Murray, Victoria Louise (2018) The moving landscapes of learning disability. PhD thesis. http://theses.gla.ac.uk/8709/ Copyright and moral rights for this work are retained by the author A copy can be downloaded for personal non-commercial research or study, without prior permission or charge This work cannot be reproduced or quoted extensively from without first obtaining permission in writing from the author The content must not be changed in any way or sold commercially in any format or medium without the formal permission of the author When referring to this work, full bibliographic details including the author, title, awarding institution and date of the thesis must be given Enlighten:Theses http://theses.gla.ac.uk/ [email protected] The Moving Landscapes of Learning Disability Victoria Louise Murray MA (So Sci; MRes) Thesis submitted for the degree of Doctor of Philosophy Department of Geographical and Earth Sciences, Institute of Health and Wellbeing, University of Glasgow January, 2018 Acknowledgements As I sit down to ponder my acknowledgements I’ve come to the realisation that I never actually thought I would ever get to this point, and I find myself in the unusual position of not being sure what to say. I owe most of the words on these pages to the many learning disabled men and women (and their parents and carers) who became part of my life for a year or so and I wish to thank them for inviting a strange woman into their homes and divulging some of their most personal stories and memories. I enjoyed every minute of my data collection – after all it seemed so far away at one point – and none more so than the time spent with Inform Theatre Group. If only all people were so accepting, honest, funny and welcoming; you never made me feel that I wasn’t a valued member of the group and I guess that is why you are so successful at what you do. Long may it continue. Thanks must also be given to Professor Chris Philo, without your scattered annotations and keen eye for a split- infinitive I may never have gotten to this final point. In fact, I would never have embarked upon a PhD at all were it not for you, although I’m still largely at a loss as to why you ever thought I could do this Dr thing. I guess you do know best! To the other half of my supervision team, Professor Sally-Anne Cooper, thank you for accepting my work openly, even when things got a little too ‘geography’. In an Edinburgh hotel we sat together awaiting a grilling from the ethics panel, you reminded me that knowledge does not need to be gained all at once, but can be learned over time. You may not remember these words but they have stuck with me. To both of you, I apologise for getting pregnant three quarters of the way through a PhD but I have, finally, achieved the ‘double delivery’! To my parents, who always believe that I’m more than I am; I love you. Finally, to my boys, some other folks might be a little bit smarter than I am, big and stronger too, but none of them will ever love you the way I do, it’s me and you boys. Thank you to my favourite deputy who has put up with it all…even if you still have no idea what it is that I do all day. ii Declaration I declare that this thesis is the result of my own work, except where explicit reference is made to the work of others. This thesis has not been submitted for any other degree at the University of Glasgow, or any other institution. Victoria Louise Murray 22nd January 2018 iii List of Contents List of Figures/Tables/Boxes v List of Abbreviations vi Abstract vii Chapter 1 Introduction 2 Chapter 2 The importance of space, place and home: Review of relevant literature 10 Chapter 3 Research with everyone? Methods for research with people with learning disabilities 36 Chapter 4 Mapping Residencies: Where people with learning disabilities have lived and do live 94 Chapter 5 The art of making decisions 156 Chapter 6 Movement 203 Chapter 7 Belonging 253 Chapter 8 Conclusion 299 References 310 Appendices 1: Information Sheet for participants 328 2: Questionnaire 333 3: Topic guide 339 4: Scottish Institutions, 1913 343 5: Scott’s network map 344 6: Postcode range map 345 7: Section ‘A’ map excerpt 346 8: Section ‘B’ map excerpt 347 9: Blackwood Court 348 10: Charleston 349 11: Lawrence’s timeline 350 iv List of figures, tables and boxes Figure 1 Lawrence 2 The Eugenic tree 3 Kallikak Study 4 Funnel structure of research 5 Questionnaire returns extract 6 Talking Mat example 7 Life map 8 Network map 9 The research process 10 Baldovan institute 11 NHS Boundaries for Mainland Scotland 12 Learning disability postcode range 13 Postcode distribution 14 Section ‘A’ map 15 Section ‘B’ map 16 Lennox Castle buffer zone 17 Residential distribution of sample 18 Scott’s network map 19 Allan out walking 20 Scott’s home 21 Matt’s room Table 1 Participatory versus emancipatory research 2 Long-stay learning disability hospitals and institutions 3 Housing providers in GG&C sample database Box 1 Case study with Lawrence: Part 1 2 Case study with Lawrence: Part 2 3 Case study with Lawrence: Part 3 4 Case study with Lawrence: Part 4 5 Case study with Lawrence: Part 5 6 Case study with Lawrence: Part 6 7 Case study with Lawrence: Part 7 v List of Abbreviations PWLD People With Learning Disabilities GG&C Greater Glasgow and Clyde TKTL The Keys to Life SAY? The Same as You? SCLD The Scottish Commission for Learning Disability SLDO The Scottish Learning Disability Observatory R&D Research and Development LDLT Learning Disability Liaison Team vi Abstract Most adults are able to take some control over where they live and are able to reflect on their migration histories, those places where they have lived and worked, and those places where they might aspire to live in the future. These life altering decisions have been negotiated either autonomously or in conjunction with significant others in their lives. For some adults, most notably those with learning disabilities, these life decisions are partially, if not wholly, made for them by others. It is therefore the aim of this thesis to uncover more about the decision-making opportunities afforded to people with learning disabilities regarding their home-spaces as they navigate ‘moving landscapes’ which they have perhaps not envisaged for themselves. Through the themes of decision-making, movement and belonging, this thesis works towards an up-close and in-depth study of residential spaces for people with learning disabilities as they traverse landscapes not always suited to their physical, mental and political needs. vii Ronald McClelland (2015) Home Chapter 1 Introduction Most adults are able to take some control over where they live, to make decisions over where exactly they dwell and, as a consequence, to reflect on their migration histories. The mere mention of home can inspire vivid accounts of those places where they have lived and worked, or not (Hall, 2004), the reasons behind their moves or non- moves, and maybe even including those places where they might aspire to live, work and belong in the future. These life-altering decisions have been negotiated either autonomously or in conjunction with significant others in their lives. For some adults, however, most notably those with learning disabilities, these life decisions are partially, if not wholly, made on their behalf. It is therefore the aim of this thesis to uncover more about the decision- making opportunities afforded to people with learning disabilities regarding their home-spaces as they navigate ‘moving landscapes’ which they have perhaps not envisaged for themselves. Historically, people with learning disabilities (PWLD) have had few opportunities to contribute to decision-making, especially regarding where they live. Their residential movements have been entangled within medically imbued political frameworks, which sought first to remove PWLD from the corpus of society, then to (re)place them within communities arguably not suited to their needs (discussed in more detail in Chapter 2 and Chapter 3). The closure of long-stay institutional spaces for PWLD was supposed to provide a better quality of life through increasing normalisation agendas (Hall and McGarrol, 2012), but, as Myers et al (1998) have noted, community presence and availability of opportunities do not directly correlate with genuine participation by PWLD within the communities in which they live; if, indeed, this should be a marker of the quality of life of 2 PWLD. It is, therefore, a key tenet of this thesis to discover more about the lived realities of PWLD as they encounter mobile residential experiences of and at home. Massey (1993), in her critique of ‘time-space compression’ (Harvey, 1989) as the speeding-up of time-space connectivity under capitalism, noted that the ability to move and to undertake certain types of movement is “socially differentiated and unevenly distributed” (Dufty-Jones, 2012:210). Ong (1999:11) further adds that the notion of everyone being able to take “equal advantage of mobility” is entirely misleading. Combining notions of home and mobility, Blunt and Dowling (2006) argue that the static rootedness of home, suggested by Heidegger (1993), can be usefully unsettled when mobility is understood as a function of the “(re)production of meanings of home” (Dufty-Jones, 2012:212). As such, it is central to the core aims of this thesis to probe the mundane, yet in various ways profound, realities of life with a learning disability as those affected seek to navigate ‘differently normal’ lives (Hanson and Philo, 2007) around different residencies and homes.