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Disabled People and Communication Systems in the Twenty First Century

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Disabled People and Communication Systems in the Twenty First Century Disabled People and Communication Systems in the Twenty First Century Alison Sheldon Submitted in accordance with the requirements for the degree of PhD The University of Leeds Department of Sociology and Social Policy June 2001 The candidate confirms that the work submitted is her own and that appropriate credit has been given where reference has been made to the work of others. ACKNOWLEDGEMENTS I acknowledge the financial support of the Economic and Social Research Council (ESRC) and British Telecom (BT). This thesis would not have been possible without the advice and support of countless others. Most importantly, I must thank all those people who participated in the fieldwork. Without your input there would have been no thesis. Thank you for giving up so much of your time, and for welcoming me into your lives. Special thanks must go to my supervisors Colin Barnes and Geof Mercer at Leeds University, and to Di Holm at BT. Thanks to Colin and Geof for giving me the opportunity in the first place, and for providing inspiration, support and friendship. Thanks to Di for her kindness, generosity and support. Thanks to my examiners, Malcolm Harrison and Michael Oliver for their helpful comments. Thanks to everyone at the Centre for Disability Research, and all those who have passed through during my time there. I have been truly fortunate to be part of such a vibrant, committed and supportive centre. Special mention must go to Hannah Morgan for her invaluable eleventh-hour assistance, and to Mark Priestley, without whom I would never have embarked on such a radical career change. Thanks to Natalia Gerodetti, Cath Morgan, Debby Phillips and Alison Slater for making my journey an entertaining one. Thanks to Lynn Jeffries and Linda Marsh for their continued support and encouragement, to Tim Ashford for all the press clippings, to Richard Scott for his computer expertise, and to Steve Elvidge for putting me right about mobile phones. Thanks to the many other friends who have put up with my errant behaviour over the last few years, especially to my neighbour Jem Dobbs for feeding me coffee when things got tough. To my parents, Neil and Patricia Sheldon - thank you for your emotional and financial support. Thanks to my father for his thoughtful comments on an earlier ii draft. Thanks also to my sisters Claire and Judith. Thank you all for believing I could do it, even when I didn't myself. Last, but not least, I would like to dedicate this thesis to Stephen Piper who has lived the experience with me, never doubted my ability to do it, and provided constant practical, emotional and intellectual support. Thanks for your countless comments on earlier drafts, and for never letting me off the intellectual hook. I could not have done it without you. Thanks Stephen. This is for you... ABSTRACT This thesis is first and foremost about oppression - the oppression experienced in our society by those with particular impairments. It is also about technology - the new information and communication systems which have increasing primacy in today's world. Specifically it is about the ways in which the communication systems of a disablist society hold both opportunities and threats for disabled people and their organisations in the twenty first century, perhaps changing the boundaries of the disabled category. In drawing on literature from both the sociology of technology and disability studies, it contributes to two bodies of academic work. It is intended as a welcome palliative to the growing tendency towards speculative futurology that characterises both disciplines, since it places an empirical study at centre stage. It is unusual in that its main emphasis is on domestic usage of communication systems, not on their use in employment. The research participants were largely unwaged people, many of them in older age groups. The study gave participants the opportunity to describe their experiences and opinions of technological developments in the last throes of the twentieth century. Access to communications systems emerged as a major issue, with disabled people facing a variety of barriers to their beneficial use of technology. Concerns were voiced however about the provision of such systems constituting little more than a 'technical fix', cutting welfare costs, enforcing further segregation and distracting attention from the real source of disabled people's oppression. These findings highlight the increasing importance of more radical social transformation. The opportunities and threats presented by the utilisation of communication systems are examined through an analysis of their use- value - how they allow or disallow the satisfaction of basic unmet needs. In conclusion, various recommendations are proposed which will go some way towards making technology more accessible and appropriate for disabled people. It is however acknowledged that this will merely treat a symptom of their oppression, not eradicate the cause. iv TABLE OF CONTENTS List of abbreviations x List of tables xii CHAPTER ONE: INTRODUCTION 1 Disabled people in the twenty first century 2 Communication systems in the twenty first century 4 Organising for the twenty first century 6 General outline of the study 6 A note on terminology 14 CHAPTER TWO: DISABILITY, TECHNOLOGY AND SOCIETY 15 Locating 'disability' in the definitional bog 15 The medical model 15 A socio-medical definition 16 A disabled people's definition: The social model of disability 18 Commonality or difference? Internal critiques of the social model 19 Disability, ageism and multiple oppression 20 Techno-enthusiasm and models of disability 22 Disabled people and the sociology of technology 23 Technological determinism 23 The social shaping of technology 25 Beyond technological determinism and social shaping? 26 A historical materialist analysis 28 Impaired people and feudalism 29 The rise of capitalism, the rise of disability 29 A brave new world? Finkelstein's 'Phase 3' 32 V The telephone: A historical perspective on access 33 Use-value or useless-value, True needs or false needs 35 Disabled people and technology: Liberation or oppression? 41 Medical technology 42 Rehabilitation technology: Science-fact or science-fiction ? 43 Independence, dependence or interdependence? 45 Fix this! Disability and the 'technical fix' 47 Summary 49 CHAPTER THREE: RESEARCHING DISABLED PEOPLE AND COMMUNICATION SYSTEMS 51 Emancipatory research 51 Theoretical assumptions 52 Objectivity 53 Positive gain 54 Changing the relations of research production 56 Strategies 57 The study: Overview 58 The sampling frame 60 Resource centre users 60 City-on-Line (COL) participants 61 What about the workers? 62 Participant observation 63 The focus groups 65 Focus groups and disability research 65 Setting up the focus groups 67 Conducting the focus groups 69 The individual interviews 70 Setting up the interviews 71 vi Interview schedules 75 The influence of the disabled researcher 76 From particular to general 78 Summary 79 CHAPTER FOUR: CORPORATIONS AND TECHNOLOGICAL ACCESS 80 Market forces / disabling forces? 81 The privatisation of telecommunications 83 The motivations of privatized companies 85 Manifest functions: Altruism or oppression? 86 Latent functions: Disabled people as profit generators 88 Universal design: Rhetoric or reality? 90 Universal design or specialist design? 92 Universal design or stigmatisation? 95 Universal design and multiple impairment 98 Universal design and complexity 99 User involvement 103 Information provision 104 Summary 112 CHAPTER FIVE: ACCESS AND THE SOCIAL MODEL OF DISABILITY 114 'Let the world come to you': Communication systems and 'housebound' people 115 'What life d'you have if you don't go out?' 118 Looking at four walls: Barriers to leaving the house 119 Get your priorities right! 121 The technical fix revisited 122 Money's too tight to mention: Economic barriers 124 Giza job! Access to employment 126 vii Access to benefits 128 Living beyond one's means: The additional costs of impairment 130 Computer provision 132 Education, education, education. 135 Further education: Training courses 138 Teaching yourself and back up support 143 Twenty first century basket-weaving: Education for what? 146 Internalised oppression and self-confidence 147 Technology, disability and difference 149 Old and past IT? Disability, older age and technological access 149 Is IT a man's world? Disability, gender and technology 153 Not feeling up to IT: Impairment effects and technological access 154 Summary 155 CHAPTER SIX: AUTONOMOUS LIVING IN THE VIRTUAL COMMUNITY. 157 Physical survival 157 Personal autonomy and 'independence' 159 Care in the virtual community? 162 Sending out an SOS: The telephone as a 'lifeline' 166 'Help! I need somebody': Community alarms 169 'Computer - lights!': Smart housing 175 Security and autonomy outside the home 179 'Public' telephones: A public disgrace 179 Mobile phones: Benefits 181 Mobile phones: Barriers 185 Summary 188 CHAPTER SEVEN: INFORMATION, CITIZENSHIP AND CONSUMPTION... 190 Shopping around for information 190 viii Information and citizenship 193 Information technology and inclusive citizenship 195 Hitching a ride on the information superhighway 197 'What I fancy at the time': General information 198 'What I really need to find information about': Specialist Information 199 Information overload? Finding the relevant information 202 Inconspicuous consumption? Disabled people and online shopping 204 Online shopping: Problems 209 Just browsing: Shopping as a leisure activity 214 Online shopping
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