynecological, genitourinary and obstetrical health problems of women from Somalia: Literature review and case series. Women’s Health, 20(3), 27-42.

Ashworth, P. (1993) Participant agreement in the justification of qualitative findings. Journal of Phenomenological Psychology, 24, 1-16.

Auvray, M., Myin, E., & Spence, C. (2010). The sensory-discriminative and affective- motivational aspects of pain. Neuroscience and Biobehavioral Reviews, 34, 214-223.

Backonja, M.M, Walk, D., Edwards, R. R., Sehgal, N., Moeller-Bertram, T., Wasan, A., Irving, G., Argoff, C., & Wallace, M. (2009). Quantitative sensory testing in measurement of neuropathic pain phenomena and other sensory abnormalities. Clinical Journal of Pain, 25(7), 641-647.

Bates, M. S. (1987). Ethnicity and pain, a biocultural model. Social Science and Medicine, 24(1), 47–50.

131

Bates, M.S., Rankin-Hill, L., Sanchez-Avendez, M., Mendez-Bryan, Y. (1995) A cross-cultural comparison of adaptation to chronic pain among Anglo-Americans and native Puerto Ricans. Medical Anthropology, 16(2):141-73.

Bazeley, P. (2009). Integrating data analyses in mixed methods research. Journal of Mixed Methods Research, 3(3), 203-207.

Bazeley, P. (2009). Mixed methods data analysis. In S. Andrew & E. Halcomb, (Eds.), Mixed methods research for nursing and the health sciences (pp. 84-118). Chichester, UK: Wiley-Blackwell.

Bee, S., and Harkin, A., (2011). Eating over the kitchen sink. Retrieved from http://blogs.babble.com/babble-voices/samantha-bee-allana-harkin-eating-over- the-sink/

Bendelow, G. A. (2000). Pain and gender. London, UK: Prentice Hall.

Bendelow, G. A., & Williams, S. J. (1995). Transcending the dualisms: Towards a sociology of pain. Sociology of Health & Illness, 17(2), 139-165.

Berkely, K. J. (1997). Sex differences in pain. Behavioural and Brain Sciences, 20, 371-380.

Bohm-Starke, N., Milliges, M., Brodda-Jansen, G., Rylander, E., & Torebjörk. (2001). Psychophysical evidence of nociceptor in vulvar vestibulitis syndrome. Pain, 94(2), 177-183.

Bordo, S. (1995). Unbearable weight. Berkeley, California: University of California Press.

Brennan, F., Carr, D.B., Cousins, M. (2007). Pain management: A fundamental human right. Anesthesia and analgesia, 105(1):205-221.

Brykczynski, K., & Benner, P. (2009). The living history of interpretive phenomenology. In G. Chan, K. Brykczynski, R. Malone, & P. Benner (Eds.), Interpretive Phenomenology in Health Care Research.

Busatta, S. (2008). Performing the eradication of infibulations: Mana Abdurahman Isse at Merka, Somalia. Antrocom, 4(2), 139-144.

Carroll, J. K. (2004). Murug, waali, and gini: Expressions of distress in refugees from Somalia. Primary Care Companion to the Journal of Clinical Psychiatry, 6(3), 119-125.

Cassel, E. J. (1982). The nature of suffering and the goals of medicine. New England Journal of Medicine, 306, 639-645.

132

Catania, L., Abdulcadir, O., Puppo, V., Verde, J. B., Abdulcadir, J., & Abdulcadir, D. (2007). Pleasure and orgasm in women with female genital mutilation/cutting (FGM/C). The Journal of Sexual Medicine, 4(6), 1666-1678.

Chalmers, B., & Omer-Hashi, K. (2000). 432 Somali women‘s birth experiences in Canada after earlier female genital mutilation. Birth, 27(4), 227-234.

Chapman, C. R., & Gavrin, J. (1993). Suffering and its relationship to pain. Journal of Palliative Care, 9(2), 5-13.

Chapman C.R. (1990). On the neurobiological basis of suffering. Behavarioual and Brain Sciences, 13(1):16-17.

Chapman, C. R. (2003). Why does pain hurt? Project-Syndicate: A World of Ideas. Retrieved from http://www.project-syndicate.org/commentary/chapman1/English

Chapman, C. R., Nakamura, Y., & Flores, L. Y. (1999). Chronic pain and consciousness: A constructivist perspective. In R. J. Gatchel, & D. C. Turk (Eds). Psychosocial factors in pain: Critical perspectives (pp. 35-55). New York: Guilford Press.

Creswell, J. W. (2007). Qualitative inquiry & research design: Choosing among five approaches (2nd ed.). Thousand Oaks, California: Sage Publications, Inc.

Creswell, J. W. (2009). Research design: Qualitative, quantitative, and mixed methods approaches (3rd ed.).Thousand Oaks, California: Sage Publications, Inc.

Csordas, T. (1994). Embodiment and experience: The existential ground of culture and self. Cambridge: Cambridge University Press.

Csordas, T. (1999). Embodiment and cultural phenomenology. In G. Weiss, & H. F. Haber (Eds). Perspectives on embodiment: The intersections of nature and culture (pp. 143- 164). London: Routledge.

Csordas, T. (2002). Embodiment as a paradigm for anthropology. In Body/Meaning/Healing (pp.58-87). New York: Palgrave Macmillan.

Cohen, M. Z., Kahn, D. L., & Steeves, R. H. (2000). Hermeneutic phenomenological research: A practical guide for nurse researchers. Thousand Oaks, California: Sage Publications, Inc.

Dalhberg, K., Dalhberg, H., & Nystrom, M. (2008). Reflective lifeworld research (2nd ed). Lund, Sweden: Studentlitteratur.

Danielsson, I., Sjöberg, I., & Wikman, M. (2001). Vulvar vestibulitis: Medical, psychosexual and psychosocial aspects, a case-control study. Acta Obstetricia et Gynecologica Scandinavica, 79(10), 872-878.

133

Denzin, N. K., & Lincoln, Y. S. (2005). Introduction: The discipline and practice of qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds). Handbook of qualitative research (3rd ed.). Thousand Oaks, California: Sage Publications, Inc.

Dirie, A. M., & Lindmark, G. (1992). The risk of medical complications after female circumcision. East African Medical Journal, 69(9), 479-482.

Douglas, A. (2000).The mother of all pregnancy books. Toronto: Macmillan Canada.

Doughman, A. (2011). For Somali women, health program eases the pain of war, exile. Health Intersections. Retrieved from http://depts.washington.edu/hjourn/2011/04/18/for- somali-women-health-program-eases-the-pain-of-war-exile/

Dworkin, R. H., Turk, D. C., Revicki, D. A., Harding, G., Coyne, K. S., Peirce-Sandner, S., Bhagwat, D., Everyton, D., Burke, L. B., Cowan, P., Farrar, J. T., Hertz, S., Max, M. B., Rappaport, B. A., & Melzack, R. (2009). Development and initial validation of an expanded and revised version of the Short-form McGill Pain Questionnaire (SF-MPQ- 2). Pain, 144(1-2), 35-42.

Einstein, G. (2008). From body to brain: Considering the neurobiological effects of female genital cutting. Perspectives in Biology and Medicine, 51(1), 84-97.

Einstein, G. (2011). Situated neuroscience: Exploring a biology of diversity. In R.Bluhm, H. Maibom, & A. Jaap Jacobson (Eds.), Neurofeminism: Issues at the Intersection of Feminist Theory and Neuroscience. New York: Palgrave (forthcoming).

El-Defrawi, M., Lotfy, G., Dandash, K. F., Refaat, A. H., & Eyada, M. (2001). Female genital mutilation and its psychosexual impact. Journal of Sex and Marital Therapy 27(5), 465– 473.

Essen, B., Sjobery, N., Gudmundsson, S., Ostergren, P., & Lindgvist, P. G. (2005). No association between female circumcision and prolonged labour: A case control study of immigrant women giving birth in Sweden. European Journal of Obstetrics & Gynecology and Reproductive Biology, 121(2), 182-185.

Ferrao, V. & Williams, C. (1985). Women in Canada: A gender-based statistical report. (6th ed.) Ottawa: Statistics Canada.

Fernández-Aguilar, S., & Noël, J.C. (2003). Neuroma of the clitoris after female genital cutting. Obstetrics & Gynecology, 101, 1053–1054.

Fields, H.L. (2007). Setting the state for pain: Allegorical tales from neuroscience. In S. Coakley & K. Kaufman Shelemey (Eds). Pain and its transformations: The interface of biology and culture (pp.64-66). Cambridge, Massachusetts: Harvard University Press.

134

Finkler, K. (1994) Women in pain: Gender and morbidity in Mexico. Philadelphia: University of Pennsylvania Press.

Finlay, L. (2008). Introducing phenomenological research. Retrieved from http://www.lindafinlay.co.uk/phenomenology.htm

Finlay, L. (2009). Debating phenomenological research methods. Phenomenology and Practice 3, 6-25.

Finnström, B., & Söderhamn, O. (2006). Conceptions of pain among Somali women. Journal of Advanced Nursing, 54(4), 418-425.

Ford, N. (2001). Tackling female genital cutting in Somalia. Lancet, 358(9288), 1179.

Gaston-Johansson, F., Albert, M., Fagan, E., & Zimmerman, L. (1990). Similarities in pain descriptions of four different ethnic-culture groups. Journal of Pain and Symptom Management, 5(2), 94-100.

Giamberardino, M. A. (2008). Women and visceral pain: Are the reproductive organs the main protagonists? Mini-review at the occasion of the ―European week against pain in women 2007‖. European Journal of Pain, 12(3), 257-260.

Gibeau, A. M. (1998). Female genital mutilation: When a cultural practice generates clinical and ethical dilemmas. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 27(1), 85-91.

Giddings, L. S., & Grant, B. M. (2009). From rigour to trustworthiness: Validating mixed methods. In S. Andrew, E. J. Halcomb (Eds). Mixed Methods Research for Nursing and the Health Sciences (pp. 119-134). Oxford: Blackwell Publishing Ltd.

Giesecke, T., Reed, B.D., Haefner, H.K., Giesecke, T., Clauw, D.J., & Gracely, R. H. (2004). Quantitative sensory testing in vulvodynia patients and increased peripheral pressure pain sensitivity. Obstetrics and Gynecology, 104(1), 126-33.

Giorgi, A. (2006). The value of phenomenology for psychology. Phenomenology and Psychological Science, 45-68.

Glaser, B., & Strauss, A., (1967). The discovery of grounded theory. Hawthorne, NY: Aldine Publishing Company.

Goffaux, P., de Souza, J.B., Potvin, S., Marchand, S. (2009). Pain relief through expectation supersedes descending inhibitory deficits in fibromyalgia patients. Pain, 145(1-2):18- 23.

Goldberg, D. P. (1972). The detection of psychiatric illness by questionnaire. Oxford University Press: London.

135

Goldberg, D. P. (1992). A classification of psychological distress for use in primary care settings. Social Science & Medicine, 35(2), 189-193.

Goldberg, D. P., Gater, R., Sartorius, N., Ustun, T. B., Piccinelli, M., Gureje, O., & Rutter, C. (1997). The validity of two versions of the GHQ in the WHO study of mental illness in general health care. Psychological Medicine, 27, 191-197.

Goldenberg, M. (2008). Clinical evidence and the absent body in medical epistemology: On the need for a new phenomenology of medicine. International Journal of Feminist Approaches to Bioethics, 3(1):43-71.

Gordon, H., Comerasamy, H., and Morris, N. H. (2007) Female genital mutilation: Experience in a West London clinic. Journal of Obstetrics and Gynaecology, 27:4, 416-419.

Grace, V. M. (2000). Pitfalls of the medical paradigm in chronic pelvic pain. Best Practice & Research Clinical Obstetrics & Gynaecology, 14(3), 525-539.

Grace, V. (2003). Embodiment and meaning: Understanding chronic pelvic pain. Journal of Consciousness Studies, 10(20):41-60.

Grace, V. M., & MacBride-Stewart, S. (2007). ‗Women get this‘: gendered meanings of chronic pelvic pain. Health, 11(1):47-67.

Grace, V. (2007) Beyond dualism in the life sciences: Implications for a feminist critique of gender-specific medicine. Journal of Interdisciplinary Feminist Thought, 2(1), 20pp. Available online at http://escholar.salve.edu/jift/vol2/iss1/1

Grafton, K. V., Foster, N. E., & Wright, C. C. (2005). Test-retest reliability of the short-form McGill pain questionnaire: Assessment of intraclass correlation coefficients and limits of agreement in patients with osteoarthritis. Clinical Journal of Pain, 21(1):73-82.

Green, J. C., Caracelli, V. J., & Graham, W. F. (1989). Toward a conceptual framework for mixed-method evaluations designs. Educational Evaluation and Policy Analysis, 11(3):225-274.

Grosz, E. (1994). Volatile bodies: Toward a corporeal feminism. Bloomington: Indiana University Press.

Gruenbaum, E. (2001). The female circumcision controversy: An anthropological perspective. Philadelphia: University of Pennsylvania Press.

Gruenbaum, E. (2005). Socio-cultural dynamics of female genital cutting: Research findings, gaps, and directions. Culture, Health and Sexuality, 7(5):429-441.

Gruenbaum, E. (2006). Sexuality issues in the movement to abolish female genital cutting in Sudan. Medical Anthropology Quarterly, 20(1), 121-138.

136

Haefner, H. K., Khoshnevisan, M. H., Backman, J. E., Flowe-Valencia, H. D., Green, C. R., & Reed, B. D. (2000). Use of the McGill Pain Questionnaire to compare women with vulvar pain, pelvic pain and headaches. Journal of Reproductive Medicine, 45(5):665-671.

Harding, S. (1987). Introduction: Is there a feminist method? In S. Harding (Ed). Feminism and methodology: Social science issues (p. 1-14). Bloomington: Indiana University Press.

Harlow, B. L., & Stewart, E. G. (2004). Adult-onset vulvodynia in relation to childhood violence victimization. American Journal of Epidemiology, 161(9):871-880.

Helander, B. (1995). Disability as incurable illness: Health, process, and personhood in Southern Somalia. In B. Ingstad, and S. R. Whyte (Eds). Diasbility and culture (pp. 73-93). Berkeley, California: University of California Press.

Hernlund, Y., & Shell-Duncan, B. (2007). Transcultural bodies: Female genital cutting in global context. New Jersey: Rutgers University Press.

Honkasalo, M.L. (1998). Space and embodied experience: Rethinking the body in pain. Body & Society, 4(2), 35–57.

Hosken, F. P. (1978). Women and health: Female circumcision. Women’s International Network News, 4(4):39-44.

Hoyt Jr., R. F. (2006). Innervation of the vagina and vulva. In I. Goldstein, C. M. Meston, S. R. Davis, & A. M. Traish (Eds). Women’s sexual function and dysfunction: Study, diagnosis and treatment (pp.113-122). Oxon: Taylor & Francis Group.

International Association for the Study of Pain [IASP] (2007). Global Year Against Pain in Women Factsheets. Retrieved from http://www.iasp- pain.org/AM/Template.cfm?Section=Fact_Sheets&Template=/CM/HTMLDisplay.cfm &ContentID=4448

IASP Committee on Taxonomy (2011). IASP taxonomy. Retrieved from http://www.iasp- pain.org/Content/NavigationMenu/GeneralResourceLinks/PainDefinitions/default.htm

Irigaray, L. (1977). Ce sexe qui n’en est pas un. Paris: Minuit. (English trans. This Sex Which is Not One, trans. Catherine Porter with Carolyn Burke; Ithaca, NY: Cornell University Press, 1985.)

Institute of Medicine Forum on Neuroscience and Nervous System Disorders (2011). Sex differences and implications for translational neuroscience research: Workshop summary. Washington D.C., The National Academies Press

Jamieson, D. J. & Steege, J.F. (1996). The prevalence of dysmenorrheal, dyspareunia, pelvic pain, and irritable bowel syndrome in primary care practices. Obstetrics & Gynecology, 87(1), 55-58.

137

Johansen, R. E. B. (2002). Pain as a counterpoint to culture: Toward an analysis of pain associated with infibulations among Somali immigrants in Norway. Medical Anthropology Quarterly,16(3):312-340.

Johansen, R. E. B. (2006). Care for infibulated women giving birth in Norway: An anthropological analysis of health workers‘ management of medically and culturally unfamiliar issue. Medical Anthropology Quarterly, 20(4):516-544.

Johansen, R. E. B. (2007). Experiencing sex in exile: Can genitals change their gender? In Y. Hernlung, & B. Shell-Duncan (Eds). Transcultural bodies: female genital cutting in global context (pp. 248-277). New Jersey: Rutgers University Press.

Johansson, E. E., Hamberg, K., Westman, G., & Lindgren, G. (1999). The meanings of pain: An exploration of women's descriptions of symptoms. Social Science & Medicine, 48(12):1791-1802.

Johnson, C. (2009). Female genital cutting. In A. T., Goldstein, C. F., Pukall, & I. Goldstein (Eds.). Female sexual pain disorders (pp. 235-243). Oxford: Blackwell Publishing.

Johnson, C. & Nour, N.M. (2007). Surgical techniques: Defibulation of type III female genital cutting. Journal of Sexual Medicine, 4(6):1544-7.

Johnson, R. B., & Onwuegbuzie, A. J. (2004). Mixed methods research: A research paradigm whose time has come. Educational Researcher, 33(7):14-26.

Katz, J., & Melzack, R. (2011). The McGill Pain Questionnaire: Development, psychometric properties, and usefulness of the long-form, short-form, and short-form-2. In D.C. Turk & R. Melzack (Eds.), Handbook of pain assessment (3rd ed.). New York: Guilford Press

Katz, R., Stephen, J., Shaw, B. F., Matthew, A., Newman, F., & Rosenbluth, M. (1995). The East York health needs study I: Prevalence of DSM-III-R psychiatric disorder in a sample of Canadian women. British Journal of Psychiatry, 166, 100-106.

Keltner, J. R., Furst, A., Fan, C., Redfern, R., Inglis, B., & Fields, H. L. (2006). Isolating the modulatory effect of expectation on pain transmission: A functional magnetic resonance imaging study. The Journal of Neuroscience, 26(16):4437-4443.

Kleinman, A. & Becker, A. (1998). Sociosomatics: The contributions of anthropology to psychosomatic medicine. Psychosomatic Medicine, 60(4):389-393.

Kirmayer, L.J., & Sartorius, N. (2007). Cultural models and somatic syndromes. Psychosomatic Medicine, 69(9):832-840.

Lacoux, P. & Ford, N. (2002). Treatment of neuropathic pain in Sierra Leone. Lancet Neurology, 1(3):190-5.

138

Lacoux, P., Crombie, I.K., Macrae, W.A. Pain in traumatic upper limb amputees in Sierra Leone. Pain, 99(1-2):309-312.

Landry, T. & Bergeron, S. (2009). How young does vulvo-vaginal pain begin? Prevalence and characteristics of dyspareunia in adolescents. Journal of Sexual Medicine, 6(4):927-35.

Lavy, R. J., Hynan, L. S., & Haley, R. W. (2007). Prevalence of vulvar pain in an urban, minority population. Journal of Reproductive Medicine, 52(1):59-62.

Leder, D. (1990). The absent body. Chicago: University of Chicago.

Leonard, L. (2000). Adopting female ―circumcision‖ in southern Chad: The experience of the Myabe. In B. Shell-Duncan & Y. Hernlund (Eds.), Female “circumcision” in Africa: Culture, controversy, and change (pp. 167–192). Boulder, Colorado: Lynne Rienner Publishing.

Lowenstein, L., Vardi, Y., Deutsch, M., Friedman, M., Gruenwald, I., Granot, M., Sprecher, E., & Yarnitsky, D. (2004). Vulvar vestibulitis severity: Assessment by sensory and pain testing modalities. Pain, 107(1-2):47-53.

Marecek, J., Fine, M., & Kidder, L. (2010). Working between worlds: Qualitative methods and social psychology. Journal of Social Issues, 53(4):631-644.

Marshall, C., & Rossman,G. (1999). Designing qualitative research (3rd ed.). Thousand Oaks, California: Sage Publishing, Inc.

McCaffrey, M. (1995). Female genital mutilation: Consequences for reproductive and sexual health. Sexual & Marital Therapy, 10(2):189-200.

Mechlin, M. B., Maixner, W., Light, K. C., Fisher, J. M., & Gidler, S. S. (2005). African Americans show alterations in endogenous pain regulatory mechanisms and reduced pain tolerance to experimental pain procedures. Psychosomatic Medicine, 67, 948–956.

Medlinger, S., & Cwikel, J. (2008). Spiraling between qualitative and quantitative data on women‘s health behaviours: A double helix model for mixed methods. Qualitative Health Research, 18(2):280-293.

Megafu, U. (1983). Female ritual circumcision in Africa: An investigation of the presumed benefits among Ibos of Nigeria. East Africa Med. Journal, 40(11):793-800.

Melzack, R. (1987). The short-form McGill pain questionnaire. Pain, 30(2):191-197.

Melzack, R. (2001). Pain and the neuromatrix in the brain. Journal of Dental Education, 65(12): 1378-1382

Melzack, R., & Casey, K. L. (1968). Sensory, motivational and central control determinants of

139

pain. In D. R. Kenshalo. The skin senses. Springfield, Illinois: Charles C. Thomas.

Melzack, R. & Wall, P. D. (1965). Pain mechanisms: A new theory. Science, 150, 971-979.

Melzack, R., & Wall, P. D. (1996). Pain mechanisms: A new theory: a gate control system modulates sensory input from the skin before it evokes pain perception and response. Pain forum, 5(1):3-11.

Merleau-Ponty, M. (1962). Phenomenology of perception (C. Smith, trans.). London: Routledge.

Momoh, C. (2005). Female genital mutilation. Oxford: Radcliffe Publishing Ltd.

Moran-Ellis, J., Alexander, V. D., Cronin, A., Dickinson, M., Fielding, J., Sleney, J., & Thomas, H. (2006). Triangulation and integration: processes, claims and implications. Qualitative Research, 6(1): 45-59.

Morgan, D. L. (1998). Practical strategies for combining qualitative and quantitative methods: applications to health research. Qualitative Health Research, 8(3):362-376.

Morison, L., Scherf, C., Ekpo, G., Paine, K., West, B., Coleman, R., & Walraven, G. (2001). The long-term reproductive health consequences of female genital cutting in rural Gambia: A community-based survey. Tropical Medicine and International Health, 6(8):643-653.

Morris, D. B. (1991). The Culture of Pain. Berkeley: University of California Press.

Morris, D. B. (1998). Illness and Culture in the Postmodern Age. Berkeley: University of California Press.

Morse, J.M. (1991). Approaches to qualitative-quantitative methodological triangulation. Nursing Research, 40(2):120-123.

Morse, J. M. (1994). Designing funding qualitative research. In N. K. Denzin, & Y. S. Lincoln (Eds). Handbook of qualitative research (pp. 220-235). Thousand Oaks, California: Sage Publications, Inc.

Morse, J.M. & Niehaus, L. (2007). Combining qualitative and quantitative methods for mixed- method design. In, P.L. Munhall (Ed), Nursing research: a qualitative perspective (4th ed.) (pp. 541-554). Boston: Jones and Bartlett.

Munhall, P. L. (2007). A phenomenological method. In P. L. Munhall (Ed). Nursing research: a qualitative perspective (4th ed.) (pp.145-150). Mississauga, Ontario, Canada: Jones and Bartlett Publishers, Inc.

Murina, F. Bianco, V. Radici, G. Felice, R. Signaroldi, M. (2010). Electrodiagnostic functional sensory evaluation of patients with generalized vulvodynia: A pilot study. Journal of Lower Genital Tract Disease, 14(3):221-224.

140

Ness S. M. (2009). Pain expression in the perioperative period: Insights from a focus group of Somali women. Pain Management Nursing, 10(2):66-75.

Norlyk, A., & Harder, I. (2010). What makes a phenomenological study phenomenological? An analysis of peer-reviewed empirical nursing studies. Qualitative Health Research, 20(3): 420-431.

Nour, N. M., Michels, K. B., & Bryant, A. E. (2006). Defibulation to treat female genital cutting: Effect on symptoms and sexual function. Obstetrics & Gyenecology, 108(1):55-60.

Berg, R.C., Denison, E., Fretheim, A. (2010). Psychological, social and sexual consequences of female genital mutilation/cutting (FGM/C): A systematic review of quantitative studies. Norwegian Knowledge Center for the Health Services.

Obermeyer, C. M. (1999). Female genital surgeries: The known, the unknown, and the unknowable. Medical Antrhopology Quarterly, 13, 79-106.

Obermeyer, C. M. (2005). The consequences of female circumcision for health and sexuality: An update on the evidence. Culture Health & Sexuality, 7(5):443-461.

O‘Cathain, A., Murphy, E., & Nicholl, J. (2010). Three techniques for integrating data in mixed methods studies. British Medical Journal, 341, 1147-1150.

Okonofua, F. E., Larsen, U., Oronsaye, F., Snow, R. C., & Slanger, T. E. (2002). The association between female genital cutting and correlates of sexual and gynaecological morbidity in Edo State, Nigeria. International Journal of Obstetrics and Gynecology, 109, 1089- 1096.

Pevalin, D. J. (2003). Intra-household differences in neighbourhood attachment and their associations with health. In A. Morgan (Ed). Social capital for health: Insights from quantitative research. London: Health Development Agency.

Polkinghorne, D. E. (1983). Methodology for the human sciences: Systems of inquiry. Albany: State University of New York Press.

Pukall, C. F., Binik, Y. M., Khalifé, G., Amsel, R., & Abbott, F. V. (2002). Vestibular tactile and pain thresholds in women with vulvar vestibulitis syndrome. Pain, 96, 163-175.

Pukall, C. F., Binik, Y. M., & Khalifé, S., (2004). A new instrument for pain assessment invulvar vestibulitis syndrome. Journal of Sex and Marital Therapy, 30, 69-78.

Pukall, C. F., Strigo, I. A., Binik, Y. M., Amsel, R., Khalifé, S., & Bushnell, M. C. (2005). Neural correlates of painful genital touch in women with vulvar vestibulitis syndrome. Pain, 115(1-2), 118-127.

141

Pukall C. F., Young, R. A., Roberts, M. J., Sutton, K. S., Smith, K. B. (2007). The vulvalgesiometer as a device to measure genital pressure-pain threshold. Physiological Measurement, 28, 1543-1550.

Public Health Agency of Canada (2008). Canadian Perinatal Health Report, 2008 Edition. Ottawa: Public Health Agency of Canada.

Public Health Resource Unit England [PHRU] (2006). Critical Appraisal Skills Program tool for evaluating qualitative research. Retrieved from http://www.sph.nhs.uk/sph-files/casp- appraisal-tools/Qualitative%20Appraisal%20Tool.pdf

Reed, B. D., Crawford, S., Couper, M., Cave, C., & Haefner, H. K. (2004). Pain at the vulvar vestibule: A web-based survey. Journal of Lower Genital Tract Disease, 8(1):48-57.

Reed, B. D., Haefner, H. K., Sen, A., & Gorenflo, D. (2008). Vulvodynia incidence and remission rates among adult women: A 2-year follow-up study. Obstetrics & Gynecology, 112(2-1):231-237.

Riley 3rd, J. L., Robinson, M. E., Wise, E. A., & Price, D. (1999). A meta-analytic review of pain perception across the menstrual cycle. Pain, 81(3), 225-235.

Ritchie, J., & Lewis, J. (2003). Qualitative research practice. A guide for social scientists. London: Sage.

Rymer, J. & Momoh, C. (2005). Managing the reality of FGM in the UK. In C. Momoh (Ed.). Female genital mutilation (pp. 21-28). Oxon: Radcliffe Publishing Ltd.

Sadala M. L. A., & Adorno, R. DE. C. F. (2002). Phenomenology as a method to investigate the experience lived: A perspective from Husserl and Merleau Ponty's thought. Methodological Issues in Nursing Research, 37(3):282-293.

Sanchez, A.I. Pilar Martinez, M., Miró, E., Medine, A. (2011). Predictors of the pain perception and self-efficacy for pain control in patients with fibromyalgia. The Spanish Journal of Psychology, 14( 1):366-373

Sandelowski, M. (1993). Theory unmasked: The uses and guises of theory in qualitative research. Research in Nursing & Health, 16 (3): 213-218.

Sandelowski, M. (2000). Focus on research methods. Combining qualitative and quantitative sampling, data collection, and analysis techniques in mixed-method studies. Research in Nurisng & Health, 23, 246-225.

Sandelowski, M. (2002). Focus on research methods. Whatever happened to qualitative description? Research in Nursing & Health, 34, 334-340.

142

Scarry, E. (2008). Response: Pain and the embodiment of culture. In S. Coakley & K. Kaufman Shelemey (Eds). Pain and its transformations: The interface of biology and culture (pp.64-66). Cambridge, Massachusetts: Harvard University Press.

Shafik, A., El-Sherif, M., Youssef, A., & Olfat, E. (1995). Surgical anatomy of the pudendal nerve and its terminal branches. Clinical Anatomy, 8(2):110-115.

Shell-Duncan, B. & Herlund, Y. (2000). Female "circumcision" in Africa: Culture, controversy, and change. Boulder, Colorado: Lynne Rienner Publishing.

Shildrick, M. (1997). Leaky bodies and boundaries: Feminism, postmodernism and (bio)ethics. London: Routledge.

Shore, B. (1996). Culture in Mind: Cognition, culture, and the problem of meaning. New York: Oxford University Press.

Souza, P.P., Romão A.S., Rosa-e-Silva, J.C., dos Reis, F.C., Nogueira, A.A., & Poli-Neto, O.B. (2011). Qualitative research as the basis for a biopsychosocial approach to women with chronic pelvic pain. Journal of Psychosomatic Obstetrics & Gynecology, 32(4):165-72.

Staud, R. (2011). Evidence for shared pain mechanisms in osteoarthritis, low back pain, and fibromyalgia. Current Rheumatology Reports, 13( 6), 513-520.

Sutton, K., Pukall, C. F., & Chamberlain, S. (2009). Pain, psychosocial, sexual, and psychophysical characteristics of women with primary vs. secondary provoked vestibulodynia. The Journal of Sexual Medicine, 6(1):205-214.

Talle, A. (2007). From ―complete‖ to ―impaired body: Female circumcision in Somalia and London. In B. Ingstad & S. Reynolds Whyte (Eds)., Disability in local and global worlds. Berkley: University of California Press.

Talle, A. (2008). Precarious identities: Somali women in exile. Finnish Journal of Ethnicity and Migration, 3(2);64-73.

Tashakkori, A., & Teddlie, C. (2003). The past and future of mixed methods research: From data triangulation to mixed model designs. In A. Tashakkori & C. Teddlie (Eds.), Handbook of mixed methods in social and behavioral research (pp. 671-702). Thousand Oaks, California: Sage Publishing, Inc.

Thabet, S. M. , & Thabet, A. S. (2003). Defective sexuality and female circumcision: The cause and the possible management. Journal of Obstetrics and Gynaecology Research, 29(1): 12-19.

Thomas, S. (2005). Through the lens of Merleau-Ponty: Advancing the phenomenological approach to nursing research. Nursing Philosophy, 6(1):63-76.

143

Tiilikainen M. (2001) Suffering and symptoms: Aspects of everyday life of Somali refugee women. In M.S. Lilius (Ed)., Variations on the Theme of Somaliness (pp. 309–317). Turku: Centre for Continuing Education of Åbo Akademi University.

Toubia, N. (1994). Female circumcision as a public health issue. New England Journal of Medicine, 331, 712-716.

Tympanidis, P., Terenghi, G., & Dowd, P. (2003). Increased innervation of the vulval vestibule in patients with vulvodynia. British Journal of Dermatology, 148(5):1021-1027.

Unruh, A. M. (1996). Gender variations in clinical pain experience. Pain, 65(2-3):123-167. van Manen, M. (1990). Researching lived experience: human science for an action sensitive pedagogy. New York: State University of New York Press.

Vloeberghs, E. Knipscheer, J., van der Kwaak A.,, Naleie, Z., van den Muijsenbergh, M. (2011). Veiled pain: A study on the psychological, social and relational consequences of female genital mutilation. Utrecht: Pharos – Dutch National Knowledge and Advisory Centre on Refugees and Migrants‘ Health.

Walker, A. (1992). Possessing the secret of joy. New York: Pocket Books.

Walker, A., & Parmar, P. (1993). Warrior marks: Female genital mutilation and the sexual blinding of women. New York: Harcourt Brace.

Weiss, G., & Haber, H. F. (1999). Perspectives on embodiment: The intersections of nature and culture. London: Routledge.

Wesselman, U., & Czakanski, P. P. (2001). Pelvic pain: A chronic visceral pain syndrome. Current Pain and Headache Reports, 5, 13-19.

Woolf, C. J., & Doubell, T. P. (1994). The pathophysiology of chronic pain – increased sensitivity to low threshold Aß-fibre inputs. Current Opinion in Neurobiology, 4(4), 525-534.

World Health Organization ([WHO],1985). Appropriate technology for birth. Lancet, 331, 436– 437.

World Health Organization ([WHO], 2008). Eliminating female genital mutilation: An interagency statement. WHO Press: Geneva, Switzerland.

Wilkinson, S. (2000). Feminist research traditions in health psychology: Breast cancer research. Journal of Health Psychology, 5, 359-372.

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APPENDICES

I. PHENOMENOLOGICAL BRACKETING

Positioning myself as researcher

For Husserl, epoché was a practice of bracketing one‘s previous assumptions in order to begin reducing the conscious experience of a phenomenon to its invariant essences (through the phenomenological reduction). As a method of research today, bracketing – as it is more commonly known – involves the researcher herself setting aside her ―own presuppositions and not allowing the researcher‘s meanings and interpretations or theoretical concepts to enter the unique world of the informant/participant‖ (Groenwald, 2004, p.18.). It can also include acknowledging the position from which the researcher is coming, rather than the researcher trying to rid all her assumptions, which may not be possible. This allows for more rigorous and attentive listen to the phenomenon as described by participants (Sadala & Adorno, 2002). Important background material on what influenced me to participant in the present study and what forms my foundational assumptions were described in the preface and the section describing the theoretical orientation. Further bracketing, via explicating queries that I held while reading participant interviews was done in the section on data analysis. In this section I reflect on personal and broader cultural factors that situate me as a researcher.

From a macro level, I began reflection on my position in a Western academic department centred around biomedicine in the ―Note on terminology‖; it has been crucial, while engaging in cross-cultural research, to undergo a process of reflection about Western medical views of women‘s bodies, African and Canadian. I spoke on a panel at the Third Annual Symposium of the Graduate Student Alliance for Global Health on what histories might shape our views of FGC, and lead an excavation or genealogy of cultural baggage. I began with a quote from Dr. Nahid Toubia, a Sudanese surgeon who has worked extensively on FGC: ―it is important… that those who are alien to the culture make themselves familiar with the causes and meaning of cultural practices and relate them to ideas of sex roles in their own society‖ (p.714, 1994). On a more personal level, I am impacted by hip and pelvic pain on a daily basis and my interests in

145 chronic pain and the nervous system began within this circumstance while also completing an Honour‘s Bachelors of Art degree in Women and Gender Studies. It was in this degree that I noticed the gendered nature of pain outcomes and founding assumptions driving pain research and clinical practice, and developed my interest in using an intersectional, gender lens within health. These considerations inform my position as a researcher.

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II. CASP TOOL

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III.SF-MPQ-2