Mothers with Disabled Children in Cyprus: Experiences and Support
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Mothers with disabled children in Cyprus: experiences and support ANTIGONI STYLIANOU Institute of Education University of London Thesis submitted in fulfillment of the regulations of the UCL Institute of Education, for the degree of Doctor of Philosophy in Social Science March, 2017 ‗I, Antigoni Stylianou confirm that the work presented in this thesis is my own. Where information has been derived from other sources, I confirm that this has been indicated in the thesis. Word count: 84 070 2 Abstract In a discernibly developed world, where the subject of disability and equal rights for disabled children is strongly discussed, it is expected that inclusive practices and service provision should be developed in smaller societies as well. There is evidence that mothers, and mothers of disabled children in particular, are the main care providers to their children. Lack of evidence for this however, in the context of Cyprus, was the main point of departure for this research. By focusing on mothers with disabled children in Cyprus, this study aimed to gain an understanding of mothers‘ experiences and their perspectives on raising disabled children. An examination of the Cyprus context, its history and relation to disability, have been analysed in an attempt to contextualise the analysis of mothers‘ accounts. Twenty-five mothers shared their personal experiences of their journeys with their disabled children. Data were collected via semi-structured interviews with mothers whose children ranged from the ages of six to twenty-two years. Mothers described their experiences and early feelings, from the time that their children were born, to the time that the mothers became aware of the disability. Mothers were asked to describe the support that they received ‗formally‘, with regards to state support and other public services, as well as the ‗informal support‘ received from family members and friends. In addition the study aimed to establish an understanding of the experiences of stigma that the mothers encountered, and the ways used to manage and cope with stigma. Data were analysed through thematic analysis. The study shows that mothers went through different stages of grief associated with their journeys with their children. Shock, disappointment and lack of trust in doctors and other professionals were the main feelings that characterised the different stages of their journeys. In terms of support, the results highlighted differences between the formal and informal support that they received. Mothers were much less satisfied with formal than informal support. All the mothers experienced stigma by ‗courtesy‘ of having a child with a disability. The study concludes that in Cyprus there is still a huge gap between policy and practice. 3 Acknowledgements ‗As you set out for Ithaca, Hope the voyage is a long one Full of adventure, full of discovery‘ (Cavafy, 1984) Even though the destination might have been Ithaca, the journey was actually more important as the Greek poet emphasised in his poem when he talked about the journey of Odysseus returning back home after the Trojan War that lasted ten years. During the journey to my Ithaca I had beside me my supervisor, Professor Julia Brannen. You were always there to guide me, you were full of patience and incredibly supportive. The fruitful discussions I had with you provided me with valuable help and motivation for the accomplishment of my Thesis. You were much more than just a supervisor. I am so thankful that you accepted me as your PhD student and offered me not only your supervision, but motherly love and care. This huge task would not have been managed without the support of a very special person, my husband Theodoulos. You were always there to remind me of this Ithaca during the times I thought that it was impossible to continue. I deeply appreciate your belief in me, the admiration I could see in your eyes and your unfailing love and understanding. There are no words to convey how much I love you. Her ability to turn everything positive or negative into humour was unbelievable. You knew exactly what I wanted to hear every time I called you for some encouragement, at times when it felt like I was trying to climb a high peak but I couldn‘t. Andria, my beloved sister, you are presented here as you were always there for me; beside me, to make me laugh, to help me find the strength to continue and to keep on challenging my life. For the first time in 31 years I am speechless. Mother… Thank you is not enough for the wisdom, love and support you gave me. You experienced all the stress, excitement, frustration and celebration that characterised this journey. I hope that I will be as good a mother as you are and have always been to me. My best friend Olia. Amazed. Inspired. Grateful… Words can never say how grateful I am to you. I am forever thankful for your friendship and support… both offered to me so unconditionally. You were the person with the ability to make my day, to make me want to give the best of myself! Thank you so much... 4 I am also grateful to those 25 mothers. Though your names remain confidential, this work could not have been undertaken if it were not for you. Your deeply personal and emotional experiences and your lifelong journeys, made this journey pleasant and achievable at the same time. The opportunity I had to hear your stories was a privilege and I feel so lucky for this. I can‘t remember my life without you even though you are younger than me. I have also passed through feelings of anxiety, denial, confusion, anger. After all these negative feelings, proudness is the one that has remained and prevailed. My beloved youngest sister Christina, I know that you won‘t be able to read this, but this work is dedicated to you. Thank you for everything. I love you and I promise that I will be there for you... forever. 5 List of Contents List of Figures ............................................................................................................. 12 List of Tables .............................................................................................................. 13 Chapter 1 – Introduction ............................................................................................. 14 1.1. Background of the Study 14 1.2. Purpose of the study 16 1.3. Theoretical Framework – Overview 17 1.4. Significance of the study 19 1.5. Outline of the Study 21 Chapter 2 - Literature Review ..................................................................................... 22 2.1. Introduction 22 2.2. Motherhood 23 2.2.1. Motherhood Experiences ..................................................... 24 2.2.2. Motherhood discourses, practices and ideologies ................ 26 2.3. Disability 27 2.3.1. The notion of disability ........................................................ 27 2.3.2. Stigma ............................................................................... 32 2.3.2.1. Conceptualising stigma ....................................................... 32 2.3.2.2. Empirical evidence on stigma and disability ........................ 36 2.3.3. Inclusion ............................................................................... 38 2.4. Caring for disabled children 40 2.4.1. Emotional effects on mothers ............................................... 43 2.4.2. Disability and maternal employment ..................................... 46 2.4.3. Childcare and disabled children ........................................... 48 2.4.4. Maternal satisfaction with services for disabled children ....... 49 2.4.5. Marital satisfaction ............................................................... 49 2.4.6. Social support for disabled children ...................................... 50 2.4.7. Parental satisfaction with formal support .............................. 52 6 2.4.8. Parental satisfaction with informal support ........................... 53 2.5. Summary 54 Chapter 3 – Cyprus Context ....................................................................................... 57 3.1. A short history of Cyprus 57 3.2. Statistics and Data 59 3.2.1. Demographic Data ............................................................... 59 3.2.2. Main industries and employment sectors for men and women61 3.2.3. Rurality and Cyprus .............................................................. 61 3.2.4. Data on Disabilities .............................................................. 63 3.3. History of disability in Cyprus 65 3.4. Stigma and disability in Cyprus 70 3.5. Theory of disability in Cyprus, Policy and Legislation 72 3.5.1. Legislation on Disability ........................................................ 72 3.5.2. Integration of Children with Special Needs Act ..................... 74 3.6. Healthcare System in Cyprus 76 3.7. State Services for Disabled Children 77 3.8. Theory vs Practice: A Critical analysis 79 3.9. Conclusion 83 Chapter 4 – Methodology ............................................................................................ 86 4.1. Research Questions 86 4.2. Concepts 86 4.3. Research design 90 4.4. A qualitative approach 92 4.5. Recruiting the sample 95 4.6. The sample and its characteristics 98 4.7. Methods of Data Collection 103 4.7.1. The research interview ....................................................... 103 7 4.7.2. Documentary data about services and schools .................. 105 4.8. Ethical Issues 106 4.9. Data Analysis 108 Chapter 5 – Mothers‘ feelings and learning about their children‘s disabilities: from the child‘s