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An Exploration of Disability and Sexuality Margaret View metadata, citation and similar papers at core.ac.uk brought to you by CORE provided by Concordia University Research Repository “Nobody Is Asking What I Can Do!”: An Exploration of Disability and Sexuality Margaret Campbell A Thesis In the Department Of Sociology and Anthropology Presented in Partial Fulfillment of the Requirements For the Degree of Doctor of Philosophy (Social and Cultural Analysis) at Concordia University Montreal, Quebec, Canada July 2019 © Margaret Campbell, 2019 CONCORDIA UNIVERSITY SCHOOL OF GRADUATE STUDIES This is to certify that the thesis prepared By: Margaret Campbell Entitled: “Nobody Is Asking What I Can Do!”: An Exploration of Disability and Sexuality and submitted in partial fulfillment of the requirements for the degree of: Doctor of Philosophy (Social and Cultural Analysis) complies with the regulations of the University and meets the accepted standards with respect to originality and quality. Signed by the final examining committee: Chair Dr. Prosper Dovonan External Examiner Dr. Jacqueline Low External to Program Dr. Kim Sawchuk Examiner Dr. Marc Lafrance Examiner Dr. David Howes Thesis Supervisor Dr. Anthony Synnott Approved by Dr. Amy Swiffen, Graduate Program Director August, 27th, 2018 Dr. Andre Roy, Dean of Arts and Science ABSTRACT “Nobody Is Asking What I Can Do!”: An Exploration of Disability and Sexuality Margaret Campbell, PhD Concordia University, 2019 This doctoral research explores the various ways in which people with physical disabilities access opportunities for sexual expression and exploration. Through conducting qualitative interviews with twenty-four people with physical disabilities I identify barriers to sexual expression that participants faced and examine how participants negotiated, maintained, and created opportunities for sexual expression in spite of these barriers. The findings of this study show that persons with disabilities continue to encounter alienation, stigmatization, and discrimination, particularly in terms of their sexuality. However, the findings of this study also illustrate the creative ways that disabled people can reject, subvert, and challenge the desexualization that they routinely experience. iii ACKNOWLEDGEMENTS I must first thank the individuals who participated in this research and contributed to this project by sharing their experiences, without these individuals this study would not be possible. To participants who were involved in this research project, thank you for your knowledge, patience, authenticity, and expertise. I would like to thank my supervisor, Dr. Anthony Synnott, for being a constant source of guidance, support, and constructive feedback over the past nine years. You have an uncommon ability to be both approachable and intelligent and there is no man that is more deserving of the description ‘gentleman and a scholar’ than you. Thank you for your valuable feedback, endless supply of patience, unwavering sense of care, and of course, for your wisdom. I would also like to express my sincere gratitude to my second reader, Dr. David Howes. Your feedback and support has been of great value. Working as your teaching assistant was one of the best experiences I had while at Concordia University and your teachings have left a lasting impression on me. Observing how you teach and interact with students has informed the ways in which I teach, and your mentorship has helped to instill confidence in my abilities as an educator. Thank you for being such a kind and supportive mentor. I would like to thank my third reader, Dr. Marc Lafrance, for his time and contributions to this research. Your Master’s level Sociology of the Body seminar helped to inform many of the ideas that I explore in this thesis and was undoubtedly one of the most interesting classes that I have ever taken. Your knowledge of theories of embodiment and sexuality have helped to expand and inform my research interests. Thank you for your insightful comments on my comprehensive exams, thesis proposal, and this dissertation. Your feedback has been of great value to this thesis and I am very thankful for your support. I must recognize that this research would not have been possible without the support and generous financial assistance provided by the Social Sciences and Humanities Research Council of Canada. I would also like to thank Dr. Jacqueline Low and Dr. Kim Sawchuk for agreeing to be on my thesis committee. I greatly appreciate that you two have taken time out of your busy schedules in order to evaluate this thesis. Thank you for your time, effort, and input. Finally, I would like to acknowledge the endless efforts of my family, friends, colleagues, and partner who have all worked to support me throughout this degree. In particular I would like to thank my parents, Vernon and Bertha Campbell. I would also like extend my most heartfelt iv gratitude to my partner Eric Brunsdon and his parents Blake and Mary-Ellen Brunsdon. Thank you ever so much to my colleagues Lesley Lambo, Cheryl MacDonald, Peter Nicoll, and Francine Small, and my three closest friends, Cara Brideau, Jillian Deighan, and Jennifer Colpitts. Throughout the process of writing this dissertation you have all dealt with a daughter/sibling/aunt/partner/friend that was self-involved, stressed, and even more erratic than usual. Thank you for listening to me and for pushing me to believe in myself when I could not. Many of you have made sacrifices in order to help me complete this dissertation and they have not gone unnoticed. To all of you; your belief in me has been key to my success. If it were not for you all, I am sure that I would have given up long ago. Lastly, I need to thank to my Australian shepherd Stella who has guided me throughout this journey and provided endless companionship and love. Jasper, if you are reading this, you are a fantastic cat and I am grateful for the times that you jumped up onto my desk to give me a disapproving look. It usually reminded me to get back to work. v TABLE OF CONTENTS Chapter One – Introduction: Situating Disabled Sexualities Current Issues and Context……………………………………………………………….1 Research Questions and Objectives………………………………………………………7 Note Regarding Terminology……………………………………………………….……9 Overview of Thesis …………………..…………………………………………………..10 Chapter Two – Methodology: Researching the Intersection of Disability and Sexuality Conceptual Framework: Ontology and Epistemology……………………………………11 Reflexivity………………………………………………………………………..……....13 Reflexive Statement Regarding my Standpoint and Relationship with Chronic Illness…20 Participant Recruitment.………………………………………………………………….25 Research Participants…………………………………………………………………….28 Data Collection.…………………………………………………………………………..30 Data Analysis.…...……………………………………………………………………….32 Interview Management…………………………………………………………………..33 Ethical Considerations…………………………………………………………………...35 Chapter Summary………………………………………………………………………..40 Chapter Three – Literature Review: Disabilities and Sexual Expression Origins of the Field.……………………………………………………………………...41 Sexual Expression and Activity.…………………………………………………………47 Barriers to Sexual Expression.…………………………………………………………...51 Concluding Remarks and Suggestions for Future Research.…………………………….58 Chapter Summary………………………………………………………………………...61 Chapter Four - Theorizing Disabled Sexuality: Interactions, Opportunities, and Constraints Introduction and Chapter Overview……………………………………………………...62 Defining and Theorizing Disability.……………………………………………………...63 Theorizing Sex and Sexuality.……………………………………………………………77 Chapter Five - Findings: Answering the Original Research Questions and Identifying Barriers to Opportunities for Sexual Expression Introduction and Chapter Overview………………………………………………….......85 Disabling Contexts……………………………………………………...………………..86 Formal Sex Education…………………………………………………………...87 Informal Sex Education…………………………………………………………..94 Experiences within Medical and Clinical Settings…………………….………..100 Chapter Six - Findings: Answering the Original Research Questions and Identifying Strategies for Sexual Expression Strategies for Sexual Expression………………………………………………………..109 Education…………………………………………………….……….………...109 Subversion…………………………………………………….……….………..119 vi Chapter Seven – Additional Issues: Desexualization, Hypersexualization, and Devotism Managing Desexualizing Assumptions and Hypersexual Advances …………….…….127 Chapter Eight - Conclusion: Additional Findings and Discussion Introduction and Chapter Overview………………………………………….………....137 Summary of Key Findings…………………………………………………….………...138 Limitations…………………………………………………….……….……………….143 Breaking Down the Barriers…………………………………………………….………144 Parting Words………………………………………………….……….……………….147 References…………………………………………………….……….……………………….149 Appendices…………………………………………………….……….………………………185 vii CHAPTER 1 Introduction - Situating Disabled Sexualities “I’ve always assumed that the most urgent Disability civil rights campaigns are the ones we’re currently fighting for – employment, education, housing, transport, etc., etc., and that next to them a subject such as sexuality is almost dispensable. For the first time now I’m beginning to believe that sexuality, the one area above all others to have been ignored, is at the absolute core of what we’re working for…It’s not that one area can ever be achieved alone – they’re all interwoven, but you can’t get closer to the essence of self or more ‘people-living-alongside- people’ than sexuality, can you?” – Liz Crow, European disability rights activist, artist, and author (1991, p. 13). Current Issues and
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