Bodies and Language

Health, Ailments, Disabilities

Vaidehi Ramanathan

• Publisher: Multilingual Matters
• Year: 2009
• Print ISBN: 9781847692351
• eBook ISBN: 9781847693877
• Topic: Languages & Linguistics
• Subtopic: Sociolinguistics
• Index: Languages & Linguistics

This book critically addresses the role of language in our collective construction of 'normal' bodies. Addressing a range of concerns linked with visible and invisible, chronic and terminal conditions, the volume probes issues in and around patient and caregiver accounts. Focussing on body conditions associated with breast cancer, Alzheimer's disease, (type-1) diabetes, epilepsy, partial hearing and autism, the book draws on a range of critical theories to contest collectively assembled notions of 'abnormality, ' 'disability' and 'impairments.' It also addresses the need for applied sociolinguists to take account of how our researching practices - the texts we produce, the orientations we assume, the theoretical grounds from which we proceed-- create 'meanings' about bodies and 'normalcy, ' and the importance of remaining ever vigilant and civically responsible in what we do or claim to do.

Chapter 1

Introduction: Why Bodies Matter

...the normal is a configuration that arises in a particular historical moment. It is part of a notion of progress, of industrialization, and of ideological consolidation of the power of the bourgeoisie. The implications of the hegemony of normalcy are profound and extend into the very heart of cultural production. ... One of the tasks of developing consciousness of disability issues is the attempt, then, to reverse the hegemony of the normal and to constitute alternative ways of thinking about the abnormal

Davis, 2006: 15

This book is about the language of 'ailing' bodies and by extension 'disabilities'. It advocates that we move issues around ill-health and 'abnormal' body functionings away from the incidental space they occupy in the field to one as central as class, gender, ethnicity and sexuality. Specifically, it brings debates about bodies -- and related issues about illnesses, 'normalcy', and 'able-ism' -- into focus by underscoring ways in which our language and texts of body matters construct and are constructed for us by a range of discourses, including societal, bio-medical and poststructuralist ones. Drawing on a variety of variously gathered materials, of people and caregivers coping with various kinds of ailments and 'disabilities' (those relating to actual body breakdowns as well as breakdown of language skills), the book pierces the general veil of silence that we have collectively drawn regarding language issues of and around body issues and our reluctance to speak about how some of our most intimate body (dis)functions impact our everyday living and collective sense of 'normalcy'.

Applied sociolinguistics has, over the years, produced scholarship in medical settings and on public health issues (Hall et al., 2006; Higgins & Norton, 2010; Norton & Mutonyi, 2007; Sarangi & Roberts, 1998), and aging-related concerns have been addressed as well (Davis, 2005a; de Bot & Makoni, 2005; Guendouzi & Muller, 2005; Hamilton, 1994, 1999; Ramanathan, 1997) from both institutional and communication-related points of view (cf. Fine, 2006). The present volume contributes to this area while also seeking to break new ground: first, it brings in discourses around bodies per se into the field; this is a realm the field has not adequately addressed. Second, it ushers in discussions about bodies by critically addressing the language by which experiences around bodily breakdowns and ailments occur. This exclusion of the material body may be, in part, both a reflection and result of social constructionism, which has gained recognition in numerous disciplines over the last decade. As Longhurst (2001) points out, while social constructionists have helped subvert the long-standing notion that bodies are simply 'natural' or 'biological', they have, in other ways, tended to render the body incorporeal, fleshless, fluidless, little more than a linguistic territory. The materiality of bodies, from such points of view, becomes reduced to systems of signification.

From the points of view of people with ailments, disabilities and disabling language skills, though, bodies are all about being grounded in the world, so this book's primary concern is with bringing the body back (Williams, 1999) and doing so by addressing relevant language issues. The everyday functioning of persons with a chronic ailment such as epilepsy or type-1 diabetes depends crucially on how they can make their 'malfunctioning' body parts work for them (experimenting with dosages of medications or packaging insulin pumps under their clothes, thus rendering them and their accompanying tubes invisible), so that their conditions appear 'normal'. These conditions get picked up by biomedical and societal discourses in very specific ways that disallow open articulations of how these people linguistically engage with the world through their ailing bodies. In the case of women who have survived breast cancer, another condition that exerts pressure on presenting a 'normal' body, by among other things wearing a prosthesis when they have had mastectomies, are issues of a different sort, those imposed by male-dominated discourses about what an 'attractive' woman's body should look like. A body with only one breast tends immediately to be linguistically categorized as 'unattractive' and 'asexual'. Needless to say, flowing thickly through these issues 'enforcing normalcy' (Davis, 1995), where patients feel compelled to present their bodies in specific ways in public, are societal stratifications relating to ethnicity, race, gender, class and sexuality, with some or a combination of some of these stratifications working to disadvantage people even more (Wilmoth et al., 2008).

Along with addressing issues pertaining to the breakdown of the physical body through particular language use, the volume examines ailments relating to the breakdown of language skills. While people with (type-1) diabetes, epilepsy or breast cancer have had their bodies break down, their general language skills are not rendered problematic as a result of these breakdowns, as in the case of people with Alzheimer's disease or autism, or partial hearing. People writing about their daily engagements with the world when in the early stages of Alzheimer's disease speak about flashes of incoherence in 'coherent' moments, about not being able to tell the front of a dress from the back or about not being able to find one's way home. Those with autism write of being trapped in silence, of the unending frustrations of dealing with the languaged world that does not understand unceasing silence, of never fully being able to engage with the emotional since it is primarily through spoken language that our engagements with other humans happen. Bodies and our everyday negotiations with them, in these cases, assume completely different hues compared to those with chronic ailments or prostheses aspects of one's brain, the material conditions of one's body and the communities one engages with form a different kind of complex nexus.

It is this language of and human voice behind an ailment or 'malfunctioning' body part that is crucial for us in applied sociolinguistics to hear and that is central to this book. Specifically, it is about, among other things, both the language of and accounts (oral and written) produced by and written of such people about their and their loved ones' fluid, volatile bodies whose messy, gaseous, watery, tumorous surfaces seep and leak and evade control (Longhurst, 2001), whose language skills are either breaking down or whose everyday interactions with the world are traumatic because of the individual not being able to use language in particular ways. The body -- flesh here -- is the site of engagement, and it is the inscription of social discourses on it, and how it shapes individual and collective notions of selves and disabilities that is crucial to uncover. Language is central here since it is not only the medium through which our engagements with our worlds happen but also the medium through which our collective notions of disabilities and 'able' bodies get discoursed into place.

However, herein lies a caveat to which we need to pay very close attention. While illness and impairments get languaged in particular ways, illness and disability in themselves are non-discursive conditions. Sontag says:

[I]llness is not a metaphor, and ... the most truthful way of regarding illness -- and the healthiest way of being ill -- is one most purified of, most resistant to, metaphoric thinking. Yet it is hardly possible to take up one's residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped. (Sontag, 1974: 3)

This idea -- that the body suffers a breakdown or struggles to function with the most ordinary of acts such as feeding or dressing oneself -- happens regardless of language used, is crucial. There is a slippage here between the ailing condition and the ways in which it gets languaged. The experience of falling ill or having one's body break down precedes the languaging of it, and the only way an ailing person has to speak of her condition is through colonizing medical tropes. These societal and medical tropes are hard to defy since they assume vitalities and legitimacies and are reproduced all the time, a point that will become clearer not just in the following sections of this Introduction, but in every chapter of the book as well.

The book, then, seeks to do both: create contexts whereby corporeal experiences of and around body breakdowns find articulation while also simultaneously moving forward to interrogate the language and discourses we researchers use and draw on to text health and disability-related issues. Such an endeavor whereby we run a parallel strand that cross-questions our text- and meaning-making endeavors is not intended to undercut the import of hearing marginalized voices (of hearing them and what they say); instead, it is to keep our researching practices honest and transparent (more on this in the following sections and in the various chapters of the book; cf. Ramanathan, 2005b, 2008a).

Bodies, Policies, Language and the Reproduction of 'Normalcy'

Lennard Davis (2006, 1995) maintains that to understand the 'impaired'/'ailing' or 'disabled' body, one must return to the idea of the 'normal' body, since problems in issues around 'disabilities' have to do with the way in which 'normalcy' is constructed to create the 'problem' of the disabled person. The cluster of words -- 'normal', 'normalcy', 'abnormal', 'deviant', 'able', 'able-ism', 'disabled', 'disability' -- emerged in the English language at a particular time, with the modern uses of 'normality' and 'normalcy' appearing in the mid-1800s, getting sedimented in all kinds of domains and acquiring legitimacy through the discourses of scientific rationalism. In relation to human bodies, the notion of a 'norm' emerges in a host of expectations, including having 10 fingers and 10 toes, to women having two breasts, and to having all of one's limbs and faculties.

Needless to say, these expectations -- that comprise the 'norm' -- are held in place by a whole range of body/health-related policies -- including formal ones around health insurance that dictate who can and cannot be 'covered', and those around funding for disabled access such as providing for wheelchair ramps, as well as a host of informal attitudes and assumptions about 'normally' functioning bodies that emanate from policies being held in place. And these do not just extend to physically 'apparent' disabilities, but to more invisible conditions as well, such as those relating to memory loss (as in the case of Alzheimer's disease) or 'inappropriate' social behavior (as is often the case in autism; see the United Nations policies and explications of this more-encompassing view of 'disability').

The linguistic terms by which such slottings occur beg uncovering. As disability scholarship reveals, scholars vacillate between terms of reference: 'people with disabilities', 'people with impairments', 'activity limitations' and the indecision there is about which terms to use consistently points partially to deep-seated discomfort with the limitations of English language in this realm (Davis, 2006; Linton, 2006). As Devlin and Pothier (2006) point out, in early disability research, the terms 'handicapped' and 'disabled persons' were common, but seemed to convey the idea that the entire person was disabled because of a specific impairment. This, apparently, led to the adoption by the Canadian federal and provincial government of an explicit policy to use the term 'persons with disabilities' while strongly discouraging 'disabled persons'. The term 'disability' itself, though, is not without problems either. What constitutes disability? Does it mean obvious physical impairment? At what point are medical conditions part of this term? What about invisible chronic medical conditions such as epilepsy and diabetes? Or mental disabilities and ailments such as Alzheimer's disease or autism? The term is crucial and fraught since it partially determines how people identify themselves or wish to be identified. But more importantly, what it points to are our assembled notions of 'normalcy', which has entire ideologies orbiting around it (Davis, 2006). As will be evident, this book assumes any and all ailing conditions that 'deviate' from the 'norm' and that call our attention to the assembled nature of the 'norm' as falling within the purview of 'disability'. I am aware that accepting all conditions 'deviating from the norm' carries an inescapable component of complicity, but the attempt is to critique it from within. Uncomfortable as I am with this term, I use it strategically to bring bodies, ill-health and 'disability'-related issues to the center and to render 'normalcy' to the margins1 (see endnote 1 for how the Director of the World Institute on Disability addresses this term).

Policy issues around disability are predicated on issues of equality and difference and it seems important to bring these into a discussion of ill-functioning body experiences as well (this book does not address health policies per se, although it has implications for it; for a fuller discussion, see the forthcoming special issue of Language Policy devoted to health-related concerns). As Pothier and Devlin (2006) point out, a goal of critical disability theory is not to theorize disability to where its relevance to the larger world of engagement is lost, but to address issues of empowerment, of making room for alternate views about bodies, about countering dominant tropes from the medical worlds and about creating contexts of equality. A key point here is not just to focus on impairments or functional 'inadequacies' but to attempt, among other things, to raise awareness about how patients' bodies get positioned and constrained by policies, how health policies are themselves instituted in place by particular language use, how patients' voices and experiences with their bodies run counter to those held by the medical world and how institutionalized discourses in the world of pharmacists, doctors, nurses and medical personnel legitimize dehumanizing orientations to bodies and ailments (see Collins & Slembrouck, 2006; Slembrouck, 2005). This is a crucial point to remember since disability often gets viewed in individualistic terms, and the ailing person and his/her family feel compelled to scale what seem like insurmountable bureaucracies. Having had to lobby with health insurance policies to get an insulin pump -- a small computerized pancreas -- for my partner meant endless calls, memos to doctors and policy agents, and verifications that the pump was integral to his survival, a process that was exhausting. My point here is that viewing illness/disability in individualized ways runs the risk of framing it as personal bad luck, a risk that leans towards an orientation of charity and pity. Shifting focus and viewing disability in terms of societal views about 'normalcy', on the other hand, opens up a Foucauldian space that inducts difference, equality and inclusion into the discussion, making us squarely face how we contribute to upholding collective notions of 'normal' bodies.

Bodies, Identities: Ill-health, Disability and Citizenship

Central too are issues of citizenship and policies that partially dictate how bodies are policed. While debates about citizenship are gaining ground in applied linguistics, with scholarship seeking to go beyond normative definitions of the kind of passport one holds (e.g. see Shohamy (2006) in relation to language proficiency and citizenship tests or Ramanathan (2007, 2009) for a discussion of citizenship in relation to voices silenced by history and historiography), the term 'citizenship' seems to be now opening up to address the 'capacity to participate fully'. And, as we know, it is in terms of the political, social, cultural and the everyday that this capacity is tested. Such a definition moves debates about citizenship away from its commonplace understanding of individual status to it being a practice that gains legitimacy from ideologies that perpetuate it and keep it circulating. As Devlin and Pothier point out, such a view

... raises questions of access and participation, exclusion and inclusion, rights and obligations, legitimate governance and democracy, liberty and equality, public and private, marginalization and belonging, social recognition and redistribution of sources, structure and agency, identity and personhood, and self and other.... (Devlin & Pothier, 2006: 2)

Devlin and Pothier (2006: 2) use the term 'dis-citizens' to speak to a disabling citizenship, a theme that this book picks up in different ways. The politics of and around who gets identified as 'normal' or 'disabled' as well as who identifies him/herself as such seems crucial to probe, since so much is at stake. As Wendell (1996) points out, it is important to keep in mind that some people who consider themselves 'ailing' or 'disabled' are not identified as such by everyone else, and not everyone who is identified by other people as 'ill' or 'disabled' (for purposes of entitlement, discrimination or any other) considers him/herself disabled. While on the one hand, the label of 'disability' is disabling, on the other the social/official/legitimized recognition of disability determines the practical help a person receives from doctors, government agencies, insurance companies, charity organizations, and often families and friends. Moreover, being identified by others as 'disabled' works to affirm disabling experiences, just as denial of particular conditions can cause stress, alienation and despair in people (who seek validation, but do not get it; cf. Wendell, 1996). 'Dis-citizenship', then, is deeply entangled in issues around policies and recognition on the one hand with concerns about over-slotting and discrimination on the other.

Dis-citizenship seems also to be tied to issues about who can speak for the ailing/'disabled' person. Can caregivers and partners speak for their ailing/'disabled' loved ones, or are they by doing so 'dis-abling' them, casting them into the shadows of dis-citizenship? From such a point of view, my speaking of my partner's serious chronic condition (in 4) can be seen as questionable. After all, he is the one who has the condition, I don't. But perspectives of family and caregivers are crucial to address too, since they negotiate with the condition as well (albeit differently) and because frustrations of caregivers with larger communal inequities around condition can be and are often the fuel that motivates societal change.

What all of this brings us to are issues of identities and ways in which they get scripted on the basis of similarities and/or differences. Emphasizing similarities between people with and without serious ailments and/or disabilities mitigates the dangers of exclusionism by, among other things, validating their rights, thus creating contexts for enhanced inclusionism to all aspects of living. While useful up to a point, such an orientation does not directly challenge the 'normal' world, just as women emphasizing their similarities to men and moving into traditionally male arenas of power does not directly challenge the assumed male superiority. Voicing differences from the dominant group, on the other hand, can foster a togetherness, a solidarity and sense of unity among those who share them, a unity that makes it easier to counter the devaluation of those differences by the dominant group. Furthermore, as Wendell (1996) points out, some people with 'unusual' bodies may not want to be assimilated into 'normal' social life or non-disabled groups for a range of complex reasons, including perhaps fear that unless social values are changed quite radically, they will always be at a disadvantage (with their 'difference' being prominent) in mixed contexts, or because they prefer the separateness they have worked hard to create and the organizations that respect it. A group separateness permits more open challenges of the dominant 'givens' regarding 'normal' bodies. 'Values that are highly esteemed in non-disabled culture, such as the value of independence from the help of others, can be more safely questioned and debated in a context where the stereotype of all people with disabilities as dependent and incompetent is known to be false' (Wendell, 1996: 75).

Respecting the need for emphasizing similarities in some contexts, while acknowledging the need for difference on the other, this book attempts to create textual space whereby the language and accounts -- captured partially through the hearing and telling of localized dis-citizenship through body corporealites -- are more evident (thus challenging our assemb...

Table of contents

• Cover
• Title Page
• Copyright Page
• Dedication
• Contents
• Acknowledgments
• Chapter 1 Introduction: Why Bodies Matter
• Chapter 2 On Metaprescriptive Utterances: Cancer, Breasts and Gazes
• Chapter 3 Scripting Selves: (Auto)Biographical Writing of Alzheimer Patients and Caregivers
• Chapter 4 Poststructuralist Discourses and Chronic Ailments: (Type-1) Diabetes, Epilepsy and Body Breakdowns
• Chapter 5 Communication Challenges: Autism, Partial Hearing and Parental Choices
• Chapter 6 Texts and Meaning-Making: Critical Revisitations in Ailment/Disability-Related Research
• Chapter 7 Critical Ailment Research in Applied Sociolinguistics: Power, Perception and Social Change
• References
• Index