A grounded theory study of family caregivers’ responses to the sexuality of young adults with intellectual disabilities Callista Kanganwiro Kahonde MTSCAL005 Thesis submitted in fulfilment of the requirements for the degree of Doctor of Philosophy (PhD) in Disability Studies Faculty of Health Sciences University of Cape Town University of Cape Town October 2016 Supervisor: Dr Judith Mckenzie Co-supervisor: Dr Nathan Wilson The copyright of this thesis vests in the author. No quotation from it or information derived from it is to be published without full acknowledgement of the source. The thesis is to be used for private study or non- commercial research purposes only. Published by the University of Cape Town (UCT) in terms of the non-exclusive license granted to UCT by the author. University of Cape Town The copyright of this thesis vests in the author. No quotation from it or information derived from it is to be published without full acknowledgement of the source. The thesis is to be used for private study or noncommercial research purposes only. Published by the University of Cape Town (UCT) in terms of the non-exclusive license granted to UCT by the author. i ACKNOWLEDGEMENTS I give praise and honour to my creator, God Almighty, for giving me strength to persevere through my PhD journey, especially during times when I felt like I had lost my map. My heartfelt gratitude goes to my main supervisor, Dr Judith Mckenzie, for her unwavering support and commitment to my work, for going out of her way many times to make herself available when I needed her. I thank my co-supervisor, Dr Nathan Wilson, for his amazing support and for sharing his passion and knowledge of my study area. I am also grateful to Professor Roy McConkey whose mentorship and support gave me invaluable insight throughout my PhD journey. I am grateful to Justine, my husband, friend, life companion and pillar of support, for his loving care and for standing by my side every step of the way, for taking care of our boys during my write up, for believing in me even when I stopped believing in myself and for teaching me to see the world in a ‘different’ way. I thank the family caregivers of young adults with intellectual disabilities and the service providers who participated in my study. Without their generosity with their time and information this study would not have been a success. I also thank the Western Cape Forum for Intellectual Disabilities, the Cape Mental Health and Down Syndrome Western Cape for facilitating my access to the study field. I will be forever grateful to my family, especially my parents, for sowing the seed of resilience and hard work in all their children. I thank my siblings for being my mentors and for cheering me on every step of the way. My awesome boys, Tamiriraishe and Mufaro, I thank them for giving me a reason to wake up and face each day with courage knowing that at the end of it I will come back home to their heart warming smiles. Last but not list I acknowledge and thank The Spirit of 68 Scholarship and the Vera Grover Foundation for funding my study. Without their financial support I would not have made it through this journey. ii DEDICATION I dedicate this thesis to my siblings, Wonder and Kudzai, the love and concern for whom ignited my passion for intellectual disability research and practice. iii ABSTRACT Globally, people with intellectual disabilities are not afforded equal opportunities to express and enjoy their sexuality on par with their peers. Although most of them remain under the lifetime custody of family caregivers for care and support, a knowledge gap exists in understanding the role of the family caregivers in the sexuality issues of people with intellectual disabilities, especially in developing countries like South Africa. The present study is the first of its kind that employed an exploratory, theory generating methodology, the constructivist grounded theory methodology, to seek understanding of how family caregivers in the Western Cape Province of South Africa respond to sexuality of young adults with intellectual disabilities. Data were gathered through in-depth and focus group interviews with 25 family caregivers and further confirmatory interviews with nine service providers of young adults with intellectual disabilities. The study generated a substantive grounded theory, the Theory of Contained Sexuality, to explain the responses of family caregivers to the sexuality of young adults with intellectual disabilities. The study found that the family caregivers’ thoughts, emotions, actions and behaviour towards the sexuality of the young adults with intellectual disabilities are influenced by what the family caregivers see as implications of the young adults’ sexual expression and behaviour on both of them. The family caregivers do not completely suppress or restrain the sexuality of the young adults with intellectual disabilities but they support with ‘containment’, that is they try to confine the sexuality within boundaries that they can control and manage within their lifelong caring role. Ultimately, what the findings of this study point towards is the impact of lifelong family care on realisation of sexual rights by people with intellectual disabilities. Hence, the study concluded that, without the appropriate forms of support and probably alternative forms of care, the human rights framework as embodied within the United Nations Convention on the Rights of Persons with Disabilities and local policies informed by it is insufficient as a tool for sexual emancipation of people with intellectual disabilities. Therefore, a relational moral theory - the ethics of care - is proposed as appropriate to complement the human rights framework in both research and practice around sexuality of people with intellectual disabilities living under family care. The study also highlights the imperative for further studies that iv investigate the impact of lifelong family care on other aspects of the lives of people with intellectual disabilities and promote theorisation of lifelong care within such studies. v TABLE OF CONTENTS ACKNOWLEDGEMENTS ........................................................................................................................... ii DEDICATION………….. .............................................................................................................................. iii ABSTRACT…………… ................................................................................................................................. iv TABLE OF CONTENTS ............................................................................................................................. vi LIST OF FIGURES……… ............................................................................................................................ xii LIST OF TABLES……….. ........................................................................................................................... xiii ACRONYMS……………. .............................................................................................................................xiv CHAPTER ONE: INTRODUCTION AND BACKGROUND TO THE STUDY..................................................... 1 1.0 Introduction .................................................................................................................................. 1 1.1 Study context ................................................................................................................................ 2 1.1.1 Western Cape Province ......................................................................................................... 4 1.1.2 Disability policy in South Africa ............................................................................................ 7 1.2 Problem statement ...................................................................................................................... 8 1.3 Rationale and purpose of the study ............................................................................................ 8 1.5 Research question ........................................................................................................................ 9 1.6 Aim ................................................................................................................................................ 9 1.7 Researcher’s profile...................................................................................................................... 9 1.8 A note on the use of terminology .............................................................................................. 11 1.9 Outline of the thesis ................................................................................................................... 13 CHAPTER TWO: THEORETICAL PERSPECTIVES ...................................................................................... 16 2.0 Introduction ................................................................................................................................ 16 2.1 Perspectives on intellectual disability ....................................................................................... 16 2.1.1 Historical background ......................................................................................................... 16 2.1.2 The social model of disability ............................................................................................. 19 2.1.2 Current understanding of ID in South Africa .....................................................................