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Contents

List of Figures and Tables vii Preface ix

Introduction 1

1 Why Discourse Analysis? Disability and Language 7

2 Models, Theories, and Perspectives: A Discourse Approach to Disability and Disability Studies 25

3 Medical Discourses of Disability 51

4 Political and Economic Discourses and the Limits of Language 75

5 Counting as Disabled: Discourses of Identity 97

6 Media Discourse and Popular Representation 109

A Final Note 123

Bibliography 125 Index 137

List of Figures and Tables

Figures

3.1 Norman Fairclough’s (2001 [1989]) model of textual production and interpretation 63

Tables

I.1 Collocates of “disability” in three large text corpora 2

2.1 Tobin Siebers’ justifications for Disability Studies 44 2.2 UPIAS’ justifications for Disability Studies 45

4.1 Policy measures in the DAA 87

Chapter 1

Why Discourse Analysis?

Disability and Language

Some years ago, while studying at the University of California at Berkeley, I came across a sign on a bathroom stall. The sign requested that I please leave the stall unoccupied, as a courtesy to “the disabled”. From a certain perspective, this request could be construed as a little bit puzzling. Not only was it unclear how any disabled people would benefit from the stall leaving unoccupied – specifically, myself; as a wheelchair user, I would have preferred to use it, since it was the only wheelchair accessible stall in the bathroom. A more reasonable reader, of course, would assume that the sign addressed a non-disabled audience. But not all disabled readers remain reasonable after many years of being talked about rather than being talked to. The building where I live, in Oslo, has a courtyard where parking is strictly prohibited – except in cases of “transportation of goods and the handicapped”. The discourse of disability has a long history of not involving disabled people as addressees or people with independent agency, but as clients, recipients, beneficiaries, and transportable goods – as objects and as predicates. As Henri-Jacques Stiker argued a generation ago, disability continues to signify difference and alterity:

Isn’t the first question […] this one: why is disability called ‘dis-ability’? […] When we name, we point up a difference. […] It is the wonderful clarity of the opening books of the Bible in which God distinguishes, separates, differentiates by naming, to the point where to create is to separate; we also see one being (Eve) come out of another (Adam) but affirmed as Difference even in the name that is cried out. (Stiker, 1999 [1982]: 5)

This book is about disability and language, and its interests are primarily in language in use, as it can be found in social, institutional, and political contexts. It is about the kind of socio-political stories told about disabled people, and about the kind of socio-political stories disabled people tell about themselves. A major premise of the book is that stories and representations also constitute arguments, whether implicitly or explicitly, and so come to express something not only about how the world is, but about how it should be. This requires nuance in analysis:

[A]n effective approach to the politics of disability narrative needs to be localized culturally and historically. There is no universal narrative that can do justice to the variegated historical patterning of its material meanings. (Snyder & Mitchell, 2000: 164)

Why Discourse Analysis? Disability and Language 9

social theory of disability might fully incorporate “the multidimensional and multifunctional role of language”. In their introduction to that volume, they began to answer that question by drawing on what was then another emerging discipline of discourse analysis. Citing key figures in discourse analysis such as Norman Fairclough, Teun van Dijk, Margaret Wetherell and Jonathan Potter, they argued that Disability Studies must reclaim discourse (Corker & French, 1999: 6), an act which entails close linguistic analysis as well as a social theory of language use. Words like “disability” derive their meaning-in-use from their hegemonic opposite numbers, like “normal”, but also from their traditional and conventional usage contexts. This suggests the need to bring non-traditional thematic areas within the analytical scope of Disability Studies, and to introduce disability as an analytically relevant concept into new areas. The Corker & French anthology provides many instructive examples of how language (and other forms of representation, e.g. film) informs and influences the concept of disability. Their work forms, as I see it, part of a broader effort to continually and persistently de-naturalize disability as well as related words and concept. This book is a contribution to those efforts. Analysing disability from a discourse perspective is a matter of continually redirecting one’s attention (and the reader’s) to context and usage, partly because usage-in-context has real political implications. In this regard, my view of what discourse is and why it is important differs from, for example, Shakespeare (2013: 2), who sees discourse studies and discourses analysis as focusing representations to such an extent that important political issues become obscured. But discourse analysis is, besides other things, a tool for explicating political issues and conflicts. An example: as I began to write this book, a controversy over rising building costs played out in the Norwegian media. Several major construction companies protested new regulations which mandate universal design in new private residence, arguing: a) that the prohibitive costs would have to be passed on to consumers; b) the regulations were being enforced because of the needs of a very small number of wheelchair users. While the technical and financial aspects of the debate are too complex to recount here, I will point out that the builders’ arguments were predicated on a narrow construal of “the disabled” as wheelchair users – one related, in key ways, to the bathroom stall sign in Berkeley. This argument, which at the time of writing appears to have persuaded the right-wing Norwegian government, should be met with a number of political tools, including activism, litigation, and lobbyism – all of which operate through discourse. “The disabled” tend to occupy the communicative position of third parties, even as they become scapegoats. They are an unpredictable quantity – an x-factor. The group of people to which the label refers can be construed as quite large (if they are to be represented as a threat to the economic wellbeing of the nation) or as quite small (if they are making demands). This is a matter of context, and circumstances, which inform language use. My approach in this book draws mainly on a particular form of discourse analysis – Critical Discourse Analysis (CDA), but I will also refer to works

10 Disability and Discourse Analysis

that employ or advance what I think of as an ecumenical discourse-analytical perspective on disability. This includes works that explicitly approach the concept of discourse from other angles than my own, for example from the perspective of literary criticism, cultural studies and narrative analysis (Snyder & Mitchell, 2000), but also works that display similar methodology and analytical purpose to that of discourse analysis while not invoking the concept at all, e.g. Oliver (1990). In the case of the former, my primary rationale is that “discourse” is loosely defined even in CDA literature, which is commonly described as an “approach” with a “toolbox” (Wodak & Meyer, 2009) rather than a narrow school of research. CDA and the related discourse-historical approach have many antecedents, ancestors and close cousins, both in the social sciences and in the humanities. They employ, mutatis mutandi , concepts from literary studies, sociology, and, not least, rhetoric, for good reason: What is essentially an interpretive scholarly effort, with a strong hermeneutical component, should not forgo the use of proven interpretive tools for the sake of a toolkit that is exclusively its own. Drawing on works from closely related scholarly traditions is a source of strength, so long as the aims and constraints of those traditions are kept in mind. In the case of the latter, i.e. works that do not use the concept of “discourse” at all, Michael Oliver’s analyses of the OPCS form sent out to disabled people serves the purposes I have already discussed. In the questions posed on that form, everyday problems are construed as stemming from impairments. In Oliver’s rephrasing of the questions, the problems are reconfigured as stemming from the organization of society. The rephrasing draws attention to context and conventions of usage, showing that the location of “the problem” is a matter of how one represents the world, and what direction of argument one employs. This is an example of precisely what discourse analysis should do: Look closely at texts, and tease out the implications of how people, and the world, are represented in those texts.

A Note on Language and Culture

Like many Norwegians, I primarily talk, write and – to some extent – think in Norwegian and English. These two languages both belong to the Indo-European language family, both share a heritage from their common Germanic ancestor, and are spoken, if we restrict ourselves to Norway and England, in societies with many shared features that impact the lives of disabled people and perceptions of disability. These features include a strong and relatively centralized state, a tradition of government-financed health care and welfare services, and a strong civil society of non-governmental organizations representing various segments of the population. Even in the comparison between these two (fairly) closely related countries, however, significant differences emerge almost immediately. The organization and financing of various governmental and non-governmental operations

12 Disability and Discourse Analysis

support. “A disabled person” has no clearer referent than “A French person”, but both phrases will tend to summon up, in the minds of readers, a referent of some sort. Is your “disabled person” the same as my “disabled person”? We won’t know that until we’ve checked; if we can’t check, the best we can do is provide an educated guess. It is not accidental that the World Health Organization calls some groups of disabled people “classic”, meaning wheelchair users, hearing impaired people, and visually impaired people (WHO, 2011). Neither is it accidental that the next sentence in its World Report on Disability stresses the need not to restrict our mental images of disabled people only to the “classic” types. Definitions of disability vary across the world. This book cannot, and will not attempt to, summarize or systematically examine them all. My examples of language use will be drawn primarily from Scandinavia, the UK, and the US, since these represent the societies, with corresponding languages, with which I am most familiar. Additional examples will be examples drawn from the rapidly growing part of Disability Studies that investigates other societies and languages. Throughout the book, however, I will try to keep in mind – and I will as the reader to try to keep in mind – that disability is not any one thing, neither in the world nor in texts. The multiple functions of language, and the ensuing multiplicity of meaning, demand this of us.

Origins of Discourse Analysis

I have already mentioned the problematic definitions of “discourse” and “discourse analysis”; now it is time to attempt a clear definition of both, as well as a brief sketch of their scholarly origins. Since this book is about one type – or rather, certain types – of discourse, the sketch is intended as background, and as a tool for contextualizing the approaches and attitudes to language that define the enterprise of discourse analysis. First, I’ll note that discourse analysis is a scholarly field , which emerged a few decades ago, through

[…] the launch of [Teun] van Dijk’s journal Discourse and Society (1990) as well as through [the publication of] several books, like Language and Power by Norman Fairclough (1989), Language, Power and Ideology by Ruth Wodak (1989) or Teun van Dijk’s first book on racism, Prejudice in Discourse (1990). (Wodak, 2001a: 4)

CDA is a field in the sense that it is defined by certain institutions, practices, power relations, and agents. It isn’t legally restricted in the way that, say, the medical field is – if you want to practice discourse analysis or say you are a discourse analyst, nobody can prevent you from doing so. However, there are certain symbolic goods that are much more restricted, including university degrees and publication in peer-reviewed journals. Access to these goods, which are necessary in order to be a discourse analyst in good standing – a discourse analyst accepted as such

Chapter 5

Counting as Disabled:

Discourses of Identity

The last two chapters dealt with some of the ways in which people are, respectively, directed towards and diverted from the category of disability and the corresponding label, as they are defined in formal and institutional contexts. Part of the point of those chapters was to show that there are many ways of being disabled in a bureaucratic and technical sense, including to be counted as disabled by the state, to qualify as disabled according to functional classification systems, and even to be disabled according to legal guidelines, without in fact identifying as a disabled person in a social and interactional sense of the term. That latter part is the topic of this chapter, which is in many ways at the heart of this book. The discourse approach to disability is in some ways an attempt to ask the following questions: why aren’t there more discussions about disability in public life? Why aren’t there more people who identify as disabled? And a corollary to these two questions must be: what is it we talk about when we don’t talk about disability? Different answers arise in different contexts. Within classical medical discourse, it is preferable not to talk about disability, because disability is in many cases synonymous with debility. For many people with ME and CFS, for instance, it is the thing at the end of the road, the thing that is defined by the lack of a cure. Very likely this is the case for many other people with chronic illnesses, people who haven’t found a language – a discourse – which accounts both for their embodied experience and for their relationship with society. As Irving Zola pointed out in 1982, there is something potentially grotesque about the notion of disability pride. His reasons had to do with the central characteristics of diseases and impairments, which, to him, did not hold up well in comparison with other bases of pride movements:

A mundane but dramatic way of characterising this phenomenon can be seen by looking at the rallying cries of current liberation movements. As the ‘melting pot’ theory of America was finally buried, people could once again say, even though they were three generations removed from immigrants, that they were proud to be Greek, Italian, Hungarian, or Polish. With the rise of black power, a derogatory label became a rallying cry: ‘Black is beautiful!’. And when female liberation saw their strength in numbers, they shouted: ‘Sisterhood is powerful!’ But what about those with a chronic illness or disability. Could we yell: ‘Long live cancer!’ ‘Up with multiple sclerosis!’ ‘I’m glad I had polio?’ ‘Don’t you

Counting as Disabled: Discourses of Identity 99

Not only is it difficult to phrase a rallying cry for the disability movement. Even if one is found, the great inherent diversity in the range of impairments that may be associated with disability is such that almost any cry risks being either too specific or too general. The disability movement is in many cases based around what the WHO termed “classical” impairment groups: visual, hearing, and mobility impairments. But these are far from the only relevant impairment types. Moreover, while all three “classical” types of impairment are intrinsically associated with ageing, they are also associated with ideal types or stereotypes of disabled people who are usually not portrayed as elderly: the blind person with dark sunglasses and white cane, the signing Deaf person, the wheelchair user with lower limb paralysis. Those are the types evoked by the signage of accessibility; those types refer to the kind of difference that is negatively valuated and must be reclaimed. When they are reclaimed, it is often with an emphasis on abilities or capabilities that aren’t necessarily compatible with ageing, or for that matter with chronic illness – the wheelchair user with a strong upper body, the Deaf person embedded in a vibrant and predominantly young signing community. Differences that are reclaimed are often conceptualized as binary and singular, so that they can be more effectively isolated and negated. The implicit argument, the recurring topos, is “like everyone else, except for this single thing ”. Being disabled becomes a matter of switching off a certain capacity, which can plausibly be viewed as unitary and distinct: seeing, hearing, walking. This elides the fact that loss of such capacities may be tied to, for example, brain injury, and far from discrete (Sherry, 2006). Absolute and consistent dichotomies are rare occurrences in the real world. A wheelchair user is no more guaranteed to be completely unable to walk than a legally blind person is to have absolutely no vision. From such confusions stem the suspicion of fakery and malingering that many disabled people regularly encounter. Another problem is that the topos of dichotomous, unitary exceptions to general ability or able-bodiedness is highly conducive to a compensatory approach to valuation. If a positive disabled identity is predicated on being “like everyone else, except for this single thing”, then, in practice, considerable pressure is put on disabled people to be better in order for a positive image to be sustained.

The Valuation of Difference: What is Being Valued?

The main topic here is valuation of difference. Disability is sometimes included on a list of identity markers that includes gender, ethnicity or race, and sexual orientation; these are all identity markers that are central to social movements, and these social movements include valuation of difference as both analytical and strategic goals. Disability is, perhaps inevitably, compared to other social categories that have connoted, and in many cases continue to connote, marginality, oppression, and resistance. That comparison is sometimes put to effective rhetorical use, though it sometimes leads only to an aporia : what is so good about disability? How, exactly,

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can it be valued? As Zola points out, all of the other social movements linked to the above categories have, to varying degrees, emphasized positive values that are connected to some form of essentialist difference, whether in the slogan-form of “female strength”, “gay pride” or “black beauty”. This is problematic in itself, to the extent that it creates ideals and norms that are difficult for many people to live up to. It is even more problematic when it forms the basis for reasoning by analogy. Essentialist differences connected with the category of “disability” are invariably negative, and essentialist differences connected with various types of impairment are overwhelmingly negative – that is why they are impairments in the first place. Exceptions do exist, such as the attempts by parts of the Deaf community to emphasize the very real cultural- linguistic difference that is coded, in part, in sign languages, and the efforts to re- describe various forms of neurological impairment as neurological difference. In the latter case, cognitive variation which is traditionally categorized as impairment is, as compensation, associated with heightened ability in some areas. Ultimately, such attempts succeed only to the extent to which impairments can be shown not to entail overall diminished ability; in this, they effectively lead to a return to the ICIDH causal chain of social handicap caused by functional disability caused by biomedical impairment. If the functional disability is in reality only a different form of functioning, the implicit argument goes, then there can be no underlying biomedical impairment, as such, and if there is a persistent social handicap, this becomes somehow more unjust or unreasonable than the handicaps experienced by people with “real” impairments. Positive valuations tied to the category of disability can always and only be associated with emergent properties of the disability experience or disability community. Cultural and artistic forms of expression, solidarity, social connectedness, a deeper or broader understanding of human life and the human condition – all of these are emergent phenomena that have disability as a potential, but neither necessary nor sufficient antecedent. This leads to the question not only of what disability identity is “for”, politically speaking, but for whom it is relevant and under what circumstances. In what kind of situations do people identify as disabled, and to what end? Where is the discourse of disability identity situated, and to purpose is it deployed? As Shakespeare puts it:

[Previously,] there was a limited range of narrative devices and themes available to people with impairment: now, new stories are being told, and we are creating ourselves for ourselves, rather than relying on the traditional narratives of biomedical intervention or rehabilitation, of misery, decline and death. (Shakespeare, 1996: 95)

In Chapter 3, we saw that there is not necessarily a contradiction between telling a story of impairment in biomedical terms, while simultaneously telling a story of one’s social and political experiences as a disabled person. To the extent that “disabled identity” has positive valuation in these circumstances, it is quite

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There is considerable distance between the field of Disability Studies and the field of medical sociology. This has been puzzling to me on a number of levels, as I count myself as a practitioner of Disability Studies who has worked closely with medical sociologists over the last few years while continuing to work on very similar problems. There are of course differences when it comes to interests and perspectives – arguably, Disability Studies is chiefly about the experiences of disabled people, while medical sociology is often more concerned with the experiences of doctors. However, that could just as easily form the basis of collaboration, with each field providing one part of the puzzle. In practice, this has not yet happened. There are still regular calls both from practitioners of Disability Studies and medical sociologists for collaboration, but that in itself is symptomatic

• the calls still have to be made on a regular basis because they are not answered.

Illness Stories and Disability Stories

The work of the medical sociologist Arthur Frank, in particular The Wounded Storyteller (Frank, 2010), is illuminating as to the key differences between approaches. Frank is one of the medical sociologists who have paid close attention to patient experiences, as the title of his book indicates. The wounded storyteller is not a professional, but a locus of personal experience. In the book in question, he or she is likewise not a disabled person. Frank provides a three-part typology of illness stories: chaos , restitution , and quest. In each case, a temporal dynamic and a paradigmatic shift is at the heart of the story, whether the shift in question is from health to persistent illness (chaos), from illness to health (restitution), or from illness to experience and insight (quest). These story types are relevant to disability experience and Disability Studies, but because they proceed from the premise of illness-as-biographical-disruption, because they presuppose a healthy, non-impaired body, they cover only part of the ground. Moreover, although Frank is certainly interested in social and interactional aspects of illness, he is chiefly concerned with the internal experience of being ill, and with an account of such experiences that can balance accounts that are clinical and made from the outside. The perspective of medical sociology provides, in this particular case, a different kind of corrective to the classically medical perspective than does Disability Studies – by emphasizing the validity of patient subjectivity, without challenging the primacy of patient identity. The relatively distinct narrative frames of chaos, restitution, and quest are all familiar from the ME and CFS narratives discussed in Chapter 3. They all share the salient feature of allowing for a return to normality, and of emphasizing a comparison with a prior or idealized former body. The narratives that emphasized the concept of disability, by contrast, were oriented towards a new normality, and a new form of coping – towards establishing a form of identity that was not linked primarily to biographical disruption, but to a tentative stability. While these could plausibly be framed as variations on the “quest” narrative, this interpretation must necessarily stretch the implied definition and time frame.

A Final Note

Discourse analysis in general and CDA in particular provides tools and methods for analysing representations and constructions of disability sourced from a variety of contexts. Their methods can treat analytical examples from social, cultural, economic, and political spheres, thus underscoring disability’s status as a phenomenon influenced by and influencing all of them. The unifying feature in the CDA approach is the view of language as an influential factor not only in shaping perceptions of the world, but framing the world so that it appears naturally amenable to certain courses of action and forms of organization. Given that disability is a phenomenon already saturated in representation – there is no shortage of disability discourse – CDA can provide tools for discussing how different representational strategies work, and what implications they might hold. This analytical approach is also a way to de-naturalize the phenomenon of disability, and to highlight both the factors that contribute to its social construction and the factors that remain relevant across contrasting representational strategies. This approach is also relevant to central debates in Disability Studies, by representing their models and theories as elements of discourse – making it clear that the theories and models do not exist independently of their representational objects. This book has emphasized certain dichotomies in the disability field. One of these is that of chronic illness versus impairment, which is arguably the most pervasive and the least productive way to divide indisputably disabled people from people who are disabled but not explicitly identified at such. The dichotomy is not baseless – it derives from organizational structures and political considerations

• but it is also shaky and inconsistent, and should be undermined further with critical analysis as well as through empirical description. There is much to be gained in describing how and in what ways disability relates to chronic illness in relation to a second dichotomy, too: that which runs between social models and medical models of disability. Here, I have argued that the dichotomy is fundamentally illusory, in that it can be maintained only with a highly particular view of two constructs called “the social model” and “the medical model” of disability – constructs that are often deployed in order to (mis-) characterize the positions of others instead of defending analyses of one’s own. The above dichotomies play out against a background of complex, socially embedded discourse, and it is against this background that they lose their sharp edges. There isn’t a social model of disability, and certainly not one that can be effectively employed across discourse realms and areas of society. Similarly, “the medical model” can only be effective by confining discussions of disability to

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