AN EXPLORATION OF THE IMPACT OF THE IMAGES THE SPECIAL OLYMPICS PORTRAY OF PEOPLE WITH INTELLECTUAL DISABILITIES ON PUBLIC ATTITUDES TOWARDS THIS MINORITY GROUP Raymond Lynch Dip, BSc (Hons), HDip, MA Faculty of Life and Health Sciences A thesis submitted for the award of Doctor of Philosophy March 2018 I confirm that the word count of this thesis is less than 100,000 words TABLE OF CONTENTS Title Page (i) Table of Contents (ii) Acknowledgements (ix) Abstract (x) List of Abbreviations (xi) CHAPTER 1: Introduction to Research Study: Overview of Societal Approaches to Disability, Social Inclusion and the Special Olympics 1.0 Introduction to Research Study: Overview of Societal Approaches to Disability, Social Inclusion and the Special Olympics 1.1 Introduction 1 1.2 Introductions to Societal Attitudes towards People with Intellectual Disabilities 3 1.2.1 Marginalisation and Exclusion of People with Intellectual Disabilities 4 1.2.2 Introduction to Political and Societal Developments Promoting Inclusion 5 1.2.3 Overview of the Special Olympics 7 1.2.4 The Role of Sport in Promoting Inclusion for people 8 with Disabilities 1.3 Society’s Four Responses to People with Disabilities 10 1.3.1 Response Number One: Survival of the Fittest 11 1.3.2 Response Number Two: Dependency Model/ Medical Model of Disability 13 1.3.3 Response Number Three: Rights Based Model/ Social Model of Disability 17 1.3.4 Response Number Four: Inter-Dependency 22 1.4 Current Irish Political landscape – Disability Policy and Legislation 23 1.5 Defining Social Inclusion as it relates to People with Intellectual Disabilities 27 1.6 Disability Service Systems and Social Inclusion for Persons with Intellectual Disabilities 28 ii 1.7 Introduction to Disability Sport, the Special Olympics and Social Inclusion 30 1.8 Conclusion 35 CHAPTER 2: History of Political, Social and Medical Responses to People with Disabilities 2.0 History of Political, Social and Medical Responses to People with disabilities 2.1 Introduction 37 2.2 Developments in Disability Related Social Policy and Services for People with Disabilities -1800’s to 1900’s 38 2.2.1 Historical Legislative and Societal Developments impacting on People with Intellectual Disabilities 40 2.2.2 The Lunacy Regulation (Ireland) Act 1871 42 2.2.3 The Medical Model of Disability 43 2.2.4 The Social Model of Disability 46 2.2.5 The United Nations (UN) Convention on the Rights of Persons with Disabilities 48 2.2.6 Current Status of the UNCRPD in Ireland 50 2.3 Disability Legislative Reform Ireland: 1990’s Onwards 51 2.3.1 The Employment Equality Acts 1998 – 2011 51 2.3.2 The Education Act 2000 & Education for Persons with Special Educational Needs Act, 2004 54 2.3.3 The Equal Status Act 2000 – 2015 57 2.3.4 Other Important Equality Based Legislation 58 2.3.5 The Disability Act 2005 59 2.3.6 The Citizens Information Act 2007 61 2.3.7 The Health Act 2007 61 2.3.8 The Assisted Decision Making (Capacity) Act 2015 63 2.4 Irish Disability Landscape Today 64 2.5 Conclusion 68 iii CHAPTER 3: SPORT AND DISABILTY 3.0 Sport and Disability 3.1 Introduction 70 3.2 The Modern Olympic Games – Origins and Developments 71 3.2.1 Development of the Winter Olympic Games 73 3.2.2 Conflicting Philosophies of the Olympic Games Participation versus Win at all Costs 74 3.2.3 Elitism and Sport 75 3.3 The Paralympics 76 3.4 The Special Olympics 78 3.4.1 The Special Olympics and Social Inclusion 79 3.4.2 Other Benefits of Participating in the Special Olympics 81 3.4.3 Criticisms of the Special Olympics 82 3.5 Distinct Differences between the Special Olympics and Paralympics 86 3.6 Disability Sport from an Irish Perspective 87 3.7 Conclusion 88 CHAPTER 4: INCLUSION 4.0 Inclusion 4.1 Introduction 89 4.2 Models of Service Delivery - Traditional Model 90 4.2.1. Labelling of People with Intellectual Disabilities 93 4.3 Models of Service delivery - Modern Model 95 4.4. Arnstein’s Ladder of Participation 99 4.5 Sport and Social Inclusion 101 4.6. Defining Inclusion 105 4.7 Conclusion 107 CHAPTER 5: RESEARCH METHODOLOGY 5.0 Research methodology 5.1 Introduction 109 iv 5.2 Aims of the Research Study 110 5.3 The Research Question/Topic 112 5.4 Research Methods 113 5.4.1 Qualitative Research Methods 113 5.4.2 Focus Groups 114 5.4.3 Selecting Images for Focus Group Stimuli 117 5.4.4 Preparations for Facilitation of Focus Groups 118 5.5 Thematic Analysis 120 5.6 Semi-Structured One to One Interviews 122 5.7 Ethical Considerations 124 5.8 Limitations of the Study` 125 5.8.1 Sensitivity of Topic under Investigation 125 5.8.2 Difficulty in Critiquing the Special Olympics 126 5.8.3 Ireland and Northern Ireland – Different Political Jurisdictions 127 5.9 Conclusion 128 CHAPTER 6: PRESENTATION OF FINDINGS 6.0 Presentation of Findings 130 6.1 Introduction 130 6.2 Theme 1: Health and Wellbeing 133 6.2.1 Focus Groups: Health and Wellbeing 133 6.2.2 One-to-one Semi-Structured Interviews: Health and Wellbeing 135 6.3 Theme 2: Teamwork, Fun & Togetherness 136 6.3.1 Focus Groups: Teamwork, Fun & Togetherness 136 6.3.3 One-to-One Semi Structured Interviews: Teamwork, Fun & Togetherness 138 6.4 Theme 3: Skills Development 141 6.4.1 Focus Group Findings: Skills Development 141 6.4.2 One-to-One Semi Structured Interviews: Skills Development 144 v 6.5 Theme 4: Language and the term ‘Special’ 146 6.5.1 Focus Group Findings: Language and the term ‘Special’ 146 6.5.2 Semi-Structured One-to-One Interviews: Language and the term ‘Special’ 148 6.6 Theme 5: Pity and Charity 152 6.6.1 Focus Group Findings: Pity and Charity 152 6.6.2 Semi-Structured One-to-One Interviews: Pity and Charity 155 6.7 Theme 6: Tokenism 157 6.7.1 Focus Group Findings: Tokenism 157 6.7.2 One-to-One Semi Structured Interviewees: Tokenism 158 6.8 Theme 7: Inclusion within the Confines of the World of 159 Disability and Special Olympics 6.8.1 Focus Group Findings: Inclusion within the Confines of the World of Disability and Special Olympics 159 6.8.2 Semi Structured One-to-One Interviews: Inclusion within the Confines of the World of Disability and Special Olympics 161 6.9 Conclusion 163 CHAPTER 7: CONCLUSION AND RECOMMENDATIONS 7.0 Conclusion and Recommendations 7.1 Introduction 166 7.2 Summary 166 7.3 Conclusions 168 7.3.1 Health and Wellbeing 168 7.3.2 Teamwork, Togetherness, Fun & Skills Development 170 7.3.3 Use of Language and Labels ‘Special’ 172 7.3.4 Charity/Pity 173 vi 7.3.5 Tokenism 175 7.3.6 Inclusion within the confines of the World of Disability and Special Olympics 176 7.4 Aims of Research Study 177 7.4.1 Exploration of the impact the images used by the Special Olympics to portray PWID have on public attitudes towards this minority group 178 7.4.2 Public Attitudes towards the Special Olympics and the position of its participants within local Communities 179 7.4.3 Assessment of how a decade of legislative and social change in how PWID in Ireland are treated has impacted upon participants. 181 7.5 Recommendations 183 7.5.1 Option 1: Strategic Repositioning – The Special Olympics as advocates for Meaningful Inclusion 184 7.5.2 Option 2: Adaptation of Special Olympics mission in line with their achievements and ‘uniqueness’ in the world of disability service provision 185 7.6 Conclusion 187 APPENDICES 8.0 Appendices: 192 8.1 Appendix 1: Landmark Developments in Disability Service Provision, Policy and Legislation 192 8.2 Appendix 2: National Intellectual Disability Database 2016 193 8.3 Appendix 3: Participant Information Sheet 194 8.4 Appendix 4: Participant Consent Form 200 8.5 Appendix 5: Interviewee Information Sheet 201 8.6 Appendix 6: Sample of Transcripts of Focus Groups 205 8.6.1 Appendix 6 (a): Munster 18 – 23 years 205 8.6.2 Appendix 6 (b): Leinster 38 – 43 years 220 8.6.3 Appendix 6 (c): Ulster 18 – 23 years 228 8.6.4 Appendix 6 (d): Connaught 38 – 43 years 241 vii 8.7 Appendix 7: Interviewee Notes 251 8.7.1 Appendix 7(a): Interviewee One Notes 251 8.7.2 Appendix 7(b): Interviewee Two Notes 258 8.7.3 Appendix 7(c): Interviewee Three Notes 264 8.7.4 Appendix 7(d): Interviewee Four Notes 270 8.7.5 Appendix 7(e): Interviewee Five Notes 278 REFERENCES 284 viii ACKNOWLEDGEMENTS Firstly, I would like to express my sincere gratitude to my supervisor Professor David Hassan for his ongoing advice, motivation, encouragement and support of my PhD studies. His immense knowledge of the research topic under investigation and the manner in which he imparted and shared that knowledge was of significant support and reassurance to me over the last six years. I could not have imagined having a better supervisor and mentor for my PhD studies. I would like to thank all the people with intellectual disabilities I have met and worked with over the last 28 years. Thank you for sharing your stories with me and making me welcome into your homes during this time. Most importantly, thank you for teaching me what person centeredness is all about. Thank you to all the people who participated in the focus groups and interviews.