Disability and Discourse

Analysing Inclusive Conversation with People with Intellectual Disabilities

Val Williams

• Publisher: Wiley
• Year: 2011
• Print ISBN:
  9780470682678
  9780470682661
• Edition: 1
• eBook ISBN:
  9781119996163
• Topic: Psychology
• Subtopic: Social Psychology
• Index: Psychology

Disability and Discourse applies and explains Conversation Analysis (CA), an established methodology for studying communication, to explore what happens during the everyday encounters of people with intellectual disabilities and the other people with whom they interact.

• Explores conversations and encounters from the lives of people with intellectual disabilities
• Introduces the established methodology of Conversation Analysis, making it accessible and useful to a wide range of students, researchers and practitioners
• Adopts a discursive approach which looks at how people with intellectual disabilities use talk in real-life situations, while showing how such talk can be supported and developed
• Follows people into the meetings and discussions that take place in self-advocacy and research contexts
• Offers insights into how people with learning disabilities can have a voice in their own affairs, in policy-making, and in research

Chapter 1

Starting Points

The Central Interest: Communication

This book is about communication. The research reported in these pages is based on recordings of people engaged in social activity. It is a type of research that is fascinating, because it offers a way to understand and change certain patterns in communication, patterns that regularly exclude some groups of people. Every time two or more people interact there is a fresh slate, an opportunity for each person to communicate with the other simply ‘as a person’ and to be open to new meanings, relationships and ways of interacting. Human communication can sound like something quite emancipatory – a tool for change! As the reader will suspect, it is not quite as easy in practice. In order to move towards more ‘empowering’ and equal situations in talk, it is vital to explore first the regular, routine power imbalances that affect many people. The chapters in this book therefore trace both problematic as well as positive aspects of communication as they are interwoven in the everyday here-and-now of people’s lives.

My central aim in this book is to deliver practical understanding of interactions with people with intellectual disabilities, so that those interactions can be carried out on a basis of equality. People with intellectual disabilities have a right to be included in interactions and have a right to speak out. All those who have an interest in communication, and in working alongside people with intellectual disabilities, will find much in these pages that will support new ways of communicating and working with individuals and groups.

Some readers turning to a book about intellectual disability will expect it to be about communication deficits: most surely, this book is not. Rather, it is about the way ordinary resources of social interaction are used in particular contexts by and with people with intellectual disabilities. Rather than offer ‘tips for support workers’, I aim to capture the complexity and intricate, moment-by-moment contingencies of two-way interaction. The extracts given through the text are detailed transcriptions of audio and video recordings of real-life activities, communication in which more than one participant was involved and where people were engaged in social activities, ranging from checking into a hotel or making a cup of coffee, to planning a research project and chairing a meeting.

Another, equally important starting point was my interest in finding ways to study human communication. Like other analysts, I started doing analysis of interactions because I was drawn to the study of how people understand and communicate with each other. Therefore, a parallel aim of this book is to interest students, researchers and others who also want to study communication and are searching for inclusive and practical ways of approaching analysis. I use a methodology, described further in Chapter 2, which could be called eclectic, but draws largely on what is called applied ‘conversation analysis’, referred to as CA throughout (ten Have, 1999). I have taken a position that the tools of CA can be used as a practical methodological resource to explore issues of social concern. Moreover, I have carried out analysis in ‘inclusive’ contexts of research, involving people with intellectual disabilities themselves in the projects and in the analysis (Williams et al., 2009b). Because there are many conflicting positions and arguments about methodology within discourse analysis, the current book will not presume to side with one set of analysts or another. Instead, it will provide an account of how CA was practised within the current projects. All this is explained further in Chapter 2.

For those unfamiliar with CA methodology, I hope that this book will serve as a taster and a route into a fascinating area of study. Many would-be enthusiasts get put off by the technical and obscure façade of discourse analysis, and also by the seeming irrelevance of some of the findings about how communication is done. I have made a determined attempt to set analysis within a meaningful framework and to explain what I am doing, so that things are more accessible. I have also tried throughout the book to suggest and discuss why analysis matters. By following the analysis and reading some of the texts referred to in each chapter (e.g. Wooffitt, 2005), readers will be able to find out how the tools of CA could suit their own goals.

This book focuses on different social activities that contribute to having a voice in some diverse, lived contexts. It presents actual examples from research studies of what people have said to each other, but not as isolated comments given during interviews or presentations. For instance, the following lines are from a conversation between two people in a living room:

Transcription conventions used throughout this book are explained further in Chapter 2; significantly the transcription above includes non-verbal noises such as laughter at line 47, indicated by LF. The numbers in brackets relate to the length of pauses in the talk, which are also of interest here.

The two people talking here are Simon and Alan. These are assumed names, like all the names in this book, except where it is acknowledged that people are active contributors and wish their name to be included. In extract 1.1, Simon is a man who has been labelled as having an ‘intellectual disability’ (or in the UK, where he lives, a ‘learning disability’). As they are talking, both men are also doing things – getting up from their seats, walking into the kitchen, and so on. However, there is also a sense in which their talk itself does things. In line 45, for instance, Simon uses talk to instruct his support worker, and at line 52 he accounts for the fact that he has nothing on his feet. All these bits of talk perform actions in that they make it possible for the pair to get to the kitchen and to establish the task of making a cup of coffee. They also perform actions in reinforcing aspects of the relationship between Simon and Alan, whom Simon refers to as ‘mate’. A central task for Simon is about ‘doing control’ and being able to instruct his support worker in a pleasant and friendly way.

Extract 1.1

45.	Sim	right (.) would you like to help me with the coffee mate
46.	Al	((smiling)) if I ha::ve to
47.	Sim	tt th tt ((LF))
48.	Al	go on then↓ (0.2) did you take your cup in – you took your cup
49.		in didn’t you =
50.	Sim	= yes I put in the sink yeah yes (0.2) ((gets up and walks to
51.		door))
52.		sorry I’ve got nothing on my feet and I really should but –
53.	Al	yeah ( ) you know you should but –
54.	Sim	oh that’s another story isn’t it ((laughs))

The topic of control is an important one in this book. It could be approached (as it often is) via a conventional research interview, by asking people how they feel about the choice and control in their lives. Research participants then reflect on their experiences and talk about how they perceive those experiences. When people like Simon talk about their lives, a researcher can literally give them ‘voice’ by listening, by giving them a forum and perhaps by publishing their words. I have been committed to all of those things for several years and have supported people with intellectual disabilities to be authors in their own right (Palmer et al., 1999a; Gramlich et al., 2000).

In this book I am more interested in analysing choice and control in action, through the medium of talk. In other words, I am interested to see how these things (such as giving instructions amicably) are done in the ebb and flow of real-life interaction. For instance, an analysis of the above extract could focus on the way in which Simon approaches the instruction which he gives to his support worker in line 45, and also the way that instruction is taken and built into a joke in line 46. It would notice perhaps also how Simon’s instruction puts him into a powerful position of control vis-à-vis his support worker, a position which then shifts on a line-by-line basis, when for instance Simon apologises for having nothing on his feet at line 52. Taking control of one’s life can be seen as a sensitive and subtle task when viewed as real-life interaction.

This book covers two quite contrasting areas of life for people with intellectual disabilities and for those who work with them. Part 1 focuses on communication that happens in everyday life. In particular, the reader will find many conversations with support workers who are working on a one-to-one basis for a person with intellectual disabilities. Part 2 turns to talk in more formal, public situations where people with intellectual disabilities are representing others, speaking up for themselves as a group and campaigning or researching for change. As Goodley (2003) has pointed out, personal and political lives have to be linked: voice and power are central concepts in both these arenas, and one of the central questions throughout this book concerns the links between communication in private life and in collective settings. If I had to pick out one thing I have gained from writing this book, it is a more informed understanding of the massive gulf between what happens in the private lives and the public lives of people with intellectual disabilities, and some of the missed connections between these two arenas.

All the central chapters are based on analysis of communication and feature transcripts from recordings of events that actually happened. That is what discourse analysis, and in particular CA, does, and the methodological tools for this approach will be briefly introduced in Chapter 2. One of the central and most important matters is to do with the stance of the analyst. When faced with a transcript of communication that actually occurred, the trick is to try and see it afresh without making any assumptions about who is who, or about wider issues such as power and equality (see Schegloff, 1998, 1999a & b; and the discussion in Chapter 2). These matters arise from the analysis rather than from any preconceived theories or positions. Therefore, I will try to avoid, in this chapter, any attempt to tell readers everything I know about people with intellectual disabilities. There are many other books which give comprehensive accounts of the field (e.g. Grant et al., 2005). Instead, this chapter merely aims to set some markers relating to identity and the social model of disability. The rest will emerge from the analysis, and the final chapter will serve as a repository for some discussion of the social issues that have arisen from that analysis.

Why Does Identity Matter?

Through studying communication I soon became interested in identity, and would recommend particularly the stance taken by Antaki and Widdicombe (1998b). Their position is that identity is not a given, but is something that can be called on as a resource and reconstructed within talk (see also de Fina et al., 2006). Therefore, there are very close links between communication and identity, and nowhere is this more true than for people with an ‘intellectual disability’. The identity of ‘intellectual disability’ is frequently foregrounded in talk and can affect the way in which conversation is conducted, often with negative implications for people with that label. By the same token, however, it is possible to construct more empowering and meaningful ways of interacting, where people with intellectual disabilities literally ‘have a voice’, and where they can speak up for themselves. Communication, identity and disability are thus intimately linked.

My initial interest in identity came about because the people I worked with in a research group in 1997–2000 had an interest in labelling. In fact, they rejected strongly the label ‘learning difficulty’, which was the term used for ‘intellectual disability’ in the UK in some circles. One of the group members is on record as saying:

The words ‘learning difficulty’ were given to us by other people – by those people who diagnosed us. We know we’ve got this problem, seeing, speaking, understanding – but it doesn’t mean we have to have this label on our forehead. I feel like screaming, because people laugh.

(Minutes of Self-Advocacy Research Group meeting, 15 January 1997)

The labelling debate itself can easily go off at a tangent, because of the multiplicity of terms. People referred to as having a ‘learning disability’ or ‘learning difficulty’ in the UK are labelled in different ways across the globe. ‘Intellectual disability’ or ‘intellectual impairment’ are the terms most commonly used now in Australia, New Zealand and at an international level, and there are other terms current in the USA, Canada and some European countries. Most of these terms have been disputed by people to whom the labels are applied, but since the current book aims for clarity internationally, I have chosen to use the term ‘intellectual disability’. However, as will be seen from the preface to Part 1, some of the people I have worked with do not relate to that term. Formerly, people in the UK preferred the term ‘learning difficulty’, as was established in 1994 by researchers who consulted with people in the People First movement (Sutcliffe & Simons, 1994). However, the term ‘learning difficulty’ has always been a source of some confusion in an international context, where it is often taken as synonymous with ‘dyslexia’. This is not what is meant here. The people featured in this book all have some kind of enduring and generic impairment, which affects their ability to learn and to manage their lives.

It is relatively easy to follow these debates about which label to use. But the labelling debate is not resolved simply by selecting the appropriate label for the moment. It is also about what is actually meant by the category ‘Intellectual Disability’. Many books about intellectual disability start from the presumption that an intellectual disability is something that a person either ‘has’ or ‘does not have’, like an illness. However, as Rioux and Bach (1994) pointed out in the title of their book, disability is ‘not measles’. Others (see Rapley, 2004) take a social constructionist view, and would argue that ‘intellectual disability’ is an entirely culturally constructed phenomenon. There are some complex issues to face in working out what ‘social constructionism’ can mean in the context of the kind of analysis done in this book and these will be picked up again in Chapter 2. For the moment, it is enough to note that a study of communication in action is bound to be interested in the ideas of social constructionism, which would claim that categories such as ‘intellectual disability’ can literally be talked into being (Rapley, 2004: 1–7) and do not necessarily have any solid existence outside that talk.

Such arguments invariably provoke a reaction, especially in those who live with someone with an intellectual disability. Social constructionism seems to brush aside the problems of an intellectual disability, and indeed the very definition (see the latest edition of the classification manual from the American Association on Intellectual and Developmental Disabilities, 2010). Definitions of ‘intellectual disability’ are nearly always premised on ideas about an inability to manage one’s own life. The current English ‘Learning Disability’ strategy (Department of Health (DH), 2009) adopts ...

Table of contents

• Cover
• Half title page
• Title page
• Copyright page
• Dedication
• About the Author
• Preface
• Acknowledgements
• Chapter 1 Starting Points
• Chapter 2 Some Building Blocks for Analysis
• Part 1: Individual Voices
• Part 2: Collective Voice
• Appendix Transcription Conventions
• References
• Index