Health and Social Development, Faculty of (Okanagan)
Social Work, School of (Okanagan)
DSpace
UBCO
MacKeigan, Tanya Elaine
Master of Social Work - MSW
University of British Columbia
This thesis examines the discourses at play that shape disabled women's sexual subjectivity. I wanted to see how disabled women's understanding of themselves as sexual is socially influenced. I come from a feminist critical disability studies theoretical position influenced by social constructionist thought. I held a focus group and individually interviewed five self-identified physically disabled women about their sexual lives and experiences. They shared stories of societal pressures and personal interactions. But, the way language works to shape meaning is complicated. Among these women there is a mix of visible and invisible disabilities and this affects how social understandings of disability, sexuality, and gender play out. Further, these women come from a variety of racial, socio-economic, and socio-cultural backgrounds. It was clear in the stories that not all disabled women are the same just because they are disabled women. That said, the main social understandings of disability and sexuality that were at work in the women’s stories were ableism, sexism, and resistance. The women spoke of feeling pressures that attempt to define them and who they should be. They pointed out with concern that ableist influences do not associate disability with sexuality. They also spoke about the emotional labour they are forced to take on in relationships influenced by both ableism and sexism: examples include, having to explain their disability, manage others' emotions around disability, or deal with the pressure to always put others' needs first. In response to these pressures, resistance discourses surfaced that challenge mainstream notions of disability and sexuality. The women stated that this resistance represents their reality. It represents strength, commitment, pride, and reclamation. This resistance makes space for the diversity of life and the expression of voice, confidence, liberation, and solidarity. It is a movement of people who no longer wish to subscribe to oppressive thought. The women spoke about feeling more empowered and autonomous in their sexual lives and feeling their self-worth rising. They spoke about the freedom they feel to express themselves now, to talk about their sexuality and to own that, and to claim their rights to pleasure and sexual citizenship.
LET'S TALK ABOUT SEX: A NARRATIVE APPROACH TO DISABLED WOMEN'S SEXUAL LIVES by Tanya Elaine MacKeigan B.A., St. Thomas University, 2010 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK in THE COLLEGE OF GRADUATE STUDIES THE UNIVERSITY OF BRITISH COLUMBIA (Okanagan) July 2018 © Tanya Elaine MacKeigan, 2018 ii The following individuals certify that they have read, and recommend to the College of Graduate Studies for acceptance, a thesis/dissertation entitled: LET'S TALK ABOUT SEX: A NARRATIVE APPROACH TO DISABLED WOMEN'S SEXUAL LIVES submitted by Tanya Elaine MacKeigan in partial fulfillment of the requirements of the degree of Master of Social Work. Dr. Rachelle Hole, UBC - Okanagan, School of Social Work Supervisor Dr. Susan Frohlick, UBC - Okanagan, Irving K. Barber School of Arts and Sciences Supervisory Committee Member Dr. Tim Stainton, UBC - Vancouver, School of Social Work Supervisory Committee Member Dr. Sabre Cherkowski, UBC - Okanagan, Faculty of Education University Examiner iii Abstract This thesis examines the discourses at play that shape disabled women's sexual subjectivity. I wanted to see how disabled women's understanding of themselves as sexual is socially influenced. I come from a feminist critical disability studies theoretical position influenced by social constructionist thought. I held a focus group and individually interviewed five self-identified physically disabled women about their sexual lives and experiences. They shared stories of societal pressures and personal interactions. But, the way language works to shape meaning is complicated. Among these women there is a mix of visible and invisible disabilities and this affects how social understandings of disability, sexuality, and gender play out. Further, these women come from a variety of racial, socio-economic, and socio-cultural backgrounds. It was clear in the stories that not all disabled women are the same just because they are disabled women. That said, the main social understandings of disability and sexuality that were at work in the women’s stories were ableism, sexism, and resistance. The women spoke of feeling pressures that attempt to define them and who they should be. They pointed out with concern that ableist influences do not associate disability with sexuality. They also spoke about the emotional labour they are forced to take on in relationships influenced by both ableism and sexism: examples include, having to explain their disability, manage others' emotions around disability, or deal with the pressure to always put others' needs first. In response to these pressures, resistance discourses surfaced that challenge mainstream notions of disability and sexuality. The women stated that this resistance represents their reality. It represents strength, commitment, pride, and reclamation. This resistance makes space for the diversity of life and the expression of voice, confidence, liberation, and solidarity. It is a iv movement of people who no longer wish to subscribe to oppressive thought. The women spoke about feeling more empowered and autonomous in their sexual lives and feeling their self-worth rising. They spoke about the freedom they feel to express themselves now, to talk about their sexuality and to own that, and to claim their rights to pleasure and sexual citizenship. v Lay Summary This thesis focuses on how language about disability and sexuality affects the sexual lives of physically disabled women. Data was collected from a focus group as well as individual face-to-face interviews with five self-identified physically disabled women. I examined the stories they told about their sexuality to uncover the social influences that might have shaped them. I wanted to see how disabled women's understanding of themselves as sexual is socially influenced. The complexity of the women's lives became clear in the stories and the importance of this complexity was communicated by them. However, the largest influences on the women's sexual lives seemed to come from the oppressive effects of ableism, sexism, as well as the more empowering effects of resistance. The way language works to shape meaning is complicated, but this work is needed because it has been overlooked in relation to sexuality for disabled women. vi Preface This thesis is original, unpublished work by Tanya MacKeigan. Ethics approval for this research was granted by The University of British Columbia Okanagan Behavioural Research Ethics Board H17-01259. vii Table of Contents Abstract ......................................................................................................................................... iii Lay Summary .................................................................................................................................v Preface ........................................................................................................................................... vi Table of Contents ........................................................................................................................ vii Acknowledgements ...................................................................................................................... ix Dedication .......................................................................................................................................x Chapter One: Introduction ...........................................................................................................1 1.1 Topic, Significance, and Personal Interest ...................................................................... 1 1.2 Methods and Rationale ................................................................................................... 5 1.3 Thesis Layout .................................................................................................................. 8 Chapter Two: Literature Review - Main Discourses ................................................................10 2.1 The Medical Model ....................................................................................................... 10 2.2 Ableism ......................................................................................................................... 12 2.3 The Social Model .......................................................................................................... 15 2.4 Representation and Embodiment, Subjectivity, and Identity Politics........................... 17 2.5 Emotional Labour ......................................................................................................... 22 2.6 Re-imagining Disability and Sexuality ......................................................................... 25 2.7 Disability Justice ........................................................................................................... 30 Chapter Three: Theory and Methodological Design ................................................................33 3.1 My Theoretical Positioning........................................................................................... 33 3.1.1 Feminist Critical Disability Studies .................................................................. 36 3.1.2 Disability Language .......................................................................................... 38 3.2 Methodological Design ................................................................................................. 40 3.2.1 Social Constructionism ..................................................................................... 41 3.2.2 Narrative Method .............................................................................................. 43 3.2.2.1 Discourse Analysis................................................................................... 46 3.2.2.1.1 Poststructural Borrowings ............................................................ 50 3.2.3 Sampling ........................................................................................................... 52 3.2.4 Data Collection ................................................................................................. 53 3.2.5 Data Analysis .................................................................................................... 56 3.2.6 Trustworthiness ................................................................................................. 57 3.2.7 Ethical Considerations ...................................................................................... 61 Chapter Four (Part One): Findings ...........................................................................................64 4.1 The Discourses - Ableism, Sexism, and Resistance ..................................................... 64 4.2 Intersectional Significance ............................................................................................ 66 viii 4.3 The Focus Group........................................................................................................... 67 4.3.1 Ableism - Focus Group ..................................................................................... 69 4.3.2 Sexism - Focus Group ....................................................................................... 71 4.3.3 Resistance - Focus Group ................................................................................. 73 Chapter Four (Part Two): Findings ...........................................................................................76 4.4 Gabbi............................................................................................................................. 77 4.4.1 The Work of Ableism ....................................................................................... 80 4.4.2 The Work of Sexism ......................................................................................... 82 4.4.3 The Work of Resistance .................................................................................... 84 4.5 We ................................................................................................................................ 85 4.5.1 The Work of Ableism ....................................................................................... 88 4.5.2 The Work of Sexism ......................................................................................... 90 4.5.3 The Work of Resistance .................................................................................... 91 4.6 Wilma ........................................................................................................................... 92 4.6.1 The Work of Ableism ....................................................................................... 95 4.6.2 The Work of Sexism ......................................................................................... 97 4.6.3 The Work of Resistance .................................................................................... 98 4.7 Arianna ...................................................................................................................... 100 4.7.1 The Work of Ableism ..................................................................................... 103 4.7.2 The Work of Sexism ....................................................................................... 105 4.7.3 The Work of Resistance .................................................................................. 106 4.8 Gail ............................................................................................................................ 108 4.8.1 The Work of Ableism ..................................................................................... 110 4.8.2 The Work of Sexism ....................................................................................... 112 4.8.3 The Work of Resistance .................................................................................. 113 4.9 Summary .................................................................................................................... 115 Chapter Five: Discussion ...........................................................................................................121 5.1 The Power of Oppressive Discourses ......................................................................... 122 5.2 Visible and Invisible Disability .................................................................................. 127 5.3 Emotional Labour ....................................................................................................... 130 5.4 Resistance ................................................................................................................... 132 5.5 Methodological, Policy, and Practice Contrubutions ................................................. 135 5.6 Limitations .................................................................................................................. 137 5.7 Recommendations for Future Research ...................................................................... 138 5.8 Conclusion .................................................................................................................. 139 Bibliography ...............................................................................................................................140 Appendices ..................................................................................................................................148 Appendix A ......................................................................................................................... 148 Appendix B ......................................................................................................................... 150 Appendix C ......................................................................................................................... 154 Appendix D ......................................................................................................................... 156 ix Acknowledgments I would like to start by giving thanks to the women that took part in this research. This work is dedicated to all of you. It would not exist without you and your courage to share such intimate, beautiful stories. I admire you. I would like to thank my committee - Dr. Sue Frohlick, Dr. Tim Stainton, and Dr. Rachelle Hole. I am grateful for the support and encouragement from such brilliant minds. Your insight and constructive feedback has strengthened my work. I look up to all of you. I will strive to meet the example you've set for me as I move forward in my career. I would especially like to thank my supervisor, Dr. Rachelle Hole. Rachelle, having you on this journey with me has been a gift. Your knowledge of, and passion for, theory and qualitative research has been integral. More importantly though, you've been a significant source of encouragement and support. You believed in me - always. You invested in me and you never faltered in your dedication to me and to this work. I knew I could always count on you for an understanding and supportive conversation, a gentle nudge, and a good laugh. I am a better researcher and a better woman because of the wisdom, understanding, and integrity that you've passed on by example. Thank you so very much. Finally, to my family and close friends - I owe you more gratitude than I could ever express. You've listened to my thoughts and feelings and you've offered your honesty in return - that's important to me. You've been my source of love, acceptance, and understanding. Moreover, you've been my source of laughter when I really needed it. Especially to my family - my parents, sisters, and brother - I love you all. You have been there for me from the start. You've watched me grow and you've loved me unconditionally. And, specifically to my Da, the man who read to me every night as I was growing up - I wish you could be here to read this - we'd have a great discussion, I'm sure. x Dedication I am dedicating this work to the women who partnered with me in the research. This accomplishment would not have been possible without you. These are your stories. I am grateful that you chose to share them with me and I am honoured to have been trusted with presenting them. You have all touched my heart in so many ways. I have learned from you. I have grown as a woman in that learning. Thank you all from the bottom of my heart. I will always treasure my experience in working with you. 1 Chapter One: Introduction Let's talk about sex! Let's talk about who has rights to pleasure and to be acknowledged as sexual citizens. In my research, this question is explored in relation to disability and, more specifically, disabled women. Disability and disabled people are often associated with issues concerning physical access, such as rights to physical spaces and accessibility to those spaces - ramps, elevators. These are important matters for inclusivity but, in this thesis, I address another set of rights by exploring the following set of questions: What about rights to pleasure and to be acknowledged as sexual citizens? What about rights to inclusivity in social conversations that affect health and well-being? And, what about rights for disabled women to have their voices and perspectives fairly represented in such conversations? 1.1 Topic, Significance, and Personal Position I would like to begin by acknowledging that my research was conducted on the traditional, unceded territory of the Syilx people (Okanagan) in British Columbia. I have had the privilege to live, learn, and grow as a woman on this beautiful land for the last 3 years. I am very grateful for that opportunity. My research is focused in the area of disability and sexuality. More specifically, it is focused on the ways that social and cultural discourses position disabled women in relation to sexuality and how this shapes disabled women's understanding of themselves as sexual. Disabled women are positioned in society in particular ways that Other their existence. This Othering, which is marginalizing and oppressive, creates barriers on many levels, but particularly in the realm of social impositions and expectations placed on disabled women's bodies and sexuality (Garland-Thomson, 1997; Linton, 1998a, 2007; Shildrick, 2009). Of central focus in this thesis are the implications of this Othering for physically disabled women’s sexual expression and sexual citizenship. Physical disability is a broad term signifying a diversity of disabilities. All the 2 women in this research self-identified as physically disabled. For further clarity into the use of the term physical disability with respect to this research, I would like to state that it included disabilities and/or impairments that affected the women's bodies and/or mobility - sometimes visibly and sometimes not - with the inclusion of chronic illness. My intention in this study is to expose and examine the discourses that produce and shape understandings and meanings of disability and sexuality, and to analyze how these representations influence physically disabled women's sexual lives, experiences, and understandings. By highlighting these discourses, I seek to demonstrate how social relations of power can privilege and/or oppress disabled women. Through my research, I hope to foster a re-imagining of disability and sexuality that encompasses disability justice and sexual rights/citizenship for disabled women. While literature in the field of disability is extensive, literature about disabled women is much more narrow - and narrower still when sexuality is the focus. Disability and sexuality scholarship tends to be rooted almost exclusively within a remedial, medicalized perception of disabled women's bodies that focuses on sexual function and/or dysfunction as it relates to a non-disabled standard (Hocaloski, Elliott, Brotto, Breckon, & McBride, 2016; Smith, Molton, McMullen, & Jensen, 2015; Wiegerink et al., 2011). Further, there is extensive evidence, which I will present in the following chapters, of an ableist culture at work that subjugates disabled women, ignores their sexual rights and sexual citizenship, and stigmatizes their sexual expression and sexual pleasure (Bahner, 2012; Beckwith & Yau, 2013; Drummond & Brotman, 2014; Garland-Thomson, 1997; Jungles & Bender, 2015; Linton, 2007). There is a clear gap in literature that meaningfully addresses the topic of sexuality for disabled women, and I wanted to give space to the topic because it has been overlooked. In giving the topic space, I want to center the voices of disabled women, which are sorely missing 3 in the literature. It was very important to me that I approach this research in full partnership with the women involved in aims toward emancipatory and transformative work. I came to this topic and critical disability studies through a personal interest in feminist studies and the theories associated with that field. I noticed a parallel in how interconnected and complementary the two fields of study were in terms of their respective interrogations of socially constructed norms, power differentials, and the resultant privilege and oppression those power differentials cause. Further, as I began to delve deeper into the literature, I found it quite interesting that there were also critical divides between these two perspectives, specifically when it came to sex and sexuality for disabled women. While parallels exist between the two fields of study with respect to sex and sexuality, there are important contradictions. It was intriguing to see, in one sense, the enmeshment of the socially constructed categories of woman and disabled, but then to also see a complication of that enmeshment when sexual expression and sexual rights came into focus. I wanted to combine the two perspectives for a richer, fuller, theoretical perspective on disabled women's sexuality. Therefore, I am positioning myself theoretically in my research as coming from a feminist critical disability studies perspective. A deeper theoretical rationale for this will be provided in Chapter Three. From a personal position, I identify as a contingently non-disabled woman and that situates me as a researcher in relation to this work. This language is informed by Rosemarie Garland-Thomson (1997), who states that everyone will likely move through disability experiences at some point in their lifetime and, therefore, the cultural understandings that go along with disability are important for everyone to consider. I comment further on my place in and responsibility to this work as a non-disabled woman from an ethical perspective in section 3.2.7 of Chapter Three. In alliance with bell hooks’ (1984) work interrogating the centre and the 4 margins, I also assert that it is not the sole responsibility of disabled women, activists, and academics to interrogate the social positioning of disability. Rather, there is an obligation for non-disabled people to recognize the space they hold in relation to disabled people and to also take up the work to meaningfully address disparities in that relationship. This is discussed in section 5.1 of Chapter Five. In this research, I asked the women to share personal details about their lives and I feel I should do the same. As such, I would like to give a brief snapshot of myself in addition to my current identification as non-disabled. Further, as Linton (1998b) states, "it is incumbent on non-disabled scholars to pay particular attention to issues of their own identity, their own privilege as non-disabled people, and the relationship of these factors to their scholarship" (p. 537). It offers further perspective into my relationship to this research by acknowledging the intersections of some of the subject positions I hold and some of the experiences that have shaped me. This is a necessary process to engage in. I am a 30-year-old, white, queer (cisgender and bisexual) woman. I was born and raised on the East Coast of Canada in a small community located on Cape Breton Island, Nova Scotia. I am the youngest of four siblings, and my family and my experiences growing up in the culture that surrounded me have greatly shaped my life. I continue to carry much of those experiences with me. I grew up very modestly, certainly in what would be considered a very low socio-economic class. I moved away at 18 to pursue further academic endeavours. I grew as a woman in more complex ways once I was outside of what was, at the time, a well-meaning but conventional community. Higher education and my experiences associated with that time in my life opened up a new world for me, both intellectually and emotionally. It was a time in my life that really sparked my own self-discovery on many levels and that process has been continual. I 5 will note, however, that I always had support from a loving family and I was raised by my father to pursue knowledge, think for myself, question things, do what I felt was right, have respect and kindness for others, and live with integrity. In terms of experiences of disability specifically, I really did not experience much exposure to disability. My mother worked in the community living sector for years and continues that work today; but I had never thought about meaningfully questioning how disability is socially shaped until I was exposed to the critical theories that eventually led me to the path I have taken with this work. My interest in theory has taken me here academically, but I come to this place in my life and my research with a complex collection of personal experiences. My understandings, like those of the women in this research, have also been influenced by discourses. My process in conducting this work has brought that fact to light, and my self-reflection and growth as a woman and as a researcher has been emotional. The work has been intellectually and emotionally challenging, but I say that with gratitude. I did not expect to develop such an emotional connection to the work, and it surprised me how much the women's stories moved me and resonated with me in multiple ways. On that note, while it is important to give a brief understanding of who I am, this work is about centering the voices of the women who partnered with me and I want to make clear that this research represents them and their experiences. This work and what it offers exists because of them. 1.2 Methods and Rationale My research question is two-fold. First, What are the discourses that shape disabled women's narratives of sexuality and their sexual lives? Second, How do these discourses shape the women's sexual subjectivity? Answering these questions required qualitative research. I chose to use a narrative approach. I held a focus group and individually interviewed five self-identified 6 physically disabled women about their sense of themselves as sexual. The main aim was to look at the narratives, or stories, that the women told me about their sexuality and try to expose and examine what discourses, or language, might have shaped their stories and experiences. I wanted disabled women's voices to be centered. I wanted their perspectives to drive the work. Further, by sexuality I refer to more than sexual orientation. I include feelings, desires, expressions, and experiences. It is personal and unique to each person; it is someone's sexual self. I drew on social constructionism and poststructuralism in my discourse analysis of the women's narratives. Social constructionism centers on the claims that our world is socially constructed and that social interactions shape individual understanding (Burr, 2015; Gergen, 2015). Poststructuralist thought is a nice complement here because it holds to social constructionist thought that the meaning people attach to concepts is constructed, but it looks a little deeper at the how of it (Burr, 2015). Poststructuralism views discourses as productive and reproductive insofar as language, social interactions, and cultural representations produce socially constructed realities and, also, reproduce power relations (Burr, 2015; Cheek, 2000; Gannon & Davies, 2012). Further, poststructuralism does not view all discourses equal as it posits that some discourses are privileged over others and highlights the social implications of this (Burr, 2015; Cheek, 2000; Gannon & Davies, 2012). A feminist critical disability studies perspective fits nicely into this framework because critical theories often focus on the socially constructed nature of human life. Critical theories seek to expose and question social power structures that privilege and oppress in unbalanced ways (Garland-Thomson, 2002; Goodley, 2013). They also seek to interrogate mainstream ways of thinking, thereby offering new ways of thinking that are also valid and important (Garland-Thomson, 2002; Goodley, 2013). Mainstream narratives reproduce the privileged, normative 7 ideal of a white, straight, male, upper-middle class, non-disabled sexual subject. There is little space made for conceptualizations outside of those parameters. By taking a critical perspective that social understandings are constructed, I aimed to see how disabled women's understandings of disability and sexuality are socially influenced and what discourses, or cultural narratives, were part of that influence. Discourses shape disabled women’s subjective understanding of themselves as sexual through interactions that take place at social and institutional levels, just as they shape the meanings that everyone attaches to disability and sexuality (Burr, 2015; Gergen, 2015). Through the process of interviewing and analysis, the importance of intersectionality became clear. Intersectionality plays a central role in how a person comes to position oneself. By that, I mean that everyone has multiple identities that mesh together and intertwine in terms of the oppression and/or privilege they experience in different social settings (Burr, 2015; Goodley, 2013). Disabled women are not homogeneous. Therefore, while prevalent cultural discourses in the women’s stories included ableism, sexism, and resistance, the ways discourses work to shape meaning are complicated. Some of the women have visible disabilities while others have invisible disabilities. In/visibility thus affected the ways that discourses about gender, disability, and sexuality played out for these women. There are significant gaps in the research on disability and sexuality making this research very important. It is a contribution to the field from a perspective not often explored. A feminist critical disability perspective has not often been used in research on disability and sexuality. This research has significance for large portions of the Canadian population. The benefits of this study are not limited to disabled women or disabled people but extend to non-disabled people as well. Most physical impairments are acquired at some point throughout one's lifetime; we cannot only 8 think of physical disability as congenital (present at birth) impairments (Garland-Thomson, 1997, 2002; Linton, 1998a). Disability can happen at any time, to anyone throughout a lifetime. Garland-Thomson (1997, 2002, 2012) and Linton (1998a) both posit that the status of being non-disabled is not stable or reliable, and any number of factors related to living life can bring disability into someone's life. Individuals may also end up in relationships and/or sexual partnerships with disabled people in their lifetime. Therefore, physical disability can be a part of many people’s lives, whether or not it affects them directly. A re-imagining of disability and sexuality, which this thesis aims to do, can benefit anyone and everyone. 1.3 Thesis Layout Chapter Two presents the literature review, organized by the main discourses that are present in the existing literature in the area of disability and sexuality: the medical model of disability; ableism in society/culture; the social model of disability; representation and embodiment, subjectivity, and identity politics; the emotional labour of disabled women in navigating relationships; discourses calling for a re-imagining of disability and sexuality; and, a call for disability justice in the interest of full, inclusive sexual citizenship for disabled women. Through these discourses, the issues facing disabled women in terms of their sexuality and sexual lives will be made clear as well as the need for further qualitative research in this field of study in the interest of social inclusion, social justice, and sexual citizenship for disabled women. Chapter Three presents my theoretical orientation and methodological approach to this research. I provide a detailed description and rationale of my theoretical position and the methods I used to conduct this research. As noted, it is a qualitative narrative study informed by social constructionism with poststructuralist thought on the work of discourses incorporated. 9 Chapter Four presents a detailed description of the findings from the data. This chapter is split into two parts. I keep the findings of the focus group separate from the findings of the individual narrative interviews, as they are distinct types of data. The focus group resembles a group narrative, which had its own dynamic. That said, both types of narratives enhance the quality of the data overall. This chapter captures the women's voices and presents their stories as told by them and interpreted by me. I present a brief portrait of each woman as well as the main discourses at work in the stories the women shared with me during their interviews. I also detail the ways in which the women were positioned at different points in their lives in relation to sexuality as a result of these discourses. Chapter Five provides a discussion of the findings, where I theorize the findings and their significance. I make connections between the findings and existing literature to highlight the significance and contributions of this research. The main points from the findings are further explored in four sections. First, a section theorizing the power of oppressive discourses; second, a section exploring the complexity of visible and invisible disability; third, a section exploring the concept of emotional labour; and fourth, a section detailing the significance of discourses of resistance. Finally, I discuss methodological, policy, and practice contributions, as well as some limitations of the present study and recommendations for future research. 10 Chapter Two: Literature Review - Main Discourses 2.1 The Medical Model The medical model of disability is one of the most dominant approaches to understanding disability (Shakespeare, 2014). It is a narrative that positions disability as a personal flaw or failure in need of correcting (Shakespeare, 2014). It addresses disability as something inherently wrong with an individual and attempts to right that wrong through medical interventions rooted in attempts to cure or eliminate disability (Garland-Thomson, 2002; Shakespeare, 2014). This viewpoint has implications for how one responds to disability. From a medical perspective, the focus becomes blaming the person and attempting to fix and/or assimilate disabled people to the dominant ideal; the focus is on an ideal that underpins expectations of the body rather than exposing the social and cultural practices that position disability as Othered. The ideology of cure directed at disabled people focuses on changing bodies imagined as abnormal and dysfunctional rather than on changing exclusionary attitudinal, environmental, and economic barriers (Garland-Thomson, 2002). A medical model of disability is not wholly detrimental as some disabled people require and welcome medical interventions for health reasons; that said, its prominence and privilege over other possible ways to understand disability has resulted in many negative consequences in disabled women’s lives (Garland-Thomson, 2002; Kafer, 2013; Shakespeare, 2014). This privileging underwrites and contributes to the marginalized position that disabled women hold in society. When society advantages a medicalized view of disability, the possibilities to see disability and sexuality in any sort of human way are made more difficult. This directly affects the sexuality of disabled women, as this element of their existence is not often given consideration. In the literature there is a heavy focus on the medicalization of disabled women's 11 bodies as well as their sexuality. There is significant attention paid to the sexual function/dysfunction of disabled women's bodies as it relates to a biased, non-disabled standard of ideal sexual function (Hocaloski et al., 2016; Smith et al., 2015; Wiegerink et al., 2011). The majority of research focuses on medical model approaches to disability. Little is said about sexual pleasure and expression. Biased, ableist stereotypes of asexuality and dependency are attached to disabled women that serve to infantilize them (e.g., Beckwith & Yau, 2013; Esmail, Darry, Walter, & Knupp, 2010; Esmail, Munro, & Gibson, 2007; Jungles & Bender, 2015; Parsons, Reichl, & Pedersen, 2016; Payne et al., 2016; Shildrick, 2009; Sloan, 2014). Under this dominant, Western, medicalized view of disability, disabled women's sexuality is seen as less-than when compared to non-disabled women's sexuality (Esmail et al., 2010; Payne et al., 2016). The restricted conversations about sexual pleasure imply that sexual pleasure is either solely illicit or insignificant altogether for disabled women (Shildrick, 2009). In a study by Beckwith and Yau (2013), some women described the inadequacy of the medical profession in handling disability due to its rigid, problem-focused perception of the body and its lack of attention toward sexual desire and sexual pleasure. When positioned this way, the main focus becomes the body and its impairment, with a specific narrative rooted in problematizing the body as a personal failure or something in need of fixing (Beckwith & Yau, 2013; Esmail et al., 2010; Payne et al., 2016). The literature available in the area of disability and sexuality is clear: the sexual lives of disabled women are actively dismissed and stigmatized (Bahner, 2012; Beckwith & Yau, 2013; Drummond & Brotman, 2014; Esmail et al., 2010; Esmail et al., 2007; Fritz, Dillaway, & Lysack, 2015; Garland-Thomson, 1997, 2002; Jungles & Bender, 2015; Linton, 1998a, 2007; Parker & Yau, 2012; Parsons et al., 2016; Payne et al., 2016; Shakespeare, Davies, & Gillespie-Sells, 1996; Shildrick, 2009; Zitzelsberger, 2005). 12 2.2 Ableism Discourses from a medical model perspective on disability and sexuality contribute directly to the ableist narratives that permeate Western societies today (Wilkerson, 2002). Marginalization based on disability, sexuality, or both, is the result of cultural influences that perpetuate the ableist perception of disabled bodies as different and, ultimately, morally degenerate. Garland-Thomson (2005a) argues that five main narratives underpin ableism through social practice, one of which is the biomedical view of disability as a failure or flaw. The remaining four narratives stem from biomedical notions and are as follows: the sentimental view rooted in pity toward the presumed suffering and loss caused by disability; the overcoming view that sees disability as something to be conquered; the catastrophe view that sees disability as a tragedy causing personal defeat; and, the abjection view that outright rejects, avoids, or wishes to exterminate disability (Garland-Thomson, 2005a; Linton, 1998a). Not to say that medical intervention is not important or necessary in some cases, but, as Garland-Thomson (2002) posits, the significant focus on medicalized views of disability is problematic because the medical commitment to healing has shifted toward an aggressive intent to fix, regulate, or eradicate ostensibly deviant bodies. She goes on to state that such a program of elimination has often been at the expense of creating a more accessible environment, providing better support services for people with disabilities, and allowing for true inclusion and citizenship. This rhetoric places the onus on disabled people to overcome the struggles they face socially (Linton, 1998a). For Linton (1998a), ableism is "the idea that a person’s abilities or characteristics are determined by disability or that people with disabilities as a group are inferior to non-disabled people" (p. 9). Comparatively, Campbell (2008) suggests that ableism is a set of beliefs and processes that position the self and the body as an ideal to be met - anything aside from which is seen as less-13 than, or removed from the standards set by a dominant, privileged society. Ableism is a dehumanizing social practice that is actively maintained. Disabled people are not just Othered by lack of social access, but rather seen as inherently problematic and in need of being ameliorated, cured, or even eliminated (Campbell, 2008). Inscribing certain bodies in terms of deficiency and essential inadequacy privileges a particular understanding of normalcy that is commensurate with the interests of dominant groups (Campbell, 2008). Ableism is maintained through prominent representations of disability in society. Representations saturate the material world with meaning (Garland-Thomson, 2005b). The problematic privileging of certain representations of disability has implications for how individuals make meaning of disability. For example, the "overcoming" narrative of disability insists that by not overcoming disability, the person is a failure. The putative failure to "rise above" disability is likened to innate inferiority (Linton, 1998a; Stone, 2010). Disabled people and, more specifically, physically disabled women are encouraged to keep their disability out of sight (Linton, 2005; Stone, 2010). Related to sexism, disabled women under an ableist narrative learn that their bodies are not sites of value; they are socialized to feel uncomfortable in bodies that do not meet society’s standards for attraction (Linton, 1998a, 2005; Stone, 2010). Sexism and ableism contribute to sexual powerlessness and the body shaming that often accompanies sexual powerlessness (Wilkerson, 2002). Ableism and sexism intersect, thereby deeply impacting physically disabled women in particular ways. In looking at media representations of disability, dominant and privileged narratives reproduce the idea that sexuality is not possible for disabled women. Disabled people are ignored in mainstream representations of sexuality, and this silence perpetuates the prejudice and positioning of disabled women as sexual outsiders (Parsons et al., 2016; Shildrick, 2009; Zitzelsberger, 2005). Compounding the issue for disabled 14 women are biased representations of women that maintain a narrative of unobtainable embodied ideals (Parsons et al., 2016). For example, Parsons, Reichl, and Pedersen (2016) surveyed non-disabled people about their opinions toward disabled people in mainstream, North American media. Stereotypical representations resulted in significant negative perceptions toward disability and, specifically, toward physically disabled women. Non-disabled men held the highest negative opinions toward disabled women, which suggests a patriarchal, ableist social order. As mentioned previously, disabled women’s sexual expression is overlooked and dismissed in Canadian ableist society. There is a failure to see disabled women as fully human and the subjugation of disabled women is often internalized (Shakespeare et al., 1996; Shildrick, 2009; Wilkerson, 2002). Self-esteem and sexual confidence is significantly lower for some disabled women in North America than for non-disabled women, which makes sexual exploration harder for physically disabled women (Bahner, 2012; Drummond & Brotman, 2014; Fritz et al., 2015; Shildrick, 2009). It is difficult to be a sexual citizen in an ableist society that privileges "normative" sex/sexual expression and vilifies non-normative sex (Shildrick, 2009). Internalization of ableism occurs when one's sexuality is distorted and devalued (Shildrick, 2009). One study by Parker and Yau (2012) points to the trouble physically disabled women in an Australian context encounter in finding relationships and romantic partners who are accepting and willing to engage with or support sexual expression, and thus the women faced body image issues. These ableist narratives are also present in a Canadian context at individual and institutional levels with a pressure to conform to dominant, mainstream sexual standards. These standards surround what the process of sex should look and feel like; that is, sexual practice should consist of the "normal" mechanics of touching, stimulation, position, and orgasm that are 15 rooted in heteronormative, phallocentric, penetrative sexual ideals (Drummond & Brotman, 2014). When these ideals are not met, the result is a social, sexual marginalization of disabled women that threatens sexual subjectivity (Drummond & Brotman, 2014). Mainstream discourses make unthinkable any linking of disability with sexual expression (Linton, 2007; Wilkerson, 2002). In line with Shildrick (2009), the task of my research is, in part, to uncover the universalized, ableist attitudes and values and the taken-for-granted assumptions and negative modes of representation that underlie mainstream perceptions of disability and sexuality. 2.3 The Social Model The social model of disability was recognized as groundbreaking in the 1980s/1990s and still offers a valuable perspective with respect to disability; that said, it has since been critiqued in its limitations as well (Linton, 2007; Shakespeare, 2014). The social model of disability focuses on the organizing structures and practices of society that position people as disabled rather than on disabled people having a personal fault or flaw (Shakespeare, 2014). It effectively re-frames disability as constructed discrimination as opposed to the medical model's pervasive suggestion that disability is an inherent wrong/problem within individuals (Shakespeare, 2014). The social model argues that in agreeing to attach medical meaning to disability, society colludes to keep the issue within the medical establishment; society colludes to keep it a personal matter where treating or fixing the person is seen as the focus instead of treating or fixing the social processes and policies that constrict disabled people's lives (Linton, 1998a). Attitudes and social arrangements are barriers that disable people through marginalizing discourses that permeate many cultures, including those in Canada and the United States, with respect to disability (Bahner, 2012; Esmail et al., 2010; Linton, 2007). A quote from Simi Linton's (2007) personal memoir speaks rather candidly to this matter when she states: 16 …disabled people express outrage at our social positioning, rather than despair at the fate of our bodies. Our symptoms may at times be painful, scary, unpleasant, or difficult to manage, and they may never change no matter what policy is implemented or what scholarly paper is written. Yet repeatedly, we report that what pains us the most, and what we rail against, are the strategies used to deprive us of rights, opportunity, and the pursuit of pleasure. (p. 138) This statement attests to how the positioning of disabled people affects basic human rights, including sexual citizenship. Social barriers do not just remain in the minds of people as attitudinal; these perceptions become practice. For example, inaccessibility and inadequate disability services impact sexuality, sexual expression, and opportunity (Bahner, 2012; Linton, 2007). Transportation services or opportunities to meet people and engage in sexual interaction are all much less accessible for disabled people (Bahner, 2012). Not only is the sexual act dismissed, but there can also be an overall social hindrance of the processes that make sexual interaction a possibility (Bahner, 2012; Linton, 2007). Although the social model offers a very helpful perspective in highlighting the social construction and positioning of disability, it has limitations. Impairment is defined in biological terms, and disability is defined as social construction (Shakespeare, 2014). The social model promotes the removal of the individual experience of disability, as it suggests a strict separation of disability and impairment, effectively taking the body out of the picture altogether (Shakespeare, 2014; Wendell, 2010). While efforts to move away from a medicalized perspective that focuses solely on impairment as the cause of disability are helpful, impairment and disability are inextricably linked (Shakespeare, 2014). Impairment, in one sense, is a prerequisite to the social barriers that disable, and is a result of and exacerbated by social 17 structures such as discrimination and poverty (Shakespeare, 2014). Impairment is tied to environmental and social barriers, not separated from them. Further, what counts as impairment is contingent on social context and the meaning attached by society (Kafer, 2013; Shakespeare, 2014). What constitutes impairment is tied to social attitudes and understandings around expectations of the body, so removing the body from the argument becomes problematic (Kafer, 2013; Shakespeare, 2014). Thus, it is not helpful to position impairment as an essential category that is only ever bio-medical. Impairment is a personal experience linked to social attitudes about disabled bodies (Kafer, 2013; Linton, 2007; Shakespeare, 2014; Wendell, 2010). Removing the body from the conversation of disability is then further complicated. This is especially important regarding sexuality and the sexual expression of physically disabled women, as their relationship to their body is key (Wendell, 2010). Simply addressing cultural and attitudinal barriers that position disability does not make bodily experiences of impairment disappear (Kafer, 2013; Wendell, 2010). These experiences are valid and need to be acknowledged in conversations about disabled sex. The social model, while expanding perspectives regarding disability, has offered only so much (Kafer, 2013; Shakespeare, 2014). As Garland-Thomson (1997) states, disability is more complex than the social representations that position it. 2.4 Representation and Embodiment, Subjectivity, and Identity Politics These themes are present in disability studies literature and can be argued to be elements of a lens through which to view and interrogate disability and sexuality in a North American and, even more related, Canadian context. In this sense, these perspectives can be utilized to expose the processes by which disability is a produced and reproduced political category of identity, as 18 well as to interrogate what the consequences of this production and reproduction are for disabled women. Representations of disability and sexuality and, more specifically, disabled women as sexual beings are skewed or almost non-existent in many forms of media (Linton, 2007; Shildrick, 2009; Trace, 2014). Rarely are accurate portrayals of disabled women's sexuality brought to light in media. Often disabled women are portrayed as asexual or virginal if sexuality is the focus at all. When sexuality is not the focus, as in most cases, there is a generalized focus on disability whereby it is framed as tragic or pitied; moreover, it is only celebrated if disability has been "overcome" in an over-sensationalized, heroic way. Of course, such representations are not actually celebrations of disability but are instead celebrations of success in shedding disability and conforming to mainstream, normative ideals. Rarely are disabled women given the chance to inform an accurate portrayal of the complex experiences, struggles, and desires that disabled women might prioritize with respect to their sexual lives. Such problematic representations influence wider social narratives about disability and sexuality that tend not to be questioned. A significant focus for disability studies in the area of disability and sexuality is in problematizing and interrogating the power that cultural representations have in excluding disability from sexuality, which is an integral piece of human existence and self-identity (Garland-Thomson, 1997; Linton, 1998a; Shildrick, 2009; Wendell, 1996). The dominant social narratives of disability and disabled women thus limit the full embodiment of disability (Shildrick, 2009). This, in turn, affects sexual embodiment. Dominant groups have more power than Othered groups to arrange the world in ways that suit the dominant groups’ needs, which validates its members experiences (Wendell, 1996). Disabled people might have narratives 19 whereby non-disabled people are Othered, as well as empowering narratives about their own experiences, but these voices are rarely heard. It becomes about looking at whose voices are amplified and what consequences or rewards result on both sides of the power differential (Garland-Thomson, 1997; Wendell, 1996). There is a cultural and societal role in constructing disability in terms of the discourses used to represent bodies. The representations overshadow the lived realities of disabled bodies and this can inform the sexual embodiment of disabled women. The disabled body is not the cultural representation. The cultural representation is the non-disabled, dominant perception of the experience of being disabled and how that perception is attached to the body as some sort of failure or flaw by comparison to the non-disabled body (Wendell, 1996). The representations are rooted in non-disabled interpretations of what it means to be disabled; bodily experience versus bodily representation (Wendell, 1996). My research aims to highlight bodily experiences and how they are informed by bodily representations. Disabled perspectives are key in this endeavour. Disabled points of view are situated to recognize and expose cultural limitations of privileged norms by the fact that disabled people are held to an ideal that they will never meet. "When people cannot ground their self-worth in their conformity to culture body-ideals or social expectations of performance, the exact nature of those ideals and expectations and their pervasive, unquestioning acceptance become clearer" (Wendell, 1996, p. 69). Where subjectivity fits in relation to the discourses on disability and sexuality is complex. Subjectivity is largely informed by one's social interactions and relationships (Goodley, 2017). Further, one's subjectivity cannot be separated from wider, more systemic structures such as political, economic, and cultural constructs (Goodley, 2017). These ideas link well to the social constructionist focus of this thesis. Subjectivity is, in part, a process whereby one's experiences 20 in the world are interpreted in unique ways with unique feelings and opinions that then inform their subjective view of self, but this process is not free from the productive nature of socially constructed discourses and interactions at systemic levels (Goodley, 2017). The complexity of subjectivity is further problematized when we refer to marginalized populations like disabled women. There are many women in disabled communities who take up resistance against dominant narratives that position them as Othered or less than. This stance is a subversive, marked departure from the mainstream. There are also women in disabled communities who internalize damaging narratives about what disability and sexuality means. Such disparities in subjectivity, from subversion to internalization, point to the power of dominant social narratives and the need to interrogate how that power positions and marks disabled women in society. Moreover, disabled women are not positioned in a simplistic binary way whereby disabled women either wholly resist these social narratives or disabled women internalize them. Often there are elements of both resistance and internalization intricately weaved throughout a disabled woman's life. This informs subjectivity in unique and complex ways. There is further complexity when examining disability and disabled women in terms of identity politics. Disability is a political negotiation and the power relations are unbalanced in favour of non-disabled people (Garland-Thomson, 1997). This can influence disabled women's identity and sense of self. Disability becomes attributed through its representation. It is not an essential concept. It is constructed to represent inferiority in the interests of preserving a dominant superiority (Garland-Thomson, 1997). Disability is a cultural and political interpretation driven by representations rooted in corporeal comparisons based on exclusions and affirmations (Garland-Thomson, 1997). Meanings are attributed by social relations of power that 21 legitimate valued characteristics and mark others as inferior through representations (Garland-Thomson, 1997; Gergen, 2015; Shildrick, 2009). These representations produce and reproduce identity as the production of disability happens through "positioning, interpreting, and conferring meaning" (Garland-Thomson, 1997, p. 10). Talk constructs the social categories that influence identity and, consequently, how a person does or does not fit into those categories (Gergen, 2015). This talk is a social representation and can take the form of descriptions, explanations, criticisms, or congratulations (Gergen, 2015). How a person identifies is a political process that depends, in large part, on how they are represented in others' talk (Gergen 2015). When stereotypes are created that "group" populations, it enters into the realm of identity politics, and many individuals who might be classified into "groups" may feel a resentment toward that classification (Gergen, 2015). The notion of disabled grouping put forth by Garland-Thomson (1997) describes the homogenization of disabled people that takes place when it is agreed by non-disabled people that a departure from mainstream ideals has taken place. However, the greater complexity within disabled communities is overlooked within this homogenized view and it disregards important aspects of life such as sexuality. Disabled women become marked as alike in their collective departure from the "norm" which then clouds any social recognition of their individuality. Disability is complex and fluid - certainly more complex than the mainstream social, cultural, and political representations of it (Garland-Thomson, 1997). Nonetheless, these perceptions influence the narratives dominantly adopted by society. However, in terms of identity, how someone adopts or resists these narratives is a factor in shaping both the identity and the narrative (Garland-Thomson, 1997). Thus, there is complexity in how identity is produced by the production of narratives and vice versa. Narratives of bodily difference need to 22 be highlighted at the periphery in order to expose and interrogate the norms being held-up by the dominant centre (Garland-Thomson, 1997). Gergen (2015) lays out three waves of identity politics: there is resistance in the rejection of dominant, unhelpful misrepresentations; there is identity activism in efforts made by marginalized populations to express their stories in their own voices; and, there is category deconstruction in breaking the essentialism that perpetuates Othering. Therefore, it is important to highlight the subversive subjectivities that break away from the socially constructed misrepresentations of disabled women's sexual lives and experiences. 2.5 Emotional Labour Another important theme that arises in the literature about disability and sexuality is the concept of emotional labour. Emotional labour describes the labour or work that disabled people engage in when navigating relationships and interactions with non-disabled people. Emotional labour is also referred to as hidden labour (Scully, 2010), because it is not overtly seen or understood by those unaffected by it. Disabled women across many cultures often focus more on managing others' emotions relating to disability than on putting their own needs and desires first (Batty, McGrath, & Reavey, 2014; Beckwith & Yau, 2013; Esmail et al., 2007; Goodley, 2017; Liddiard, 2014; Linton, 2007; Mona et al., 2009; Odell, 2010; Scully, 2010; Zitzelsberger, 2005). Additionally, disabled women not only tend to put others first, but they often feel the need to police their own emotions for fear of others' reactions or possible social repercussions (Batty et al., 2014; Beckwith & Yau, 2013; Esmail et al., 2007; Goodley, 2017; Liddiard, 2014; Linton, 2007; Mona et al., 2009; Odell, 2010; Scully, 2010; Zitzelsberger, 2005). Hidden labour applies to sexual relationships as well. 23 Disabled women are seen as passive rather than active sexual agents. Their sexuality is frequently evaluated in terms of their ability to satisfy their partners rather than in terms of their own pleasure, which is due in part to heteronormative constraints placed on sex (Liddiard, 2014; Mona et al., 2009). Tracy Odell (2010) felt like she would never be able to sexually satisfy a partner because of her impairment and that she would not oppose a partner taking a mistress for sexual satisfaction. Linton (2007) also speaks openly about her early, post-injury sexual experiences in a new body. She states that intimacy came with a feeling of shame and a feeling that she was a burden and would not be able to sexually satisfy a partner. Further, a study done by Liddiard (2014) highlights the feelings of many disabled women and their experiences in having to work to compensate non-disabled partners in efforts to make-up for their impaired bodies. Many women mentioned working harder to pleasure partners in efforts to not appear sexually inadequate, sacrificing their own pleasure in the process (Liddiard, 2014). One woman in Liddiard's (2014) study allowed her partner to seek sexual satisfaction elsewhere because she did not feel she could provide that satisfaction herself and this was also an experience shared by Odell (2010). Yet another study by Esmail, Munro, and Gibson (2007) described how women faked orgasms in order to add to their partner's pleasure and also suffered in silence through bad and painful sexual interactions in order to pleasure their partner. That disabled women make these sacrifices, and see themselves as sexually inadequate, is telling of the influential power of pervasive, intersecting oppressive discourses that place disabled women in emotionally laborious positions. Returning to the idea of emotional labour as hidden labour, Odell (2010) recalls the pressure she felt when she was younger to work harder in any relationship with non-disabled people to prove them wrong about disability. Linton (2007) speaks about feeling the pressure to 24 be excessively upbeat to counter the dominant view of disability as tragedy. Disabled people are pressured to perform their emotions a certain way (Linton, 2007). This pressure to perform is connected to the notion of passing as a kind of hidden labour or hidden work. In this context, passing refers to engaging in the labour necessary to hide an impairment in order to appear non-disabled (Scully, 2010). In navigating relationships with non-disabled people, the pressure to look "normal" is real for disabled women (Batty et al., 2014; Liddiard, 2014; Odell, 2010; Scully, 2010; Zitzelsberger, 2005). For example, women who have experienced limb absence sometimes manage their bodies in sexual interactions by hiding their limb absence, when possible, in efforts to pass as close to "normal" as possible (Batty et al., 2014). Women in this study also mentioned the work in performing their gender differently specifically because of limb absence; they felt a need to adhere over and above to sexist, feminine ideals because their bodies do not match ableist body standards (Batty et al., 2014). Similarly, Liddiard (2014) found that women made efforts to hide bodily differences during sexual interactions due to the harsh comparisons to the socially constructed “normative” body. These examples of disabled women's emotional labour, especially the work to pass, reveals the extent to which disabled women sometimes devalue aspects of their bodies and their sexuality as a result of the entanglement of influences of oppressive cultural discourses. How others perceive and react to disability is a factor in how physically disabled women see themselves, and also affects how they portray themselves (Beckwith & Yau, 2013; Zitzelsberger, 2005). The internalization of ableism plays a role here, which I turn to later. When passing is not an option, disabled women also police their own emotions. With noticeable impairments, controlling self-presentation to the non-disabled world can become significant. To gain access, relationships have to be managed (Goodley, 2017; Linton, 2007; 25 Scully, 2010). One way this is accomplished is through gratitude. Disabled people are expected to show gratitude for the access they receive, even when access is a basic human right (Scully, 2010). Sometimes disabled people are forced into the work of the “grateful role” because there is more at stake for them socially if they do not perform in certain ways (Goodley, 2017; Scully, 2010). Because disabled people are already significantly marginalized in society due to power differentials that oppress them, rocking the boat is not always a choice for them. Disabled people learn how to respond to the expectations of a privileged, non-disabled culture (Goodley, 2017). Being passive, grateful, or silent in the face of ableism are common forms of hidden labour used to avoid being targeted as problematic (Goodley, 2017). It is not that disabled people are not invested in change, but rather that they have more to lose by speaking up than remaining silent in certain interactions. Linton (2007) describes her struggle in early experiences with ableism by stating that she often felt alone, but also felt the need to remain silent about it for fear of backlash. It took her many years to come to a place of resistance against ableist oppression. 2.6 Re-imagining Disability and Sexuality Campbell (2008) suggests that to re-imagine, we must "shift the gaze" (p. 1) from disability to ableism in order to expose the social function it holds in privileging some and oppressing others. Ableism is an intentional practice that Campbell (2008) names, quite aptly, as the "violence of normalization". The re-imagining of disability narratives depends on conversations about ableism that expose and destabilize ableist practices (Campbell, 2008). As Campbell (2009) further states, "[R]egimes of ableism have produced a depth of disability negation that reaches into the caverns of collective subjectivity to the extent that the notion of disability as inherently negative is seen as a ‘naturalized’ reaction to an aberration" (p. 166). Defining disability and identifying people as disabled are social practices that involve an unequal 26 exercise of power and have economic, social, and political consequences (Wendell, 1996). To ignore these practices is to be naïve to the power of language and definition - but to understand this power it is essential to ask who does the defining in practice, for what purpose, and with what consequences for those who are deemed to fit the definitions (Wendell, 1996). The presence of disability upsets the modernist craving for ontological security (Campbell, 2009). Disability is framed as lacking, sad, and undesirable; a shortcoming at best, a tragedy at worst (Mingus, 2011). For many people, even the idea that we can understand disability as something other than wrong is a huge shift in thinking (Mingus, 2011). This shift in gaze is a notion also put forth by Linton (1998a, 2005) when she suggests the need to interrogate the non-disabled position in society and the privilege and power that sustains it. The non-disabled category is not the universal position that disabled people deviate from, it is a category of people whose power and cultural/social capital keep them at the centre (Linton, 1998a). Linton (1998a, 2005) focuses on the lack of social fit from a disabled perspective, not on disability itself. She calls for an examination of the politics of the social positioning of dominant society and an analysis of representations that reinforce that control and dominance. These issues are addressed by feminist critical disability studies with a significant focus on exposing and combating ableism in disability representation. Re-imagining disability and sexuality effectively cracks open the foundations that uphold an ableist design of human value and interrogates the practices that privilege and oppress based on that design. Feminist critical disability studies contests that disability is problematic and in need of elimination from society. Rather, disability is re-framed as an inherent part of the human condition. As Garland-Thomson (2012) states, everyone experiences disability at some point in life and so attempts toward its erasure are both unproductive and impossible. In her theorizing, 27 and I agree, disability is perhaps an essential characteristic of being human (Garland-Thomson, 2012). Further, the important need for a focus on ableist representations of disability is framed by Mia Mingus (2011) in her online activist blog, "ableism is connected to all of our struggles because it undergirds notions of whose bodies are considered valuable, desirable and disposable" (para. 18). In this sense, disability is embedded in human existence, and the social practices of defining its parameters through representation should be of concern for everyone in society. Garland-Thomson (2012) conceptualizes disability as what is rather than what ought to be; she views disability as contingent rather than the nature of the environment. The human variations thought of as disability are interruptions or departures from an ableist script of human form, function, behaviour, or perception that in contemporary North American thought we call normal (Garland-Thomson, 2012). However, this standard is unreachable by most and cannot be held for long by those who do reach it. The review of literature thus far displays the gap in the social recognition of disabled women as sexual beings. Disability and sexuality are two concepts that are rarely juxtaposed, and even less likely to be interrogated. Thus, it is an important site for re-imagining. Much of the literature in the area expresses the need for new ways of thinking about sex and pleasure, greater focus on the sex-positive experiences of disabled women, and stories that highlight the sexual social positioning of disabled women that might limit positive experiences (Drummond & Brotman, 2014; Esmail et al., 2010; Esmail et al., 2007; Fritz et al., 2015; Jungles & Bender, 2015; Leibowitz, 2005; Leibowitz & Stanton, 2007; Liddiard, 2014; Linton, 2007; Mona et al., 2009; Parker & Yau, 2012; Sahay, Haynes, Rao, & Pirko, 2012; Shakespeare et al., 1996; Shildrick, 2009; Trace, 2014). The desires and needs of disabled women do not necessarily or inherently differ from those of non-disabled women, but this is not talked about in the current, 28 dominant, ableist narratives in North America (Esmail et al., 2010; Fritz et al., 2015; Linton, 2007; Parker & Yau, 2012; Sahay et al., 2012; Trace, 2014). Linton (2007) personally experienced the lack of focus on sexual needs and desires that pervades the medical, rehabilitation focused world, and she came to be interested in linking disability with a robust sexual life. She states in her memoir that "pleasure isn't dependent on certain standards of performance, and on intact bodies" (Linton, 2007, p. 82). When disabled people invent new ways of engaging in and understanding sex, the cultural norm is called into question (Linton, 2007). Conversations about sexual exploration, sexual discovery, and sex-positive approaches to pleasure are important for disabled women, and there needs to be more space made for this perspective (Drummond & Brotman, 2014; Esmail et al., 2010; Jungles & Bender, 2015; Leibowitz & Stanton, 2007; Linton, 2007; Mona et al., 2009; Parker & Yau, 2012; Trace, 2014). In a sex-positive memoir, disabled activist and sex educator, Kaleigh Trace (2014), attempts this by being delightfully and intentionally sexually crude so as to break open the conversation in ways that allow for no going back. She is a proponent of resisting the mainstream narrative of what sex is/looks like/feels like (Trace, 2014). In the case of an acquired physical disability, Parker and Yau (2012) state that experimentation and exploration in finding new erogenous zones and getting to know one's body creatively in its new form is key to sexual expression. Disabled sex is not tied to heteronormative, phallocentric, penetrative sex, and can be said to be freeing for those engaging in it, as it can open up the very notion of what sex can look and feel like (Esmail et al., 2010). Many women also speak about the benefits of disabled sex in the area of communication with partners. When in a supported relationship with a trusted partner, some women express that their impairment leaves no choice but to communicate effectively with their 29 partner in efforts to explore sex together (Drummond & Brotman, 2014; Esmail et al., 2007; Leibowitz, 2005; Parker & Yau, 2012). Sexual expression and sexual pleasure are human rights, but, when it comes to disabled people, these human experiences are often disregarded and sometimes even contested. This questioning of rights is a threat to sexual citizenship and a re-imagining of disability and sexuality is needed if sexual citizenship for disabled people is to be attained. Of note, there are bodies of literature across disciplines that interrogate and problematize the concept of citizenship and sexual citizenship (e.g., Richardson, 2017). I am not invalidating those efforts. However, for the purposes of this research, I chose the term because it resonates. I use sexual citizenship to open up spaces of belonging for those whose sexuality is positioned on the margins of society - it is about the politics of recognition. The foundational work in the area of sexual citizenship as it relates to disability studies dates back over twenty years and is defined in terms of sexual pleasure, desire, expression, and rights (Shakespeare et al., 1996). This is no less relevant today. Disability activist movements often use the term citizenship in a political sense because of their commitment to civil liberties and citizen demands. In fact, historically, their citizenship has been threatened, taken away, and/or denied in many ways (Stainton, 2005). This includes rights to sexuality. Moreover, the women in this research also supported the use of the term and it resonated with them. Sexual citizenship is a way of being in the world that promotes choice and rights as it relates to sexuality and disability. Its major barrier is social discrimination, not impairment; impairment is not the causal factor in the lack of sexual citizenship (Shakespeare et al., 1996). It is integral to focus on sexual rights as they are often overshadowed by advocacy for other significant rights within disability communities (Esmail et al., 2010). Disabled women see 30 sexual intimacy as important for their sexual lives and well-being, and some women report wanting to be more sexually active than they currently are (Fritz et al., 2015; Sahey et al., 2012). Sahey and colleagues (2012) found that the disabled women in their study were still very interested in sex, and that they are actively pursuing that desire because they consider their sexual lives to be an important personal focus. In another study, disabled women described intimate relationships as beneficial, a safe space, and a means to challenge oppressive discourses (Liddiard, 2014). These sexual interactions also provided reassurance of the self as desirable, contradicting dominant cultural representations of disabled bodies and sexuality (Liddiard, 2014). This directly challenges the narrative that disability is tragic or that disabled women cannot be sexually active agents. Women note that they need to be recognized as sexual beings, but that they need social support in that endeavour (Parker & Yau, 2012). Making room for more inclusive and positive narratives on disabled sexuality and insisting on positive sexual representations of disabled people rather than ones that devalue them opens up the parameters of sexuality for everyone regardless of individual embodiment (Shildrick, 2009). 2.7 Disability Justice Re-imagining disability and sexuality can lead to a transformation of existing social narratives that come to be rooted in disability justice as opposed to ableism. This idea links to the concept of sexual citizenship, outlined above. As Linton (1998a) states, there is a need to respond to disability in a less deterministic or medicalized way and a more integrated and inclusive way that allows for subjectivity and self-determination. She also states that there needs to be greater presence of impairment in disabled experiences instead of separating it from the social barriers that create disability. The experience of impairment for disabled people is significant, and it is personal as well as political (Linton, 1998a). Linton (2005) also states that 31 we must "weave disabled people back into the fabric of society, thread by thread, theory by theory" (p. 518). We must aim to expose the ways that disability has been framed and work to naturalize disabled people in efforts to "remake full citizens whose rights and privileges are intact, whose history and contributions are recorded, and whose often distorted representations in art, literature, film, theater, and other forms of artistic expression are fully analyzed" (Linton, 2005, p. 518). Representation affects social justice, and re-imagining disability moves toward the aim of disability justice (Garland-Thomson, 2005a, 2005b; Linton, 1998a; Mingus, 2011). Re-imagining disability accomplishes important cultural work. First, it shows disability as a significant human experience that occurs in every society, every family, and most every life; second, it helps us accept that reality; third, it helps integrate disability into our knowledge of human experience and history and to integrate disabled people into culture and society (Garland-Thomson, 2005a). Disability studies points out that disability is not so much a matter of the capacities and limitations of bodies, but more about what we expect from a body at a particular moment and place (Garland-Thomson, 2005b). Take, for instance, the perception/representation of dependence in society and how it relates to impairment and disability. Ableist culture values independence and thus sees dependence as humiliating/weak (Mingus, 2011; Wendell, 1989). We need a shift to a culture that values interdependence and recognizes that all people (disabled and non-disabled) need help in many forms and should not feel lesser for that need (Mingus, 2011; Odell, 2010; Wendell, 1989). As Mingus (2011) states in her activist work, "I am fighting for an interdependence that embraces need - no one does it on their own and the myth of independence is just that, a myth" (para. 8). Disability justice involves not only working toward ending ableist discrimination, but also formulating a logic that allows people to claim the identity 32 of disabled without having to conceive of it as a diminishment of the self (Garland-Thomson, 2005a; Mingus, 2011). To this end, much of feminist critical disability studies centers on interrogating and revising cultural narratives to re-imagine more deeply what it means to have a dynamic and distinct body (Garland-Thomson, 2005a). In further specific terms, disability justice is a notion that moves beyond social access or even the simplistic interrogation of the logistics of social barriers (Mingus, 2011). As Mingus (2011) posits, just because disabled people are in the room, it does not mean that there is no ableism. Aims toward disability justice through feminist critical disability studies push for an understanding of how ableism affects everyone's movements for justice, disabled and non-disabled together (Mingus, 2011). It draws connections between ableism and other systems of oppression and has the power to not only challenge our thinking about disability but to fundamentally change the way we understand social ordering and how we fight for social change (Mingus, 2011). It has the power to bring bodies back into the conversations in a complex and intersectional way (Mingus, 2011). It ties theory and activism together and aims to recapture the self from the position of Othered (Goodley, 2013). Mingus (2011) challenges researchers, organizers, and society in general to think of disability with an understanding of disability justice, moving away from an equality-based model of sameness to a model of disability that embraces difference, confronts privilege, and challenges what is considered “normal” on every front. As she states, "[W]e don’t want to simply join the ranks of the privileged; we want to dismantle those ranks and the systems that maintain them" (Mingus, 2011, para. 5). 33 Chapter Three: Theory and Methodological Design 3.1 My Theoretical Positioning My interest in disability studies was born of my interest in feminist studies. Both are critical theories and both seek to expose and interrogate social structures that privilege and oppress in un-balanced ways. As well as those parallels, however, I saw points of divergence in the two bodies of scholarship. Disability studies is critical of feminist theories for lacking meaningful inclusion of disability perspectives and overlooking the sexual rights of disabled women. Literature that combines these perspectives, known as feminist critical disability studies, offers much depth and makes sense to me theoretically (Campbell, 2008, 2009; Garland-Thomson, 1997, 2002, 2005a, 2005b, 2012; Kafer, 2013; Linton, 1998a, 1998b, 2005, 2007; Mingus, 2011; Samuels, 2003; Wendell, 2001, 2010; Shildrick, 2007, 2009). Malhotra and Rowe (2014) claim that disabled women face unique challenges due to the dual expectations of dominant gender norms of femininity as well as the role expected of disabled people. Disabled women are caught in a compounded expectation of being helpless, passive, dependent, etc., as the social expectations of both women and disabled people are similarly constructed (Malhotra & Rowe, 2014). There are parallels between the social meanings attached to female bodies and disabled bodies: both are positioned as subjugated/inferior in relation to their binary opposites of male bodies and non-disabled bodies (Garland-Thomson, 1997). That said, social practices related to the value of a woman’s body are complicated when considering sex and sexuality for disabled women. In sexual terms, society generally represents disabled women and non-disabled women very differently, and the constructs of woman and disabled are much more complex than what is socially ascribed or accepted. For example, a non-disabled woman might reject the social norms 34 of traditional femininity that valourize and objectify her sexuality, or norms that state the value and expectation of motherhood. A disabled woman, on the other hand, can be faced with the denial of recognition that she is a sexual being at all, as well as the denial of rights to motherhood (Webster, 2017; Zitzelsberger, 2005). The divides in social perceptions of femininity are clear between disabled and non-disabled women. Sometimes disabled women end up fighting for the recognition and rights that non-disabled women might have an option to reject. This is an area where more robust attention to disability must be considered within feminist theories (Webster, 2017). Further, the perspective held by Malhotra and Rowe (2014) seems to contradict an intersectional perspective because of how it separates identity categories (i.e. gender and disability) when the point of intersectionality is to see how axes of identity are interlocking. In this sense, disability studies has much to contribute to feminist studies by bringing greater complexity to the issues feminist movements have traditionally focused on (Garland-Thomson, 2002, 2005a; Linton, 1998a, 2005). Although intersectionality was sparked by feminism’s interrogation of gender and the civil rights movement's interrogation of race, critical disability studies takes up those interrogations through an even more complex lens. Like LGBTQ+ movements and queer theory, disability movements and critical disability studies seem to do a thorough job of incorporating intersectionality in action toward change (Shildrick, 2009). My reasons for combining critical disability studies with feminism are numerous. Critical disability studies can profoundly deepen feminist theories. The two are inextricably entangled. Just as feminism has expanded thoughts on gender - what society imagines as womanly - and has focused efforts on de-stigmatizing the subject position of woman, so has critical disability studies examined the identity disabled in the interests of full integration and inclusion of disabled people 35 within society (Garland-Thomson, 1997, 2002, 2005a). Disability, like gender, is a concept that pervades all aspects of culture, such as structuring institutions, social identities, cultural practices, political positions, historical communities, and the shared human experience of embodiment (Garland-Thomson, 2002). In other words, understanding how disability operates as an identity category and a cultural and political concept/practice will enhance how we understand what it is to be human (Garland-Thomson, 2002). Further, feminism's insistence that identity, subjectivity, and the body are cultural constructs to be interrogated, and that all representation is political, is a useful lens through which to interrogate disability (Garland-Thomson, 2002). However, the strands of feminist thought that are most applicable are those that undertake a broad socio-political critique of systemic, inequitable power relations that are grounded in representations of the body that privilege and oppress (Garland-Thomson, 1997, 2002). As mentioned, the initial rationale for bringing together critical disability studies and feminist perspectives was the recognition of the parallels in terms of how both perspectives interrogate power relations in society. Further, the importance of intersectionality requires a union of the two, a point critical to my thesis. There are feminist concerns in critical disability studies, but there are also critical disability studies concerns in feminism that, historically, receive much less focus or theoretical space. Therefore, this thesis seeks to carve out space in feminist studies for critical disability studies perspectives, especially when it comes to sex and sexuality for disabled women. By theorizing from this perspective and partnering with the women in this research, I hope that we have created work that moves toward a more unrestrained, intersectional, and socially just understanding of disability and sexuality. I have aimed to create work that helps to shift dominant social thoughts about disability and sexuality in 36 order to curb the privileging of sexually oppressive discourses that affect disabled women's sexual lives. 3.1.1 Feminist Critical Disability Studies Feminist disability scholars have raised many issues regarding attitudes toward and representations of the body that can contribute to women's oppression and social disablement (Wendell, 1989). The underpinning project of this theory is exposing oppression (Garland-Thomson, 2005a; Wendell, 1989). When we talk about exposing oppression and challenging social practices that maintain it, it is important to name the processes that produce marginalization. Feminist critical disability studies focuses on a multitude of intersecting and interlocking systems of oppression including, but not limited to, sexism, heterosexism, racism, and ableism, and interrogates the subjugation those systems maintain. There is a compounded significance for disabled women as sexist ideals are attached to the body as well as ableist body standards (Garland-Thomson, 2005a; Linton, 1998a; Shakespeare et al., 1996; Wendell, 1989). Through these oppressive systems, fashioning of disability becomes a construction of that which it is not in relation to the dominant ideal (Goodley. 2013). Feminist critical disability studies moves to address multiple oppressive practices in social, cultural, and political contexts. Critical disability studies reminds us of the centrality of disability when we consider the politics of life itself (Goodley, 2013). In this sense, then, disability becomes entangled with other forms of oppression and revolutionary responses. There is an intersectional character to disability, and disabled people can be seen as the ultimate intersectional subject (Goodley, 2013; Linton, 1998a). Critical disability studies adds a critical dimension to thinking about issues such as autonomy, competence, wholeness, independence/dependence, health, physical appearance, community, and notions of progress and perfection - issues that pervade every aspect of culture 37 (Linton, 1998a). Further, as Garland-Thomson (1997, 2002, 2005a, 2005b, 2012) notes, everyone will eventually move through disability at some point in their lifetime. Therefore, to theorize the world through disability is important for all persons. Disability discourse can be seen as relative to all identity discourse, and to create inclusive language/practices regarding disability then becomes important for the wider population, not just disability communities. Simi Linton (1998a) speaks of disability as a prism through which to gain a broader understanding of human existence and variation. It is inextricably linked with human existence, and it is a starting point from which to theorize that existence. Goodley (2013) suggests that critical disability studies is, in part, theorizing the body as the place where self and society collide and interact. A body that becomes an object of oppressive practices is an opportunity to think through/expose those practices (Goodley, 2013). The word critical in critical disability studies makes space for reassessment in terms of where we have come from, where we are at, and where we might be headed; it makes space for reassessment of the conventions (Goodley, 2013). As mentioned above, disability studies offers much to feminist studies. Disability adds to feminist theories in that it pushes the boundaries of acknowledgement of physical diversity, allowing for it to be conceptualized more thoroughly (Garland-Thomson, 2002). The coming together of both theoretical positions is ideal for interrogating the intersectional nature of disability. With such a parallel between feminism's challenge to patriarchal sexism and disability's challenge to ableist social practices, feminist critical disability studies strives toward re-imagining and re-writing oppressive social scripts on grander scales (Garland-Thomson, 2005a). Feminist critical disability studies can help reveal ideals as artificial social creations that Other and oppress everyone through projected rejection/fear of a sexist and ableist mainstream culture (Wendell, 1989). Feminist critical disability studies augments terms and confronts limits 38 in the ways we understand human diversity, the materiality of the body, and the social formations that interpret bodily differences (Garland-Thomson, 2002). Feminist critical disability studies engages several of the fundamental premises of critical theory: 1) that representation structures reality, 2) that the margins define the centre, 3) that gender (or disability) is a way of signifying relationships of power, 4) that human identity is multiple and unstable, and 5) that all analysis and evaluation have political implications (Garland-Thomson, 2002). Feminist critical disability studies unsettles tired stereotypes about disabled people; it seeks to challenge our dominant assumptions about disability and situates disability experiences in the context of rights and exclusions (Garland-Thomson, 2005a). It presents disability as a system of representations that mark bodies as subordinate, and it focuses on examining the patterns of meaning attributed to those bodies as opposed to a focus on specific form or function (Garland-Thomson, 2005a). Feminist critical disability studies scrutinizes how people with a wide range of "differences" are collectively imagined as defective and excluded from an equal place in the social order (Garland-Thomson, 2005a, 2005b). Theorizing disability from a feminist critical disability studies lens allows one to probe identity and representation, theorize intersectionality, and investigate embodiment (Garland-Thomson, 2005a, 2005b). It is a complex theoretical position, but one that makes space for the kind of work and progress that is needed to re-imagine sexuality and disability and to strive toward disability justice. 3.1.2 Disability Language I would like to take some time to address the specific language I use in relation to disability. When talking with the women who participated in this research, I made the decision to follow their lead on the language they prefer to use. Personally, however, I intentionally use the term disabled people/women in my writing rather than the oft argued "politically correct" term 39 people/persons/women with disabilities. My reason stems from the social model of disability that focuses on how society disables people; people are disabled by socially oppressive structures of power. To say people with disabilities takes the focus off of the social practices that construct disability, and it places more focus on disability being a personal fault or flaw (Titchkosky, 2011). Disabled people are expected to look, act, and move in certain ways to fit into a built environment rooted in dominant, ableist interests (Garland-Thomson, 2005b). If and when they do not, they become disabled. I also use the term disabled people/women to call attention to disability rather than exclude its existence. This approach is in line with many North American disability activist communities (Linton, 2007). Disabled people are expected to mask what might disturb the public and certainly not exaggerate or call attention to their disability (Linton, 2005; Stone, 2010). The use of disabled, and also my use of non-disabled, is in agreement with Simi Linton (1998a) who suggests that the intentional use of this language centers disability instead of erasing it or positioning it as lesser to the favoured view of "ability". She states that to say able-bodied in reference to the dominant population casts disabled people as the negative against the abled ideal. To say non-disabled puts disability back in the conversation and also allows disabled people space for a reclamation of their disabled identity, which is a celebrated identity amongst many people in disability communities (Linton, 1998a, 2007). Instead of placing disability as a secondary characteristic or an individual flaw, disabled people or disabled women marks disability as a key piece of identity to be paid attention to and lessens the risk of erasure by the dominant practices of an ableist culture (Linton, 1998a). The language I use is identity first, as opposed to person-first (Linton, 2007; Titchkosky, 2011). Person-first language is aligned with the above referral to people/persons/women with disabilities, in that it puts the person first, and de-centers disability (Linton, 2007; Titchkosky, 40 2011). The medical model of disability uses this phrasing, as does political legal legislation. People first language places disability outside of personhood and minimizes its human element (Linton, 2007; Titchkosky, 2011). It is in line with a narrative that pushes disability aside and risks its further marginalization and potential erasure. It can be understood where someone might be coming from in using person-first language, and many members of disability communities use this language. For example, a study with disabled women revealed that these women preferred person-first language in relation to their sexual expression (Payne et al., 2016). The women felt that society has a harder time attaching sex to disability, so language that centered them as people first was more conducive to their sexual citizenship (Payne et al., 2016). While I am sensitive to and understanding of this perspective, and I respect whatever language my participants choose to use, I disagree with this stance. I believe we need to actively re-think disability as it relates to sexuality, and this starts with language. We need to frame it as acceptable for sexuality to be associated with disability or impairment instead of removing it from the equation. 3.2 Methodological Design My research framework is qualitative. It is anti-essentialist and interpretive in that it takes on a social constructionist position to meaning (Denzin & Lincoln, 2011; Lincoln, Lynham, & Guba, 2011). This paradigm also borrows from poststructuralism/poststructuralist thought regarding the representation and positioning of disabled women through language and discourse. Coming from a social constructionist paradigmatic positioning, knowledge is seen as constructed by social interactions and relationships (Burr, 2015; Gergen, 1999, 2009, 2015; Gergen & Gergen, 2003). Language is a key focus, and I draw on poststructural ideas around language in my discourse analysis of the data to interrogate language on individual, social, cultural, and 41 political levels. There is a particular richness to social and linguistic worlds that individuals and groups create, co-create, and re-create that gives rise to this type of qualitative inquiry and the endless possibilities within those frameworks (Lincoln et al., 2011). Qualitative work stresses the socially constructed nature of reality, the intimate relationship between the researcher and what is studied, and the situational constraints that shape inquiry (Denzin & Lincoln, 2011). Qualitative inquiry is seen as a "crystal" with a multi-faceted make-up and many sides to look through; it is complex and refracted (Denzin & Lincoln, 2011). 3.2.1 Social Constructionism The theoretical underpinning of this research design is social constructionism. Social constructionism aligns well with my theoretical positioning given that the majority of feminist disability scholars and activists advance the view of disability as socially constructed. Social constructionism can be explored initially by outlining its ontological (nature of reality), epistemological (nature of knowledge), and methodological (nature of inquiry) foundations (Mertens, Sullivan, & Stace, 2011). Ontologically speaking, social constructionism is rooted in relativism; it sees reality as shaped or constructed, as well as co-constructed by relationships, interactions, and the discourse(s)/language used by people and structures (Lincoln et al., 2011; Mertens et al., 2011). Social constructionism holds to the idea that there is no single discoverable nature, but that social practice shapes our world knowledge, and that process is fluid (Burr, 2015; Gergen, 1999, 2009, 2015). The notion of “truth” is problematized. From an epistemological stance, social constructionism sees knowledge as socially situated and as a subjective and transactional relationship between the knower and the knowable; meaning is constructed and forms the foundation of knowledge (Lincoln et al., 2011; Mertens et al., 2011). Knowledge is an agreed upon perception resultant from social interaction and agreement (Burr, 2015; Gergen, 42 1999, 2009, 2015). Methodologically, social constructionism is hermeneutical (interpretive), and constructions of knowledge are elicited with an aim of inquiry toward social understanding and the possible reconstruction of meaning (Lincoln et al., 2011). Mertens and colleagues (2011) also mention an axiological (nature of ethics) positioning, and this will be explained in the ethical considerations section of this thesis. The main tenets of social constructionism are clear. Social constructionism is anti-essentialist in that it is not held to essentialist scripts of an innate "essence" of a person or the world around them (Burr, 2015). The world, and a person's understanding of it, is constructed by relationships, interactions, and language; when people talk, the world gets created (Burr, 2015; Gergen, 1999, 2009, 2015; Gergen & Gergen, 2003). Social constructionism functions on individual as well as social, cultural, and political levels (Burr, 2015). These levels of construction are rooted deeply in the significance of language and discourse. For instance, Gergen (2009) states three main contributors to reality making from a social constructionist perspective: language used to relate, the process of daily interactions, and the institutions in which we live. Further, there is a constructive force to language (Burr, 2015; Gergen, 1999, 2009, 2015; Gergen & Gergen, 2003). People are positioned by relationships with others and the world around them, and society constructs versions of reality together (Burr, 2015; Gergen, 1999, 2009, 2015; Gergen & Gergen, 2003). Meaning is born of coordinated agreements and negotiations among people in interactions (Burr, 2015; Gergen, 1999, 2009, 2015; Gergen & Gergen, 2003). Finally, language constitutes social life, and social constructionism argues that our ways of understanding the world do not come from objective reality but from other people, both past and present (Burr, 2015; Gergen, 1999, 2009, 2015; Gergen & Gergen, 2003). We are born into a world where the conceptual 43 frameworks and categories used by the people in our culture already exist (Burr, 2015; Gergen, 1999, 2009, 2015; Gergen & Gergen, 2003). Social constructionism allows researchers to go beyond the simplistic and to appreciate the potential for co-creating the future (Gergen, 2009). To do this, we must explore how our taken-for-granted world has been brought into being. Social life is a seesaw dynamic between forces of stability and change and it is a collision of interaction and subsequent meaning making (Gergen, 2009). Society talks about and positions people in terms of constructed reputation and meaning (Gergen, 2009). For example, how disability is talked about by wider society positions what comes to be understood about it. Disability is a culturally fabricated narrative of the body, similar to what we understand as the fictions of race and gender (Garland-Thomson, 2002). The disability/ability binary system produces subjects by differentiating and marking bodies with meaning through language (Garland-Thomson, 2002). Disability is a story we tell about bodies; it is pliable, and can change over time and across place (Garland-Thomson, 2005b). Feminist critical disability studies is rooted in social constructionism and can help to reveal how the storied quality of disability invents and reinvents the world we share (Garland-Thomson, 2005b; Linton, 1998b). It can challenge collective representations of disability, exposing an exclusionary and oppressive system that some people may take for granted as the natural and appropriate order of things (Garland-Thomson, 2005b; Linton, 1998b). A narrative method fits well with this research aim. 3.2.2 Narrative Method Narrative inquiry, also referred to as narrative interpretation, or narrative method, is a qualitative methodology by which personal accounts/stories/narratives are gathered by a researcher and interpretively analyzed to reveal and understand the cultural influences on those 44 narratives and the meaning attached to them (Gergen, 2009; Malhotra & Rowe, 2014; Polkinghorne, 2007; Reissman, 2008). Narrative inquiry has social constructionist foundations; it is rooted in the social constructionist thought that knowledge is constructed in our everyday world through the communicative act of language and storytelling (Reissman, 2008). Narrative method highlights the relationship between narrative, time, and memory - but also context - as storytelling happens in a political context with discourses of power that circulate and permeate the process of meaning-making (Reissman, 2008). Narrative method brings a human element into focus to facilitate an appreciation of the barriers and discrimination experienced by marginalized and oppressed groups (Malhotra & Rowe, 2014). Narrative work must grapple and contend with dominant cultural understandings, such as ableism, in order to re-frame those understandings (Malhotra & Rowe, 2014). This links to the aforementioned need to shift the gaze in order to re-imagine disability and sexuality. There is the potential of people's narratives to subvert and transform mainstream thought through the process of liberating voices otherwise silenced or ignored (Malhotra & Rowe, 2014). Narrative inquiry exposes the functions of privilege and oppression by uncovering who generally gets heard in society, who does not, and why (Malhotra & Rowe, 2014; Reissman, 2008). Thus, narrative work highlights that the production of knowledge is profoundly political (Malhotra & Rowe, 2014). Subversive stories highlight and challenge how hegemony is created by an established social ordering process (Malhotra & Rowe, 2014). Disability narratives can be an invaluable site for the analysis of the oppressive context that surrounds the lives of disabled women and their sexual citizenship. Narrative work is empathic; it is geared toward giving voice to the unheard and marginalized in efforts to generate understanding (Gergen, 2009). This work attempts to close the distance between social groups and stimulate social or political action 45 (Gergen, 2009). In a justification for studying disability and sexuality written over twenty years ago, Shakespeare and colleagues (1996) wrote that stories about disability and sexuality can challenge the non-disabled world to recognize, value, and support disabled sexual expression. He states that this approach places the issue on the agenda and offers disabled people validation of their experiences (both positive and negative) which are otherwise silenced or ignored. These statements still resonate today, which says something about the state of our research progress in the field of disability and sexuality. The goal of narrative method is to generate (co-construct) and gather detailed accounts with participants, and to always make sure the participant's voice is centered in the process (Morris, 1992; Reissman, 2008). The importance of centering disabled women's voices is put forth by Morris (1992) when she re-frames work done by black activist, Patricia Hill-Collins. Morris (1992) cites a resonating quote by Hill-Collins (1990): "Groups unequal in power are correspondingly unequal in their ability to make their standpoint known to themselves and others" (as cited in Morris, 1992, p. 158). Further, Morris (1992) quotes another black activist, Audre Lorde (1984): "It is axiomatic that if we do not define ourselves for ourselves, we will be defined by others - for their use and to our detriment" (as cited in Morris, 1992, p. 164). Strikingly similar to this sentiment is the phrase, "Nothing about us, without us!", which comes from many current disability activist movements. So, although these thoughts were initially put forth by activists railing against racism, their applicability to the disability community's fight against ableism is clear. In narrative research that effectively interprets assembled stories, researchers need to justify their interpretations for the reader (Polkinghorne, 2007). The general purpose of an interpretative analysis of storied texts is to deepen the reader’s understanding of the meaning 46 conveyed in a story (Polkinghorne, 2007). An interpretation is not simply a summary of collected narratives; it is a commentary that uncovers and clarifies the meaning of the text (Polkinghorne, 2007). It draws out implications in the text to uncover social, cultural, and political elements of influence (Polkinghorne, 2007). Narrative interpretation focuses on a storied text by drawing out its themes and identifying the contextual environment that shaped the story/narrative, and the meaning attached to it by the storyteller (Polkinghorne, 2007). I would like to note here that narrative inquiry is defined and taken up in many ways by different researchers. The stories I elicited from the women in this research are not all-encompassing life stories, but they are indeed complex and comprehensive stories within the context of the research topic, a focus on disability and sexuality. The narratives elicited here are contextual narratives - valuable pieces of the lives of these women. 3.2.2.1 Discourse Analysis The interpretation of narratives can be done through a comprehensive discourse analysis of the texts collected. This fits with a narrative method because a strong analysis of narratives prompts the reader to think beyond the surface of the text and toward its broader concepts (Reissman, 2008). For instance, the focus here is the interrogation of dominant discourses and the productive power and role of oppression, but also a move toward disability justice for the sexual rights and citizenship of disabled women through the power of subversive discourses. Narrative analysts interrogate language. Discourse analysis is a fitting method for this interrogation. Through a discourse analysis of narratives, a researcher can look at how and why stories are told or constructed, what structures and relations are at play in that process, and whether there is a counter-narrative challenging the hegemony, or an internalization of that hegemony (Reissman, 2008). Discourse analysis is an analytical approach to methodology that is 47 complex in nature. There can be confusion around its specific approach and aim if it is not explicitly defined by the researcher utilizing it (Cheek, 2000). This definition can vary depending on the researcher's theoretical and methodological positioning. Thus, it is important to clearly define what is meant by discourse(s) when considering discourse analysis. Discourse(s), synonymous in this description with texts, images and/or language, is any form or representation of reality (Cheek, 2004). That said, the texts, languages, and images that comprise discourses are seen as versions of reality, not mirror-images of one pre-existing truth (Berg, 2009; Cheek, 2004). This can take shape in literature, media images or media in all forms, interviews and interview transcripts, procedures, field notes and so on, to communicate and convey particular aspects of reality in particular ways (Cheek, 2004; Wood & Kroger, 2000). Discourses are the scaffolds of discursive frameworks that order reality in certain ways (Cheek, 2004). Discourses enable and constrain the production of what comes to be understood as knowledge and, in that process, allows certain ways of thinking about reality and excludes others (Berg, 2009; Cheek, 2004). These versions of reality constructed through language serve to arrange social understanding. Language is not simply a descriptive tool or a communicative medium, but rather, it is a productive social practice (Berg, 2009; Wood & Kroger, 2000). This social practice is constitutive; it continuously creates the social world we come to understand and navigate (Wood & Kroger, 2000). In this way, language is seen as action; discourses are seen as a governing tool that can produce and control the understanding of knowledge within culture (Berg, 2009; Wood & Kroger, 2000). There is a dynamic relationship between discourses and the context in which they are produced: not only do discourses shape context, but context shapes discourses as well (Berg, 2009; Cheek, 2004). Discourses are, at once, the product and producer of social understanding; 48 texts are constitutive of and constructed by the context in which they are situated (Cheek, 2004). This process of meaning-making is a complex, bi-directional relationship. Thereby, through this process, the limitations and/or possibilities of versions of reality are presented through the social action of language. Discourse can be repressive in the sense that it can constrain ways of thinking, but it can also open up new ways of thinking (Berg, 2009). This links to the possibility to re-imagine disability, a common thread throughout this work. There are concepts to consider when attempting to understand the aims of discourse analysis. For the purposes of this research, the focus is mainly on the productive relationship between discourses and power, and how that informs the narratives that disabled women share about their sexual lives. Discourse analysts are suspicious of dominant narratives and seek to bring language into the material world where it can be understood as historically, politically, socially, culturally, and materially constituted, as well as constitutive (Cheek, 2004; Gannon & Davies, 2012). Which discursive frameworks are afforded presence in society is a consequence of power relations and the positioning of people and groups through that relation (Cheek, 2004). These power relations are both repressive and productive in their operation, enabling certain versions of knowledge to be produced and re-produced while constraining others (Berg, 2009; Cheek, 2004). Discourse analysis has interests in coming to understand not only which social groups benefit from this discursive power, but also how individual and group identities are constituted and positioned in power relations (Berg, 2009). Discourse analysts are concerned with the way in which texts have been constructed in terms of their historical, political, and social situatedness, as well as the role of language/discourses in the maintenance of political and social arrangements that dominate and oppress (Berg, 2009; Cheek, 2004). 49 An important aspect that underpins discourse analysis as a form of inquiry is that language is not transparent or value free, and it does not have inherent or universal meaning (Cheek, 2004). Rather, the meaning discourses hold in certain contexts is assigned by speakers and listeners according to the situation in which the language is being used (Cheek, 2004). Discourse analysts focus on interrogating language/discourses to uncover the assumptions implicit within it that shape the text in the first place (Cheek, 2004). Discursive formations have institutional origins embodied in processes and patterns of social behaviours and interactions (Berg, 2009). Discourse analysis focuses on ways that dominant social conceptualizations are structured and maintained in opposition to an external "other" - for instance, the concepts of "normal" and "abnormal" (Berg, 2009). This process of meaning-making and social positioning created and upheld by dominant social discourses is just one example of how the power relations of language function to serve/privilege some and oppress others. This process is what discourse analysis seeks to uncover. Key components of discourse analysis are an attempt to identify hegemonic discourses of power in action and to step outside those discourses to expose them (Berg, 2009). This exposure can then lead to a shift in social thought whereby previously oppressed discourses can be highlighted and appreciated. What must also be addressed when referring to discourse analysis is its relevance to the research. Why would a researcher choose discourse analysis? What does it offer? Discourse analysis serves to denaturalize that which seems to be natural, and to interrupt and interrogate essentialist thought (Gannon & Davies, 2012). Dominant or hegemonic discourses can be contested by subversive discourses and all discourses have inconsistencies, contradictions, and paradoxes (Berg, 2009). It is important to identify these inconsistencies, and equally important to identify how such inconsistencies might reinforce or challenge dominant meanings constituted in 50 discourse(s) (Berg, 2009). Moreover, it is critical to disrupt and interrogate such inconsistencies in efforts to create new understandings of discourses, which can lead oppressed subject positions and identities to flourish rather than continue to be constrained (Berg, 2009). Discourses sometimes rely on silences for their power; as such, it is important for discourse analysts to identify these silences and how they operate to position people in society, by either privileging or oppressing, and even possibly erasing, certain ways of understanding (Berg, 2009). There is a power to the silence that surrounds disability and sexuality and this will be discussed further in Chapter Four (Part Two). Discourse analysis has the potential to push the boundaries and margins of how language is understood. It can expose power relations that serve to privilege some and oppress others. It offers possibilities to make space for ways of thinking that challenge the hegemonic ideal that constrains. To do so, it must remain on the margins, resisting the pressure to mainstream or align its technique with more traditional and stringent forms of research (Cheek, 2004). Margins are a product of, and also produce, understandings of what the mainstream is (Cheek, 2004). Discourse analysis allows for heightened reflexivity through its exploration and interrogation of discourses, and ensures that it is not reduced to a thoughtless empirical technique (Cheek, 2004). 3.2.2.1.1 Poststructural Borrowings Coming from a social constructionist paradigmatic positioning, knowledge is seen as constructed by social relationships. Language is integral here, and I have drawn on poststructuralism/poststructuralist ideas around language in my approach to discourse analysis. Social constructionism can be said to be the foundation of poststructuralist stems of thought, so the two positions are linked (Burr, 2015). Language is a key focus of both. By social constructionism placing social interaction as a central focus, language follows as a significant 51 piece of this interaction, and thus, language becomes action itself (Burr, 2015). Discourses are a post-modern concept, specifically related to poststructuralist thoughts on language and meaning (Gannon & Davies, 2012). The way that discourses construct our experiences can be examined by ‘deconstructing’ these texts; taking them apart and showing how they work to present us with a particular vision of the world, and thus, enabling us to challenge it (Burr, 2015). Poststructural approaches focus on exploration and analysis of language as it refers to representations of reality (Cheek, 2000). It is an approach that interrogates the role language plays in constructing representations and understandings, and it deconstructs texts to trouble the assumptions underpinning those discourses (Cheek, 2000). Language represents and entails particular kinds of power relations, and meanings are produced by language (Burr, 2015). These meanings are never fixed, but rather, are always open to question and are always temporary (Burr, 2015). Poststructuralist thought analyzes subjectification - that is, how power works on bodies to produce us as subjects (Gannon & Davies, 2012). Thus, poststructuralist thought turns to discourses as the primary site for analysis (Cheek, 2000; Gannon & Davies, 2012). Poststructuralism promotes discourse analysis that encompasses more than conventional written or spoken data. It allows for macro-level texts such as societal discourses of ableism or sexism, as well as micro-level texts such as personal interactions or accounts outlined in interviews and transcripts of narratives (Gannon & Davies, 2012). As mentioned above, language is not only seen as descriptive, but constitutive. Poststructuralist thought shares this perspective with social constructionism, and poststructuralism seeks to bring language into a light that reveals its historically, socially, culturally, and politically constituted and constitutive 52 nature. (Gannon & Davies, 2012). In poststructuralism, the subject, constituted through discourses, is the pivot of operations of power (Cheek, 2000; Gannon & Davies, 2012). Poststructural thought has major implications for our understanding of people and their identity, how they understand the world and make meaning, and the possibilities for personal and social change (Burr, 2015). For example, the meaning that sexuality carries is inextricably bound to the social world (Burr, 2015). The role of meaning in our lives is paramount, and meaning is made by human beings together as a social process of interaction (Burr, 2015). Meaning is fluid, volatile, and always open to change through the medium of social interaction. Furthermore, sexuality is an area of our lives in which the meanings we have created are imbued with biased, mainstream prescriptions telling us how to look, feel, and act (Burr, 2015). These claims apply to disability as it relates to sexuality. To the extent that society is divided by numerous power inequalities, the meanings that are widely endorsed play a role in maintaining that power dynamic (Burr, 2015). Poststructuralism does work to highlight what discourses are privileged, what discourses are not, and what the consequences of those arrangements are. The exposure of the productive quality and power of language and how that process functions to maintain and be maintained by the dominant centres of society is integral work for social change and social justice. 3.2.3 Sampling The sampling for this project was done with the assistance of the executive director at Independent Living in Vernon, British Columbia. This organization seemed the best fit as I had met the executive director previously and the potential for recruitment seemed promising. This person was provided with the recruitment letter (see Appendix A) and participants were directed to contact me if they had questions or wanted to participate in the research. In order to expand 53 the pool of participants to a region outside of the Okanagan, I also attempted to recruit through the Lower Mainland of British Columbia with the assistance of a doctoral student affiliated with the UBC Vancouver campus. This recruitment yielded no additional participants. The sample of participants was a convenience sample, but the selection of women was purposive based on the best fit for the research and specific inclusion criteria. Participants had to be aged 18 years or older and must have voluntarily consented to the research. Each participant must have self-identified both as a woman and as physically disabled. Five women took part in the research. These women are represented by their chosen pseudonyms in this research: Gabbi, We, Wilma, Arianna, and Gail. They ranged in age from 35-64: Gabbi was 43 at the time of her interview, We was 46, Wilma was 35, Arianna was 64, and Gail was 48. Their physical disabilities varied from visible to invisible, sometimes a combination of both, and this included chronic illness. While all of the women currently live within the Okanagan area of British Columbia, they come from different racial, socio-economic, and socio-cultural backgrounds. A more robust portrait of each woman is presented in Chapter Four (Part Two). 3.2.4 Data Collection The data was narrative-based and in the form of one focus group and five individual interviews. I recorded the focus group and interviews and then personally transcribed all recordings. I kept all recordings, transcripts, and additional data such as analysis and notes in encrypted files on a password protected computer with backups to a secure research server. This information was only accessible to me and my supervisor, Dr. Rachelle Hole. All hard files were kept in a locked filing cabinet inside a locked university office. Before data collection, I consulted with some disabled women who formed an advisory committee for the study. The 54 purpose of this was to gain guidance in my research approach from the perspectives of disabled women. These women were affiliated with Independent Living (both service providers and service users) and were brought together with the assistance of Independent Living's executive director. This board meeting was a one-time consultation to create a framework that would best guide the focus group as well as the individual interviews. To begin the data collection, I conducted an opening focus group with three participants: Gabbi, We, and Wilma. It ran just over two hours. I went ahead with three of the five participants because the final two women had not yet come forward. I made this decision in the interest of timeline for data collection. It was not a requirement that all participants take part in the focus group, and it was made clear in the consent form (see Appendix B) that participation in the focus group meant that those participants would not have anonymity from one another. I chose to begin with a focus group because I wanted to facilitate rapport building and comfort around the topic in order to yield better quality data than individual interviews alone. The focus group was a success in this regard. The three women became comfortable with me and with each other, which led to an insightful group narrative. The focus group was unstructured and interactive (Richards & Morse, 2013). Focus groups serve to draw out salient concerns and perspectives (especially in less researched areas) as participants explore the topic together at their own pace, identifying their own key points (Richards & Morse, 2013). The focus group began with a fundamental question - What does sexuality mean to you? - and it developed from there. This allowed the women to give their own meaning to the term sexuality. The flow of the focus group was determined mostly by the women and also by my own enquiries with respect to what they shared. 55 Individual interviews took place in the weeks following the focus group and each one varied in length. They ranged from just under 1 hour to 2.5 hours. All interviews were semi-structured, consisting of some pre-developed questions that acted more as a narrative guide rather than a set of questions to be followed in strict format (see Appendix C). These questions were open-ended and constructed with the assistance of the advisory board mentioned above to ensure the guiding questions were formatted in the best possible way with insight from the board's perspectives. The questions were ordered in a way to elicit a participant's life story within the context of the topic of disability and sexuality, but not so restrictive that they would limit any sharing or discovery (Richards & Morse, 2013). Prompts and unplanned probes were used based on the context of each individual interview. This semi-structured approach allowed an opportunity for participants to tell their story at their own pace, and was used to gain insight from participants' experiences much like an unstructured approach would allow for (Richards & Morse, 2013). The focus group and interviews took place in locations that were accessible and comfortable for participants and they were scheduled at times that worked best for participants. Important to note here is the co-construction piece of this research as it was at play during data collection. There is a co-creation of meaning in qualitative work through the supplementing and affirmation of personal narratives - how a story is reacted to is as important as how it is told. Supplements act to both open-up and constrain meaning (Gergen & Gergen, 2003). Interviewing and transcription practices also play a major part in constituting narratives (Gergen & Gergen, 2003; Reissman, 2008). By listening and questioning in particular ways – the researcher shapes what participants say and how they say it (Reissman, 2008). Transcribing opens up questions about determining the boundaries of the narrative as well (Reissman, 2008). These are ways we 56 (researchers) participate in co-construction, and I needed to remain mindful of this throughout the entire process. This includes not only collection, but analysis as well. 3.2.5 Data Analysis Discourse analysis allows the research to move beyond the descriptive and into the discursive realm of analysis; it enables an exploration of representations in terms of the way they are shaped by and also shape dominant discourses (Cheek, 2000). It is not a literal translation of words; rather, it is about how the words are used and what intention underpins the choice of language used - the focus is on what is being conveyed through the language (Wood & Kroger, 2000). This process of attempting to understand the motives behind discourses begins with coding the data. Coding can take many forms in discourse analysis, but the aims are usually the same. There is generally some form of categorization of the data with particular attention paid to the ways in which both the producer and consumer of the discourses are positioned by the text (Berg, 2009). Discourse analysis is not about the researcher applying their own categories and themes to the data, but rather, it is about uncovering how participants (through their talk) have actively constructed their own categories (Wood & Kroger, 2000). I coded the transcribed data by identifying major discourses throughout it, as well as inconsistencies that might have offered insights. I colour-coded these discourses to allow for easier analysis. I conducted multiple read-throughs of the data so as to comprehensively consider the substance and the context of each piece aside from categorizing trends. Narrative work requires that the researcher be able to extract topics (abstraction) through categorization, but also that the story be seen as a whole (Richards & Morse, 2013). I wanted to make sure I deeply analyzed the data, but did not lose sight of the stories and voices in the process. Also of note, in some cases, the women used specific wording that became the names to describe how they 57 positioned themselves. In other cases, I interpreted their words and gave a particular positioning a name myself. Further, each woman was given their own respective findings section to review prior to finalizing the findings. This was an effort to keep our partnership open and communicative, as well as to ensure that the women's stories were accurately portrayed from their perspective. This is a tool referred to as member checking. I go into greater detail about this process in the next section where I discuss member checking. Member checking adds to the trustworthiness of the findings along with being a tool to help effectively analyze the data in a way that centers voice and enhances partnership within research (Richards & Morse, 2013). 3.2.6 Trustworthiness Qualitative research challenges rigid, scientific forms of research and this challenge is sometimes seen by more quantitatively minded researchers as an attack on reason and truth (Denzin & Lincoln, 2011; Polkinghorne, 2007). However, from a qualitative standpoint, social constructionist thought and, more deeply, poststructuralist thought, note the trouble in quantitative forms of research that attempt to legitimize one version of "truth" over another (Denzin & Lincoln, 2011). Qualitative researchers must resist the arguments that move to discredit their work and the attempts made to place their research back in a box of limitations (Denzin & Lincoln, 2011). I have framed this section as trustworthiness as opposed to validity because qualitative work does not align with the traditional definition of validity or truth. When we talk about validity in discourse analysis for example, the term is contested greatly. Discourse analysis is not a practice that aims to seek finality in terms of producing the only possible reading or "truth" in discourses (Cheek, 2004). The concept of finality directly conflicts with the theoretical positioning of social constructionism and poststructuralism as well as the methodological application of discourse analysis, all of which hold the belief that there are many 58 "truths"; so, this type of analysis does not align with traditional understandings of research validity (Cheek, 2004; Lather, 1993). With respect to the topic of validity, perhaps this concept can be seen as "texts" with its own discursive construction relating to understandings of research and what it "should" look like (Cheek, 2004; Lather, 2017; Lincoln et al., 2011). Therefore, the claims that form the foundation of such terms are debateable just like any other form of discourse. This states the arbitrary nature of validity in the first place and how, often times, power positions play into what is deemed valid or not; nothing is intrinsically valid, it is based on a community agreement (Lather, 2017; Polkinghorne, 2007). Data validity framed as trustworthiness and authenticity is part of an anti-foundational, anti-essentialist, theoretical worldview where validity is contested by the notion that there are many truths rather than one universal, knowable truth. (Goodley, 2017; Lincoln et al., 2011). Importantly, however, just because validity can be contested, it does not mean that the process of discourse analysis can be void of accountability or rationale (Lather, 1993, 2017). A tool to keep the process of discourse analysis in check, and one that I have utilized, is the use of a decision trail or audit trail. This can be useful for the researcher to keep track of decisions made along the analysis process in efforts to show accountability and rationale for the interpretations and theoretical understandings of the discourses under examination (Cheek, 2004). Rationale must be defensible to scrutiny and explicit reporting is needed when making decisions in the analysis process (Cheek, 2004). Further, I also used member checking after data collection and analysis. Once preliminary findings were determined, participants were invited to voluntarily attend a group discussion on the findings to offer feedback on what the findings reflected and if these findings were satisfactory to the participants. The three women who were part of the focus 59 group - Gabbi, We, and Wilma - were able to attend that meeting. They confirmed the overall findings, but it should be noted that no feedback from Arianna or Gail was given at this time. I also, with consent, member checked with each woman when needed and when possible for further clarity and assistance in keeping their voices/perspectives centered in this research. My relationship with the women was great and they were all very open and willing to answer any questions. The focus group findings from Chapter Four (Part One) were sent to Gabbi, We, and Wilma for review. Also, as stated, each woman was sent her own piece of the findings presented in Chapter Four (Part Two) to ensure their perspectives were reflected to their satisfaction. All of the women reviewed their findings and all of them agreed with what was being presented. A couple examples of the women’s responses to their stories follows. Wilma told me that she felt like she had been heard and that my presentation of her thoughts and feelings reflected her exactly. Arianna said the section about her story was spot on, and she shared it with her husband. They both expressed enjoyment from reading it. It was wonderful to hear such enthusiasm from all of the women, and it speaks to the accurate representation of them in this research. The inter-subjective agreement and shared conversation/construction between researcher and participant is important (Lincoln et al., 2011). Aside from member checking, I also had my supervisor engage in peer consultation with me. This is another method to track accountability. It is the position of qualitative researchers that what counts as evidence and what is acceptable as reasoned argument needs to be reframed (Lather, 1993, 2017; Polkinghorne, 2007). An expanded idea of validity is needed so that knowledge claims about the understandings of human experiences can be included in social science (Lather, 1993, 2017; Polkinghorne, 2007). I would like to talk about trustworthiness as it relates to my choice of Narrative method and discourse analysis from a social constructionist position using poststructural thought. A 60 poststructural move is to foreground the complexity and messiness in interrogating social interaction; its purpose is to disrupt the idea of "truth" rather than attempt to neatly tie it up in one package (Lather, 1993). It is about the search for instabilities (Lather, 1993). The complexity and fluidity of meaning-making from a social constructionist perspective and a poststructural interrogation of language is in direct contradiction to a hard-and-fast claim to truth. Traditional regimes of truth in social sciences have aimed to govern, whereas post-modern thought aims to theorize through the disruption of ideological research traditions (Lather, 1993). As Lather (1993) states, the aim is to root oneself "between the no longer and the not yet" (p. 683). This resonates with me. Further, narrative researchers undertake their inquiries to have something to say to their readers about the human condition (Polkinghorne, 2007). The knowledge claims they produce are meant to be taken seriously by their readers (Polkinghorne, 2007). This requires that they provide sufficient justification to their readers for the claims they make. Readers should be able to follow the presented evidence and argument enough to make their own judgment as to the trustworthiness of the claim (Polkinghorne, 2007). Narrative researchers do not ask readers to grant validity to their claims, rather, readers are asked to make judgments on whether or not the evidence and argument convinces them of the plausibility, credibleness, or trustworthiness of the claims (Polkinghorne, 2007). Storied texts serve as evidence for personal meaning, not for the factual occurrence of the events reported in the stories (Polkinghorne, 2007). We need to ask ourselves, are we capturing our participant's meaning-making; do our methods give voice to disabled women's experiences and perspectives (Goodley, 2017). Polkinghorne (2007) states, and I agree, that the storied descriptions people give about the meaning they attribute to life events is the best evidence available to researchers about the realm of people’s experience. 61 3.2.7 Ethical Considerations There are two levels to address when speaking ethically with respect to this research. First, all participants were fully informed of the research aims and they signed a consent form (see Appendix B) that outlined the parameters of their commitment. This form stated that all participants were free to withdraw from the research at any point if they chose to. Further, participants were given the opportunity to choose pseudonyms to protect their identity within the data. No identifying information appears in this thesis, nor will it in any presented or published material. I also provided all participants with the contact information to various local support services, which can provide counselling services to participants if they felt like they required it, or may at some point in the future. Details surrounding one's sexual life can be triggering in certain contexts, and while it was not my aim to specifically uncover, for example, experiences of sexual assault or intimate partner violence, I could not have been sure what participants might have chosen to share in an interview. These counselling services and supports were, in part, an insurance that the mental health of participants was being considered and safe-guarded. Next, I would like to speak on an axiological (nature of ethics) level by positioning myself within axiology as it relates to this research. This research is intended to be emancipatory and transformative. The axiology of social constructionist thought is emancipatory and transformative (Lincoln et al., 2011). An emancipatory paradigm consists of research that is partnered; research that seeks to expose and change disabling structures to extend the control disabled people have over their lives (Mertens et al., 2011). It focuses on strengths rather than deficits and it examines the contexts and relations of power that oppress rights, inclusion, and citizenship (Mertens et al., 2011). This is aligned with my research. A transformative commitment to research is where I align myself, and this stems from emancipatory commitments 62 (Mertens et al., 2011). Transformative research aims toward social justice through solidarity among marginalized groups and also aims toward challenging and changing biased social ordering that takes place through unbalanced power relations (Mertens et al., 2011). The main goals are to challenge the oppressive status quo by focusing on wider social contexts and constructs (Mertens et al., 2011). The axiology of transformative research commitments are rooted in human rights and social justice perspectives (Mertens et al., 2011). Feminist critical disability studies is commensurate with transformative approaches to research, and transformative commitments are also in line with the re-imagining disability and sexuality theme that is threaded throughout this research. A qualitative element is key in emancipatory and transformative research (Mertens et al., 2011). Further, perspectives from disability communities are central and need to be gathered on a substantial level (Mertens et al., 2011). Disabled participants act as guides and mentors - researchers learn with and from them in a partnership (Mertens et al., 2011). As mentioned, a small advisory board of disabled women was arranged to help guide my research approach. I wanted as much input and direction as possible from disabled women in terms of the best approach to the focus group as well as the construction of the narrative guide for the individual interviews. I believe that this approach aligns with my axiological positioning in working with disabled women. Identifying as non-disabled at this point in my life, I think it is important to have as much guidance as possible in conducting work with disabled women. It is important to me for that guidance to come from the perspectives and insights of disabled women. Disabled women's opinions on how research should take place in this particular context is invaluable for me in partnering with them. This advisory board was also a factor in strengthening the trustworthiness of this research, as it involved outside input on and validation of the methods. 63 Moreover, to touch again briefly on my non-disabled identification, I believe as Linton (1998b) does, that non-disabled people have a "responsibility to consciously and deliberately engage with [disability] issues" (p. 537). Further, as mentioned in Chapter One, it is integral to recognize and interrogate one's own identity and subject positions with respect to one's research (Linton, 1998b). This links to the concept of self-reflexivity, which I also engaged in continuously throughout the process of this research as a contingently non-disabled woman. Critical self-reflection and self-interrogation is necessary in research rooted in discovery and interpretation (Lincoln et al., 2011; Linton, 1998b). 64 Chapter Four (Part One): Findings This chapter is divided into two sections. Part One includes a general outline of the three main discourses that presented in both the focus group as well as the women's interviews. A brief description of how an intersectional lens came to light as integral to the findings is also discussed. Following this, I present the findings from the focus group. The presentation of the focus group findings are kept separate from the individual narrative findings as they are two different types of data: the dynamics of each type of data collection are distinct. 4.1 The Discourses - Ableism, Sexism, and Resistance The most prevalent discourses at work across the women's narratives were ableism, sexism, and resistance. Ableism has been described at length in Chapter Two and can be understood as the social beliefs, language, and practices that result in the discrimination and denial of rights of people with bodies that function in ways outside of a dominant, socially accepted ideas of "normal" (Campbell, 2008; Garland-Thomson, 2005a; Goodley, 2017; Linton, 1998a). It limits the ways society sees disability and, therefore, how society understands what it means to be disabled. Sexism was mentioned in Chapter Two as well, in terms of its intersection with ableism in the sexual lives of disabled women, which I will discuss. Sexism refers to the widespread social and institutional discrimination and oppression of people based on sex and gender; most often sexism is perpetrated against women and does a disservice to them in terms of denying their rights, exploiting their bodies, and placing biased, unbalanced expectations on them (hooks, 1984). Like ableism, and specifically in terms of sexuality, sexism often plays out with respect to the body and the dominant ideals placed on women's bodies that attempt to dictate and police their expression through patriarchal power that privileges men (hooks, 1984). 65 Resistance discourses surfaced across the women’s narratives. There is little literature that highlights resistance in the context of disability and sexuality, most likely because little literature centers the voices of disabled women with respect to their sexual subjectivity. In this research, I came to understand resistance as discourses rooted in strength, commitment, pride, reclamation, voice, confidence, empowerment, liberation, and solidarity. During a follow-up with the women, they confirmed with me that resistance discourses represented their reality: it was not something imbued with biased misrepresentations or appropriations of their experiences. They spoke about how resistance allows space for everyone, in all of their complexity. All three discourses functioned in different ways, with unique social scripts; that said, these discourses worked in compounding and/or contradictory ways to shape meaning on many levels, including a subjective sense of self. These discourses were productive, active, and clearly present across the data, which is not surprising given the ubiquity of dominant discourses in wider society. The women agreed that discourses are widespread and that discourses work within and through multiple avenues of social interaction. Gabbi specifically stated in the focus group that, "…it comes from all places", when discussing how social influences shape personal interactions with sexual partners. Given the prevalence of ableism in the literature (see Chapter Two), the prominence of discourses of ableism in the data was not surprising and neither were the sexism discourses. Feminist disability scholars (e.g., Garland-Thomson, 1997; Linton, 1998a; Wendell, 2001) have theorized the links between ableism and sexism, and the interworking relationship of both was clear in the women's narratives. What was unexpected (although hoped for) was the explicit, unequivocal work of discourses of resistance across the women's stories. 66 4.2 Intersectional Significance Qualitative research requires decisions to be made for data analysis (Richards & Morse, 2013). My decision to focus on three main discourses was intentional because ableism, sexism, and resistance were the most prevalent and the most relevant to my research question regarding disabled women's sexual subjectivity. Nevertheless, several other discourses such as racism, ageism, heterosexism, and classism also shaped the women's sexual subjectivities. It is important to recognize the complex role that multiple interlocking discourses have in the production and reproduction of social and individual understandings (Cheek, 2000; Gergen, 2015). Gabbi noted this in the focus group and the other participants agreed when she said, "It's really hard to also pull apart the disability piece from all of the other aspects of sexuality too." As the women's quotes will demonstrate, complex subject positions are not informed by one discourse alone. For example, racialized factors and racist discourses are tied up in sexism and ableism for some women, whereas poverty may be a significant contributor to another woman's experience, informing how she comes to understand and make meaning of her experiences. There are differing contexts for all of the women and differing subject positions over time. Even though some subject positions might be characterized similarly, or categorized in my findings under one discourse section over another, there are a multitude of influences and experiences shaping them. For instance, while all the women positioned themselves as devalued (discussed below), it does not mean they felt devalued in the same way, nor for the same reasons. Subject positions, in part, may be due to the same discourse or influence, but the subject position itself cannot be boiled down to the result of only one discourse, interaction, or experience. In the focus group, Wilma talked about the term sexuality, "Everybody is gonna have experiences in the past, and teachings, and it all comes down to each person thinking of it 67 differently." Gabbi followed this idea up by referencing her family unit interactions when it came to the topic of sex, linking language and sexuality to the context of family and socialization. She said, "What if my family hadn't joked about it so much or talked about it so much or referenced it so much, how would I be different?” Both statements point to how intersectionality plays out in the women’s lives and how diverse experiences can affect meaning-making. This is the complicated piece to this work, but also the interesting piece; the beautiful complexity of an intersectional life cannot be overlooked. The women's experiences were not homogeneous. Their experiences are intersectional and individual, the result of multiple interlocking, productive discourses and interactions. These women come from a variety of racial, socio-economic, and socio-cultural backgrounds. Therefore, I take complexity seriously in my analysis. While I represent the women in similar ways, I acknowledge that their subject positions are multi-faceted. Further, while I present the work of the discourses separately, they do not stand siloed in their influence. Gabbi stated at one point in the focus group that, "Nobody considers the context of my life." I wanted to make sure that I did consider the context for all of the women involved. The subsequent sections describe these contexts as they relate to the research question, beginning with the focus group. 4.3 The Focus Group Gabbi, We, and Wilma participated in the focus group. It took place at the Independent Living office in a private workshop space. We started with the question, What does sexuality mean to you?, and the women took it from there. I would like to acknowledge that Gabbi, We, and Wilma may have been influenced by their focus group experience when it came time for their individual narrative interviews, whereas Arianna and Gail did not have this same experience. 68 In the focus group, we explored what the term sexuality meant to each woman. In a general sense, the women separated the terms sex and sexuality. They saw sex to be the physical act of intercourse and sexuality to be something more in-depth. To them, sexuality has an emotional component and yet is also multi-faceted. Each woman also shared personal conceptualizations of sexuality as well. For instance, Gabbi shared, “[sexuality] feels like a really positive but confusing, exhausting part to me…something I put off to the side…" She likened it to a suitcase that she keeps in the corner and noted that she doesn’t always get to open it and play with what's inside but that hopefully it's always there when she needs it. She also commented on the complexity of sexuality stating, "[it’s] confidence, self-esteem, trauma - all that kinda stuff." Wilma linked sexuality to behaviour, pondering: …am I sexual in the sense that - do I come off as a promiscuous person, or was I before, or am I now, or do I do behaviours that are sexual in nature?...I don't really. So it's like, am I really a sexual person? She sees her sexuality as a performance. We viewed sexuality as a part of the person internally, in a holistic sense. She stated, "[sexuality is] all of me, not just parts of me…to me, sexuality is in your head. It doesn’t have to be in your body." The conversation took off from this starting point. Ableism, sexism, and resistance surfaced as the conversation unfolded, shaping the particular ways the women spoke about their experiences as well as how they positioned themselves while narrating those experiences. In the following sections, I demonstrate how these discourses were at work and produced particular subject positions. 69 4.3.1 Ableism - Focus Group Ableism discourses surfaced in three main ways in the focus group discussions. First, the three women spoke in ways whereby they positioned themselves as devalued, othered, and oppressed. Gabbi stated, "I know what it's like when my disability is seen as a hindrance and totally not valued and totally not accommodated and totally looked on as negative." The other women agreed with her. They also spoke about feeling as though they were at fault or flawed in some way, which is an understanding of the body promoted by an ableist script. Gabbi also said, "[Sometimes I am] feeling like my body is betraying me…and I can't pleasure that other person…" At a later point, she added, "There's the struggle as it is if you didn’t have a disability…then having to add that extra layer of how is my body gonna be in this? How is my mind gonna be in this? What's it gonna be like for me afterward?" With these words and questions, Gabbi conveyed the struggle she had with sex when chronic pain is present and she pointed to ableism and its intersection with sexism. Gabbi expressed an internalization of worry about how others may react to her body. This internalization can lead to self-doubt and questioning oneself in terms of the societal ideals of normalcy that exclude disabled bodies, which We articulated very clearly when she said, "[There are] all these preconceived ideas in your head [like], 'Is this normal?' " A second way that ableism was productive in the discussion was in the idea of loss, an ableist trope that influences personal understandings of disability (Garland-Thomson, 2005a; Goodley, 2017; Linton, 1998a; Mingus, 2011). Gabbi spoke about the concept of loss. In relation to sex, Gabbi shared, …you feel like there's so much grief and loss with different things that you lose when, you know, just the way disability is, right, for some disabilities, you feel like you lose 70 a lot. So, how do you not lose sex? Or quality of sex and sexuality, right, how do ya maintain that? In fact, loss in terms of sex was a concern for the women. They agreed with Gabbi when she further talked about feeling like sex was sometimes a sacrifice, linking back to the participants’ discussion of emotional labour. Gabbi explained, "It's always this give-and-take. It is always this negotiation piece that you are constantly struggling with…what do I have to give up in order to be able to have sex? 'Cause it does not come for free." Relatedly, a third way that ableism was evident in the focus group was in the discussion about emotional labour, which also intersects significantly with sexism. The women described having to navigate sexual relationships in terms of expectations driven by misunderstandings of disability. They attributed these misunderstandings to skewed/biased sexual health education that excluded disability and discriminatory media representations of disability. We often felt the need to avoid sex because of the possible repercussions from a partner that might not understand her disability. She said, "You can only play virgin for so long with a guy". Gabbi spoke about feeling the need to consider a partner's needs and feelings before her own and feeling that her body may be seen as responsible for a sexual partner's lack of pleasure. When recalling a sexual interaction in her life, Gabbi described thinking, "I don't want him to think that he's not doing a good enough job." Gabbi made another, very poignant point when she spoke of the exhaustion from the emotional labour she has experienced: …that's why it's so exhausting too is 'cause you do always feel like ya have to fight. That you have to fight that it's not about him, that it is about you. Sometimes it’s just tiring to have to continue to fight just so you can get laid or you can have some 71 pleasure…it just sucks when you're always having to fight against all these messages that you get. 4.3.2 Sexism - Focus Group Sexism was prominent throughout the discussion. The women mentioned feeling sexual objectification and sexist pressures/expectations; sexism discourses thus interlocked with the pressures of ableism, which often denies sexuality and sexual rights to disabled women (Linton, 1998a , 2005; Parsons et al., 2016; Shildrick, 2009). We signified these compounded pressures in relation to a denial of pleasure when she stated, "Woman aren't supposed to enjoy sex, that's what I had one guy tell me one time." In place of pleasure, as Gabbi described, women are expected to act in particular ways, especially in pleasuring men at the expense of their own pleasure. She stated, "Why do we have to do it all? That part really ticks me off...you feel like you're, you know, you have to be all this to everybody and blah, blah, blah." Gabbi explained that these pressures impacted her feelings with respect to self-pleasure. Although the women spoke about engaging in self-pleasure, masturbation was talked about as a struggle at times. In the face of sexist and ableist discourses that promote a denial of pleasure, the women felt that self-pleasure is important but sometimes exhausting when coupled with the internalized notion that they are unworthy when it comes to pleasure. Gabbi said simply, but pointedly, "Are you worth it?" when referring to her self-talk when it comes to putting time aside for self-pleasure. Linked to this denial of pleasure, sexism created a pressure to be sexual in the service of male partners and with little to no consideration for women's needs, desires, or pleasure. The women spoke about how this related to their bodies and appearances. The women described feeling a sense of sexual objectification from the societal-wide enforcement of an ideal body 72 image as well as the production of sexist roles and expectations of women when it comes to sex. Gabbi stated, "[I] felt pressured to just be okay with sex, even before I was ready…there was always this underlying current that you gotta do what you can to be able to keep your partner happy and that's having sex." Further, Wilma described how the pressure from media to have to look a certain way affects women and their sense of sexuality. She stated, "You have to buy all that just to be a sexual object or sexual human being…" Sexist media was also mentioned by We: "The whole concept of pornography…and we're supposed to wear stilettos. We're supposed to buy these thong thingies… it’s the perception - what we see in magazines, what women are supposed to look [like]." Similarly, Gabbi spoke to media produced, sexist pressures stating, "The pressure that that puts you under, like, oh my God, I have to spend all of this money just to try and be sexual and then have sex." She added, "[I] always felt pressured to look good, wear make-up, all that kinda stuff, so you can snag a good guy and that sorta stuff… this perception that I was there to serve him.” This sexual objectification and the hyper-sexualization of women are entangled in sexist discourses, and yet do not affect all women the same way. Racism intersects with sexism (and ableism) to reproduce a colonizing narrative about Indigenous women’s sexuality. When discussing these pressures, Gabbi took an intersectionality perspective by adding a racialized point of view. Gabbi, a First Nations woman, stated, Indian women have always been very sexualized. That was hard. That's a hard piece. I think a lot of the time I really tried to ignore it…I don’t wanna go there 'cause it seems like a really big bucket to open up of just always being seen as a sexual object for white men's pleasure. 73 4.3.3 Resistance - Focus Group The women claimed their right to fight and resist against the oppressive social scripts that attempt to dictate their sexuality. Referencing her fight for rights to sexual expression and pleasure, Gabbi stated, "Even though sometimes it's like tiring and it's like, ugghhh, it's still definitely worth fighting for - definitely worth fighting for, for sure." Feeling empowered and autonomous in their sexual lives was clear among all of the women; the women claimed their right to voice. We displayed this empowerment and autonomy in terms of claiming her right to have her needs and pleasure considered in sexual encounters: "As women now, we can own and know what we want in the bedroom…it's not just about him getting his needs met. It's about us getting our needs met." Wilma also expressed feelings of empowerment in her sexual life and how these feelings led to personal sexual exploration: "Now that I'm older, I feel like I can explore my personal sexuality more because I know what really helps me, makes me excited, and so I can explore that." This empowerment and autonomy led to the women feeling comfortable and confident in their sexual lives as they grew older. Wilma expressed her confidence this way, "I feel more comfortable exploring my sexuality… I feel more comfortable with my abilities to do certain things… we can explore more what can be done. So, I think that helps raise your confidence and your ability to be sexual." We pointed to the confidence and comfort in this shifting framework of resistance discourses, highlighting our group discussion: "…just to be able to embrace this today. To sit around having this conversation and not to be frowned upon." The women linked this confidence and comfort, in part, not only to their own life course and maturity but also to media in recent years becoming increasingly inclusive. While the women spoke to the limits they experienced as a result of oppressive discourses, they did 74 recognize more recent promising social shifts. Gabbi explained the promise she felt because of changing media representations: "It's kind of helped because society is saying that there are more options…So, at least I don’t feel like I'm totally singled out now if I can't do something." Wilma supported this point stating, "I feel that before media kind of said people with disabilities can't be sexual. But, now I think media is broadening the scope of who is sexual and that helps." These media influences were linked to wider social movements such as the women’s movement in Canada. We mentioned the influence of feminism, "I think a lot of things have changed for the good and especially with women's lib and how we can fight for what our own rights are and stuff like that." These social shifts relate to subjective understandings on an individual level. If disabled women are interacting in a disability/sexually inclusive social environment, their subjective understanding of themselves as sexual will be positively affected. Gabbi raised the point about past barriers being dissolved, "Yeah, you don’t feel like there's any limits in some ways." We followed this up, referring to disabled women’s sexual empowerment and resistance, using the words, "We can fly!" Overall, the women spoke about finding their voices in a shifting social world whereby they felt the space to claim their rights and explore their sexuality in an increasingly comfortable and confident way. They spoke about the importance of this social shift to their individual interactions. For example, all of the women underscored the importance of honest, open communication with supportive sexual partners. For this to happen, there must also be a supportive social influence around disability and sexuality so that people are open to and understanding of multiple conceptualizations of what it means to be sexual, what sex can look like, and who has rights to pleasure and sexual citizenship. 75 I was surprised by a point the women made about discourses of resistance. They were, in part, overwhelmed by discourses of resistance because of how an inclusive script can sometimes lead to confusion of expectations, similar to the ways that a lack of sexual information might. They felt that an outcome of this inclusion was a new pressure to be more sexual, or sexual in a different way, due to less restrictions being placed on them. The women noted that more progressive discourses are best, but that they may also hold ideals with their own set of expectations to meet. Figuring out where one fits within that progressive movement can be a challenge. Trying to make sense of a host of new information in terms of likes, dislikes, wants, and needs was sometimes overwhelming for the women. Gabbi stated, "I feel like now I'm having to kind of catch up…what do I have to do with my sexuality now? Do I have to add something to it, do I have to change something?" She spoke of discourses in general, even more inclusive ones as, "that outside pressure." We agreed, "You feel like you have to kick it up a notch! What are we gonna do now? We gotta up it." That said, the beneficial aspects of resistance discourses were much more the focus of the women's statements. 76 Chapter Four (Part Two): Findings Part Two of Chapter Four presents the findings from the individual narratives. A chronological portrait of each woman is presented to offer greater context into their lives as shared in the interviews. Following each woman's portrait is a presentation of the findings specific to each of them that details the influence of ableism, sexism, and resistance on their lives. The findings for each woman are presented separately, and while the findings overlap at times, this choice of representation is intentional in order to provide each woman their own space. I discuss how the women were positioned by these discourses based on the narratives each woman shared with me. This chapter concludes with a discussion of themes that cut across the findings - including both the focus group and individual narrative data. Of note, and linking back to the section on intersectional significance, I experienced a challenge in teasing apart the effects of the discourses on the women's subject positions as the discourses interlock in complex, multifaceted ways. As such, I present statements made by the women in terms of the most evident discourses that underpinned and constructed how the women framed their experiences and how these discourses produced particular subject positions. For example, some statements related more to ableism and some related more to sexism, each pointing to the productive work of the discourses with respect to the participants’ subject positions. Furthermore, I emphasize that it is impossible to say that any subject position stands alone, affected by only one discourse. Rather, in the grand scheme of someone's life experiences, subject positions intersect with and are shaped by many discourses across time. For the purposes of this research, I discuss subject positions in terms of the most relevant discourses based on the research question. 77 The following portraits reflect each woman's personal story based on their individual interview. Member checking was conducted with each woman and the women were given the opportunity to review the portions of the findings that apply to them. All of these women are wonderfully courageous and giving for sharing such intimate stories with me. I give thanks for their candor and I celebrate their spirited hearts and personalities. 4.4 Gabbi Gabbi was 43 at the time of her interview. She identifies as a First Nations woman and grew up in a First Nations community. She spoke about the effects this cultural influence had on her as a young girl and as a woman. Her family was supportive and protective. She came from a strong, matriarchal community and noted the influence of this as positive. She also noted her family's sense of humour and specifically spoke about jokes around sex and sexuality being common and that took the taboo around the subject away. Gabbi also spoke about being a survivor of sexual abuse in childhood and how that affected her: "…growing up after being sexually abused and definitely not wanting to be put in that position of being that vulnerable again and being victimized again by any stretch of the imagination - that definitely impacted how I learned about sexuality." She also noted being very developed at a very young age, the unwanted male attention she experienced, and how this affected her sense of herself as sexual and her feelings of having "to be really careful how [she] behave[d]." Gabbi moved to a small town in her early teens and noted that her family and friends were the largest influence on her at that time. She was always very aware of her status as a First Nations woman; she spoke about feeling a heightened sense of caution and fear around the possibility of being victimized because of it. She was very aware of the high numbers of missing and murdered Aboriginal women at this time in her life and described how this affected her in all 78 sorts of ways, including sexually. It shaped how she conducted herself in social settings and sexual interactions as she entered her mid-late teens. As a young woman, Gabbi remembers carrying the impacts of her early years with her and she felt reserved around sex and sexuality. She felt like she had to suppress her sexuality for fears of being perceived as promiscuous. She attended college at this time in her life and also met a man that would become her first husband and then her ex-husband years later. This relationship was toxic and she felt that she lost a sense of who she was because of it. She felt controlled and devalued: "[My job was] to bring [him] pleasure." She further described having to "power through" a lot of that relationship. Upon reflection, she spoke about it as follows: "Everything that I gave that I didn’t even realize I was giving to someone that didn’t appreciate it at all. Just terrible, just absolutely terrible." Gabbi's disability came into her life at around age 33. It is a chronic illness and she spoke about the time she was diagnosed as being full of fear and grief. Gabbi sometimes uses humour to process life experiences, and she noted that humour helped at this time in her life, along with support from family, friends, and co-workers. She described how "everything new was happening in my life at once" during this time of her life. She was struggling with anxiety and depression. Moreover, she had left the toxic relationship she had been in for over 13 years, and she had gone back to school to pursue further education. Now living with her disability, Gabbi spoke about the fear of dating after so many years with the same man, and she described a fear and concern about what others might think of her. She spoke of the lack of medical support and education around the topic of disability and sexuality, and also highlighted things like the side-effects of medications, how that affected her sexuality, and how it had to be addressed and worked around. In contrast to these feelings of 79 concern, she described feeling a real sense of herself again now that she wasn't in that toxic relationship anymore. The changes in Gabbi's life at this time, although challenging and uncertain, opened up a lot of opportunity for her self-awareness and self-confidence to grow and she spoke about the freedom of learning to masturbate and explore herself and her needs comfortably during this time. Confidence grew in me that I had the control over these things…even though everything was super uncertain, at least I had that 6 or 7 months that provided some completely new knowledge about who I was…for the first time in my life, when [I'm] 33 years old and [I'm] finally feeling like, wow, I can be who I want to be and this is okay. After having time to explore and discover herself more fully during this time in her life, she went on to meet the man that is her current husband. She spoke about this relationship as wonderfully loving, supportive, understanding, and communicative. She spoke about her sexuality in positive ways with respect to her relationship with him and noted the influences of such a strong relationship overall. While she is happy at this point and in a good place personally, Gabbi also noted that throughout her life there were definitely issues with the pressures of society: "[I’ve had to] try and wade through all of that shit and that society stuff and all of those messages that you get, that fear that you get; yeah, just terrible." The following sections present Gabbi's words as they relate to the productive power of the prevalent discourses throughout her life that positioned her in specific ways. 80 4.4.1 The Work of Ableism Gabbi initially spoke about her experiences after her onset of chronic illness. She spoke about being depressed at the time due to the diagnosis and the ableist scripts that often surround disability in a medical sense: "I was super devastated…because I knew it wasn't gonna get better. It was only gonna get worse. So, I was just terrified." She went on to state that she was "feeling like absolute crap about my future." These statements relate to the loss, fear, and tragedy perspectives often touted by ableism (Garland-Thomson, 2005a; Goodley, 2017; Linton 1998a; Mingus, 2011). Gabbi experienced these feelings at a time of uncertainty in her life. She expressed her concerns about her body and how her body might be perceived by potential sexual partners going forward in her life, "Is really anybody gonna want me ever again with this goin' on in my life?" The feeling of being at fault or flawed due to disability is another ableist trope (Garland-Thomson, 2005a; Linton 1998a). Gabbi also spoke about the emotional labour that is present in sexual interactions. She found it difficult to navigate relationships with a disability and felt pressure to explain her disability and manage others' emotions around disability. She described how she sometimes found herself "trying to explain that to another person but also trying to minimize the impact of it because you don't wanna feel like you're gonna scare them away." This sometimes led to what Gabbi expressed as powering through sexual encounters, which she said made her feel powerless and devalued, like her own needs were not important: I know a few times I did just power through it, so to speak, because I didn’t feel like I wanted to express my true needs in the beginning. So, that was really frustrating when you're feeling like you have to put your real needs aside in order to be able to factor in that pleasure of that other person. It took so long for me to actually feel 81 comfortable to say, “No, this is not working for me, we have to do it this way.” Just knowing that I've always been that strong, independent woman but still, at some times, you're not. You know, all the messages in your head of being powerless do flood in - in that moment of intimacy. The emotional costs of having to power through are numerous, and often times led to self-deprecating thoughts and feelings for Gabbi: "I know in those moments where I would just kinda power through, so to speak, you just feel guilty, you feel stupid, you feel like you're giving up all of your power for this." As a result of the ableist discourses around disability, Gabbi did not initially feel that there was much space within disability for sexuality: "It felt like they had to be separate, my sex and my sexuality was separate from who I was." She added that this caused her to feel that sex and sexuality were not something she was entitled to as a disabled woman; she felt that her needs were not part of the equation and, therefore, sex and sexuality were not concepts meant for her. She shared, "It could never be part of my life 'cause it was something that had to be hidden away or it was something that wasn't really about [me], it always had to be about the other person." She also mentioned that there was no space made for sexuality in her interactions with medical professionals about disability: "Certainly at the time there's no way I could have went and talked to a doctor about how [I could] get any help with [that]." She went on to elaborate, I didn’t think that they would think that it was important enough. I didn’t think that if I went in to talk to a doctor about a real impact of [my disability] on my sex life - I [don't] know if they would have valued that. That's really sad when you think about that, and I think that says a lot about the medical profession. 82 She also stated the total lack of education or support around disability and sexuality declaring that she "had to figure it out for myself. Totally had to figure it out for myself." This amounts to blatant disregard for the sexual rights of disabled women, which is evidence of ableist discourses surrounding disability and sexuality. 4.4.2 The Work of Sexism Gabbi's personal accounts relating to sexist discourses were tied up in her identification as a First Nations woman, thereby revealing how sexism, ableism, and racism are interlocking systems of oppression. She had felt hyper-sexualized by men at a very young age: "I was very developed at a very young age. So, that caused a lot of issues for me and a lot of un-wanted male attention from a lot of older men." She had grown wary of this unwanted attention, "That reinforced a lot of those messages of [having] to be really careful how I behave because there is just so much unfortunate opportunity to be vulnerable." Gabbi connected this feeling of being hyper-sexualized to her identity as a First Nations woman and the uneasy vigilance that she carried with her throughout her time as a young woman. Social narratives around gender and race influenced how she conducted herself sexually. She stated, "I know also, being First Nations, there's also that piece that informs that. All your life of having this fear of being abused or being raped… because of the colour of your skin and where you come from…" She went on to state, "It really impacted that sexual part of me because…I [didn't] wanna be seen as promiscuous, I [didn't] wanna be seen as a whore or slut." Sex and sexuality was all-at-once pressured and shamed in Gabbi's experiences. She felt the pressure to be sexual, but also felt the judgement of being promiscuous if she were to be sexual. She noted the pressures of sexual expectations and described how these led to feeling the 83 need to protect herself. The fear and onus for her own safety that she carried with her was a significant piece for her during these early years; so much so that she made a note of it later: I just always had to feel like I really had to keep myself in check. Even when [I'd] go out partying with friends, I never felt like I could really get stupid drunk because I didn’t want somebody to take advantage of that. [I was] just always on guard. Gabbi also spoke about the influence of unsupportive sexual partners. She spoke about having partners where subservience was expected and where her own pleasure was disregarded, and she also spoke of partners that were not sensitive to the fact that she was disabled once that was a part of her life. These types of experiences and relationships link to the emotional labour disabled women often face in navigating both ableist and sexist interactions. She mentioned one partner in particular, whereby she was under constant control but did not even realize it herself until much later. She stated, "Even coming out of that relationship, I never realized how much control was being exerted on me." She noted the impact of this relationship on her sense of herself as a woman: "I felt like I was fairly independent and knew myself and knew where I wanted to go when I met him, but I feel like I really lost all of that when I was with him." Gabbi felt like that partner never took her needs into consideration and that he never would have been supportive of her disability either. "[I] considered myself a strong, independent woman, [but] realizing I hadn't been because the control had been so subtle, and that if I had have stayed with him, I just would have been a wreck." Gabbi also shared past experiences with sexual abuse and how that affected her sexually. Sexual abuse springs from sexist discourses because sexism disparagingly frames the treatment of women and girls. These experiences, in part, shape survivors' lives going forward. Her thoughts on its impact were as follows: "…definitely not wanting to be put in that position of 84 being that vulnerable again and being victimized again by any stretch of the imagination. That definitely impacted how I learned about sexuality." She also mentioned the influence of her culture at the time she was learning about sex and sexuality: "As First Nations culture goes, it's really not a taboo subject. To reference it or to joke about it or anything like that is not taboo so [I] definitely learned that piece." She further noted that she learned about sex and sexuality mostly through experiences, both good and bad, and also through peers at the time as well. 4.4.3 The Work of Resistance Gabbi was very vocal about the influence of resistance discourses on disability and sexuality. She spoke about a shift toward confidence and comfort in herself as a disabled, sexual woman, but noted that this did not come easy: "Definitely now I do see myself as a sexual person. I enjoy sex, all that sorta stuff, but it took a long road to get here." She spoke about the empowerment and autonomy she felt more recently in her life. She shared, "[I learned to] understand and see my responsibility for my own sexual pleasure and to really take ownership of that and power of that." She no longer felt as if her needs were irrelevant. She embraced her right to pleasure and took that opportunity to begin rediscovering her sexual self and exploring her sexuality. She felt liberated in "being able to learn about toys and masturbating and my own pleasure and just kinda learning about that part of it that I'd never had." She went on to state how this experience made her feel by saying, "I had never felt so comfortable." Gabbi felt her self-confidence rising in being able to speak her mind and express her sexual needs. She stated, "I felt like I could be the same person in my private sexual life as I am in my public life." This is an important piece for her personal identity as a disabled woman: 85 I don't have to keep it hidden away or anything like that…it just feels so good to have sex and sexuality be part of [my] life and not separate from [my] life, which is what I always felt like it had to be before. Resistance discourses also affect how others view disabled women with respect to sexuality, and this influences the interactions disabled women have with sexual partners. Gabbi noted the importance and the necessity of a supportive partner, which she found in her now husband. She stated, "As I found somebody that was supportive, that I felt like I could be my whole person [with], [I] could just be who I was…sex didn’t have to be done in a certain way." She later stated that this supportive relationship allowed her to feel "acceptance, to be accepted that I have needs of my own and that's okay." She noted the feeling of being valued and respected when her partner is communicative and understanding. Finally, toward the end of her interview, Gabbi highlighted the importance for an intersectional perspective when it comes to disability and sexuality when she said, I think it's just the interconnectedness of it all. It really is that none of it can be separated - the disability can't be separate, your work life, your education, any of that, it can't be separate. It really is all connected with who you are within your physical body, within your spiritual…you know, everything. Resistance discourses make space for intersectional perspectives whereas oppressive discourses do not. 4.5 We I would like to make a note about the interesting pseudonym We chose. "We" was something she wanted to use because she said that this work is not just about her, but rather it is 86 about all disabled women and so she chose to represent as "We". She was 46 at the time of her interview. We was born with spina bifida and she spoke about this in relation to back and leg problems she has had her entire life. She did not grow up in British Columbia. She grew up living on a farm in the prairies; it was a small community. We shared that she had issues with her eyes as a young child, needing eye surgery at a young age. She was very honest about the fact that she was often in pain with her disability and she described feeling held back in some ways when she compared herself to her peers. She felt the weight of these comparisons on her self-esteem in childhood. And, in addition to her self-comparisons, We experienced being bullied by peers and that, too, affected her self-esteem. As We grew into her teenage and high-school years, she spoke about her experiences in learning about sex and sexuality. She could not recall the specifics around sexual education in school, but she highlighted remembering that it certainly did not encompass an emotional component, which she felt she needed. Moreover, when it came to sexual education in her family, We stated, "I had a parent that was very naïve about sex." She learned about sex mostly from the media and conversations with friends: "Movies, magazines, stuff [my] girlfriends were telling [me], stuff [my] parents were trying to tell [me]. There's just a bombardment of on-going information, some of it right and some of it wrong." She further explained, "You learn by experience." When We elaborated on this learning “by experience” she described feeling shamed for sexual encounters by boys in high-school: "Everybody thought I was easy, but I wasn’t." As a young woman, We described having issues with irregular menstruation and when combined with other aspects of her disabilities she noted that, "It was tough, but you get through 87 it." She had sexual partners that didn't seem to understand or respect her needs, but she also had some sexual interactions with supportive, understanding partners. She noted having been in unhealthy relationships and how those shaped her in multiple ways, sometimes giving her perspective into what she needed as much as what she didn’t need. Her growth in a sexual sense came mostly from personal experiences with partners as well as self-exploration. She pointed to a lack of support around any sort of opportunity to learn about sexuality specific to physical disability. With respect to sexuality in her young adulthood, We explained, "You have your good days and your bad days…when I was dressed-up and I looked good, I felt good. But, there [were] days I didn’t feel like I was sexual." During this same period, media had an influence on her sense of self and her sexuality. She described how media messages were often skewed and made her feel pressured to look and act a certain way. We's disability “[generally progressed] over the years;" she developed further issues in adulthood with chronic pain. That said, she is a proponent of acknowledging limitations when it comes to her disability and not feeling bad about that. Given this, she described feeling comfortable with her sexuality at this time in her adult life. She is honest with herself about how she can have sex and what works for her: "It comes down to limitations. I know that I'm not gonna be able to do that position because it's gonna put pressure on my back. I'm not gonna be able to do that position because it's [not] gonna be right for my legs. Like I said, I know that I'm never gonna be a contortionist." As for her current sexual relationships, We has a couple of "friends with benefits" that she is comfortable with sexually, but she is very conscious about wanting a particular type of long-88 term relationship. She knows what she wants and she is willing to wait for that. She has taken it very seriously to work on herself and mentioned struggling with depression throughout her life. She has come to a good place in her life now, and she feels that a strong, loving, understanding, supportive relationship is her goal: "You want that long-lasting relationship. Especially with having a disability, you want the right person to be with you." At the time of this interview, We reflected on her life and her sexuality saying, "I think it's like a rose. You grow and then you blossom." She also stated, "I've flourished over the last 6 years being in a healthy living [situation in a new] province. And, knowing what I'm willing to put up with and what I'm not willing to put up with." When We reflected further on her life she shared, "Being shy and naïve when I was a teenager [until] now, it's amazing. I look at the situation like everything has been a chapter in my life and I'm seeing the end results and every chapter is getting better." We has more confidence in herself and more control over sexual interactions now. This growth in confidence has given her hope in moving forward in her life along with her own progress of self-discovery. We explained that this self-assurance is fostered and strengthened by shifting public perceptions and changes in the media toward more progressive messaging and inclusive perspectives around disability and sexuality. The following sections further present how the discourses of ableism, sexism, and resistance shaped her life and her sense of herself as sexual. 4.5.1 The Work of Ableism With respect to discourses of ableism, We positioned herself in many ways when discussing her experiences of disability and sexuality. She often felt less-than, and her self-worth was affected negatively when she was growing up. She felt the pressures being compared against 89 a "norm," a "normal" non-disabled person that ableism highlights as ideal. This led her to make comparisons of herself to non-disabled people at a young age. She felt Othered and devalued: "Your self-worth goes down because you're looking at other people and they're being able to do these tasks but you're not… You feel, sometimes, very defeated." Her subsequent comment, "But, you persevere,” merits attention. According to disability scholars (e.g., Garland-Thomson, 2005a; Linton, 1998a), ableism produces narratives of overcoming, that is, the pressure to somehow overcome disability and be as similar to non-disabled people as possible. Ableism also pressures disabled women to measure up to non-disabled women, which We articulated as stigma, "There's a stigma with it…you feel like your self-worth is down the tubes because you feel like you're competing to get to the next level… it was like I was having to jump hurdles." She felt at fault or flawed and depressed due to the ableist pressures placed on her. We also spoke about the difficulty she experienced in finding understanding sexual partners but noted the necessity of that understanding: "Sex can be a beautiful thing when it's with the right partner, but it can be an awful experience when you're with the wrong partner." She said, "It comes down to having the right person…I was finding a lot of the time that was the issue." We shared that she felt pressure, "quite a bit", to put partners' needs and pleasure before her own: "Some [conversations] have been all about him, getting his needs met." She has also sacrificed her own comfort at times. We spoke about having to explain or make excuses for her disability and not always being accepted by partners. This links to the concept of emotional labour. We raised the issue of a lack of education around disability and sexuality. She felt that she was left to figure it out for herself throughout her life: "It was all stuff that I taught myself." She felt confused a lot of the time and said, "I thought I was doing it like normal people back 90 then 'cause you don't know when you're that young. I have a disability, I know my limitations…back then it was all learning." Her pleasure, and awareness of how she could be pleasured, was compromised by the lack of education she experienced, "I knew I had these parts that were designed to have pleasure [but] it was the lack of knowledge [of] what I [was] supposed to do with it. How do I point, shoot, and click the mouse?" 4.5.2 The Work of Sexism We felt pressured to be sexual at a young age and her first sexual experience was rushed. Reflecting back to this time she shared, "Sometimes I wish I wouldn’t have rushed it. I lost my virginity when I was 14. Hindsight looking back at the situation, I wouldn’t have chosen that person, but it was what it was." Along with the pressure to be sexual, she felt shamed in high school for having had sex - a sexist catch-22 that can be emotionally laborious to navigate. Sexist discourses in the form of media, in part, shaped We's sexual subjectivity. She felt pressures from sexist ideals of beauty and desirability attached to women in media, feeling undesirable due to this influence: "…stereotypes [of] what beauty is. I equated that with sexuality. [I was] thinking this is how I'm supposed to look [so] I'm not that sexy." We realized the discrepancy between media representations and actual sexual practice, noting, "It's nothing like the movies when you're having [sex]." Despite acknowledging this, We stated that media representations of sex still created a pressure to achieve the ideal. We felt the emotional labour of sexism and ableism in the pressure to put partners' needs first, with her own pleasure being disregarded. It is hard to tease sexism and ableism apart here as both position women as Other when it comes to sexual pleasure and their expected role in sex. 91 4.5.3 The Work of Resistance We spoke compellingly about the influence of resistance discourses. Most of her interview focused on resistance; she related many comments to the need to be open and accepting of the relation between disability and sexuality. She spoke about the comfort she feels in her life now to explore her sexuality and the empowerment associated with this: "It's all about experimentation - healthy experimentation." She likened her sexuality to a bike, a playful metaphor, and described how exploring her sexuality is like finding new features on that bike. She expressed the need to take her pleasure into her own hands, quite literally, and she talked about the autonomy she feels in that and the liberation in not having to rely on a partner. She stated, "It's all about knowing yourself. I know how to masturbate. If I [don't] know how to pleasure myself, how is he gonna do it?" She also noted that acknowledging her limitations is necessary: it does not have to be ableist to recognize that her body works in a certain way. She expressed that exploring her body and embracing it is not something to be ashamed of. She stated, "It's knowing [my] limitations…knowing my body. Knowing what areas of my body are healthy for me to have sex because I'm not gonna put my body in jeopardy just to have sex." Putting her own needs first was a revelation for We and it changed how she conducts herself sexually with partners. She spoke about finding her voice and her power to express herself and her needs. She shared that she no longer feels a need to have sex in service of someone else, or that she needs to compromise her feelings. She spoke about "knowing what I'm willing to put up with and what I'm not willing to put up with." And, she described confidence in her ability to express herself now and how liberating that feels. She shared, "Knowing that I can say no, where in the past, some of those times I didn’t have enough confidence to say no. … I know that [I'm] number one. [I] look after [myself] and nobody else". This is not a selfish 92 statement, but an empowering one. She acknowledged the need for supportive partners, but she also acknowledged that her pleasure and her sexuality is important and needs to be considered. We spoke about having higher self-esteem that positively impacted her sexuality: "As soon as I started doing more self-exploration with my self-esteem…then I was noticing a big difference when I was with partners because I had more confidence." She went on to state, "My confidence level is a lot better…I never thought I had the confidence in the past." She spoke about feeling valued and worthy in a sexual sense: "Yes, I have a disability [and] I'm worthy of having my needs met." In discussing this shift in herself, she described how the media’s recent shifting portrayal of disability and sexuality supports resistance discourses and that this influences her. She stated, "There's so many more people that are coming out that have [disabilities]…they have an awesome sexuality persona…it motivates me." We spoke about how this more inclusive perspective on disability and sexuality in the media has made her feel hopeful: "It makes me stronger…[it] warms my heart to realize that could be my story. And, it's giving ourselves a voice. I think that is so cool. It gives me hope." 4.6 Wilma Wilma is the youngest of the women. She was 35 at the time of her interview. She grew up an only child in what she described as a supportive family with a strong mother. Moreover, she had good friends. And, while she felt the social pressures placed on young girls during her childhood, Wilma described feeling resilient toward these pressures because of the supports in her life. When she spoke about her teenage years growing up and learning about sex, Wilma stated that she mostly learned about sex and sexuality from the media: 93 Media, mostly. Movies, TV, magazines. Then, when I got older, it was more magazines like Cosmo and reading materials like harlequins. When you're in high school, of course, all the other students have an influence on what you learn in that area. And, of course, there's the sex-ed throughout high school but I really don’t think those had a very good impact on my feelings of sex and what it should mean and who it should be [with]. I was also in a youth group at church. So, there were a few sessions we had where this would be the main topic. Again, you’ve got the more church beliefs and what it would mean between a man and a woman. But, I just thought why limit yourself to just that, why not be more open. So that - I kinda was different than what the church was trying to get across and I think that had a lot to do with what was said at school and through media. It was also during this time, when Wilma identified a shift happening in media. During high school, there was a burgeoning message about “girl power.” This influenced her, but she also pointed to the enduring fact that girls were still sexually objectified. Again, she spoke to the support of her friends: her friends were more progressive in their thinking around the roles of women in sexual relationships and this influenced Wilma. At the age of 17, Wilma was in a car accident and that was when she became disabled. "For about 4 months I was in the hospital and then for about a year after that I was doing outpatient physio…during that time I wasn’t really thinking about being sexual again." There was no significant support from her doctors or occupational therapists around sex and sexuality at this time aside from them answering a few questions she had. She noted being depressed and went through a period of grief and loss in becoming disabled. 94 About a year after her accident, Wilma began attending college. It was at this time when she felt comfortable enough to begin to explore her sexuality again. She shared, "because I was just 17 when my car accident happened, the ways I thought pleasured me in high school changed dramatically at that time, so it was like a whole new ball-game and I had to figure it all out again." She moved away from home feeling a sense of freedom from her new start. However, she felt, to an extent, that she wasn't seen as sexual because of her disability. While prior to her accident Wilma described rising progressive messaging with respect to women in the media, now that she was disabled, she saw very clearly how disregarded sexuality and disability was in media and education: sexuality associated with disability just wasn't talked about. That said, Wilma also shared that there was a progressive climate at her college that offered her a sense of empowerment. During her time in college, Wilma experimented with a sexual partner and really began to discover what worked for her and what she needed and wanted in a partner. She shared that some interactions with him were not about her needs or pleasure. However, those interactions also created an opportunity for her to explore which is something she'd never had before. That was what she took mostly from that early relationship and she described the monumental feeling of realizing that she could still be sexual as a disabled woman. Prior to this, she didn't see herself as sexual and she didn't think anyone else would either, but her confidence grew through learning about herself sexually at this point in her life. This included exploring self-pleasure. This college relationship ultimately ended due to the fact that her needs were not being met and she wanted more from an intimate relationship. As she grew older, Wilma's self-confidence steadily grew and she felt liberated in her sense of herself as sexual. She met a man that is her husband now and they have a child together. 95 Now, sex plays an important role her in her life in a healthy, understanding, supportive, and respectful relationship. She is open about the fact that sex and pleasure are important to her, and she feels comfort and control in having her needs met. In a moment of joking and laughing about feeling empowered she stated, "[I] can break out the whip if [I] want, and the chains, and the handcuffs!" She also spoke to changing media that seems to be becoming more progressive and inclusive around disability and that this empowers her as well. The following sections present the influence of the most prevalent discourses throughout Wilma's life more fully. 4.6.1 The Work of Ableism For Wilma, disability was not talked about in terms of sexuality when she was growing up and transitioning into adulthood. Sex was not seen as a priority or right for disabled people: "When you become disabled or when you're diagnosed with a disability, it's covered up. It is just so not talked about. If you have a disability, you're just not considered to be sexual." She felt de-sexualized once she became disabled at age 17. Relating this process of de-sexualization to media, she noted, I felt it wasn’t displayed, it wasn’t shown. It was covered up…Media, I felt, covered it up and did a good job of that - making girls like me feel that [they] don’t deserve to be out there and to be sexual - nobody wants that. She also spoke about how sexual education never covered disability, even during her time in university when discussions were had and information sessions were presented about sexuality. She stated, "I really don’t remember it being addressed ever…people with disabilities [were] doing it because I was, so I knew there were people with disabilities having sex, but it wasn’t really talked about." 96 Due to this lack of inclusivity within narratives of sexuality, Wilma felt undesirable in her disabled body, and sometimes felt a fault or flaw was her own. She stated that an early thought of hers after her accident was, "Would anybody like me?" She also stated, "I didn’t see myself as sexual at all…I saw in the mirror that I had the parts, but I felt nobody else would ever see me that way…I didn’t have anything to offer that was good anymore." Clearly, at that time in her life, ableism influenced her self-worth and her own ideas of what her disabled body meant in sexual terms. Wilma was depressed after the accident, feeling a sense of loss after becoming disabled. Her perception of herself as sexual changed and she felt like she had lost that piece of herself: It was depressing at times because your body is so different from what you were used to. Some of the attributes of your body that you used to show-off in order to get attention from whoever you wanted attention from, you can't do anymore, and so you have to re-think how you're gonna go about attracting what you want. So, that's sorta depressing knowing how much you've lost. At times, Wilma felt as though her body did not measure up to the ideal produced by ableism. This pressure affected her early sexual interactions: at times, her sexual experiences were not always about her, but rather, they were about the needs of her partner. This led to her feeling devalued as a sexual being. She spoke about being made to feel as though she needed to please her partners despite her disability, or make-up for being disabled by focusing more on their pleasure as opposed to her own. How her partners treated her as a disabled woman, which were behaviours also driven by social scripts, added to how she felt about herself. She noted feeling Othered in a general sense, not just with sexual partners, due to the effects of ableism: 97 You feel that you don’t fit in, and coming to the realization that it's okay to be different is such a hard road to go down. Once you get there, it's like a rainbow at the end, but before, it's pretty hard, pretty dark and cloudy. 4.6.2 The Work of Sexism Some of the effects of ableism mentioned above are also compounded by the effects of sexism. The feelings of not measuring up to ideal body image and the emotional labour that comes with the pressures to put partners' needs first are among these examples. There is a productive power within discourses of sexism in terms of the roles and expectations of women in sexual relationships. Sexism affects how women come to understand themselves as sexual. Wilma’s narrative highlights how she was influenced by discourses of sexism, I think society in general raises girls to think they should be more submissive and guys should be the more domineering, and that puts a strain on girls if they think they have to always please everyone else before themselves. She described the effects of this in terms of sexuality: "It does have an impact on how you go about doing your daily living and sexual encounters." Wilma also recalled times in high school when she felt certain behaviours for young men and young women were treated differently: "You came across as a bitch if you were domineering," with domination being a behaviour encouraged for men but scolded for women, a blatant double standard. Wilma also spoke about the production and reproduction of sexism in society when describing the influences social groups have on young women in terms of sexuality. She did note, however, that she didn't feel the pressure to be sexual in the same ways as some girls may have. She stated, 98 I think your friends more have an influence on how you behave and if your friends see you as a sexual object then that's how they treat you. In school, there were certain girls that were seen as just sexual girls and so they were treated as sexual girls and expected to be that, whereas girls like me that were geeks, the guys didn’t really approach us in a sexual way. This, again, speaks to the pressure to fit a sexist ideal, and that sexuality is very much tied to the body and the expression of that body. Wilma stated a flip-side to this pressure as well. She spoke about how seeing other young women who did not fit into stereotypes of what society expected of them was a source of empowerment for her to draw upon. Seeing how other women conducted themselves in ways that resisted sexist influences was something that gave her confidence to do the same. This is an effect of discourses of resistance. 4.6.3 The Work of Resistance When Wilma spoke about the effects of sexism, she made a specific note that she was able to resist a lot of this growing up and into adulthood. She spoke about how the pressures were there and no doubt influenced her to a degree, but that she always felt a strong support from her family and friends to be who she wanted to be, to think for herself, and to do what she felt was right and best for herself in her decision making. I wanted to add this because it was quite important to Wilma that it be expressed; and, it is significant because this is resistance. She noted, "I wasn't taught that my decisions don't matter or that I should be submissive…I was taught to be more confident." She went on to state, "I tried to get away from that whole guys domineering over girls thing, I didn’t like that at all." Wilma commented on the autonomy she feels to resist pressures in her life: "It's up to you and you don't have to act a certain way." 99 Although Wilma noted there was not a lot of discussion about disability and sexuality during her time at university, she described broadening discussions about inclusivity and sexuality that fuels her empowerment as a disabled woman to include disability in her conceptualizations of sexuality. She noted the liberation she felt, I think just being in college and university made me realize more [how] broader of a world was out there. You didn’t have to fit into these little boxes and you could explore your sexuality if you wanted. You could do whatever you wanted. That was uplifting. She spoke about a shift in her thoughts around pleasure and self-pleasure and she began to explore her body and her sexuality: "I started to think I can just do things differently and pleasure myself differently, then I was happier, but that took a while." She described the liberation she felt in this process of discovery and exploration: "As I got older I was able to explore more on my own and realize there were different ways to pleasure me." When talking about significant things that stood out for her during her early years as a disabled woman, Wilma noted the process in coming to accept herself as disabled and how this related to her sexuality. Where she once spoke about loss, she now spoke about realizing her sexual self again through exploration. She shared, "…coming to a realization that I could still have sex and it would still be pleasurable to me…that really stood out and it made me realize I hadn't lost that." She spoke of a personal revelation at this time in keeping with resistance discourses: "Even though you have disabilities, you still are sexual." Wilma attributed some of the work of resistance to shifts in media, including the rise of the internet, and the more recent attempts at disability inclusivity within media. She was exposed a lot more to this shift than the other women, and at a much younger age. 100 Wilma described feeling more comfortable and confident in her sexual self in later years: "I think I'm a pretty sexual person. And, sex does have an important part in my life I think. I think that as I grew, I got more comfortable with what I had to give." She feels much more empowered to express her own needs and she sees the importance and value of her needs: "Now I am more wanting of pleasure and I feel alright with wanting that." She also noted the importance of a supportive partner, which she found in her now husband. She spoke about the communication, understanding, and respect in that love and the significance of this type of relationship for her in feeling valued. 4.7 Arianna Arianna was 64 at the time of her interview, and, given her age, she commented in ways that positioned her uniquely in terms of a socio-cultural, historical context. She experienced many transitional phases throughout her life in terms of shifts in discourses and social understanding. Having been a young child and teenager in the 50s and 60s and a young adult in the 70s and 80s, she has seen and experienced a lot of change and a lot of oppression. Arianna grew up in Montreal. She is the oldest of five daughters. Her mother was English-Catholic and her father was French. She spoke of her parents as having been her first role models. Her mother left her father after Arianna had grown up, and her relationship with her mother was strained because of this. When she spoke about her father and how he raised her, she described being taught to obey: "[We were] taught to be robots. By that, [I mean] we were told what to do and how to do it and that's how I entered the world. I was a robot." Arianna spoke at points about her background as half-English and half-French, and described experiences with discrimination and being bullied as a child. She also pointed to the poverty she grew up in: "I can remember being so hungry that [it felt like] a big hole right dead centre of my chest." Arianna 101 also made a link to disability when she stated, "When I was 8 I was run over by a car. I was off my feet for about 6-7 months. Ten years later, same thing happened. I've had problems with that leg as far back as I can remember." Approaching her teenage years, Arianna and her family moved to the prairies; after this move, she felt outcast: "I never really had that many friends. I think I've gathered more friends in the last few years than I've had at any time." She noted always feeling pressured to be sexual as she entered her teens: she always felt objectified. She described being developed at a young age and always being targeted by boys and men because of that. It led her to not liking her body very much. She felt a lot of aggression from boys her age and she started to think that maybe that was how things were supposed to be. She felt as though this informed her relationships going forward. Arianna often felt fear and discomfort around boys because of her concern for their intentions. And, when she rejected advances, she described being ridiculed and having rumours spread about her. In learning about sex at this point in her life, Arianna noted that it wasn't talked about. She stated that her mother didn't know much about it herself to be able to tell Arianna and, at no time, did Arianna receive sexual education in school. Media was not really an influence in her life at this time and didn't much become one later on. When reflecting about disability and sexuality at these times, Arianna pointed out that the social perception was one of disregard and shame. She spoke of disabled people not being seen as whole and she noted prejudice in all sorts of ways while she was growing up. When discussing her first introduction to sex, Arianna stated, "The first time for me was a date rape." She added, "I don’t know how it affected me because at first I believed it was my 102 fault because of the way I was dressed, and then I thought, why should the way I was dressed have anything to do with anything?" When asked about the point in her life that she identified as physically disabled she said, "It was somewhere in my 20s. I was constantly tired. I went to bed tired, I woke up tired…I guess I started noticing things even worse after I had my first child." She elaborated, "I seemed to be okay. Nobody seemed to be worried. I'd been to the doctor. So, I didn’t clearly, really worry about it until I was in my 30s, after my last child was born, when things were really [bad]." Arianna became the mother of four children by the time she was in her 30s. She spoke about feeling invalidated because she never "looked" disabled even though she felt chronic pain and fatigue on a regular basis. She also pointed to issues with menstruation at this time: "I was never regular. It started when I was 9, I had a hysterectomy when I was 38." Arianna was in a very toxic, physically and emotionally abusive relationship with the father of her two youngest children. He was very demanding when it came to sex and was never attentive to her needs or pleasure. He also often disregarded her lack of consent. She felt unworthy and unloved; she felt as though she didn't matter. Arianna discussed never really having any positive experiences around sex at all throughout her life to this point. She didn't feel good about that part of her life and she didn't enjoy it; she wasn't even aware that she could enjoy it or was supposed to. She felt that sex was nothing more than a duty or a chore. Arianna left this toxic relationship later in life and talked about meeting the man that is her current husband: "I walked into that room and I saw [my husband]. My hair stood up on-end, never felt that before. I started feeling shaky on the inside and I'm [thinking], ‘What is this?’ It was weird." She began to date him, cautiously, because she was very unsure of relationships due 103 to her previous experiences. They fell in love and they married in her 50s. Arianna speaks about her now husband in a way that expresses true love. Her confidence grew at this point, along with her comfort in relationships. She talked about how fun her husband is and how understanding and accepting he is. Their relationship is tender and thoughtful. She feels empowered to be herself and speak her mind about what she needs in a way that allows her to feel understood and feel safe - which is a big thing for her having not felt safe previously in her life. Arianna stated something so profound and beautiful when talking about the safety she feels now: "Vulnerability does not mean disaster." Exploration and pleasure are prioritized in their sex life. She enjoys sex with him and it's an important part of her life now: "And, with him, oh, our sex life is really…well, actually it's kind of hilarious and wonderful at the same time." Her relationship is loving, trusting, safe, and supportive: "He does not hurt me, he treats me like a queen. I have never been treated like that before in my life, ever." She also stated, "He does not control me whereas the others tried to control." Arianna is empowered and liberated at this point in her life. The following sections display the influences of ableism, sexism, and resistance throughout her life based on the story she shared with me. 4.7.1 The Work of Ableism Arianna spoke about the social perception of disability and sexuality at the time when she was growing up. She said that the mentality at that time was that disabled people didn’t have sex. She stated that disabled women were seen as "…not whole", and that they wouldn’t be expected to produce children. Therefore, sex was not seen as something disabled women would or should engage in. This type of ableist language around disabled women and sexuality is not an uncommon one (e.g., Linton, 2007; 1998a), and it no doubt affected how Arianna saw herself in 104 young adulthood. She expressed, "[I felt] unworthy. Like I wasn't good enough. I always felt like I wasn’t good enough for anybody or anything." She positioned herself as flawed due to internalized comparisons to non-disabled women that assumes an ideal body. She stated, "I really didn’t like my body…I never thought I was pretty." Arianna also expressed feeling invalidated in her disability. Her disability could be considered to be an invisible one, and her frustrations here are noted because she felt that her very real experiences of pain and mobility limitations at times were not acknowledged as legitimate. She stated, "Having all of these mobility issues, it doesn’t look like I have anything wrong with me." She noted feeling as though she always had to measure up and act like everything was fine when that wasn't always the case. She spoke about feeling the pressure to "push through" her disability due to the pressures of expectations and her personal responsibilities as a wife and mother. This emotional and physical labour in pushing through was also linked to Arianna's sexual experiences. She noted always feeling as though sex was only about her partner during her younger adult years. She spoke specifically about her early sexual experiences with partners during the times both before and after the birth of her children. She noted feeling Othered, oppressed, and devalued in her sexual experiences before she met her current husband in her 50s: "Nothing before [my husband] was pleasant. Sometimes it was extremely painful…It didn’t seem like I mattered." The pressure to always put others' needs first and to have sex in service of that other person is linked to sexism. She never felt that sex was ever about her or her needs and pleasure. In fact, when asked if her pleasure was ever a priority in sex before her current husband, she answered, "I didn’t know I was supposed to experience any." Again, this is very much tied up with sexism. 105 4.7.2 The Work of Sexism Sexism links to ableism in a few ways throughout Arianna's story. As mentioned, the pressures she felt to push through her disability and to please partners is a compounded pressure with sexism. Ableist comparisons to an ideal body image is also implicated with sexism. Arianna felt devalued with respect to her body. She felt her body, in sexual terms, was nothing more than an object for a man's pleasure and that she was expected to comply with that. She spoke of one partner she had and how she often felt pressured and sexually objectified by him. She stated, "He was very rough when it came to sex…he wouldn’t leave me alone in the sex department." Arianna also spoke about experiences in dating before she met this partner and she noted that she always felt the pressure and expectation of sex. Her needs and pleasure were never a part of sex and this informed her idea of sex in general. Before meeting her current husband, sex was a duty or a chore: "It was like something I had to do, like wash the dishes or laundry…It didn’t feel any different than that." Sex was a service to her husband and a means to motherhood. Arianna also noted feeling stuck in a transitional phase when she became a mother and the perceptions of her working during some of those years. She stated, "I think I was caught in the in-between where the wife stays home and looks after the children…and when the mother goes to work and finds a baby-sitter. So, I was caught in the middle, at the transition." In terms of sexual education, Arianna mentioned feeling rather confused. She never received sexual education in school and there wasn't much discussion in other settings around it either. She spoke about her ideas of sex up until meeting her current husband: "Mostly, up until [my husband], most of my ideas about sex were one big confused, chaotic mess." Arianna shared that emotional, physical, and sexual violence was a part of her experiences in life and that this shaped her understanding of sexuality. She felt victimized and 106 powerless at times in her life and she often felt unsafe and took on a sense of blame and responsibility for these experiences. Sexism is arguably a catalyst for these types of violence against women and it also results in gaslighting women who are survivors of this violence by causing them to feel self-doubt and self-blame. Arianna mentioned that she "mistook aggression for strength" when it came to sexual partners. This links to how women might be led by sexism to believe that men should act in aggressive ways and that this is an acceptable form of treatment toward women. Sexism conveys that men should be dominant and women should be submissive. She stated that most of her partners before her current husband were aggressive men. The pressures of sexism were at work in many complex ways throughout Arianna's life and she had to navigate this with very little support…but then came the love of her life. 4.7.3 The Work of Resistance Although Arianna noted the pressure was always there to have sex, she spoke to her personal resistance of this pressure; at times, she turned down or avoided the pressure from men for sex if she was uncomfortable. That said, she spoke of her now husband as a game-changer for her confidence. Her sexual awakening came with him, as well as her interest in learning more about and exploring sexuality. Arianna spoke about feeling sexually empowered in her current relationship. There is strong communication, understanding, and respect between her and her husband. Exploration and pleasure is a focus in her sexual life now where it never existed before. She explained the shift from previous relationships: "I don’t think I understood sex before. … It's not like a duty anymore, it's kinda fun! It's quite enjoyable!" When talking about the elements that are important in her relationship, she added, "We have that trust between us…you can feel vulnerable and know you're still gonna be safe." 107 Arianna spoke about the freedom she feels to explore her sexuality and explore sex that is pleasurable for her and her husband: "Figuring out what was comfortable for both of us. Actually exploring it in a fun way…find[ing] out what each partner likes." She feels more comfortable and confident in her sexual life now: "I feel good about it. I don’t feel hesitant." She described feeling empowered, liberated, and autonomous in her sexual interactions: "Well, if I want to, I can start it…I can ask if I want to. Or, even admitting that I like it." Arianna shared that she feels valued, supported, and loved in her life now: Some days when the pain is so bad I can't stand myself. I'd scream if it didn’t hurt so much to do so. I'll just be laying there frozen. He holds me, and he sings. He sings things like Mary Poppins songs like "Let's go fly a kite", or "Spoonful of sugar", or "You are my sunshine" - and that one really [gets] to me 'cause my dad used to sing that to me when I was little. And, all the pain [doesn't] change, but the perspective I think [changes]. The pain [is] still there, but I [can] tolerate it because he [is] holding me and he [is] singing to me like I [am] something precious and I've never felt that before. The communication, understanding, and respect Arianna feels with her husband allows her to feel that she can express her desires and needs. She described her sex-life with her husband now: "As far as I'm concerned, right at this moment, when it comes to that part, I got it made!" Finally, Arianna made several comments that directly oppose ableism. She stated at one point, "Just 'cause you're disabled [it] doesn’t mean you don’t want sex." She went on to state, "Whether you're disabled or not disabled, we all have the same feelings, wants, and needs." Toward the end of her interview, when asked if she wanted to add anything else, she had some 108 words to pass on:"You know, just 'cause you're disabled, [it] doesn’t mean you don’t like sex. You like sex just as much as anybody else!" 4.8 Gail Gail was 48 at the time of her interview. For Gail, learning about sex in her early life came mostly from friends: "The grade 5 teacher taught about the mechanics of periods and the penis and the vagina - this type of thing, ya know. How babies were made. And then, the rest of it I learned from friends." Her sexual resources included magazines and books, and, interestingly, not so much TV or movies: "The sexual content on TV when I was a child was a lot more subtle than it is now. So, I read a lot." Gail discussed the fact that her parents were old-fashioned and that "sex was never discussed in the home." When describing how she felt in learning about sex at this time she said, "I was kinda scared and disgusted at the same time. It was kinda shocking. 'Cause, like I say, my parents never talked about it. I didn’t even know sex existed." She also spoke about perceptions regarding disability and sexuality when she was growing up: she was always taught that disabled people don't have sex, and it shouldn’t be talked about if it does happen. This thinking was "the general culture of the time." It was "taboo." Gail did not identify as disabled at this point in her life, but that culture certainly informed her going forward and influenced her when she did become disabled. In her teenage years, Gail felt ashamed and embarrassed about sex and linked this to her religious upbringing and the influence of her parents' thinking. She felt very naïve about sex having grown up in an environment that was sexually reserved. She discussed not really exploring her sexuality to any great extent until after she moved out of her parents house at 19. Gail commented on still being uncomfortable with sex in some ways into adulthood: I still don’t feel comfortable because it was such a topic [I] couldn’t talk about when [I was] 109 younger." She spoke of never really enjoying sex much at all: "Even now it’s hard. It's hard. I mean, my partner is patient, but it's just hard." She attributed this to her past experiences - her upbringing and her experiences of sexual assault during her childhood and youth: "So, that made me turn off a lot… that experience still affects me. Like, I don’t enjoy sex. I just don’t." Gail first identified as physically disabled in her mid-late 30s. She described that time as "rather shocking" even though she knew something was going on and she wasn't feeling well: "I've always had this physical disability. It just wasn’t diagnosed until [later]." She has a chronic illness and struggles with feeling invalidated because her disability is an invisible one. She did go through a period of grief after her diagnosis and often felt like she "wasn't normal". She quit working at this time because, "I couldn’t work full-time. My job required extensive travel, it was long hours." In speaking about her sexual encounters Gail stated, “I've never actually been with a man where [I've], what you'd call, made love to. It was always just intercourse, and it was always quick." She never felt like her needs or pleasure were a factor in the encounter and her self-esteem was affected by that. She felt used. Gail prefers not to disclose her disability to sexual partners, especially non-disabled partners. She is uncomfortable with the reaction she might get. She's been treated badly in the past because of her disability, so she prefers to keep her disability to herself until she feels fully comfortable enough to disclose. A current partner she spoke about is also disabled and so she has disclosed to him, but she emphasized that if he was not disabled she doubts that she would have told him. She stated, "I've not had that experience of having sex with a non-disabled partner that was open and honest." In more recent years, Gail expressed her recognition of changes in society around disability and sexuality. She attributes this, in part, to more inclusive media: 110 A lot of it is social media. Like, social media has really taken off. I'm on a lot of groups that are related to my disability and there's a lot of information out there. It's like, yes, you are disabled and you can have sex. There's a lot more in the media and there's a lot more inclusion now than there used to be. She feels supported by this shifting framework. Gail is much more open about expressing her needs now and feels that she is deserving of pleasure and respect, but she also pointed out that this "came rather late in life with me." She described feeling much more in control now around sexual encounters and feeling that her voice matters. She now feels worthy of respect and understanding. Her comfort communicating about sexuality and sexual interactions has increased. This empowers her. Gail has become very much an advocate for women and disabled women who have been sexually assaulted and her passion around this topic is clear: "There should be channels and outlets for a woman to speak out if she feels she's being sexually abused or sexually assaulted, or being mistreated…measures where it is not so uncomfortable for her." While acknowledging some improved understandings of disability in recent years, Gail emphasized the need for further shifting frameworks around disability: "If you're disabled, you're disabled. You're not less of a person, [and] there's still that mentality out there…There needs to be changes [at] the media level [and] there needs to be changes [at] the government level." The following sections display the influences of discourses of ableism, sexism, and resistance throughout Gail's life. 4.8.1 The Work of Ableism Gail spoke about her disability in ways that showed an internalization of ableist scripts. She felt a sense of loss and shame in relation to her disability when it was diagnosed and this made her feel Othered and oppressed: 111 I felt a little bit less of a person. Like, I felt now that I'm this disabled person, I have special needs, you know, I felt a little bit less than everybody else. I felt I just wasn't normal, like my normalcy was taken away. This displays the shaming that ableism perpetuates around disability, and the constant comparisons made against non-disabled people that can lead to a disabled person feeling like they aren't normal. For Gail, these comparisons led to feelings of being flawed. An example of internalized ableism was clear when she stated, I've always felt like a failure all my life. I mean, considering my disability, I've succeeded more than a lot of people with the same disability, but I have not succeeded to a normal person. And, that has disappointed me and I feel like a failure. Gail also felt invalidated at times: "It was very hard to get my family and friends to understand what it is. They didn’t believe I had it because I acted normal." She elaborated, "a person with an invisible disability - you're invisible to other people, or your disability is invisible - but it's there for you." Navigating both worlds of being shamed and invalidated is emotionally laborious. Gail pointed to the social understanding of sexuality at the time she was growing up, which influenced her own thoughts about disability and sexuality. She very tellingly stated, It wasn’t a taboo subject if you were a heterosexual, married couple, or you were a couple living together or dating or whatever. But, sexual intercourse among people who were disabled, or transgendered, or homosexual, or any type of other relationships that are not identified, that was a taboo subject at the time. This would have been in the 1980s/1990s. That was just not talked about. 112 She also spoke about the general lack of sexual education with respect to disability, noting that medical professionals never addressed sex with her and certainly not in terms of pleasure. Gail found herself having to rely on old stereotypes she'd been exposed to. She stated, "I didn’t even know it [was] accepted. What I was taught [was that] if you were disabled you did not have sex, or if you had sex you did not talk about it." This exclusion stuck with her and informed how she went on to think about disability and sexuality. It affected her sexual interactions and the treatment she experienced from partners who were also informed by ableist discourses. Gail spoke about avoiding disclosing her disability to partners, and it's something she still struggles with, specifically with non-disabled partners. Often times, she doesn’t disclose: "I don’t like disclosing to sexual partners that I'm disabled…I find myself that I get treated worse." She described feeling victimized and powerless in the past due to experiences of emotional, physical, and sexual abuse. Gail expressed never feeling genuine love, passion, or pleasure from sexual interactions. She never knew it was possible. She felt shamed and devalued as a sexual partner and it affected her self-esteem. She spoke about how her sexual interactions often went: …a lot of times they would just not call me anymore...I never often went on second or third dates. My sexual experiences have never been a dinner, a movie, and then sex. It's mostly been just sex, because I felt that was all I could get being a disabled person. 4.8.2 The Work of Sexism Gail mentioned skewed sexual education around the roles and expectations of women when it comes to sex and sexual relationships. She felt a sense of shame and embarrassment around sex in general and attributed this to her upbringing - the largest influences here being her parents and the church she grew up in. She stated, "Sex, I felt ashamed of. I felt ashamed, I felt 113 embarrassed…it was definitely from my upbringing." Gail also mentioned her past experiences with sexual violence and how this affected her subjective sense of herself as sexual. She still does not really enjoy sex due to the lasting effects of negative experiences with partners that were fueled by the influences of ableism and sexism. Gail came to see sex as labour or work and she did not associate it with pleasure at all. She always felt like sex was about her partner's pleasure and never her own. She felt that she had to put up with this just to engage in sex at all: "I felt like any male attention [was] better than no attention…it was always about the guy and his pleasure. Once he was done, that was it." When I asked her how that made her feel, she stated, "It made me feel quite scummy and dirty". Gail felt the need to please or satisfy partners to keep them interested, even at her own emotional expense: I felt like I would lose the guy if I didn’t have sex with him…when that happened I felt less of a human. I felt my needs weren't being met. I felt I wasn't respected. I felt I wasn’t loved or cherished or treasured. And, I felt jealous and left-out 'cause I didn’t have relationships like other women did. This feeling of being Othered, devalued, and disrespected runs deep as a result of sexist discourses that perpetuate the stereotype that women should be of service sexually, and that their needs are irrelevant. That Gail compared herself to "other women" in her statement above is also evident of sexism's pressure to measure up to an ideal. 4.8.3 The Work of Resistance Gail mentioned more inclusive discourses that have shifted her thoughts and feelings about disability and sexuality in recent years. She noted a shift in social narratives emerging in online communities around disability and sexuality: "The general mentality is that it's normal to be disabled and have a sexual relationship…in the last few years there's definitely been a 114 switch." When I asked her how she felt about this, she said, "[It’s] kind of a relief." Gail feels more empowered to find and use her voice lately and this has made her feel much more confident in sexual interactions with partners. She stated, "I was able to basically empower myself to improve my communication…I was able to break outta my shell and speak up a lot more." She elaborated, "I was able to speak my mind and my voice and express my opinion and I wasn't rejected because of it." She felt more space in general to express her needs in sexual interactions. Gail feels a shift in her personal feelings about sex as well. Her feelings shifted from the shame and embarrassment she felt before. She shared how she felt after a sexual encounter whereby she used her voice and expressed herself: "I didn’t have this deep, grinding shame." Gail expressed the importance and necessity of open, honest, and supportive communication in sexual relationships and how this is what she aims for now. She stated, "You gotta be honest about your feelings, you can't hold it inside...You have to talk about the good and the bad… You have to be open and honest in a sexual relationship, if not, then there's no point." She feels liberated to own her rights to sexuality and sexual pleasure now: "I know in my mind now [that] it is okay to have sex. It is nothing to be ashamed of, and as a disabled person I have a right to have as much sexual pleasure as anybody else." Gail also feels empowered to be autonomous in her sexual life: "I can control who I have sex with now and when I have sex. And, I have the ability to say no now that I didn’t used to have." She feels self-assured as a disabled woman while also pointing to the many other pieces of her sense of self: Just because I'm disabled doesn’t mean I can't be sexual. You know, the sexual part makes up a part of me [but] there's other parts of me as well. Like, I am a whole person and the sexual part is all included in that wholeness. 115 Resistance appeared when Gail spoke on other issues as well. She spoke at some length about the higher risk of sexual violence toward disabled women and called attention to the need to address this. She called for stronger, more supportive services to be put in place for disabled women who are survivors of this violence as well as stronger, pro-active measures to be taken to prevent the violence in the first place. Gail also called for greater systemic change and multi-level action to curb the continued and more covert forms of discrimination against disabled people that can lead to adverse effects from oppressive discourses like ableism and sexism, among others. She noted that discrimination has seemingly lessened, but that it has also gotten more subtle. Oppressive discourses are still omnipresent and pervasive in many ways. A quote she shared, in true resistance form, sums this up well: When I was younger, you could talk about it and openly discriminate against a disabled person…now, you just can't talk about it, but people still discriminate against people with disabilities. It needs to be [to] a point where [people] just do not discriminate against people with disabilities, period - it needs to be at that level. 4.9 Summary An important theme in the women’s narratives is how ableism was present in skewed sexual health education. They spoke about how disability is often times completely disregarded when it comes to sexual health education. Such disregard for disability reinforces the silence that surrounds and pervades social understandings about disability and sexuality. Not only is this true for sexual health education, but the women also pointed to issues in various forms of media, as well as social climates over time regarding disability and sexuality. Sexuality is rarely discussed; when it is, it is most times very biased in its representation. It often presents as a skewed 116 appropriation of disability experiences, which only further reproduces misled narratives and tropes. Where ableism de-sexualized the women, sexism hyper-sexualized the women. There is an ideal norm set forth by sexism in relation to women's bodies as well as sexists ideals around the roles, expectations, and value of women when it comes to sex. Notions of beauty and desirability are tied to these sexist understandings and this effectively dictates what sex should look like, who it should be for, and what a woman's role in sex is. Sexism pressures women to be sexual, but in service of partners, with little to no regard for the women's own needs, desires, or pleasure. At the same time as sexually objectifying women, sexism also shames women for taking control of their own sexual lives and expressing their sexuality in ways that might not fit a mainstream, biased, sexist understanding of what a sexual woman "should" be. Disabled women are in a unique position of having to navigate the influence of both sexism and ableism when it comes to their sexuality and sexual lives. This is especially present in the case of invisible disability, which was the case for the majority of these five women. They are subject to the hyper-sexualized pressures of sexism when they do not disclose their disability and subject to ableist de-sexualization when they do. Ableism and sexism interlocked in many ways and their oppressive scripts compounded for the women in my research. Even though the scripts themselves might differ in some ways, they Other disabled women similarly. Both ableism and sexism preached widespread denial of pleasure and both created an emotional labour evident in the data that resulted in the women feeling pressures to explain themselves and their disability, measure up, push/power through, consider their own sexual needs/pleasure last, if at all, and fight for social and sexual rights/parity. Both discourses played out in the data in overt and covert ways and both were 117 prominent within skewed social, educational, and media forums. Arguably, both discourses also contribute to the greater risk of sexual violence that is present among women, and greater still among disabled women. Some of the women spoke to these experiences of sexual violence. When speaking about the overt and covert forms of discourses, silence becomes an important covert piece to interrogate. The silence that pervades much of the oppressive discourses around disability and sexuality can be seen as a means to maintain that oppression (Shildrick, 2007). The women in this research spoke to this at different times in relation to feeling left out of mainstream social narratives of sexuality. Shildrick (2009) presents an argument that silence produces the dominant narratives around disability and sexuality, but Campbell (2008) posits that silence is not the productive piece of the process. Campbell (2008) claims that there is a purposeful Othering in the interest of preserving dominant ideals. She states that it is not a silencing that produces an Othering effect, but that ableism, and I argue sexism as well, functions actively in non-silent ways through representation and language to position disabled women (Campbell, 2008). I propose that there is a middle-ground here. The production of a dominant, social understanding of disability and sexuality does occur through representation and language, but the elements of this are both silent and non-silent. A lack of unbiased representations or social conversations about disability and sexuality are productive in similar ways that overt misrepresentations and skewed social language are. The silence around disability and sexuality informs non-silent narratives that arise in relation to it. When disability and sexuality is not entirely disregarded or silenced in society, it is often distorted with disabled voices and experiences misrepresented in ways that maintain dominant social and cultural centres. There is silence, yes, but the ableist and sexist productive social processes are also active in many non-silent ways as well. 118 Resistance made attempts to counter and controvert the more oppressive scripts put forth by ableism and sexism. It made space for more inclusive and intersectional perspectives about disability and sexuality and worked to shift social understandings of disabled women's sexuality toward an empowerment perspective. It opened up thought rather than closed it down. During a follow-up meeting to member check with some of the women about the data analysis, they stated that the notion of resistance represents their reality and that they felt supported and empowered in claiming their sexual rights because of it. They also stated that space is held within resistance discourses for the complex, intersectional nature of their lives - hence the comments about it representing their reality - and how integral the understanding and respect for this intersectional perspective is. Resistance discourses are the embodiment of a movement of people who no longer wish to subscribe to oppressive thought. Discourses shape peoples' understandings, interactions, and experiences, but they are also the product of those same things and are produced and reproduced through this bidirectional relationship. Resistance discourses can be said to be a rising up from the grassroots of disabled women's perspectives as opposed to the more top-down, oppressive regime of discourses like ableism and sexism. Ableism and sexism are not rooted in personal experiences, resistance is. In my research, resistance worked by exposing and interrogating previously un-questioned and taken-for-granted social narratives about disabled women's sexuality. It offered a narrative that included the complex, intersectional, individual experiences of disabled women instead of the more limited, homogeneous, oppressive social understandings that dictate personal experience rather than showcase it accurately. Resistance discourses are the birthplace of the re-imagining of disability and sexuality. It also makes space for solidarity among disabled women to recognize the complexity of social interactions and influences, and the life experiences they 119 shape. This complexity does not need to be something that separates or alienates one cause from another. The intersectional workings of relative privilege and oppression in the individual lives of disabled women can be brought together for a fuller, richer understanding overall that serves both disabled and non-disabled social understandings of disability and sexuality. Language has the power to shape and re-shape culture; resistance can be a part of this re-shaping. I wanted to take the time above to address some similarities among the women, but to also highlight that this in no way homogenizes the women or their experiences. For example, there are widely shared positionings like feeling devalued, Othered, at fault/flawed, empowered, liberated, autonomous, among others, but these were often spoken about in unique ways by each woman. Each woman's subjective sense of herself as sexual is distinct, even if there are similarities in experiences and subject positions. Another example is the concept of emotional labour. This was present throughout all of the women's stories, but their stories are not the same. I want to stress this. Importantly, the women also supported the need for diverse, intersectional perspectives regarding their lives. That said, there are striking similarities among the women's stories when it comes to the discourses covered. Ableism acted in very similar ways, as did sexism. As for resistance, it was the strongest in the face of oppression and perhaps this makes sense. After all, it is arguably oppression that is the greatest motivation and incubator for resistance. The most apparent influences of resistance surfaced later in life for all of the women and its influence came in different ways and through different types of relationships. Some women noted the influence from higher education and some noted the influence of family, friends, and sexual partners that were supportive and understanding as contributing to this shift. The media was more of an influence on some of the women; age could have likely been a factor here as the women range in 120 age from their mid-30s to their mid-60s. Those highlighting the influence of media noted a shift in perspectives around disability in recent years even though they criticized media at points for its portrayal of disability, or lack thereof. The stories these women have shared with me have given me more than I ever thought possible in so many ways. I treasure these pieces of their life experiences. I am truly honoured to present their stories to you as best I can. I would like to note that there is so much more rich detail and context in the full transcripts, and so much emotion in the recordings, but I hope I have been able to display each woman's voice here within the scope of what this thesis is interrogating. 121 Chapter Five: Discussion This research focused on the influence of socially constructed discourses regarding disability and sexuality and how these discourses informed the stories that the women told about their sexual lives. While numerous discourses were at work in the women’s narratives, the findings highlight the powerful presence of discourses of ableism, discourses of sexism, and discourses of resistance. Oppressive discourses like ableism and sexism are pervasive in society when it comes to the social perceptions of disability and sexuality. These discourses do not center or value the voices or experiences of disabled women; discourses that do, like resistance, often exist at the margins of social understanding. This research aims to expose how dominant discourses conveyed about disability and sexuality shape how disabled women give meaning to their sexual lives and practices and their sexual subjectivities. In doing this, I hope to create more space for disabled women's experiences as well as more space for the types of discourses, like resistance, that better serve disabled women in terms of their rights to inclusive sexual citizenship. As laid out in Chapter Two, the research that exists in the area of disability and sexuality is limited, and often biased toward a medical model approach to research that focuses on the form and function of the body as it compares to a "normal" body (Hocaloski et al., 2016; Smith et al., 2015; Wiegerink et al., 2011). The research that does adopt a more critical disability studies approach to disability and sexuality points to the dismissal of disabled peoples' sexuality and sexual rights, with an even larger spotlight on the dismissal of disabled women's sexual citizenship (e.g., Bahner, 2012; Beckwith & Yau, 2013; Drummond & Brotman, 2014; Garland-Thomson, 1997, 2002; Jungles & Bender, 2015; Linton, 1998a, 2007). In a similar way to the more critically informed studies, the women in my research spoke to the many effects of 122 oppressive discourses like ableism and sexism, and how the consequences of these affect their lives. All of the women spoke about feeling devalued and Othered at different points in their lives with respect to sexuality. They also spoke about the complexity of navigating sexual relationships as either visibly or invisibly disabled women, and the emotional labour involved in this. However, the women also brought attention to a sense of resistance they all felt toward oppressive discourses and they shared their personal experiences with respect to how this resistance continues to inform their lives. The following sections demonstrate the significance of the research findings as they relate to existing theoretical and empirical literature in the area of disability and sexuality. I begin with a section theorizing the productive power of oppressive discourses. Subsequently, I specifically look at the complexity of visible and invisible disability as it relates to social positioning, and I examine the omnipresent phenomenon of emotional labour that was threaded throughout all of the women's stories. Following this, I highlight the significance of resistance discourses in this research and how resistance has productive power with a potential to shift existing social thoughts around disability and sexuality. I end this chapter with a brief section on possible methodological, policy, and practice contributions, followed by a short statement speaking to the limitations of this research. Finally, I briefly outline my recommendations for future research in this field. 5.1 The Power of Oppressive Discourses The purpose of this research was to expose and interrogate the productive and reproductive power of discourses and how this process shapes the sexual lives of disabled women. The relationship between discourses and representation is bidirectional and this process influences social understanding and personal subjectivities (Burr, 2015; Gergen, 2015; Goodley, 123 2017). Looking at the effects of discourses on disabled women's sexual subjectivities requires attending to the societal structures that produce and reproduce inequality, exclusion, and oppression (Goodley, 2017). Contemporary ideals and expectations are "complex phenomenon" (p. 98) comprised of multiple historical and structural toxicities, which include ableism and sexism (Goodley, 2017). That said, an analysis of subjectivity must also focus on social interactions and relationships (Goodley, 2017). Subjectivities are produced by both social interactions with other people as well as social institutions; further, these interactions and institutions shape and are shaped by social and cultural narratives/discourses. Discourses have the power to enable and constrain certain ways of thinking, privileging some understandings and hampering others (Berg, 2009; Cheek, 2004). A lack of understanding of the productive nature of discourses results in an un-balanced privileging of some cultural narratives over others, marginalizing and silencing valuable voices and narratives with significant consequences in peoples’ everyday lives. The women in my research spoke to this issue and pointed to the effects of oppressive discourses on their sexual lives. In a similar way, Zitzelsberger’s (2005) study also documented the outside influences of discourses on disabled women's sexual lives through a denial of sexuality, and she similarly found that how others see disabled women informs how they see themselves. When society does not make space for disabled women's voices in narratives of sexuality, it threatens disabled women's rights to sexual citizenship. Discourses of oppression come from the dominant centre of society and push people out to the fringe/margin, but discourses of resistance are born at the margins under the recognition of this power imbalance and they push back (hooks, 1984). bell hooks (1984), a black, feminist author and activist, argues that there is a responsibility of those at the centre of society to 124 recognize and understand their un-balanced and un-due privilege and make space for those who have been unjustly oppressed and marginalized. She further maintains that although the margin defines (exposes) the centre, it is not the sole responsibility of the margin to change how the centre operates. What the periphery of society can and does do is elucidate new ways of thinking toward possibilities for a new, more inclusive centre of society by exposing the fluidity of its construction. Pushing back or resisting from the fringe in this way allows for this exposure, but the responsibility of those at the centre to make space for marginalized experiences is most paramount (hooks, 1984). For instance, applying hooks' rationale to disability, it is not the responsibility of disabled women to somehow right the wrongs in the history of their treatment by society. It is, rather, the responsibility of those occupying the centre, those who carried out the exclusion/discrimination and benefited from it, either knowingly or ignorantly. The centre of society is, in large part, responsible for the unjust social positioning of disabled women, a positioning that continues to be unjust in many ways. Kafer (2013) speaks about feeling the effects of oppressive understandings of disability that painted her life as a disabled woman as pitied, pathetic, sad, and, in need of being overcome. She spoke about how disability is viewed as adverse, defective, and something to avoid at all costs: something terrible, tragic, life ruining, and in need of fixing by medical intervention. The bright light of speculation is rarely turned back on society itself but, rather, casts steadfastly toward disabled people for being inherently flawed and therefore at fault for what disability is understood to be and mean. This pattern of maintaining the oppression of disabled women’s rights has consequences: first, the value of a future that includes disabled people goes unrecognized, while the value of a disability-free future is seen as self-evident; and second, the political 125 nature of disability, namely its position as a category to be contested and debated, goes unacknowledged. The second failure of recognition makes possible the first; casting disability as monolithic fact of the body, as beyond the realm of the political and therefore beyond the realm of debate or dissent, makes it impossible to imagine disability and disability futures differently. (Kafer, 2013, p. 3) The women in my research attested to the need to expose and interrogate the causes of their oppressions and for society to recognize and understand their rights, including their sexual rights. From the margins, their stories exposed the centre and the effects of ableism and sexism in their daily lives. Ableism played out in many ways throughout the data, as I summarized at the end of Chapter Four (Part Two). Often, ableism came to light in the stories the women shared where their disabilities were portrayed as a personal fault or flaw: ableism produced disability as an individual defect in the women’s narratives. This links to medicalized perspectives that underpin ableism and its work. Ableism measures disabled women against an "abled" ideal with an undercurrent of shame for not meeting that ideal. When it comes to sex, ableism is arguably responsible for a widespread denial of sexual rights for disabled women due to the lack of disability inclusive narratives regarding sexuality and pleasure (Beckwith & Yau, 2013; Esmail et al., 2010; Garland-Thomson, 1997, 2005a; 2005b; Jungles & Bender, 2015; Linton, 1998a, 2007; Payne et al., 2016; Wendell, 1996). Sexuality is socially tied to bodies that fit an ideal norm. Bodies outside of this norm are seen as less-than. Ableism structures the space where these bodies are excluded. This takes place at many levels and through both overt and covert means. Disability in this ableist space is seen as loss and tragedy, or something to overcome or 126 get rid of altogether, and it is clearly not seen as sexual (Garland-Thomson, 2005a; Linton, 1998a, 2007; Wendell, 1996). As outlined in Chapter Three, this research comes from a social constructionist standpoint with poststructural influences utilized to highlight the power and productivity of language to privilege and/or oppress, and the malleable nature of this process. I am looking to center disabled women's voices as their value is more often than not overlooked in mainstream society and their experiences become eclipsed by narratives that are not their own. That said, I am not looking to undermine the significance of what the women in this research have shared in terms of their reality and experiences by claiming it all to be a mere construction. As Wendell (1996) states, there must be a balance in social constructionist thought on disability; a balance between thinking of disability as an inherent tragic bodily fault or flaw that is immutable, and thinking that disability is so entirely constructed by society and culture that it is controlled fully by human thought and action with no room for acknowledgment of personal experiences of impairment that exist. I agree. This links directly to the complexity that is embedded in disability; a complexity far beyond the mainstream social meanings prescribed to it. Kafer (2013) speaks to this complexity as well. She states that even though she enjoys her life and values her experiences as a disabled woman, she does not wish to become "more disabled" (p. 4) and she supports "prenatal care and public health initiatives aimed at preventing illness and impairment" (p. 4). She states that this could be seen as an ableist perspective but, arguably, it speaks to the need to balance perspectives of disability in terms of Wendell's (1996) suggestion above. In a similar way, the women in my research spoke about times when their disabilities were not ideal for their lives; they spoke of pain and the reality of inconveniences. This does not have to be seen as ableist but, rather, as honest life experiences that highlight the 127 realities of impairment but also include the myriad of other experiences of disability along with it. The complexity of experiences is where oppressive discourses fall short. Kafer (2013) underscores the importance of striking a balance. She is critical of ableist driven medical perspectives of disability, but also sees the value and necessity in medical intervention. It is a complex conversation that surrounds disability but it needs to be had because how disability is seen and understood impacts how disabled women are seen and understood in terms of rights such as sexual citizenship. Kafer (2013) also points to the need for disabled people's voices to be given space in these conversations, which is something I whole-heartedly support. In line with Kafer, the women in this research spoke about the need to have disabled women's voices represented in an intersectional way to showcase the complexity of their individual experiences in efforts to foster a more inclusive narrative around sexuality, sexual pleasure, and sexual citizenship for disabled women. 5.2 Visible and Invisible Disability Part of the complexity discussed above relates to the concepts of visible and invisible disability and what this means for disabled women's sexual subjectivity in terms of the discourses that shape them. This distinction was not anticipated as a point of discussion before the data was collected and analyzed but it is important to look at because the majority of the women in this research are, what could be considered, invisibly disabled. I use invisible disability purposefully, as opposed to non-visible or non-apparent. In alignment with Samuels (2003), this demonstrates my argument that these disabilities are disregarded and/or disbelieved to be legitimate and, therefore, are often socially overlooked or ignored. This follows from and relates to the silencing the surrounds disability and sexuality discussed in Chapter Four (Part Two). There is an interesting contradiction with invisible disability as pointed out by Samuels 128 (2003) and discussed by some of the women in my research. In one sense, a person can "pass" socially because they do not always "look" disabled from a societal misconception. Thus, invisibly disabled women are spared, in part, from direct social discrimination. Of course, internalization of ableist and sexist scripts is something that can affect disabled women's self-image regardless of visible or invisible disability (Bahner, 2012; Batty et al., 2014; Beckwith & Yau, 2013; Drummond & Brotman, 2014; Jungels & Bender, 2015; Parker & Yau, 2012; Zitzelsberger, 2005). At the same time, however, an invisibly disabled woman's very real impairment can become invalidated by society, which can also lead to issues of exclusion and inequity or discrimination. Some of the invisibly disabled women in my research spoke about feeling invalidated at different points in their lives. It could be argued by some that there is a level of privilege for invisibly disabled women in social settings because they sometimes are able to pass when visibly disabled women cannot; however, the flip side to this is riddled with suspicion and denial of their disability when real impairments exist for those women (Wendell, 2001). As noted in Chapter Two, the social model of disability moves to avoid the hard-set medicalized perception of disability, but in doing so, it removes impairment from the conversation about disability and impairment then falls victim to medical notions of illness or flaw. Invisible disability, then, is more often linked to medical model perspectives of disability as illness and this further complicates how it comes to be seen, when it is seen, by society (Samuels, 2003). These experiences of invalidation or being medically labelled can affect personal navigation in social interactions as well as self-identification and subjective understanding of self. When it comes to disability, there is a cultural fixation and reliance on visibility (Samuels, 2003). The personal experiences of invisibly disabled women are more overlooked because 129 society, close-mindedly, cannot fathom to prescribe meaning to narratives of disability outside of what it sees as clear-cut, visible disability. Some of the invisibly disabled women in my research shared that they sometimes felt that others, including sexual partners, did not understand or disregarded their needs because they did not "look" disabled. Wendell (2001) speaks about the emotional labour in constantly needing to explain herself or draw attention to her impairments just to prove a point. She also speaks about sometimes choosing not to disclose her disability to save herself the trouble of discrimination. One of the women in this research spoke about not disclosing her disability to sexual partners for this same fear. Samuels (2003) speaks to navigating an internal conflict when choosing to "pass" as non-disabled or not. Yet, Wendell (2001) notes that the choice of whether to disclose is not always her own because, often, onlookers in society attribute their own assumptions that she is non-disabled because she is invisibly disabled and they disregard the possibility of disability altogether. Samuels (2003) also makes a link to the emotional labour in navigating social interactions when she notes that invisibly disabled women are sometimes in the unique position of not fitting into either community (disabled and non-disabled) and how this affects their lives and their personal identities. Mainstream notions of disability are permeated by a need for visible differences in order to attach meaning to disability; to proclaim what disability is and who is disabled based on those visible differences (Kafer, 2013; Samuels, 2003). Kafer (2013), a visibly disabled woman, demonstrates how disability is tied to visibility when she refers to her body as being the site where her disability is written. This creates an issue for invisibly disabled women who want to be a part of the conversation around disability and sexuality. Society often thinks an invisibly disabled woman is "faking it" and this societal lack of belief was supported by some of the 130 women in this research. Yet, the existence of invisible disability effectively exposes and interrogates the limitations and biases of a dominant social narrative of disability and normalization (Samuels, 2003). This is one area where the balance, which Wendell (1996) and Kafer (2013) call for with regard to disability, can begin to grow in resistance to dominant social understandings. Again, a way to make moves toward this end is to highlight the voices of all disabled women, both visibly and invisibly disabled. This inclusivity offers valuable perspectives of disability and of life in general (Kafer, 2013; Samuels, 2003; Wendell, 2001). As stated in Chapter Two, Linton (1998a) posits that disability is a prism through which to view all human existence. Disability perspectives deepen understandings of all other subject positions. This inclusivity is crucial to feminist critical disability studies conversations overall (Garland-Thomson, 2005a; 2005b; Kafer, 2013; Linton, 1998a; Samuels, 2003; Wendell, 2001). 5.3 Emotional Labour Emotional labour, or hidden labour (Scully, 2010), was a concept rampant throughout the women’s stories. It is also a concept prevalent in both theoretical and empirical literature in the area of disability and sexuality (Liddiard, 2014; Linton, 2007; Scully, 2010; Wendell, 2001; Zitzelsberger, 2005). I note that while the emotional labour involved in disabled women's lives is complex and diverse, it does not discriminate between visible and invisible disabilities; it was present and significant in all of the women's stories in this research. This emotional labour resulted from the productive power of both ableism and sexism, often times in ways that would make claiming one discourse over another impossible. This underscores the importance of intersectional perspectives around disabled women's experiences and the women’s narratives supported this claim. Disabled women are pressured to perform their emotions a certain way (Linton, 2007). This encompasses both the external ableist and sexist pressures disabled women 131 face as well as the internalization of ableism and sexism some disabled women experience as a result of oppressive discourses prevalent in mainstream society. These claims are supported by the experiences the women in this research shared. Samuels (2003) describes emotional labour as "negotiating assumptions about bodily appearance and function" (p. 239). When the women I partnered with spoke about emotional labour in their sexual lives, it was often spoken about as a negotiation whereby their own pleasure and desires were disregarded. The women spoke about having to explain themselves and often being faced with disbelief and/or disregard of their impairments and needs in sexual encounters. They spoke about feeling the need to put others' needs before their own in sexual interactions and they mentioned, sometimes, feeling as though they had to push through sexual experiences that were unpleasant in order to please their partners. Similarly, the participants in Zitzelsberger’s study (2005) spoke about feeling a responsibility for others' emotions and reactions to their disabilities and they also felt the need to explain themselves, make excuses, or prove themselves - all of which affected their self-esteem and sense of themselves as sexual. Relatedly, Esmail, Munro, and Gibson’s (2007) participants spoke about faking their sexual satisfaction in efforts to spare their partners' feelings or make sure their partners' needs were met despite their own needs being disregarded. The women I partnered with sometimes spoke in ways that signified an internalization of ableist and sexist social narratives when they mentioned the personal influence on their sexual lives in the form of lowered self-esteem and lack of confidence. This links to the internalization of oppressive narratives that can cause women to feel like they have to "make up" for their disability, which was discussed by participants in a study done by Liddiard (2014). Liddiard also noted women who spoke about sacrificing their own pleasure and making attempts to hide their 132 impairments from sexual partners when possible. These studies demonstrate how disabled women might, at times, see their disability as a personal fault or flaw. One of the women I partnered with reflected this when she spoke about her hesitancy to disclose her disability to sexual partners, and all of the women I partnered with talked about having sacrificed their own pleasure at different points in their lives. Finally, Wendell (2001) speaks about the blame and responsibility that surrounds disabled women, along with the shame and invalidation they experience emotionally. There is a personal cost of this emotional labour to disabled women and there is a disproportionate management in their relationships with non-disabled partners (Scully, 2010). Scully states that there is often no choice (other than discrimination) but to take on this labour and that this threatens disabled women's autonomy and self-determination. This is an unfortunate situation and the effects of this emotional labour are real. A need for more balanced social interactions informed by more understanding social narratives is long overdue. 5.4 Resistance Discourses are productive influences on social understanding, but are also only created through the group agreements that underlie their structure (Burr, 2014; Gergen, 2015). Discourses act. They create understanding, yet are created understandings themselves. They change shape. They are not static. They only hold their form and position in society if that form and position goes uncontested and, thereby, supported by that society's dominant centres (Burr, 2014; Gergen, 2015). These centres are often limited representations of a wider, intersectional population and, therefore, often hold biased, self-serving, exclusionary perspectives that do not make space for much understanding outside of a narrow generalization of personal experience or concern. However, the fact that discourses are not static means that they are subject to shifts in 133 both their construction as well as their position within society. Previously upheld narratives can fall, and previously disregarded or repressed narratives can rise. This is where resistance comes in. Narratives of resistance are important because they push at the boundaries of mainstream understandings of disability and sexuality in efforts to crack open those narrow assumptions and offer new, more accurate representations of disabled women's sexual lives. Further, critical disability studies from a feminist perspective is a fitting lens to apply in unison because critical disability studies "have developed theories that are in concert with contemporary lives, the complexities of alienation and rich hopes of resistance" (Goodley, 2013, p. 641). Resistance to and internalization of oppression are not mutually exclusive: those who resist are also, in many cases, carriers of internalized oppression and feel the effects of that. The women in my research are a testament to this with stories and experiences that reflect a multitude of influences. I argue that the pressures of oppressive discourses like ableism and sexism led to the women's adoption of resistance discourses in the narratives they shared. Harmful narratives, like ableism and sexism, that attempt to dictate disabled women's sexuality in particular ways, were not reflective of the women's realities. The women favoured more inclusive understandings of the complex, diverse, and intersectional perspectives of what it means to be a sexual, disabled woman. Resistance is important to highlight for many reasons. It was present across all of the women's stories and it played a significant role in informing their sexual subjectivity in positive ways. It worked in complex ways and through different mediums, but as ableism and sexism oppressed the women, resistance empowered them. It was delightful to see the liberation and solidarity among the women in this research despite the oppressive discourses they'd had to contend with throughout their lives. It fosters new ways of thinking about disability and sexuality 134 and it is important to continue to foster these powerful, positive perspectives that are often overlooked. Discourses of resistance were also present in some empirical research. For example, Sahay and colleagues (2012) included women participants who challenged narratives that describe disability as tragic and portray disabled women as inherently non-sexual. The women in their research spoke out about their needs and wants for sex as being an important part of their well-being. Similarly, Parker and Yau (2012) found that the women in their study claimed their sexual rights and supported sexual exploration. The women in Parker and Yau’s research focused more on sex-positive influences and tried to disregard oppressive narratives as much as possible. The women I partnered with spoke in ways that align with these studies as they felt their self-confidence rising during and after points in their lives when resistance was an influence for them. Relatedly, Zitzelsberger (2005) stated that the women in her research found it easier to resist oppressive discourses after exposure to alternate discourses of empowerment. The women I partnered with spoke about feeling a positive shift in their sense of self as sexual after they had been exposed to more inclusive and empowering influences around the topic of disability and sexuality. This underscores the importance of getting resistance narratives out there for other disabled women to draw from, and for society as a whole to broaden its knowledge base of what disability and sexuality means. As Garland-Thomson (2012) states, the status of being non-disabled is contingent; inclusive personal experience narratives around disability and sexuality serve everyone from those who are disabled or love someone who is disabled, to those who may one day become disabled. Allowing for the full inclusion and accurate representation of disabled women's voices and experiences is a way to open up the parameters of wider social 135 understandings of the body and of disability and sexuality that can serve everyone, not just disabled women (Shildrick, 2007). In a related way, Kafer (2013) speaks about the resistance she has witnessed, and been a part of, within the disability community in efforts to challenge the oppressive discourses that often prevail: resistance is present and it is fierce in its honest portrayal of disabled voices reclaiming their rights to social justice. Kafer (2013) highlights the contestable nature of disability and the transformative possibilities in understanding it. Discourses of resistance link to the importance of re-thinking or re-imagining disability so that it is not hidden, silenced, shamed, and Othered. More space made for resistance discourses is the way to achieve this goal of a more inclusive understanding of disability and sexuality. Highlighting and centering disabled women's voices about the topic of sexuality is a means to foster a social shift toward more intersectional, inclusive, just, and accurate ways of thinking about disability and sexuality (Garland-Thomson, 1997; Linton, 2007; Mingus, 2011). Resistance discourses help to oppose social subjection by reclaiming authorship of personal experiences in relation to sexual subjectivity and in the interest of disabled women's rights to sexual citizenship. 5.5 Methodological, Policy, and Practice Contributions The findings of this research bring to light new, complex, and diverse perspectives around disability and sexuality from the personal experiences of disabled women. These perspectives can be applied in the form of adding to what I hope becomes a robust field of study. This work is in keeping with an intersectional perspective and a disability inclusive, disability justice focused aim that seeks to highlight oppressed voices. The hope here is to balance the scales of privilege and to broaden the social narratives around disability and sexuality in the interest of rights to sexual citizenship for disabled women. 136 Most of the women in this research acquired their disabilities later in life, but given the contingent state of a non-disabled form and the overlooked value of disabled perspectives when it comes to sexuality, I believe disability should be included in sex education policies in a meaningful way. There needs to be more inclusive consideration and less ableist and sexist pressures in relation to a disabled woman's role in sex and her rights to sexual pleasure. All of the women in this research stated that the sex education they received throughout their lives was sorely lacking in many regards and a call for changes to sex education curriculum is not something new. Meaningful follow-through on this call to action is certainly long overdue. By being Othered, the oppressed margins of society are constantly being measured against constructed ideals set by a privileged few, whereas the dominant, privileged centre tends to go unquestioned and unchallenged. This is what needs to change. This is the work that critical theories seek to accomplish. Critical theories seek to call out and shed light on both the intentional and the ignorant in efforts to interrogate unbalanced social positions and the discriminatory social perceptions held toward those outside of privileged positions. This is also the work of resistance. Critical theories, like the feminist and disability studies positions I am coming from, are resistance in theoretical form. The women in my research have provided examples of resistance in the form of lived experience. This thesis is a union of the two in efforts to create and shape meaningful praxis. I believe this to be a methodological contribution toward goals in informing future social perceptions about disability and sexuality, which would then inform how it is seen and addressed by society. Following from this, social constructionist and poststructuralist thought does work to highlight what discourses are privileged, what discourses are not, and what the consequences of those arrangements are, in this case, for disabled women's sexual citizenship. These theoretical 137 inclinations are action toward social justice in the work they do to expose and interrogate power differentials and discrepancies. The exposure of the productive quality and power of language and how that process functions to maintain and be maintained by the dominant centres of society is integral work for social change and social justice. Social work is a social justice-oriented profession, and it values the holistic, intersectional nature of an individual's life and experiences. It also values the protection of rights, which includes sexual citizenship. These social work values apply to both social work research and practice. My ethical commitment to participatory, emancipatory, transformative partnerships with the women in this research, and the methodological approach I have applied in this thesis, contributes to the overall mandate of social work praxis. A social worker informed by this research and other research like it can act as a support, ally, and advocate for change aimed toward disability justice and sexual citizenship for disabled women. 5.6 Limitations This research is not generalizable given the qualitative methods used and the number of participants. There were five women that took part in this research. However, it was never my intention for this work to be generalizable and I do not believe that generalizability is important or necessary to qualitative research (Richards & Morse, 2013). I wanted to highlight the personal experiences of disabled women on the topic of sexuality to convey experiences that are too often overlooked in society. These stories are rich and complex. Even though they shared themes, they are unique and valuable in that uniqueness. The women in this research ranged in age from 35-64. This left out representation of women from younger ages. This could have affected the data and could have specifically affected the point-in-time when resistance might have become an influence in their lives as 138 younger women might have had more regular exposure to globalized mediums that are part of carrying that influence. Further, I chose to focus solely on disabled women for this research. I chose this for a few reasons. First, I identify as a woman and so there were personal interests in the work. I also recognize my contingent state as non-disabled, which furthers my interest in the work. Second, I felt that disabled women were in a unique social position of being subject to compounded oppressions that would make their stories interesting and incredibly valuable in a world that has not previously made much space for them. Third, I saw the gaps in the literature with respect to disabled women's perspectives on sexuality that highlighted their personal experiences of oppression, and their desires, needs, and rights when it came to sex. There was a clear need to address this. Fourth, I recognized the complexity of disability in relation to sexuality and the complexity of looking at the productive power of discourses. Further complicating this by adding perspectives and theorization with respect to men was not practical for a master's thesis, although I do see value in it. 5.7 Recommendations for Future Research I recommend that future research in this area stay in keeping with the emancipatory and transformative ethical commitments adhered to in this research, and to remain cognizant of the need for intersectional perspectives when working with disabled women (or any population). I would like to see further research conducted in partnership with disabled women that focuses on personal experiences related to sexual well-being in order to broaden the spectrum of experiences and perspectives that are socially available in an effort to then inform and broaden the mainstream social scripts around disability and sexuality. 139 5.8 Conclusion The findings of this research demonstrate that discourses had an effect on the sexual lives of the disabled women in this research in terms of their subjective understanding of themselves as sexual beings. Oppressive discourses like ableism and sexism constrain and proscribe the sexual rights of disabled women. That said, the powerful presence of resistance discourses that rail against oppressive discourses in the form of empowerment and liberation has been shown to counter and mitigate the oppressive effects of ableism and sexism. Sex is a significant part of human existence. 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Driedger (Eds.), Living the edges: A disabled women's reader, 9-15. Toronto, CA: Inanna Publications. Titchkosky, T. (2011). The question of access: Disability, space, meaning. Toronto: University of Toronto Press. Trace, K. (2014). Hot, Wet, and Shaking: How I Learned to Talk about Sex. Halifax & Toronto, CA: Invisible Publishing. Webster, L. (2017, August 3). The politics of being me. Retrieved from https://www.buzzfeed.com/lucywebster/how-feminism-informed-my-identity-as-a-disabled-woman?utm_term=.xj24Ln8vA#.ba6V98E1n Wendell, S. (1989). Toward a feminist theory of disability. Hypatia, 4(2), 104. Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability. New York, NY: Routledge. 147 Wendell, S. (2001). Unhealthy disabled: Treating chronic illnesses as disabilities. Hypatia, 16(4), 17-33. doi:10.1111/j.1527-2001.2001.tb00751.x Wendell, S. (2010). Feminism, disability and transcendence of the body. In D. Driedger (Eds.), Living the edges: A disabled women's reader. 55-69. Toronto, CA: Inanna Publications. Wiegerink, D., Roebroeck, M., Bender, J., Stam, H., Cohen-Kettenis, P., Transition Res Grp SW Netherlands, & Transition Research Group South West Netherlands. (2011). Sexuality of young adults with cerebral palsy: Experienced limitations and needs. Sexuality and Disability, 29(2), 119-128. doi:10.1007/s11195-010-9180-6 Wilkerson, A. (2002). Disability, sex radicalism, and political agency. NWSA Journal, 14(3), 33-57. doi:10.1353/nwsa.2003.0018 Wood, L. A., & Kroger, R. O. (2000). Doing discourse analysis: Methods for studying action in talk and text. Thousand Oaks, CA: Sage Publications. Zitzelsberger, H. (2005). (in)visibility: Accounts of embodiment of women with physical disabilities and differences. Disability & Society, 20(4), 389-403. doi:10.1080/09687590500086492 148 Appendices APPENDIX A: Recruitment Letter Title of Research Project: Let's Talk About Sex: A Narrative Approach to Disabled Women's Sexual Lives Principle Investigator/Supervisor: Dr. Rachelle Hole, Associate Professor, Faculty of Health and Social Development, University of British Columbia - Okanagan. Email: rachelle.hole@ubc.ca Phone: 250-807-8741 Co-Investigator: Tanya MacKeigan, Masters of Social Work Thesis Student, University of British Columbia - Okanagan. Email: tanya.mackeigan@gmail.com Phone: 902-322-0408 Purpose of the Study: The purpose of this study is to examine the narratives/stories that disabled women tell about their sexual lives and sexual expression in an attempt to uncover the social influences that shape those narratives. The research question for this work is as follows: Informed by social constructionism and a feminist, critical disability studies theoretical lens, what are the discourses that shape disabled women's narratives of sexuality and their sexual lives? This research is part of the Masters of Social Work program at the University of British Columbia - Okanagan. Background: The sexual lives of disabled women have generally been ignored in our society. Sex and disability are rarely talked about. A medical perception of sex and disability pervades our culture and results in biased and unhelpful stereotypes being attached to disabled women. Sexual "function" takes the place of creative sexual expression and sexual pleasure. Sexual expression and sexual citizenship are human rights, and should be treated as such for disabled women. Procedure: I would like to hold an opening focus group with all participants, as well as an individual interview with each participant. I am looking for approximately 5 women who identify as being physically disabled/having a physically disability. The focus group and interviews will take place at a convenient time for participants and locations can be determined based on consideration of participants' preference and comfort. If participants are unable to meet in person for any reason, phone interviews or interviews via UBC Collaboration Suite technology can be arranged. The nature of the questions will aim to draw out personal stories around the sexual lives of participants. Topics will include sexuality, sexual identity, and sexual expression. With consent, the focus group and interviews will be audio recorded for transcription and analysis purposes. I am hoping for the focus group to run 1.5 hrs and each individual interview to run 1 hr. Participants may come forward after the focus group has taken place and only take part in the individual interview portion of this study. The goal is to get the most robust 149 data for this study. It is not a requirement that all participants must have been in the focus group in order to provide individual interview data. After data collection is completed and preliminary findings are determined, participants will be invited to voluntarily attend a group discussion on the findings to offer feedback on what the findings reflect and if it is satisfactory to participants. This group discussion is not a requirement of the research for participants. Technology can be arranged for participants who cannot come in person to join in this discussion if they choose to. Participants who agree to this research partnership will be asked to sign a consent form. Risks and Benefits: Risks are limited in this study. However, the topic of sex can entail the possibility to trigger someone depending on their individual experiences. The questions will be open-ended and the interviews will be guided by the participant with minimal prompts from myself. Participants will not be pressured to share anything they are uncomfortable with. A copy of the individual interview guide will be provided with the consent form. Contacts for local counselling services will be provided as well, should participants feel the need to debrief with a professional counsellor. There are possible benefits to this research as well. Some participants may find the opportunity to share their story empowering. This research may also lead to social awareness and social change by highlighting an area of disability rights that is rarely focused on. Ultimately, the participants will determine the significance of this research as it is hoped that the research will be emancipatory and transformative in nature. Voluntary Participation and Confidentiality: Participation is voluntary. Participants may ask me not to use the audio recorder and/or take notes. You may refuse to answer any question. You may withdraw from the study at any point. All information will be kept confidential except when professional codes of ethics or the law requires reporting. I will keep all materials in an encrypted file on a password protected computer system that will only be accessible to research team members. Only my supervisor and masters committee members will have access to the data. Pseudonyms are encouraged to be used by participants, but nothing identifying will be included in the final writing process without consent. Future use of Data and Study Results: I may present findings from this study at conferences or presentations. I may also publish some or all of these findings academically. Names and identifying information will not appear. Participants may help determine future use of the data as well. Upon completion of this study, participants will receive a summary of the results if they are interested. I also plan to consult participants on the dissemination process for this research. I would like to hear the ideas and feedback participants might have for the best use and distribution method(s) of the data. If you agree to take part in this study, or would like any further information, please contact me, Tanya MacKeigan, at 902-322-0408, or by email at tanya.mackeigan@gmail.com Thank you for your time! 150 APPENDIX B: Information and Consent Form INFORMATION AND CONSENT FORM Title of Research Project: Let's Talk About Sex: A Narrative Approach to Disabled Women's Sexual Lives Principle Investigator/Supervisor: Dr. Rachelle Hole, Associate Professor, Faculty of Health and Social Development, University of British Columbia - Okanagan. Email: rachelle.hole@ubc.ca Phone: 250-807-8741 Co-Investigator: Tanya MacKeigan, Masters of Social Work Thesis Student, University of British Columbia - Okanagan. Email: tanya.mackeigan@gmail.com Phone: 902-322-0408 Study Information and Purpose: The purpose of this study is to examine the narratives/stories that disabled women tell about their sexual lives and sexual expression in an attempt to uncover the social influences that shape those narratives. The research question for this work is as follows: Informed by social constructionism and a feminist, critical disability studies theoretical lens, what are the discourses that shape disabled women's narratives of sexuality and their sexual lives? The sexual lives of disabled women have generally been ignored in our society. Sex and disability are rarely talked about. A medical perception of sex and disability pervades our culture and results in biased and unhelpful stereotypes being attached to disabled women. Sexual "function" takes the place of creative sexual expression and sexual pleasure. Sexual expression and sexual citizenship are human rights, and should be treated as such for disabled women. This research is a thesis that is part of the Masters of Social Work program at the University of British Columbia - Okanagan. Theses are considered public documents and will be available on the Internet via cIRcle, which is a UBC affiliated online forum that houses all UBC theses/dissertations. Who Can Participate? To participate in this research study you must identify as a woman, and as having a physical disability or being physically disabled. What Does the Study Involve? An opening focus group will be held with all participants, as well as an individual interview with each participant. Approximately 5 women will be part of this study. Notes may be taken during these interactions. 151 The focus group and interviews will take place at a convenient time for you and locations can be determined based on consideration of your preference and comfort. If you are unable to meet in person for any reason, phone interviews or interviews via UBC Collaboration Suite technology can be arranged. With consent, the focus group and interviews will be audio recorded for transcription and analysis purposes. The focus group will run approximately 1.5 hrs and each individual interview will run approximately 1 hr. If the focus group has already taken place it is still possible to take part in the individual interview portion of this research. The nature of the questions will aim to draw out personal stories about the sexual lives of participants. Topics will include sexuality, sexual identity, and sexual expression. After data collection is completed and preliminary findings are determined, participants will be invited to voluntarily attend a group discussion on the findings to offer feedback on what the findings reflect and if it is satisfactory to participants. This group discussion is not a requirement of the research for participants. Technology can be arranged for participants who cannot attend in person to join the discussion if they choose to. Benefits and Risks: Risks are limited in this study. However, the topic of sex can entail the possibility to trigger you depending on your individual experiences. The questions will be open-ended and the interviews will be guided by you, with minimal prompts. A copy of the individual interview guide is attached to this consent form. You will not be pressured to share anything that you are uncomfortable with. You may stop at any time should you feel uncomfortable. Contacts for local counselling services will be provided as well, should you feel the need to debrief with a professional counsellor. There is a risk to confidentiality and anonymity within the focus group setting. All participants are encouraged to refrain from disclosing the contents of the focus group in discussions outside of the research setting; however, we cannot control what other participants do with the information discussed. This risk does not apply to you if you do not take part in the focus group. There are possible benefits to this research as well. You may find the opportunity to share your story empowering. This research can also lead to social awareness and social change by highlighting an area of disability rights that is rarely focused on. Ultimately, you, the participant, will determine the significance of this research as it is hoped that the research will be emancipatory and transformative in nature. Confidentiality: All information will be kept confidential except when professional codes of ethics or the law requires reporting. For example, mention of child abuse or exploitation of minors will require reporting, as well as information that may lead me to believe that anyone is at risk of any imminent danger. In addition, the collective nature of focus groups poses a challenge with respect to group confidentiality and anonymity. Insights and experiences may be discussed amongst the group in exploration of the topics. I will keep all materials in an encrypted file on a password protected computer system that is only accessible to the research team. Only research team members will have access to the data. 152 You may use a pseudonym during interviewing, but nothing identifying will be included in the final writing process of this thesis. It is anticipated that results from the study will be used to guide future research in this area. Findings from this study may be presented at conferences or presentations. There may also be academic publications of some or all of these findings. Again, names and identifying information will not appear. If you would like a report of the findings please include your email address in the space provided at the bottom of this form. You may be consulted on the dissemination process for this research. Your ideas and feedback on the best distribution method(s) of the data is important. Contact for information about the study: If you have any questions or concerns, or you would like further information about the study, you may contact me, Tanya MacKeigan, at 902-322-0408 or tanya.mackeigan@gmail.com. You may also contact my supervisor, Dr. Rachelle Hole, at 250-807-8741 or rachelle.hole@ubc.ca. Contact for concerns about the rights of research subjects: If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the Research Participant Complaint Line in the UBC Office of Research Services at 1-877-822-8598 or the UBC Okanagan Research Services Office at 250-807-8832. It is also possible to contact the Research Participant Complaint Line by email (RSIL@ors.ubc.ca). Consent: Your participation in this study is entirely voluntary and you may refuse to participate. You may also choose to withdraw your consent at any time during the course of this study without consequence. If you choose to withdraw your consent after data collection has taken place, your individual interview data will not be included in the research and will be disposed of. However, given the collective nature of focus group data collection methods and the inability to identify individual speakers, the information you share during the focus group (should you take part in it) will not be able to be removed and will be included in the analysis of the data. Findings from this research will be presented in aggregate form; as such, participants will not be individually identified and no identifying information will be used in the reporting of these findings. Your identity will remain confidential in the reporting of the findings. You will be provided with a copy of your signed consent form. Your signature below indicates that you have read and understand the details listed above. Your signature indicates that you consent to take part in the opening focus group and the individual interview. If the focus group has been conducted already, your signature indicates that you consent to take part in the individual interview portion of this study. 153 Your signature indicates that you consent to participate in this study. Please indicate that you do or do not consent to be audio recorded by checking one of the boxes below. Consent to audio recording: YES NO _____________________________________ _________________________ Participant Name (Printed) Preferred Pseudonym _______________________________________ _________________________ Participant Signature Date ____________________________________________________ Email Address (For Sending Study Results - Optional) Thank you for your time and interest! 154 APPENDIX C: Focus Group and Narrative Interview Guide The following focus group and narrative interview guide was developed in consultation with an advisory group formed through Independent Living Vernon. This advisory group assisted with the best approach to the focus group as well as the best types of questions for the individual interview process and the best order in which to ask them. The narrative process will be guided by participants, with particular attention paid to the story-teller's voice. Participants will determine what is salient and significant with respect to their story. The interviewer will prompt at times, or ask for clarification along the way, and gently guide participants if a strong divergence from the topic occurs. Some prompting or clarification might include such phrasing as, "what happened then", "what else do you remember being significant about that", "can you tell me more about that", or "can you explain a little further what you meant when you said…". I anticipate my role as interviewer to be one rooted in active listening and validation. Prompts will also depend on the context of what is being shared at particular moments. Of particular importance for the focus group and individual interviews are the elements of confidentiality, safety, validation, and respect. Regular check-ins along the way will be done to ensure that participants are feeling safe and comfortable. Supportive contacts will be made available for participants to use who may experience a trigger. Safety is of central focus here and an acknowledgement of possible trauma will be considered throughout the process of both the focus group and the individual interviews. Focus Group Guide:  Introductions/rapport building  Go over ground rules - ask group what their expectations are and what a group agreement might be for the focus group. For example, respect and validation for all who choose to share as well as space made for those who choose to share to do so. This activity will, hopefully, help to further feelings of comfort within the group setting.  There will be a general exploration of the topic together that allows for participants to determine what the most salient points are to highlight.  Starting question to spark discussion that will evolve from there: "What does sexuality mean to you?"  Depending on discussion, we may flesh out any number of things with respect to this question. 155 Narrative Interview Guide: Questions will spark the process of getting into the topic and allow for the narrative to emerge from the perspective of points in time in one's life-course. The narrative should play-out as a story with a beginning, middle, and conclusion. Questions are framed starting from an early time and moving throughout the life-course. 1. When did you first identify as physically disabled/having a physical disability? a. What was that time like for you? b. What are some experiences that stand out for you from that time that made an impact on you? 2. Do you consider yourself "sexual"? a. What role does sexuality play in your life? 3. How have you learned about sexuality: i.e., through media (films, TV shows), sexual health discourses, high school, cultural or faith-based beliefs, pornography, disability activism information, etc.? a. When did you learn about sex/sexuality? Was it after identifying as physically disabled/having a physical disability or prior to that? 4. Can you tell me what your early sexual experiences were as a disabled woman/woman with a disability? a. What was significant about those experiences? b. Can you tell me how you felt about yourself as a sexual person at that time? 5. How have your sexual experiences changed over time? a. What has been significant about these changes? b. How would you describe your sexual experiences or your sense of yourself as sexual now? 6. What do you find most empowering about your sexuality and sexual experiences? 156 APPENDIX D: Support & Referral Contact Sheet Provincial Contacts: Organization Description Contact Information Independent Living Vernon Independent Living Vernon (ILV) is a resource centre that assists people with disabilities in providing social support and information referral. Access to ILV is free and this resource can help with further referral processes if needed. ILV promotes and encourages an attitude of self direction in consumers so they can negotiate and access the community services and resources they require in order to participate as equal citizens in their community. Independent Living Vernon has a mission to create sustainable community links, to work for societal change, and to remove barriers so that people with disabilities have the opportunity to realize their full potential. Independent Living Vernon now has a texting option for anyone who would like information about our services or would like to book an appointment with one of our social workers! If you need any assistance feel free to text 778-212-4375, all information provided on text is kept confidential. This information can be found at http://www.ilvernon.ca/index.php?section=1 Independent Living Vernon 3402 27th Avenue, Suite 107 Vernon, BC V1T 1S1 TELEPHONE (250) 545-9292 FAX (250) 545-9226 Toll-Free 1-877-288-1088 Text 778-212-4375 Email - info@ilvernon.ca Our hours of operation are: Monday - Thursday 8:30 am - 4:00 pm *closed between 12:00 pm and 12:30 pm for lunch* Family Resource Centre Society for the North Okanagan - Vernon, BC The Family Resource Centre Society for the North Okanagan promotes and supports the well being of individuals and families in all their diversity. The Family Resource Centre Society believes that: The wealth of the community is reflected in the health, happiness, and security of each individual and family. A safe and welcoming atmosphere allows service users to comfortably explore opportunities for personal growth through counselling, groups, education and support. The majority of services are by self-referral. Some services are free, and some are offered through a sliding fee scale according to household income. The ability to pay fees is strictly confidential and is never a barrier to receiving services. Fees may be waived if they pose a hardship for services users. This information can be found at http://vernonfrc.ca/? Family Resource Centre Society for the North Okanagan # 201 – 3402 27th Avenue Vernon, B.C. V1T 1S1 250-545-3390 info@vernonfrc.ca Hours Monday – Friday 9:00 am – 4:30 pm * * daily lunch closure 12:00 – 1:00 pm* 157 Vernon Women's Transition House Society The Vernon Women's Transition House offers free, accessible, and confidential counselling services to women who have experienced violence or abuse. They work to assist women in their healing with support, awareness, and education. The counselling services available focus on the needs of the woman. The safety of women and their children is always paramount. Services offered include: Confidential individual and/or group counselling services to women based on the needs of women A safe environment to look at personal safety, feelings, and the effects of abuse Support, information and encouragement to help women discover their strengths Referral services to other support agencies that will help women in their recovery process This information can be found at http://vwts.ca/ Vernon Women’s Transition House Society Location of home kept confidential There is a general inquiries page that can be found at http://vwts.ca/contact/ In an emergency, call 911 or the Transition House at any time at 250-542-1122 Disability Alliance BC - Lower Mainland Contact Since 1977, Disability Alliance BC has been a provincial, cross-disability voice in British Columbia. Their mission is to support people, with all disabilities, to live with dignity, independence and as equal and full participants in the community. They champion issues impacting the lives of people with disabilities through direct services, community partnerships, advocacy, research, and publications. DABC is a proud member of the Council of Canadians with Disabilities (CCD). This contact can also help in further service connection for people with disabilities Disability Alliance BC General Inquiry: Phone: 604-875-0188; Toll Free: 1-800-663-1278 Email: feedback@disabilityalliancebc.org Advocacy Access Program: Phone: 604-872-1278; Toll Free: 1-800-663-1278 Address: #204 – 456 West Broadway, Vancouver BC V5Y 1R3 Office Hours: Monday to Friday 8:30 a.m. – 4:30 p.m. http://disabilityalliancebc.org/ 158 New Westminster UBC Counselling Services - Lower Mainland Contact The New Westminster UBC Counselling Centre is a training facility that is operated jointly by the UBC Counselling Psychology Program and the New Westminster School District (SD 40). The Centre has been providing counselling services to the New Westminster School District, the New Westminster community, and the surrounding lower mainland area since 1975. The mandate of the Centre is to provide high quality counsellor education to students in the Master’s and Doctoral programs in Counselling Psychology and to provide effective counselling services to the public. All counsellor trainees receive direct supervision from university faculty. The New Westminster UBC Counselling Centre provides free counselling for adults, children, and youth from September to June. Day and evening appointments are available. All counselling is provided by students in the UBC Master’s and Doctoral programs in Counselling Psychology. New Westminster UBC Counselling Services To find out about services or to make an appointment, please contact: Phone: 604.525.6651 Address: 821 – 8th Street, New Westminster, BC V3M 3S9 (at New Westminster Secondary School) http://ecps.educ.ubc.ca/counselling-centres/new-westminster-ubc-counselling-centre/ Burnaby Counselling Group - Lower Mainland Contact The Burnaby Counselling Group is passionate about building and rebuilding lives. The team of diverse and professionally trained therapists offers a wide range of confidential counseling services for individuals, couples, children, and families. For 35 years they've been strengthening relationships and facilitating the emotional, mental and spiritual development of service users. Together, the team of therapists has over 80 years of counselling experience and is committed to providing the highest quality of professional care to service users. In partnership with donors, they also provide subsidized services to those in need. Burnaby Counselling Group does not discriminate on the basis of age, ethnicity, gender, national origin, disability, race, size, religion, sexual orientation, or socioeconomic background. Burnaby Counselling Group Address: Suite 230 Boundary View Plaza 3701 Hastings Street Burnaby, BC V5C 2H6 Hours: (subject to change without notice) Mon: 9:00 am - 5:00 pm Tues-Wed-Th: 9:00 am - 9:00 pm Fri: 9:00 am - 1:00 pm If you are not scheduled for an appointment and would like to come by in-person, please contact our front desk staff for confirmation prior to coming. Phone: 604.430.1303 General Inquiries can be done through website: http://counsellinggroup.org/contact-us/ Booking an appointment: bookings@counsellinggroup.org http://counsellinggroup.org/
Thesis/Dissertation
eng
Social Work
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Let's talk about sex : a narrative approach to disabled women's sexual lives
Text