Hidden Voices: the Participation of People with Learning Disabilities in the Experience of Public Open Space
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Hidden Voices: the participation of people with learning disabilities in the experience of public open space. Alice Robin Mathers Doctor of Philosophy (PhD) The Department of Landscape, The University of Sheffield, UK. November 2008 This research was funded by an ESRC studentship (No. PTA-030-2004-00895) Hidden Voices Extended Contents Page A. R. Mathers Hidden Voices Extended Contents Page I. Acknowledgements II. Abstract 1. Introduction 1 2. Literature Review 8 2.1 Disability and learning disability: the people 8 2.1.1 Definitions and disagreements 8 2.1.2 Looking with a clinical eye at the universal stage 8 2.1.3 Activism in the UK 10 2.1.4 The social model and its legislative influence 11 2.1.5 Further definition difficulties 13 2.1.6 Historic advances 14 2.1.7 Valuing People 15 2.1.8 Social inclusion and advocacy 16 2.2 Communication: the means 17 2.2.1 Communication equals power 18 2.2.2 A picture speaks a thousand words 21 2.2.3 My image on film 23 2.2.4 Unique hand-drawn worlds 24 2.2.5 Verbal communication and semi-structured interviews 25 2.3 Public open spaces: the context 27 2.3.1 The healing legacy 27 2.3.2 Exclusion in the environment 30 2.3.3 Development of social design strategies 33 i Hidden Voices Extended Contents Page A. R. Mathers 2.3.4 Reflection on public participation 36 2.4 Conclusion 40 3. Methodological Approaches in Analysis 41 3.1 Introduction 41 3.2 Non-disabled researcher in a disabled world 41 3.2.1 Qualitative research: a matter of people not percentages 42 3.2.2 Inclusive and participatory disability research 44 3.3 The Big Three 46 3.3.1 Phenomenology 46 3.3.2 Grounded theory 47 3.3.3 Participatory action research 49 3.4 DIDEC analysis: A combination approach 50 3.4.1 Data spreadsheet 50 3.4.2 Individual transcript memos 51 3.4.3 Diagramming 55 3.4.4 Elicitation of key themes and central premise 56 3.4.5 Comparative analysis 56 3.5 Summary 56 3. Pilot Study 58 4.1 Introduction 58 4.1.1 The setting of a stage and writing of a script 58 4.2 Context and scene setting: literature made life 60 4.2.1 The move away from professionalism into partnership 60 4.2.2 Studies into recruitment of learning disability participants 62 4.2.3 The choice of a pilot study base and participants 63 4.2.4 Becoming part of the community 65 4.2.5 Summary 66 4.3 Our Parks and Gardens 68 ii Hidden Voices Extended Contents Page A. R. Mathers 4.3.1 Evolution of the research methodology through participant action and researcher reaction 68 4.3.2 Research introductions and the idea of park 68 4.3.3 The first landscape 73 4.3.4 Camera conduct 74 4.3.5 Drawing and painting 78 4.3.6 Summary 80 4.4 Exploring art and interview 81 4.4.1 A discussion of sculptures and statues 81 4.4.2 Researcher and participant preparation 82 4.4.3 Power relations 83 4.4.4 A brief discussion of ethics surrounding participant anonymity in research 83 4.4.5 The interview process 84 4.4.6 Summary 88 4.5 The Yorkshire Sculpture Park: a coming together of methodological techniques 89 4.5.1 What we will need 89 4.5.2 Informed arrival 90 4.5.3 Indoor visual communication 92 4.5.4 Going outside 93 4.5.5 Space and shape 94 4.5.6 Stimulation in the landscape 97 4.5.7 Personal perception 100 4.5.8 Emerging experiential themes 102 4.5.9 Language: verbal and visual 106 4.5.10 Staff perception 107 4.5.11 Summary 113 4.6 Communicating with the community: the importance of dissemination and project ownership 115 4.6.1 Participant self-advocacy 115 iii Hidden Voices Extended Contents Page A. R. Mathers 4.6.2 Exhibitions at the cinema and Day Service centre 116 4.6.3 Presentation at the Peoples’ Parliament 118 4.6.4 Audience opinion 119 4.6.5 Summary 123 4.7 Conclusion 123 5. Evolved Methodology 125 5.1 Introduction: a worthwhile dichotomy 125 5.2 A process of parts: the seven step visual communication toolkit 127 5.2.1 Informed consent 127 5.2.2 Site visit 128 5.2.3 Drawing workshop 130 5.2.4 Individual canvas workshop 131 5.2.5 Photo-elicitation interviews 132 5.2.6 Staff questionnaire 132 5.2.7 Public exhibition 133 5.3 Lessons learnt in preparation for the main study 133 5.3.1 Time allowance 133 5.3.2 Flexible, individualised communication 134 5.3.3 The important role of support agency 135 5.3.4 Participant – researcher relations 135 5.4 Summary 136 6. Main Studies 137 6.1 Introduction 137 6.1.1 The shock of the relatively new 137 6.1.2 Study centre similarities and differences 138 6.1.3 SC1 and SC2 aims and objectives 141 6.2 A tale of two studies: part 1 142 6.2.1 SC1 Project arrangement 142 iv Hidden Voices Extended Contents Page A. R. Mathers 6.2.2 The urban green space experience 143 6.2.2.1 Summary 153 6.2.3 Confronting ghosts amongst the graves 154 6.2.3.1 Summary 154 6.2.4 Staff reflections 154 6.2.5 Showroom exhibition 168 6.2.6 Participant and staff feedback 168 6.2.7 SC1 Conclusion 168 6.3 A tale of two studies: part 2 170 6.3.1 SC2 Project arrangement 170 6.3.2 The remote countryside and town park 172 6.3.2.1 Summary 178 6.3.3 The developed coast 179 6.3.3.1 Summary 186 6.3.4 The urban riverside 186 6.3.4.1 Summary 190 6.3.5 The wetlands 190 6.3.5.1 Summary 195 6.3.6 Canvas conceptualisation 195 6.3.7 The rural coast 197 6.3.8 The formal gardens 199 6.3.8.1 Summary 204 6.3.9 Dissemination and reflection: Queens Hall exhibition 204 6.3.10 Staff perceptions 212 6.3.11 SC2 Conclusion 216 6.4 Conclusion: SC1 and SC2 similarities, differences, successes and limitations 218 7. Toolkit and Findings 223 7.1 Introduction 223 7.2 The Toolkit 224 v Hidden Voices Extended Contents Page A. R. Mathers 7.2.1 TOOL 1: Informed consent 225 7.2.2 TOOL 2: Site visits 226 7.2.3 TOOL 3: Drawing workshop 228 7.2.4 TOOL 4: Individual canvas workshop 230 7.2.5 TOOL 5: Photo-elicitation interviews 231 7.2.6 TOOL 6: Staff questionnaire 233 7.2.7 TOOL 7: Public exhibition 234 7.2.8 Summary 237 7.3 Experiential findings 237 7.3.1 THEME 1: Daily life experience 237 7.3.2 THEME 2: Communication methods 239 7.3.3 THEME 3: Environmental choice 240 7.3.4 THEME 4: Social experience 243 7.3.5 THEME 5: Activity in the landscape 246 7.3.6 THEME 6: Experiential benefits 249 7.3.7 Diagramming the six key themes 251 7.3.8 CENTRAL PREMISE: Limited environmental experience 258 7.4 Conclusion 262 8. Conclusion 264 8.1 Introduction 264 8.2 Research response 264 8.2.1 Visual communication toolkit 264 8.2.2 DIDEC analysis 265 8.2.3 Experiential findings 266 8.3 Benefits and beyond 270 8.4 Operational considerations 270 8.5 Broader implications 273 8.5.1 Learning disability participation 273 8.5.2 Healthy spaces for life inclusion 275 8.6 The hereafter’s already here 277 vi Hidden Voices Extended Contents Page A. R. Mathers III. References 278 IV. Appendices 287 vii Hidden Voices Acknowledgements A. R. Mathers I. Acknowledgements Dedicated to my parents John and Jenny, my sister Hannah and Ben. Always the four most important people in my life. This is a thesis about, and driven by, people. During the course of this research I have been honoured to have worked with some truly inspiring individuals. In particular I would like to thank all the participants, staff and volunteers at Sheffield Mencap Day Services and Dilston College of Further Education. I am humbled to have been so accepted and supported by you all. At Sheffield Mencap Day Services I feel I have become part of the community and hope to remain included for the foreseeable future. The friendships I have made and memories I hold are as valuable as any I have experienced. I would like to thank Kevin Thwaites and Helen Woolley for my academic supervision. Kevin, you have always been so knowledgeable and interested. Without you this thesis would be a pale imitation of what has actually been achieved. Helen, I would like to thank you for your support and the opportunities you have provided for me. To those with whom I have journeyed through this PhD experience; my research room, Ian Simkins and Rebecca Mallett. All of you have been my reflection and my reassurance. Ian, your words have always been the truth and I look forward to our future work and discussions. Rebecca, I am so pleased to have met you. Everything we have shared (in KL) and beyond has been so important in how I think about think about my work. I also wish to thank my friends.