Disabled People and Communication Systems in the Twenty First Century

314 Pages·2008·14.66 MB·English

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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
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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
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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
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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 and the technical fix 215
Freedom of information: Regulation and accessibility 217
Summary 220
CHAPTER EIGHT: NETWORKING FOR CHANGE 221
Get a friend, get a life: The basic need for social contact 221
Disabled and older people and isolation 222
Mediated communication: Effective replacement or useful addition? 225
'It's good to talk: Telephones and affiliation 227
Video conferencing 231
Computer mediated communication 234
Meeting in the virtual community 237
'Nobody knows you're a dog': Identity and passing 242
'Wow - I've got a voice! 246
Disabled people and e-activism 251
Summary 257
CHAPTER NINE: TOWARD A BRAVE NEW WORLD? 259
Summary of findings 259
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Discussion 263
Recommendations 265
The limits of reform 266
BIBLIOGRAPHY 269
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LIST OF ABBREVIATIONS
AARP American Association of Retired Persons
ADAIP Alliance for Disability Advice and Information Providers
ANT Actor-Network Theory
BCODP British Council of Disabled People
BDA British Deaf Association
BSL British Sign Language
BT British Telecommunications plc
CMC Computer Mediated Communication
COL City-on-Line
CSDPA Chronically Sick and Disabled Person's Act
DAA Disability Awareness in Action
DAN Disability Action Network
DCODP Derbyshire Coalition of Disabled People
DIEL Advisory Committee on Telecommunications for Disabled and Elderly
People
DIG Disablement Income Group
DLA Disability Living Allowance
DOS Disk Operating System
DPI Disabled People's International
DTI Department of Trade and Industry
ESRC Economic and Social Research Council
FG Focus Group
GMCDP Greater Manchester Coalition of Disabled People
GPO General Post Office
GPS Global Positioning System
ICIDH International Classification of Impairment, Disability and Handicap
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IBM International Business Machines
ICT Information and communication technology
IT Information technology
MS Multiple Sclerosis
MUD Multi-User Domain
NDIP National Disability Information Project
OFTEL Office of Telecommunications
OPCS Office of Population, Censuses and Surveys
OT Occupational Therapist
PC Personal Computer
POSSUM Patient Operated Selector Mechanism
RNIB Royal National Institute for the Blind
SPOD Association to Aid the Sexual and Personal Relationships of People
with a Disability
TIDE Technology Initiative for Disabled and Elderly People
UN United Nations
UNESCO United Nations Educational, Scientific and Cultural Organization
UMTS Universal Mobile Telecommunications System
UPIAS Union of Physically Impaired against Segregation
VW Voluntary Worker
WAP Wireless Application Protocol
WB World Bank
WHO World Health Organisation
WIPO World Intellectual Property Organization
WTO World Trade Organisation
WWW World Wide Web
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LIST OF TABLES
Figure 1: Focus groups 69
Figure 2: Interview participants 73
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CHAPTER ONE: INTRODUCTION
This is a thesis about what is and what might be. It is a thesis about all our futures.
What kind of world do we wish to inhabit in the twenty first century? What kind of
world do we want for our children, and our children's children? The world we
currently inhabit is not an equitable one. Countless millions are consigned to the
margins nominally because of their biology or geography. The twenty first century
could see increasing polarisation between the haves and have-nots. Alternatively, it
could herald a new time of plenty where the oppressed people of the world break free
of their chains. The future is not cast in stone. The new millennium will be what we
make it.
How then to contemplate what is happening in the twenty first century? The focus
here will be on one group of the have-nots - disabled people - those people with
impairments who are currently excluded because of the way that society is organised.
Specifically, it will examine disabled people's relationship with the new
communication technologies that are increasingly said to be recasting all our futures.
Will they, as some predict, be the key to our liberation? Is it possible that they could
further marginalise us? Whilst I cannot promise answers to these questions, I hope to
make a meaningful contribution to debates both within disability studies and the
sociology of technology: disciplines that could learn much from each other. The area
of study will now be briefly introduced, and an outline of subsequent chapters
provided.
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DISABLED PEOPLE IN THE TWENTY FIRST CENTURY
At present, institutional discrimination against disabled people is very deeply
ingrained, so that they face a multitude of barriers to their full participation in society
(Barnes 1991). It has been noted that:
on nearly every indicator of participation in mainstream life disabled people come
out very badly: for example on employment statistics, income levels, suitable
housing and access to public transport, buildings, information (newspapers, radio
and television) and leisure facilities. (Finkelstein 1993: 11)
In addition, social provision for disabled people has been much criticised for
reinforcing their dependency, and it seems that many disabled people lead very lonely
and isolated lives (Barnes 1990). Disability then is a form of social oppression akin to
racism and sexism (Abberley 1987; UPIAS 1976).
The disabled population is not a homogeneous one. It consists of people with a
wide variety of impairments, and is intercut by a number of other forms of structural
disadvantage. Whilst this thesis does not set out to create hierarchies, by singling out
individual disabled people as more or less oppressed then others, it recognises that
disablism cannot be confronted in isolation (Oliver 1996a). Any study of disabled
people inevitably exposes unpalatable truths about society, the same society which
disadvantages all oppressed people. It makes sense then to transform that society so
that it includes all its citizens. As Colin Barnes suggests:
the politics of disablement is about far more than disabled people; it is about
challenging oppression in all its forms... Like racism, sexism, heterosexism and
all other forms of oppression, it is a human creation. It is impossible, therefore, to
confront one type of oppression without confronting them all and, of course, the
cultural values that created and sustain them. (in Campbell and Oliver 1996: xii)
In the 1980s, government statistics suggested that 6.5 million people in the UK
were disabled (Martin et al. 1988). More recent data suggests that 40% of adults in
this country have a 'long standing illness or disability' (CSO 1996). There are
currently said to be around 50 million disabled people in the European Community