Bodies and Language: Health, Ailments, Disabilities

Bodies and Language

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Bodies and Language Health, Ailments, Disabilities

Vaidehi Ramanathan

MULTILINGUAL MATTERS Bristol • Buffalo • Toronto

Library of Congress Cataloging in Publication Data A catalog record for this book is available from the Library of Congress. Ramanathan, Vaidehi. Bodies and Language: Health, Ailments, Disabilities/Vaidehi Ramanathan. Includes bibliographical references and index. 1. Social medicine. 2. Sociolinguistics. 3. Sociology of disability. I. Title. [DNLM: 1. Kinesics. 2. Disease--psychology. 3. Human Body. 4. Language. 5. Posture. BF 637.N66 R165b 2010] RA418.R33 2010 362.1–dc22 2009033793 British Library Cataloguing in Publication Data A catalogue entry for this book is available from the British Library. ISBN-13: 978-1-84769-236-8 (hbk) ISBN-13: 978-1-84769-235-1 (pbk) Multilingual Matters UK: St Nicholas House, 31–34 High Street, Bristol, BS1 2AW, UK. USA: UTP, 2250 Military Road, Tonawanda, NY 14150, USA. Canada: UTP, 5201 Dufferin Street, North York, Ontario M3H 5T8, Canada. Copyright © 2010 Vaidehi Ramanathan. All rights reserved. No part of this work may be reproduced in any form or by any means without permission in writing from the publisher. The policy of Multilingual Matters is to use papers that are natural, renewable and recyclable products, made from wood grown in sustainable forests. In the manufacturing process of our books, and to further support our policy, preference is given to printers that have FSC and PEFC Chain of Custody certification. The FSC and/or PEFC logos will appear on those books where full certification has been granted to the printer concerned. Typeset by Techset Composition Ltd., Salisbury, UK. Printed and bound in Great Britain by Short Run Press Ltd.

For Jody, again For Aasha, again Again and yet again . . .

Contents

Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix 1

Introduction: Why Bodies Matter . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

2

On Metaprescriptive Utterances: Cancer, Breasts and Gazes . . . . 18

3

Scripting Selves: (Auto)Biographical Writing of Alzheimer Patients and Caregivers. . . . . . . . . . . . . . . . . . . . . . . . . . . 40

4

Poststructuralist Discourses and Chronic Ailments: (Type-1) Diabetes, Epilepsy and Body Breakdowns . . . . . . . . . . . . . . . . . . . . 60

5

Communication Challenges: Autism, Partial Hearing and Parental Choices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 80

6

Texts and Meaning-Making: Critical Revisitations in Ailment/ Disability-Related Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95

7

Critical Ailment Research in Applied Sociolinguistics: Power, Perception and Social Change . . . . . . . . . . . . . . . . . . . . . . . . 117

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125 Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 135

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Acknowledgments

I thank the Breast Cancer Fund for permission to use their picture. I also thank Anna Roderick at Multilingual Matters for her gracious and unfailing support in seeing this project through to completion. To my family, friends and colleagues: you all know what this volume means to me. Our conversations over the years ping across the sentences and pages of this book. You have my sincere gratitude. Vaidehi Ramanathan July 2009

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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 agingrelated 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 1

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(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

Introduction: Why Bodies Matter

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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

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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

Introduction: Why Bodies Matter

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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

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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

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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 Chapter 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

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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 assembled ‘norms’) while also probing how such localized instances open up issues of our textand meaning-making practices. It seems crucial now to move body-related scholarship in applied/sociolinguistics to more prominent spaces while also openly and self-consciously addressing the language by which these issues get written about. As the various chapters show, such parallel tracks of cross-questioning our very research practices even as we engage in them launches us onto a field whereby various aspects of our text-making endeavors become transparent simultaneously. Needless to say, our language about bodies, ill-health and ‘disabilities’ hinge forever on what we render as ‘visible’ and worthy of attention, and the next section addresses this issue, since it is partially through what is perceptible and in circulation that notions of ‘normal’ gain their energy and power.

Bodies as Corporeal Entities: Theoretical Orientations Assuming both Merleau-Pontian and Foucauldian positions (indeed, the two are not contradictory) as overarching points of reference, while

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also drawing on other relevant critical theories, this book insists that not only is the body not an object, but also it is the condition and context through which we have relation to the world. It is also ‘disciplined’ into docility (Foucault’s docile bodies) by an intricate machinery of power that subjugates it, explores it, breaks it down and rearranges it. In what follows, I offer an explanation of how both critical orientations run like thick streams through the present project. From a Merleau-Pontian orientation, both immanent and transcendent, the body is at once a phenomenon experienced by us, thus positioning us in certain ways that makes relations between us and the world assume distinct articulations, and at the same time also agentive inasmuch as it shapes the world. ‘Body’ here, of course, includes the mind, a necessary inter-relation that informs connections between consciousness and nature, inside and outside, perceiving and perceived. Indeed, MerleauPonty begins with the postulate that: The perceiving mind is an incarnated body. I have tried . . . to re-establish the roots of the mind in its body and in its world, going against the doctrines which treat perception as a simple result of the action of external things on our body as well as against those which insist on the autonomy of consciousness. These philosophies commonly forget – in favor of a pure exteriority or of a pure interiority – the insertion of the mind in corporeality, the ambiguous relation with our body, and correlatively with perceived things . . . And it is equally clear that one does not account for the fact by superimposing a pure contemplative consciousness on a think-like body . . . Perceptual behaviour emerges . . . from relations to a situation and to an environment which are not merely the working of a pure, knowing subject. (Merleau-Ponty, 1963: 3–4) So, mind and body are not separate entities (Gee, 1992); neither is the body subject or object. Perceptions of/about our bodies are not external to our flesh, happening from the outside but part of a larger amorphous mass that impacts both body and self presentations; perceptions emerge from ‘relations to a situation’ which always involve our bodies and minds and are at once nowhere and everywhere. Also, they emerge in and through distinct linguistic articulations and are, thus, both ‘form giving’ and ‘form bestowing’. These ‘form-giving’ and ‘form-bestowing’ flows happen in split seconds, choices the speaker (and researcher) makes about what of the body to render visible and audible. Stepping away from body polarities – inside–outside, well–ill, able–disabled – Merleau-Ponty explores the inter-relations of such

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polarities through numerous criss-crossings between speaker, the ‘visible’, the audible, the audience, the toucher, the touched and their overall defiance of separate, bounded identity spaces. As Grosz (1994: 96) points out, ‘he attempts a return to prediscursive experience before the overlay of reflection, before the imposition of metaexperiential organization and its codification by reason’. And such a quest for a ‘bare-bones’ sensibility does not elide the social or the political; instead the aim here is to search the sensibility that permits insights into interpenetrations that make her open up to and be completed by the world. The ‘visible’ or the ‘perceptible’ that such a corporeal view hinges on is predicated on what he calls a ‘concretion of visibility’, a notion that has important implications for body breakdowns and disabilities. He says that such visibility: is not an atom . . . in general a visible is not a chunk of absolutely hard, indivisible being, offering all naked to a vision which could only be total or null, but is rather a sort of straits between exterior horizons and interior horizons, ever gaping open, something that comes to touch lightly and makes diverse regions of the colored or visible world resound at the distances, a certain differentiation, an ephemeral modulation of this world, less a colour or a thing, therefore, than a difference between things and colors, a momentary crystallization of colored being or of visibility. Between the alleged colors and the visible, we would find anew the tissue that lines them, sustains them, nourishes them, and which for its part is not a thing, but a possibility, a latency, and flesh of things. (MerleauPonty, 1968: 132–133) What is ‘apparent’ through language – what makes itself manifest, then – hinges on a very particular discourse of ‘visibility’, one that assigns a literal orientation to language (Grosz, 1994). Proceeding from the assumption that ‘visibility’ is not an identifiable block, a framed, neat set of categories, but one that hinges on what we humans zoom in on and render ‘visible’ through language, the volume, through the languaging and texting of these body-related experiences, casts light on particular norms that shape our visual field, how they in conjunction with other societal and bio-medical tropes become the ‘typical’ or ‘normal’, and how our subject–object dichotomies about our bodies emerge from polarities we have collectively assembled into existence through language. Ailments, ‘disabilities’, able-ism, ‘normalcy’ and ‘deviance’ are arbitrarily constructed notions and have all manner of implications for how we relate to bodies, to the world, to each other (Davis, 1995).

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It is here that Foucauldian notions of docile bodies seem relevant. While the flashes of insights that emerge from the chapters are Merleau-Pontian momentary crystallizations, tissues between emergent ‘alleged colours’ that are evoked through articulations of experiences of and around bodies, they are also insights that drive home the colonizing nature of medical discourses and apparatuses. The discipline imposed by the medical world can be seen to create complex spaces that are at once architectural, functional, and hierarchical. It is spaces that provide fixed positions and permit circulations; they carve out individual segments and establish operational links; they mark places and indicate values; they guarantee the obedience of individuals . . . . They are mixed spaces: real because they govern the disposition of buildings, rooms, furniture, but also ideal, because they are projected over this arrangement of characterizations, assessments, hierarchies. (Foucault, 1972: 148) Whatever sense we have of our bodies being disciplined and that too in very particular ways by the medical world has to be understood in terms of what of the ailing person’s experiences and body he/she is not permitted to articulate, or if allowed then only in certain ways (all nuances of dis-citizenship). The experience of the ailing person is taken over by the spaces that comprise the medical world – the doctor’s offices, arrangement of furniture, the assessments and diagnoses – and so the articulations of body-related experiences have to be understood against this backdrop, since they assume particular hues because of power and social control that institutions exert (a Foucauldian point that applied linguists have addressed; cf. Sarangi & Roberts, 1998; Slembrouck, 2005). But this emphasis on body experiences/accounts does not mean that accounts can be unproblematically accepted as ‘truths’. As we have just seen, because experiences are affected by and articulated within social, historical and cultural forces, there is no exterior point from which to gauge them. Also, experiences are located somewhere between minds and bodies, a point that gets partially reflected in the ordering of the chapters (where the reader will move from a piece on breast cancer that focuses on the ‘physicality’ of the body to one following it on the diaries of Alzheimer patients, where more ‘mentalistic’ concepts such as memories take center stage). Much of our understanding about them (about bodies or any other issue for that matter) emerge, as I just said, out of what we identify as ‘discernable’ and ‘locatable’, a point that brings us back in a loop of sorts to Merleau-Pontian views of visibility and perception. What emerges as a body/ailment account at any given time has to be understood amid a host

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of contextual issues and societal tropes that render the account audible and visible, including audience questions as well as gender, ethnicity and sexuality. Furthermore, the audibility and visibility of accounts impact and shape audiences – genderizing them, or highlighting aspects of their ethnicity or sexuality, sometimes all at once (Blommaert, 2005; Mills, 1994), positionings that are simultaneously distinct and real. Momentary and fragmentary as they are, the question of the overall relevance of experiences and their accounts arises: why are accounts important? Surely, it is not just because they provide examples to illustrate theories. No indeed. It is because they also allow us to point to fissures in theories. They allow us to see how particular theoretical orientations fall short in certain contexts, how theories – sweeping as they tend to be – need to be brought into the explication of accounts with vigilance, and how gaps between theories and ‘realities’ become ways of re-theorizing, of nuancing existing orientations so as to laminate canvases differently to the point where they acquire other hues. It is to this dialectic that the various chapters in this book are committed to in different ways. It seeks to make both theorizing and accounts more aware of their temporal entrenchments, more responsible to its provocations and elicitation, and at the same time, paradoxically, more relevant and more real. Phenomenology and power, Merleau-Ponty and Foucault, are then not just linked, but the link may indeed be circuitous. What we see/hear/ validate/text (deem ‘normal’, ‘worthy’) are what also attain power and reification by both us (author/readers/researcher) and the communities of which all are a part. Indeed, the very entextualizing (Bauman & Briggs, 1990) that upholds body ‘norms’ in communities informs this book: the particular accounts that I hold up for attention are culled deliberately, carefully decontextualized so as to render the discourse from which it emerges more visible. Contrary to the more usual manner to contextualizing texts (paying attention to the background, participants, structures, ambient noise), entextualizing becomes a powerful way by which to lift a text out of bio-medical, societal, poststructuralist streams – to both acknowledge the history and sociopolitical tendrils it carries, while also recognizing how its decentered nature sheds light on what remains invisible, unspoken, silenced (I address this in relation to ‘experience’ and its varied articulations in the concluding chapter). A key issue here is that we need to get beyond the Kantian mind–body dualism (a dualism that I ironically do need to draw on strategically in the various chapters even as I say we need to get beyond this!); ailments are not so much in the ‘head’ or in the remainder of the torso, as they are in bodies and the world, with the brain being as much a part of the body as breasts or toes and with

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negotiations around inequities having everything to do with matters concerning ill-health, ‘disability’ and ‘normalcy’. As will soon be evident, each chapter will end with a quote from both theorists and while these quotes may seem disjointed from the rest of the chapter, they are poised there deliberately to invite the reader to engage in a hermeneutic filling-in where readers string for themselves strands of visibility and inequity, perception and power, and are left (one hopes) with echoes of the inescapability of both.

Layout of the Book Proceeding with addressing the more ‘physical’ aspects of bodies, Chapter 2 addresses themes relating to cancer. Taking up what Lyotard would call some key metaprescriptive utterances (Lyotard, 1984) around breast cancer, it addresses (1) chemotherapy, (2) amputation and (3) prosthesis to argue that these terms elide the lived, material, corporeal realities around bodies and the spillage that cancer entails. Drawing on feminist and other philosophical perspectives, the chapter offers alternate critical interpretations of these terms that permit us to begin dis-assembling our collective ideas about ‘disability’ and ‘normalcy’ while also raising concerns relating to medical gazes, (male) fetishism about breasts and societal notions about ‘abject’ bodies. The chapter also addresses ways in which breast cancer patients and their partners wrestle with issues around ‘altered’ bodies (whether to go in for reconstructive surgery or not, what a body with only one or no breast might be like, the extent to which their choices are governed by societal discourses about ‘normal’ attractive bodies). Moving towards the supposedly more ‘cognitive’ realm of memories and Alzheimer’s disease, Chapter 3 offers an examination of diaries kept by Alzheimer patients and their partners. It explores ways in which diary writing becomes simultaneously an agentive way by which a sense of ‘self’ gets scripted (a point underscored in the second language learning by Norton (2000) and by Shenk (2005), Davis (2005b) and Pope and Ripich (2005) in Alzheimer-related work in the applied linguistics) since memory is fast slipping away, while also pointing to the fluid nature of identities as patients struggle with diminishing language and remembering skills. Specifically, the chapter explores how two themes – repetition and (sure) signs, and traces and intentions – crucially inform their need to text their elusive hold on language and memories into place, making us take note of how in contexts of disabilities and chronic ailments texting, and to some extent, fixing, a sense of self may be a critical way of surviving and coping and stalling last shadows. In terms of the larger arguments of this book,

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this chapter directly addresses the experiences of Alzheimer patients and their partners as they struggle with memory loss. The diary accounts allow us to understand Ricouer (1992) more fully when he says that much of identity emerges from a comparison of itself, and that it is through such comparisons in different times that we form ideas of identity and diversity. As he points out, when we insist that something be the same or not, it refers always to something that existed such a time in such a place, when it was certain at that instant, was the same with itself. Moving back into the space of physicalities, Chapter 4 addresses experiences around body breakdowns, especially in relation to two chronic, invisible ailments, namely type-1 diabetes and epilepsy. It argues that biomedical discourses, from which societal discourses draw their strength, have emphasized malfunctioning body parts, and have made little room for humanistic articulations of bodily breakdown. Likewise, some strains of poststructuralist discourses on bodies in their tendency to emphasize the performative aspects of bodies and to see experience as constantly under erasure make little room for bodily breakdowns. The chapter argues for the need for applied linguistics in general and aging-related work in particular to create interstitial spaces that eschew both the dehumanizing rhetoric of bio-medical discourses and the erasure of experiences as per some strains of poststructuralist thought. It also addresses some tensions relating to the fixing of experiences – how the recording of them runs risks of sedimentizing them – and of exploring ways of rendering them fluid. Moving into the realm of communication-related concerns, Chapter 5 addresses issues relating to intentions – how and whether we are ever able to fully communicate what we ‘intend’ through language – and ways in which autism and deafness/partial hearing complicate our understandings of this term and its usage. Drawing on Lacanian, Bakhtinian and Vygotskian thought, the chapter partially addresses parents’ accounts of initiating autistic and partially hearing children into ‘normal’ worlds. Particularly, it addresses ways in which so much of everyday communication depends on our individual readings of other people’s intentions and how this space of ‘what we intend’ is far murkier and inchoate than we realize. Chapter 6 shifts focus by turning attention to our researching practices about bodies and disabilities. Advocating a position of self-critique, whereby we revisit our old research sites to dis-assemble our prior thinking in relation to our current cognitions, it offers, among other things, a critical revisitation and Derridean interpretation of one of my previous long-term, ethnographic endeavors involving extended work with the memories and life histories of patients suffering from Alzheimer’s disease. Gathered over the span of three and a half years, this body of my research was devoted to

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countering several psycholinguistic strains characterizing Alzheimer speech. Revisiting that work given my current cognitions raises, among other things, Derridean questions about ‘originals’. If it seemed that the scholarship first produced was the ‘original’, is the (present) paper produced as a result of critical re-visitation an original of a different, receding (or progressing) kind? Uncovering ways in which I, in retrospect, interpret Alzheimer’s discourse from a Derridean perspective raises critical issues relating to our evolving cognitions and knowledge-making practices. In other words, what is the status of claims we make in the course of our research and how do these impact disciplinary ideologies? The chapter also raises quasi-philosophical questions about the nature of ‘texts’, ‘originals’ and ‘presences’, ‘truths’ and the importance of seeking ways to render our texting about disability issues more fluid, since neither ‘disabled’ person or researcher or our interpretations of data stay stable and in place. As the ‘concluding’ piece – although, as we know, there are no real conclusions to researching, writing, thinking – Chapter 7 discusses, among other things, issues related to the assembling of texts and meanings around ailments and disabilities, and what critical ailments-related research might look like in applied linguistics. It also revisits issues relating to ‘normal’ bodies, ‘dis-citizenship’, access, and exclusionism (the last two in relation to unequal access to a community’s health resources and ways in which they get played out along lines of gender, ethnicity and sexuality), and reiterates the key positions of the book, namely that (1) Corporeal, material and language-related issues around bodies matter. (2) The language of ailments/disability experiences and body breakdowns matter. (3) How research on ailment/disability issues allows us to move our thinking about text- and meaning-making to other planes matter. (4) And contesting societal views about ‘normal’ bodies and ‘normal’ language competencies matter perhaps most of all.

Afterword As promised, two quotes by which to commence the filling-in so crucial to contesting (Foucauldian) inequities around bodies and ailments, and so much a result of our (Merleau-Pontian) perception and our collective insistence on rendering some things more visible and audible than others: We must also describe the institutional sites from which the doctor makes his discourse, and from this discourse derives its legitimate source and point of application (its specific objects and instruments of verification). In our societies, these sites are: the hospital, a place of

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constant coded, systematic observation, run by a differentiated and hierarchized medical staff, thus constituting a quantifiable field of frequencies; far less numerous observations, but which sometimes facilitates observations that are more far-reaching in their effects, with a better knowledge of the background and environment; the laboratory, an autonomous place, long distinct from the hospital, where certain truths of a general kind, concerning the human body, life, disease, lesions, etc, which provide certain elements of the diagnosis, certain signs of the developing condition, certain criteria of cure, and which makes therapeutic experiment possible; lastly, what might be called the ‘library’ or documentary field, which includes not only the books and treatises traditionally recognized as valid, but also all the observations and case histories published and transmitted, and the mass of statistical information (concerning the social environment, climate, epidemics, mortality rates, the incidence of diseases, the centers of contagion, occupational diseases) that can be supplied to the doctor by public bodies, by other doctors, by sociologists, and by geographers. (Foucault, The Archeology of Knowledge: 51–52) And The body is the vehicle for being in the world, and having a body is for the living creature, to be intervolved in a definite environment, to identify oneself with certain projects and be continually committed to them. In the self-evidence of this complete world, in which manipulatable objects still figure, in the force of their movement which still flows towards him, and in which is still present the project of writing or playing the piano, the cripple still finds the guarantee of his wholeness. But in concealing his deficiency from the him, the world cannot fail simultaneously to reveal to him: for, if it is true that I am conscious of my body via the world, that it is the unperceived term in the centre of the world towards which all objects turn their face, it is true for the same reason that my body is the pivot of the world: I know that objects have several facets because I could make a tour of inspection of them, and in that sense I am conscious of the world through the medium of my body. (Merleau-Ponty, Phenomenology of Perception, 1962, 94–105) Notes 1.

The following is a fairly broad understanding of disability and one that informs this book, and one that is adopted by the United Nations: ‘Most people believe they know what is and is not a disability’, says Deborah Kaplan, Director of the World Institute on Disability. ‘If you imagine “the

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disabled” at one end of a spectrum and people who are extremely physically and mentally capable at the other, the distinction appears to be clear. However, there is a tremendous amount of middle ground in this construct, and it’s in the middle that the scheme falls apart’. Things like facial scarring, ‘although they cause little or no functional or physical difficulty for the person who has them’, constitute major social disabilities. ‘Stigma and stereotypes [play a large role in] other disabilities, such as mild epilepsy and not having a “normal” or acceptable body size’, says Kaplan. What distinguishes a socially ‘invisible’ impairment – such as the need for corrective eyeglasses – from a less acceptable one – such as the need for a corrective hearing aid or the need for a walker? Functionally, there may be little difference. Socially, some impairments create great disadvantage or social stigma for the individual, while others do not. Some are considered disabilities and some are not. The following examples further illustrate the difficulty of defining disability without consideration of social factors: • A person who has a cochlear implant. • A person who has a digestive disorder that requires following a very restrictive diet and following a strict regime of taking medications, and could result in serious illness if such a regime is not adhered to. • A person with serious carpal tunnel syndrome. • A person who is very short. It is likely that different people could have different responses to the question of whether any of the above-listed characteristics would result in ‘disability’, and some might say ‘It depends’. This illustrates the differences in the terms ‘disability’ and ‘handicap’, as used by the United Nations. http://www. accessiblesociety.org/topics/demographics-identity/index.htm.

Chapter 2

On Metaprescriptive Utterances: Cancer, Breasts and Gazes

Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place Sontag, 1974 I am a post mastectomy woman who believes our feelings need voice in order to be recognized, respected, and of use. I do not wish my anger and pain and fear about cancer to fossilize into yet another silence, nor rob me of whatever strength can lie at the core of this experience, openly acknowledged and examined Lorde, 1981 In the intimate public space of the Breast Cancer waiting room . . . women held their heads at odd angles and fixed their gazes on distant points in a largely unsuccessful attempt to avoid seeing – and knowing – too much about those who waited on them. Patients returned from their mammograms and waited either to be released or be rescrutinized and diagnosed; as they waited, still in their hospital johnnies, their private stories became an unwelcome form of public property. An older woman with a persistently fixed smile and shock of white hair was called back by nurses for the third time; as she rose stiffly from her chair, the rest of us found ourselves watching, exercising the ‘power’ of a look that offered no pleasure. Although the flimsily tied hospital gown marked the site of the white-haired woman’s vulnerability to the scrutiny of a public gaze that threatened to expose the contours of her body, the repeated visual marker of that distinctively patterned gown also signaled a collective susceptibility to illness and death not located on an individual body but diffused and projected throughout the waiting room. Tanner, 2006: 79

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On Metaprescriptive Utterances: Cancer, Breasts and Gazes

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Linked as they are by concerns about bodies, the above quotes point to three distinct orientations to ill health, with Sontag’s excerpt needing to be understood against her larger argument about the traumatic nature of life-threatening ailments that force us humans to confront the ‘night side of life’ (Sontag, 1974: 1). According to her, societal metaphors permeate talk about women’s bodies and cancer – with breast cancer often viewed as insidious, invasive and unspeakable – and women find themselves in spaces where they have to both acknowledge and counter these tropes. If cancer can be stripped of negative metaphors and ‘de-mythicized’, Sontag points out, ill people will stand a better chance of avoiding stigmatization and addressing cancer on their own terms (Sontag, 1974: 86–87). Lorde’s excerpt in contrast is a voice speaking back, refusing to clamp down her fear and anxiety about cancer. Speaking from a feminist, AfricanAmerican and lesbian perspective, she challenges the patriarchal discomfort about speaking about women’s bodies, and writes openly in The Cancer Journals about her refusal to wear a ‘grotesquely pale prosthesis’ and conform to societal expectations of what a ‘normal’ woman’s body should look like. Although she acknowledges the pain and fear accompanying the illness, she chooses to mine ‘whatever strength can lie at the core of this experience’, and writes reflectively of what it means for her as a lesbian woman of color. Tanner’s piece, in contrast to the other two, speaks of waiting spaces that women with cancer find themselves. Openly articulating the deep discomfort that a lot of us women have encountered in waiting rooms awaiting our turns for mammograms, dressed in flimsy hospital garb that permits little privacy, aware that our body parts are up to public gaze now, she writes of the medical waiting room that ‘uncovers the body’s vulnerability to illness and injury along a continuum that ranges from the physical – the amputated leg of a diabetic or the visible tremors of a patient’s hand in the neurologist’s office – to the symbolic – the threat of serious illness that shadows even the most routine mammogram or colonoscopy’ (Tanner, 2006: 65). The apparently empty space of the waiting room – where uncertainty and anxiety prevail most palpably – is, as Tanner points out, the cultural stage where our assumptions about bodies, ailments and dying are held up to the light and rendered visible and audible. All three orientations allow us to speak to specific language-related issues around women’s bodies and cancer from different angles, with some permitting laminations of issues that others do not. Taking as its point of entry the (oral and written) published autobiographical accounts of women with breast cancer, as well as accounts of their partners, this chapter seeks to bring metaprescriptive utterances (Lyotard, 1984; addressed in detail presently) about cancer and women’s health/bodies into focus.

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As mentioned in the Introduction, my aim with creating some textual space for such accounts is not so much to theorize ‘narrative truths’ (see Hall & Bucholtz, 1995; Johnstone, 1996, 2000, 2006; Kramsch, 2000, 2003b; Kramsch & Lam, 1999; Menard-Warwick, 2002, 2004; Pavlenko, 2007; indeed, as I have said there and elsewhere, our ‘truths’ are most provisional and slippery); neither is it to address what of the illness comes through in the accounts (we know much of that from cultural, bio-medical discourses). Instead, it is to shift attention to how it is through the body and particular languaging of it that we learn about (1) how breast cancer patients appropriate medically dominant metaprescriptive utterances (Lyotard, 1984; more on this presently) about their bodies to move beyond it, and (2) how probing the normative interpretations of these utterances brings into view alternate laminations – including the uncontainability and spillage of illnesses – that otherwise tend to remain invisible. Scholarship in the field has not addressed either of these issues in relation to ailments in general and only recently has there been attention to breast cancer in particular (Manderson & Stirling, 2007; Wilmoth et al., 2008). Both realms are crucial to our larger understandings of not just illness – which in itself is a non-discursive condition – but of the language by which that experience of illness gets discoursed into prescribed ways of thinking especially by societal and bio-medical discourses. Two key questions that the chapter will address, then, are (1) Where do our prescribed notions of cancer and women’s bodies come from and in what ways do they become gazes that bind? (2) In what ways does a probing of breast cancer metaprescriptive utterances permit alternative interpretations of bodies and illnesses? How do breast cancer patients appropriate some of these medical metaprescriptive utterances, and what are some of the issues that float into view as they do so? I will attempt to address the first question by offering a partial conceptual canvas that makes connections between medical discourses, societal tropes, the role of science in the normative conceptualizations of bodies and the binding effects of these ‘gazes’. The second set of questions will be explored in and through interpretations of breast cancer patients and their partners of their bodies and ailments. These questions mark a shift in perspective about illnesses and language, a move that is not trivial in applied socio-linguistics. There is a shroud of silence in the discipline about several of the issues here – bodies, terminal illnesses, mortality – and this paper probes the edges of this blanket to move them from the incidental space they currently occupy to those as central as gender, ethnicity and class. Disabilities, illnesses, ailments and

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our ability to live our everyday lives depend crucially on our bodies ‘working’ ‘for’ us; our everyday negotiations in our jobs, relationships, in the world hinge on our ability to wake up each day and trust that our bodies will not betray us (Capps & Ochs, 1995). Bodies and societal and bio-medical orientations to them are hopelessly intertwined and a powerful way forward towards addressing their knotted nature, is, as Johnstone (1996) puts it, to frame questions about the social world in terms of the individual. Issues about breasts, cancer, medical/male gazes and our collective societal notions about ‘normal’ ‘attractive’ bodies need then to be addressed in terms of individual voices.

Prescribed Notions of Illnesses, Bodies, ‘Able-ism’, Metaprescriptive Utterances, Gazes Drawing on feminist insights of writing by scholars whose excerpts head this chapter, my discussion will speak to three metaprescriptive utterances around breast cancer – chemotherapy, amputation and prosthesis – that emerge in patient and partner accounts.1 As assumed for the present discussion, ‘metaprescriptive utterances’ are terms whose power gets legitimized by particular discourses (societal, medical) and institutions; they are phrases that serve as catch-all terms that in their singular nature mask a most heterogeneous and complex set of issues. As Lyotard (1984) thinks of them, they are prescriptive statements that describe what the rules of language use or languaging must be in a given domain; in other words, they have the colonizing power to dictate what language use must be like. Situated in the larger realm of the medical world, the present discussion probes the messiness that cancer-related metaprescriptive utterances elide by addressing the ordinary and everyday. Taking on the larger realms of science (medicine in the present case), Lyotard offers paralogy – a focus on the local, the anti-method – to counter the rationality, deterministic orientation and denotative statements of science. He says: The function of differential, or imaginative or paralogical activity of the current pragmatics of science is to point out these metaprescriptives (science’s ‘presuppositions’) and to petition the players to accept different ones. The only legitimation that can make this kind of request admissible is that it will generate ideas, in other words new statements. (Lyotard, 1984: 65) The present exploration probes particular metaprescriptive utterances drawn on prescribed medical and societal discourses about breasts, cancer and bodies in general to engage in the paralogical, an alternate set of

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interpretations that do not otherwise find adequate articulation. Not by any means discrete, the various discourses around these metaprescriptive utterances are knotted around anxieties about invasive surgeries where the speaker has to negotiate her body and self in medicalized spaces and language, about bodies betraying its containability with blood and fluids leaking, and where mastectomies and reconstructive surgeries speak to issues beyond amputated body parts and prostheses. In terms of their societal roles, these prescribed medical and societal discourses are all about ‘gazes’ – ways of seeing/interpreting/judging – that medical and societal discourses have perpetrated, that have colonized the ailing conditions, and which these women have little choice but to appropriate. When emanating from medical domains and the larger culture, these metaprescriptive utterances have the potential of trapping people in emotional spaces. Michel Foucault’s The Birth of the Clinic raises questions about how the gaze is constructed in medical domains, how particular ways of viewing, thinking about, languaging the body shape, what and how doctors – indeed entire medical personnel (nurses, pharmacists) – get legitimized. He defines the split between the patient and medical work that is so much a part of the modernist world as follows: Paradoxically, in relation to that which he is suffering from, the patient is only an external fact; the medical reading must take him into account only to place him in parenthesis. Of course, the doctor must know ‘the internal structure of our bodies’, but only in order to subtract it, and to free to the doctor’s gaze ‘the nature and combination of symptoms, crises, and other circumstances that accompany diseases’. It is not the pathological that functions, in relation to life, as a counter nature, but the patient in relation to the disease itself . . . Hence the strange character of the medical gaze . . . It is directed upon that which is visible in the disease – but on the basis of the patient, who hides this visible element even as he shows it. (Foucault, 1973: 8–9) In order for the disease/malfunctioning body part to be treated, the medical gaze ‘whites-out’ the human voice to focus only on the diseased body. This plucking out and reading of the body part – rendering it visible, while simultaneously casting human subjectivity in the shadows in the medical domain – is what often leads the patient to feel abandoned to the dehumanizing metaphors, and vulnerable, to be talked about solely in terms of her diseased body parts instead of how the body part is intimately a part of her very existence. Based on Foucauldian reasoning, Herzlich and Peirret (1987) also write of how science replaced religion as a key discourse through which health and illness got represented.

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Starting from the 19th century there emerged a rhetoric oriented to seeing the body as a mechanistic object, whose body parts could be repaired when they broke down. Scientific knowledge – medicine in this present case – got languaged in very specific ways. Presented largely in terms of denotative facts (Lyotard, 1984), science distinguished itself from other forms of knowledge by claiming to be ‘objective’, by offering a set of denotative statements with a literal orientation to language, open to others for observation, to be judged by experts so as to be found ‘valid’ and ‘reliable’. As Stacey explains, ‘what makes knowledge scientific is its reference to something external to itself described in a language which can be scrutinized by others with similar training and qualifications’ (Stacey, 1997: 231). It is these denotative statements – seemingly objective realities, ‘facts’, – that, according to Lyotard, make up the power of, and are behind metaprescriptive utterances (see Anthonissen & Blommaert (2007), Blommaert (1999), Kramsch (2005) and Wodak (2001) for powerful accounts of connections between language/utterances and ideologies). The power of the medical experts and the authority vested in medical personnel mandate the ‘visible’, ‘what can be seen’ and thus talked about. This visibility factor – what we see – and the harsh dynamics of what we see, where we would sooner construct flat, simple pictures instead of addressing ailments as multiple, heterogeneous domains, is part of our destructive gaze because we have bought into metaprescriptive utterances handed down to us by the medical world. When the body wears discernible evidence of an ailment – a head shaved because of cancer, the gaunt look of hepatitis C or AIDS patients, the diffident shuffles of those with hip surgery – this gaze (including the one present in this writing) alights on and ‘reads’ a body in ways that partially signal its identity in terms of debilitating condition. The medical gaze, of course, exaggerates this tendency in its various contexts to where the person with the ailment is pushed into assuming ‘the speak’ of medical practitioners, participating thereby in absenting themselves in their presence, speaking of their body parts in the language that is coming at them, thus denying the spillages around their bodies. In more recent years, however, the medical scenario – especially the doctor–patient relationship – has become more complicated. While early historical tropes around the body viewed it as a delicate system that a medical expert could intervene in and treat, more recent tropes insist that the delicate balance of bodies is one that individuals need to monitor by making themselves literate about a lot of wide-ranging information. As Stacey points out, ‘The individuals charged with this onerous responsibility must learn to read their bodily texts through modes of self-knowledge and

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exploration. The patient is required to develop a sophisticated therapeutic literacy to develop his or her well being accurately’ (Stacey, 1997: 229). But this relatively new construction of the ‘medically literate patient’ means not a demise of the dominance of medical tropes but only that this more recent construction now runs parallel to medical tropes. Illnesses have now also assumed individualized overtones. ‘Kept in a state of heightened awareness about the rapidly proliferating number of local and global risks and dangers to the healthy body, we are easily seduced by fantasies of individual agency, autonomy and self-generation. Environmental pollution, chemicals in food, ozone layer depletion and the negative effects of stress are all repeatedly monitored and recycled as a source of cultural anxiety in our everyday lives’ (Stacey, 1997: 227). Cancer, especially, has rings of such individualized discourses about it. Herzlich and Peirret maintain that: Cancer is the prototype illness of our time – cancer is the illness of individuals in their relations with society. It is indeed the illness of the individual but this individual can only be conceived of in relation with society as a whole. At the same time cancer is also an illness produced by society, but one that manifests the flaws of the presentday individual. (Herzlich & Peirret, 1987: 62) Implicated in this emergence of a parallel strand is the shifting role of the medical expert. The proliferation of medical information now available to the lay person – presented as it is in easily accessible language and small bites of information – in some sense works to diminish the role of the expert, with patients deciding for themselves whether or not they need ‘second opinions’ on diagnoses, and with doctors themselves consulting other doctors about prognoses. Ownership of such specialized knowledge has become more distributed than before, a diffusion that Lyotard (1984) maintains has threatened science’s legitimacy. As he says: The relation of knowledge is not articulated in terms of the realization of the life of the spirit or the emancipation of the humanity, but in terms of the users of a complex conceptual and material machinery and those who benefit from its performance capabilities. They have at their disposal no metalanguage or metanarrative in which to formulate the final goal and correct use of the machinery. But they do have brainstorming to improve its performance. (Lyotard, 1984: 52) The scenes on the ground in the case of women with breast cancer seem, however, to be more complex. As we shall see, it is not so much that they no longer have a metalanguage; on the contrary, they draw on the metaprescriptive utterances about their cancer and their body

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parts – emerging from this space of medical denotative statements – to reveal messinesses of the kind we have deliberately chosen not to acknowledge. The present paralogical engagement offers a set of philosophical interpretations that counter these utterances to cast floodlights on body- and language-related issues that have hitherto not been addressed in applied sociolinguistics. The first-person accounts that inform this discussion are taken from the following sources: (1) Audre Lorde’s The Cancer Journals, 1997, San Francisco: Aunt Lute Books. (2) Marcy Jane Knopf-Newman’s Beyond Slash and Burn and Poison: Transforming Breast Cancer Stories into Action, 2004, New Brunswick: Rutgers University Press. (3) Mark Weiss’s When Your Wife Has Breast Cancer, 2006, Berkeley: ibooks Inc. (4) Barbara Stevens’ Not Just One in Eight, 2000, Deerfield Beach, FL: Health Communications Inc. (5) Segments of Jackie Stacey’s Teratologies, 1997. As mentioned earlier, the discussion will center around (1) chemotherapy, (2) amputation and (3) prosthesis as metaprescriptive utterances. Chemotherapy I begin this section with what Susan’s chemotherapy sessions meant for her and her partner in terms of the changes they brought on in their lives and relationship before addressing issues in relation to the metaprescriptive term itself. Susan says: Chemotherapy is awful. I felt sick, like having the flu; moreover, I felt as though I was being slowly, methodically poisoned. I would lay in the dark in my bedroom, with a towel over my head feeling very nauseated. Compazine, an antinausea medication was ineffective, because I still vomited. In fact, all it did was make me tired. The only thing that helped me was smoking a little marijuana given to me by friends. When I looked at myself in the mirror I saw a woman with dark circles under her eyes . . . . My attention span those first few days was very erratic. By the fourth day I was beginning to feel good again. In the meantime, my house would be in utter chaos. Robert could not deal with my illness; consequently, he was never home. As a result my two boys, Charlie, age ten at the time, and Matt age six would be running throughout

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the house, all the televisions would be on and junk food would be everywhere. ... Robert and I have been together twenty-two years, twenty of them married. The last five have been a challenge; this last year very rough. My getting breast cancer put more of a strain on the relationship . . . . It is too scary for him to comprehend so he buries it, and escapes by going to the office. His behaviour was one big surprise through this whole thing . . . . Finally, I said to him, ‘if you can’t help me personally or emotionally, could you at least handle the bills and the paperwork for the insurance? Will you make sure claims are filed and that the doctors get paid?’ It turned out he didn’t even do that or if he did he was not very thorough. This last year has been a nightmare and the clinics and doctors are threatening to sue me. We have made the decision to separate. I feel good about this decision because now I can move forward as I need to for myself and for my children. I am in a state of self-awareness where I am striving to be happy and want to be fulfilled. I don’t want to live my life full of anger, resentment and hostility, which is how I feel after the way he treated me. Robert is still running. Truthfully, I don’t think he wants to believe that my wanting a separation has anything to do with him. He believes I am just going through a crisis. (From: Susan Alexander’s ‘I thought I had a good marriage’ in Barbara Steven, 2000: 33–34, my emphasis). Several issues emerge in both accounts around ‘chemotherapy’: Susan’s frustration at her husband not being able to deal with the house and kids, her disappointment at his not taking care of insurance and policy claims and her decision to separate because of the ‘resentment and hostility’ she feels against him. Robert’s (Susan’s husband) accounts, on the other hand, highlight other issues; as is evident below, issues around chemotherapy assume nuances around who was going to accompany Susan to the session (himself or her mother), picking up the responsibilities around the house and kids and feeling frustrated at being locked into a ‘male’ role and his general inability to communicate his conflict: Robert (Susan’s husband): Although our communication wasn’t great, I thought friendship had been pretty strong until the time Susan got sick. I had gone to all her

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doctor’s appointments including the consultation with her oncologist. I assumed we would go together for her first chemotherapy treatment. When she told me ‘My mother’s going with me’ I not only felt as though I had been kicked, but I felt left out. A couple of other times I asked if she wanted me to come with her and I guess she must have said no. So other than going with her to one radiation treatment, I never asked or went again. It was not until later that I found out it had affected her that I hadn’t gone with her to anything but by then it was too late. ... Having the financial burden solely on my shoulders was frightening. Nobody ever talks about that or all the other things that have to be taken care of: picking up the kids after school, making meals, having someone come over in the evening for a few hours so that the partner can go out for a bit to do whatever. . . . That is why I think it is a good idea to sit down with family or friends, or whoever is part of your support system without your partner, and tell them that you need their assistance to help ease the pressure somewhat. Sometimes a spouse is uncomfortable asking for help because they are not his family . . . ... It’s frustrating having ‘to be the man’, having to be strong. Women have certain expectations about men and the way they think men should behave . . . Perhaps we need to take a deep breath and tell the woman ‘I am just as fragile as you are. I know that is not how I come across. You might think I don’t care, but may be it is because I care so much, and am so afraid that I run’. Sometimes it is perceptions that are wrong, what they think is going on, isn’t. I am partly to blame as I should have talked about how I was feeling. . . . Communication helps prevent misunderstandings which too often can create more of a problem. I would say ‘tell your partner how you are feeling, because it is not just them who is going through it, you both are. Don’t try to be a superman’. (Alexander in Stevens, 2000: 35–38, my emphasis) Clearly, there are a host of issues that the metaprescriptive term of ‘chemotherapy’ draws a veil over and the radiating ripples around this term/event stay hidden. But beyond this unhappy, difficult spillage are the linguistic and etymological aspects of the term itself. The word ‘chemotherapy’ is a combination of ‘chemo’ and ‘therapy’, with

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the former being derived from ‘chemo’ meaning ‘chemicals’ but specifically in this instance chemicals that have ‘a toxic effect’ and the latter from therape meaning ‘treatment’ or ‘cure’. The juxtaposition of seeming opposites – a toxic compound that kills (chemo) with a treatment that cures (therapy) – is reminiscent of Derrida’s pharmakon wherein the remedy and the poison are part of each other; the term means both poison and cure. While Derrida views writing as a pharmakon, both a remedy to relieve overburdened memory and also a dangerous drug (in the Socratic sense), the idea that the opposite is already built into the term is relevant here. We need to ask what it is that leads for the use of a single word for opposing meanings, and though we are here in the realm of speculation, it is not unreasonable to infer that it may be because one of the terms contains the other; the cure ‘contains’ the disease inasmuch as it ‘contains’ or restricts it and contains it inasmuch as it actually worsens (or even causes) the disease. The prolonged use of interferon injections for hepatitis C, for example, can lead to malignancy in the liver in 5% of cases. That is, the cure contains disease; it is not difficult to see why ‘pharmakon’ is both. In the case of ‘chemotherapy’ – a real drug administered to cancer patients – this opposition, or, as it turns out, non-opposition, is lived out: the ‘therapy’ patients actually receive makes them ill (as Susan points out in her narrative), and when administered to non-cancer patients (as in the case of curing hepatitis C), chemotherapy actually causes cancer. I stress these issues around etymology and morphology here to highlight the rift or gap between these terms that otherwise go unnoticed. Chemotherapy has become a metaprescriptive utterance with particular associations and specific conceptual apparatus that begs to be texted and infused with new associations and meanings. As Culler (1982) points out, this practice of relying on the terms of an opposition in one’s argument (chemo + therapy in the present case) while simultaneously seeking to displace that opposition permits the possibility of new meanings, a point that Derrida discusses in his sections on ‘paleonymics’: the retention of old names while grafting new meaning upon them.2 Opening up ‘chemotherapy’ and its various normative predicates to interpret it in the more grounded space of a narrative of a patient and her partner permits one to resist the prior dominantly bio-medical and societal associations around it while also opening doors for life’s related messiness to float into our view (as in Susan and Robert’s narratives). It forces us to acknowledge, as Deshazer points out, that ‘the treatments may be invasive, indeed poisonous; their medicalized bodies may strike them as frail and unfamiliar; the stigmatization they face and the pain they

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experience may be debilitating; the promise of victory may ring false’ (Deshazer, 2005: 15). To move from a linguistic taking apart of the elements of a word understood denotatively to the repercussions of the connotations it has acquired is to see more than just the body of the patient who suffers. The intensity and anxiety associated with the word itself, knowledge that the cure entails the death of one’s tissue and the loss of one’s hair and energy, are connotations functioning in such a way as to threaten the social fabric of the family. It prods us into probing gender-related dynamics – Susan in the above instance is left dealing with concerns about the house and kids and speaks of Robert losing himself in his work; Robert, as mentioned earlier, finds himself trapped in a ‘male’ role feeling pressure to behave in particular ways. The chemo (the toxic chemical) that is intended to cure the body poisons familial relations, becoming thus the ‘therapy’ that isn’t. We need to ask whether these metaprescriptive terms require to be changed, or if they cannot (seeing how completely dominant they are of bodies and ailments) what we can do to make room for paralogical – more localized, alternate – accounts that illuminate both the extent of these colonizing tropes while also making room for them being countered. Doing so leads to the cultivation of a discourse that is at once more holistic and expressive, wholly antithetical to the kind of discourse demanded of scientists at the time of the founding of the Royal Society in Britain. Scientists were then exhorted to use plain simple language and dispense with flourishes of rhetoric, which feed the imagination rather than the cold observing intellect – the birth of the purely denotative. It was imperative to separate myth from empirical fact if science was to take the course it did, but there was an accompanying impoverishment, the loss of a richer more uncertain ‘surround’. Amputated bodies If metaprescriptive associations around chemotherapy are partially about the conjoining of opposites, amputation relies on another set of polarities, namely those relating to ‘losing a part to save the whole’. Much of the language regarding amputation that we collectively have in place emerges from concerns regarding sites of amputation, infections that prompt it (gangrene, severe injury, a tumour) and rehabilitation after surgery (a theme often associated with soldiers losing body parts). In the case of breast cancer, where one or sometimes both breasts get amputated, the local articulations assume nuances relating to sexuality, sexiness and one’s public image (Livia & Hall, 1997). Breast cancer patients and their partners

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seem to find themselves speaking simultaneously, to be claiming particular subjectivities in the face of cancer’s uncertain and onward march; while also resisting societal metaphors around ‘attractive’ sexual bodies, they seem to have little choice about the ‘lose-a-part-to-save-the-whole’ discourse of medicine, points that emerge in Barbara’s and Bart’s accounts. Barbara says: I have since thought, How odd I never said goodbye to my breasts. It was a day of experiences and wonderful people. Two examples are: as I was being wheeled into the operating room one of the staff held my hand. I cannot express how comforting that was. I made terrible jokes to my medical team. Things such as never having breast pain again. The anesthesiologist who came to visit the next day told me I had nearly given him a heart attack when I started in on Dr. Kevorkian jokes. I was freezing when I woke up. My chest hurt terribly. Not from surgery, but from the bandage that was wrapped so tightly around me. My nurse was wonderful. She rubbed my back because it hurt. I was unable to lie on my stomach because of the surgery or my sides because of the drains. When Bart came to visit early the next morning he crawled into bed with me and we went to sleep in one another’s arms. Neither of us had slept the night before. My husband is the most wonderful, caring, gentle man I have ever known. (Barbara in Stevens, 2000: 6–7) Bart for his part runs a parallel account to Barbara’s lament about not saying goodbye to her breasts, and says: Barb does not remember her surgeon showing us pictures of women who had undergone mastectomies so that we could be prepared. That is one of the reasons I went with her to all her doctor’s appointments. There were things both of us missed. I agreed with her decision to remove her breasts. Had she not done she would have lived her whole life wondering, “When will I get it in the other breast”? I have no doubt she would have. When her bandages were removed the day she was discharged from the hospital I knew the best way for me to handle it was to look directly at her scars and get used to them. You know what? I looked and thought ‘No big deal! She looked great. She just did not have breasts, and I thought, Barb still looks sexy!’ After a while I no longer saw the scars. (Bart in Stevens, 2000: 8–9, my emphasis)

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Barbara’s line about not saying ‘goodbye to her breasts’ coupled with Bart’s articulations about ‘getting used’ to her scars and regarding their removal as no ‘big deal’ speaks of their need to re-cog-nize each and the other’s body, a point that has significance for the complex intersection of bodily contingencies and identity construction. Lorde voices similar dilemmas in The Cancer Journals, where she insists that ‘any amputation is a physical and psychic reality that must be integrated into a new sense of self’ (Lorde, 1981: 16), and writes: ‘I would lie if I did not also speak of loss . . . the absence of my breast is a recurring sadness, but certainly not one that dominates my life’. Stacey in Teratologies speaks of the narrative of her body after her cancer surgery and says: The narrative of my body continued to be rewritten at each stage. As I lay recovering from surgery, I tried to find out what had been removed apart from the tumour. The surgeon had taken out the tumour and also the fallopian tube and the ovary on the right side. Overnight my identity was reinvented: I was now a cancer patient; or was I? I was told the disease may or may not still be present in my body. It may or may not return. (Stacey, 1997: 4) Stacey’s questioning about who she now was in relation to her ailment and body after surgery captures something that is hinted at in Barbara’s narrative: the tumult of having one’s sense of self overturned by a dominant medical metaprescriptive utterance (of both being a cancer patient and having a body part removed) while also speaking agentively of trying to reconceptualize herself. Like Stacey and Lorde, Barbara’s lines, where she speaks of her joking with doctors about not having any more breast pain, also captures degrees of agency, with the forward-looking, positive orientation she is giving to what is otherwise a traumatic ‘wake-up’ call. While Stacey goes on to muse, ‘The past must now be reimagined and rescripted. . . . Given the demands of new bodily evidence, I found myself inventing stories about myself . . . The body tells a new story and so demands a reinterpretation of recent life history (Stacey, 1997: 5)’, Barbara speaks of the present moments where her loving husband crawls into bed with her after her surgery, and where the removal of body parts (both breasts) has saved her life. This point about re-cog-nizing one’s changed body and recent past – including the removal of breasts to save life – is echoed in feminist narratives that challenge the ‘normal body gaze’ of absent breasts. GarlandThomson’s discussion (1997), for instance, speaks to how contemporary feminist narratives resist ‘the sexist assumption that the amputated breast must always pass for the normative sexualized one either through

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concealment or through prosthesis’. This either–or orientation about a feminine body part gets countered by the ‘It’s No Secret’ poster used in an advertising campaign by the Breast Cancer Fund (on the cover of the book) that portrays a single breasted female flaunting her mastectomy scar in a provocative pose similar to models advertising Victoria’s Secret lingerie. (Surely, the ‘secret’ in the poster is intended to play on the ‘secret’ of Victoria’s Secret?) As DeShazer points out about this poster, ‘the amputated breast is not only revealed, it is ironically sexualized in a manner that implicitly critiques soft-porn representations of women’s fetishized breasts, artfully bared’ (DeShazer, 2005: 28). This point of ‘fetishized’ breasts, of course, raises concerns about bodies with amputated breasts being ‘unattractive and asexual’ (Bart above needing to convince himself that Barbara still looked sexy, for instance). Inextricably tied to male gazes (Hall & Bucholtz, 1995) that view breasts as ‘attractive’ objects, issues around restoring a female body to its ‘original’ form can be seen to be tied to associations around personalized body horrors and ‘ugliness’ (Kristeva, 1982). The following account of Mark Weiss, whose wife underwent a mastectomy, articulates concerns about his wife not having two breasts and about his coming to terms with her not-so-beautiful-anymore body: The guys for the most part talked candidly and emotionally about their experiences with chemo or with surgery. One guy spoke about his wife’s cancer being misdiagnosed at another hospital and his feelings of frustration and guilt for not questioning the doctor who initially screwed it up. To my discredit, I didn’t read the room correctly; this group was focused on the survival of their spouses, the acute issues and I should have respected this. No one in the group really spoke about the private things that I felt only husbands in our situation could really feel. Sexuality had to be one of those items, yet the discussions didn’t go there. When it was my turn, I took a chance and spoke about my desire to know what type of breasts my wife would end up having after the reconstruction process, thinking that this would start a discussion about the sexual consequences of cancer treatments. The guy to my right began radiating hostility at me for initiating this type of discussion. He was about sixty years old and probably thinking that I was a shallow, uncaring little SOB whose paramount and only concern should have been my wife’s survival. The guy actually interrupted me twice, stating that his love for his wife far outweighed something as petty as the appearance of her breasts.

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He seemed to hold sway with the room because I felt it was eleven (including Roz) against one. I suddenly felt identified with Henry Fonda in Twelve Angry Men! His hostility also sparked my sense of defiance as I defended myself by telling the group that I loved my wife completely, and was focused on both her recovery and survival and on protecting my kids. I also pointed out that every time I went to the reconstructive plastic surgeon’s office and looked at his book of pictures of reconstructed breasts, I saw pictures of overweight, postmenopausal women with youthful looking breasts that didn’t quite fit. I wanted to see pictures of young, beautiful women with reconstructed breasts because my wife is young and beautiful. I explained that if the new breasts weren’t going to be beautiful, then I wanted to start coming to grips with that now and not be disappointed later. ... After that meeting, Richard and I walked uptown together and had a pretty open conversation about sex and intimacy, and it actually validated my feelings of concern. It also validated my feelings that it was OK to hope to have an even more beautiful and happy wife at the end of the treatments and surgery. During the fifteen block walk, Richard took me from feeling like an uncaring piece of garbage to feeling like a normal man with normal concerns. I felt very lucky to have the opportunity to speak so candidly with someone, and I was very happy that he was able to lift my spirit after such an uncomfortable experience. (Weiss, 2006: 102–104, my emphasis) Mark Weiss’s open and honest articulation of his desire to have his wife’s body ‘restored’ with reconstructive surgery (addressed in more detail in relation to prosthesis in the next section) evokes a mix of reactions. On the one hand, we can intuit his (male) insistence that a woman’s body have two breasts and be a certain way (something that I, as a woman, recoil from). On the other hand, though, his anxieties are bringing to the surface some key implicit assumptions about bodies, ‘normalcy’ and ‘deviance’ that we have collectively assembled. His utterances about ‘overweight, postmenopausal women with reconstructed breasts’ are an articulation of the ‘horrors’ that perhaps mark the significance of the various boundaries and orifices of the body, a key premise for discourses of abjection. Kristeva critiques the cultural, political and historical conditions under which ‘clean, obedient, law-abiding, decent bodies emerges’. Abjection for her, as for Longhurst, is ‘the affect or feeling of anxiety, loathing and disgust that the subject has in encountering certain matter,

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images, fantasies – the horrible to which it can only respond with aversion, nausea, and distraction’ (Longhurst, 2001: 28). The abject evokes fear and disgust because it exposes the border between the self and other; the abject threatens to disband the subject by melting the border. For Weiss, his wife’s body with only one breast renders her body abject and non-normal, and thus asexual and ‘unattractive’. His hope that his wife’s body might even be more beautiful after the surgery (‘. . . it was OK to hope to have an even more beautiful and happy wife at the end of the treatments and surgery’) might be partially seen to emerge from this sense of threat of the ‘disfigured borders’/contours of his wife’s body threatening his ability to relate to her sexually. Her beauty mattered to his sense of who he was, and to his sense of continued maleness (‘I wanted to see pictures of young, beautiful women with reconstructed breasts because my wife is young and beautiful. I explained that if the new breasts weren’t going to be beautiful, then I wanted to start coming to grips with that now and not be disappointed later’). Probing the metaprescriptive associations around the amputated body suddenly casts light on the assembled equations between ‘two breasts, attractive and sexual’ and the polarities inherent in them. At this point, the amputated body is not so much about losing a part to save the whole, as much as it is about losing a part and replacing it to appear normal (to please men, not look ‘deviant’; cf. Goffman, 1967). If ‘chemotherapy’ raises issues of language – its ‘doubleness’, the supremacy of the denotative in scientific discourse, ‘amputation’ raises issues of the social construction of the norm and notions of the normal. A norm is based on statistical supremacy and it is worth pondering why exactly a woman needs two breasts. We have two kidneys, silently there, the other taking over if one is lost. But the visibility of breasts complicates the ‘norm’ in this case; it generates beauty myths and ‘becomes’ or is perhaps ‘constructed’ into being the site of sexual arousal. The essential function of lactation of offspring is completely overlooked till the moment she gives birth. Prostheses Issues of amputation are, of course, intimately linked to concerns about reconstruction, and there are, as with the previous metaprescriptive utterances, some very complex views about this as well. The polarities around prosthesis play on absent (non-normal) breasts versus those bodies that are ‘normal’, polarities that exert pressure on women to present their public, body images (Grosz, 1994) in specific ways. Lorde (1981) critiques

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prosthesis on four bases: that women who opt for it risk losing selfawareness and feminist visibility (particular statements that the bodies of a single-breasted or no-breasted woman can make); that this choice is complicit in the patriarchal culture’s sexist politics of appearance; that there are dangers in reconstructive surgery, since cancerous breast tissue can form and be hidden under implants; and reconstructed women cannot be effective breast cancer activists. Lorde concludes that the cultural emphasis on surgical prosthesis serves a ‘way of avoiding having women come to terms with their own pain and loss, and thereby, with their own strength’ (Lorde, 1981: 49), and swears to either love my body one-breasted now, or remain forever alien to myself (Lorde, 1981: 44). Since ‘self-alienation is unthinkable, self-acceptance becomes essential. I refuse to have my scars hidden or trivialized behind lambswool or silicone gel’ (Lorde, 1981: 60). Some of these views find echoes in the following where Tania, a 21year-old college student, struggles with whether or not to have her body reconstructed: Initially, I didn’t think about the aesthetics when I lost my breast. I thought “In order for me to live, it has to go! Wearing a prosthesis or having reconstruction didn’t occur to me until I was recovering and was visited by a Reach for Recovery volunteer. She brought me this silly little stocking thing with stuffing in it. I became angry, because it was as though everyone would be much happier if I “had a booby”. It wasn’t my fault I had lost my breast, and I didn’t feel there should be any shame involved. At that point, I became adamantly against reconstruction. I didn’t wear a prosthesis for three years because I wanted to become comfortable with who I was, having only one breast. I’m a lesbian and for me having only one breast was like “coming out” all over again. When is it a good time to tell someone? Do I have to tell them? Is it an issue or non-issue? Maybe if every woman opted not to have reconstruction, everyone would grow more uncomfortable with it. I know it’s difficult to function in society without breasts but if we all said it’s not our fault and we were comfortable with it, people would have no choice. A classmate who didn’t know me well one day asked if I stuff my bra. When I told her I had lost a breast to cancer, she felt terrible. In a way I was glad she was honest. Most days I feel comfortable not wearing a prosthesis but it is easier having two breasts, because then it is a non-issue. I wore my prosthesis to a job interview. Why? Because I didn’t want to go through potential discrimination. If I don’t wear a prosthesis to work I wear baggy shirts, simply because I don’t want to deal with it. I like having the

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option. Sometimes though I do think about reconstruction, particularly when my clothes don’t hang right. But those days are far and few between. I am glad I made the decision I did. In Stages, Lisa’s therapist asks her whether she will wear a prosthesis when school starts. She replies, “No, no prosthesis, and no bra and I’m going to wear something tight”. I did that sometimes just to see the kinds of reactions I would get from people. ... I was fired as a camp counselor because I had only one breast. When the director found out, he asked me what would I tell the girls when we were showering together. I told him I would answer their questions and educate them. Shortly thereafter I was fired with full severance. Was the bottom line what would the children think? What impact would that have on their parents? Or was it because I was gay? I was discriminated against, but I’ve chosen not to think about it in those terms. (Tania in Stevens, 2000: 229–230; my emphasis) While Tania above does not, like Lorde, articulate her desire to be adamantly single-breasted – she is after all only 21 at the time of this narrative – she does, like Stacey earlier, wrestle with her altered identity. Her body image (Grosz, 1994, 1995) has changed and as she points out, she didn’t wear a prosthesis for three years because she wanted to become comfortable with her altered body. Her statement about ‘coming out’ all over again in the light of her surgery underscores the agency with which she both confidently speaks of both her body and her sexuality. The notion of the abject body that we saw earlier in relation to Weiss’s desire for his wife’s body to have both breasts applies in this present context too, albeit differently. In the current case, Tania’s and Lourde’s desire to come to terms with their different bodies speaks of their resisting what McClintock (1995) refers to as the ‘psychic processes of abjection’ (fetishism, disavowal, the uncanny) to take up abjections as political stands that allows them to speak back to the metaprescriptive associations around amputated body parts. McClintock distinguishes between various kinds of abjections thus: With respect to abjection, distinction can be made, for example, between abject objects (the clitoris, domestic dirt, menstrual blood), and abject states (bulimia, the masturbatory imagination, hysteria), which are not the same as abject zones (the Israeli Occupied Territories, prisons, battered women’s shelters). Socially appointed agents of abjection (soldiers, domestic workers, nurses) are not the same as

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socially abjected (fetishism, disavowal, the uncanny) which are not the same as political processes of abjection (ethnic genocide, mass removals, prostitute ‘clean ups’). (McClintock, 1995: 72) The abject, then, is intimately tied to powers of horror (Kristeva, 1982), taboos, collective ideas about repulsion, purity, and the sacred and the polarities accompanying them. In light of the present discussion, abject bodies may be simultaneously sites of internalized male gazes, where Tania’s concerns about clothes hanging well for interviews dominate, as well as sites of agency, where she counters being discriminated against for being single-breasted. Abjection, then, as Young points out, needs to be understood in terms of ‘understanding of a body aesthetic that defines some groups as ugly or fearsome and produces aversive reactions in relation to members of those groups’ (Young, 1990: 142).

Moving into a Wider Realm Moving away from particulars about breast cancer into a wider realm about bodies and experiences of and around bodies in general, a primary aim of this chapter has been to call attention to ways in which metaprescriptive utterances about ailing bodies play crucial roles in the construction of our subjectivities, and it is to this that I now turn. While the recording of such voices is crucial (Duchan & Kovarsky, 2005), equally crucial is the need to be vigilant that experiences do not get settled, simplified and frozen. A big challenge here, then, is the attempt to carve out discoursal spaces that will capture the agonies of embodied experience even as it interrogates the categories and discourses within which we understand that experience. The present discussion of ‘ailments’ and ‘disabilities’ is to be understood in light of attempting to create this precarious space that has both articulation and questioning as its modus operandi. As mentioned in Chapter 1, issues of power and visibility flow thickly through these accounts, and uncovering some language-related issues permits us to tread this temporary, unstable space. Serving as bridges of sorts, metaprescriptive utterances reveal ways by which breasts get languaged in medicalized realms and how this power-filled space is partially the domain from which our collectively assembled notions of ‘disability’ and able-ism emerge, while also simultaneously prodding us to make room for the lived, material, corporeal and embodied aspects of our lives, reminding us that experiences have interpretive dimensions about them that the language of medicalized metaprescriptive utterances elide.

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Chemotherapy, amputation and prosthesis, metaprescriptive as they are, are blanket terms that cannot really contain the spillages of living with breast cancer – how issues about illnesses and ailments impact everything from intimate relationships, child-rearing, doctor’s appointments, interminable waits in waiting rooms, painful mammograms, fetishized (male) gazes about (two, ‘attractive’) breasts, the clinical languaging of private body parts, fear of dying and losing control over one’s body to say nothing of feeling cut off from the emotional and physical anchors of one’s life. The present focus on both language and lived bodies points at once to oppositional tensions and dynamic connections: of metaprescriptive utterances being both tropological figures as well as embodying material existences, of them being both general and specific, with codings of abjectness and attractiveness, deviance and normalcy. This space captures those Ricouerean (1977) moments when ‘living expression states living existence . . . where our movement up the entropic slope of language encounters the movement by which we come back this side of the distinctions between actuality, action, production, motion’ (Ricouer, 1977). The cultural and linguistic productions of breasts, cancer and bodies are at once about the entropic slope of denotative facts, and also about coming back down on the side of alternate languaging that contest hegemonic medical discourses.

Afterword: Merleau-Ponty and Foucault, Perception and Power The gaze gets more or less from things according to the way in which it questions them, ranges over or dwells on them. To learn to see colours is to acquire a certain style of seeing, a new use of one’s own body: it is to enrich and recast the body schema. Whether a system of motor or perceptual powers, our body is not an object for an “I think”, it is grouping of lived-through meanings which move towards its equilibrium. Sometimes a new cluster of meanings is formed; our former movements are integrated into a fresh motor entity, the visual data into a fresh sensory entity, our natural powers suddenly come together in a richer meaning, which hitherto has been merely foreshadowed in our perceptual or practical field, and which has made itself felt in our experience by no more than a certain lack, and which by its coming suddenly reshuffles the elements of our equilibrium and fulfils our blind expectation. (Merleau-Ponty, 2002: 177)

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Discursive relations are not, as we can see, internal to discourse: they do not connect concepts or words with one another; they do not establish a deductive or rhetorical structure between propositions or sentences. Yet they are not relations exterior to discourse, relations that might limit it, or impose certain forms upon it, or force it, in certain circumstances, to state certain things. They are, in a sense, at the limit of discourse, they offer it objects of which it can speak, or rather (for this image of offering presupposes that objects are formed independently of discourse), they determine the group of relations that discourse must establish in order to speak of this or that object, in order to deal with them, name them, analyze them, classify them, explain them, etc. These relations characterize not the language (langue) used by discourse, nor the circumstances in which it is deployed, but discourse itself as a practice. (Foucault, The Archeology of Knowledge, 1972: 46)

Notes 1.

2.

Sontag’s criticism of the dehumanizing tropes of bio-medical discourses influenced scholars to assume postmodern orientations to bodies. From a sociological point of view, Jackie Stacey (1997), for instance, writes of postmodern approaches to cancer (in Teratologies: A Cultural Study of Cancer); situated in philosophy, Margit Shildrik’s (1997) Leaky Bodies and Boundaries assumes a postmodern ethic. Lorde’s emphasis on difference and her views of gender, race and sexual orientation have informed feminist disability researchers such as Garland-Thomson’s Extraordinary Bodies (1997). Assuming a cultural studies orientation, Tanner’s writing speaks of a range of body-related issues, including objects triggering grief, public gazes by which women’s body parts are held and our readings of photographs of terminally ill people. One good example of this is Derrida’s notion of viewing all language use, including speaking, as writing, and in so doing produces a new concept of writing.

Chapter 3

Scripting Selves: (Auto)Biographical Writing of Alzheimer Patients and Caregivers

The self is an active agent of its own realization, establishing order among its attitudes and beliefs and giving directions to its actions. It appears to be – how far or how justifiably is not in question now – in some ways self constituting or self-made: we are what our attention to ourselves makes us be Seigel, 2005: 6 By placing its main emphasis not on the who of the one speaking, but on the what of the particulars of which one speaks, including persons, the entire analysis of the person as a basic particular is placed on the public level of locating things in relation to the spatiotemporal schema that contains it Ricouer, 1992: 32

Moving away from the physicalities of breast cancer to (supposedly) more mentalistic realms (and admitting in the process my strategic engagement with the mind–body dualism), this chapter addresses ideas resonant in both of the above quotes in relation to Alzheimer’s disease, an ailment typically characterized in terms of deteriorating memory function.1 It does so by exploring ways in which Alzheimer patients and their partners/ caregivers construct a sense of self through diary writing. While scholarship in applied linguistics has explored connections between identities and narratives (Gee, 1990; Menard-Warwick, 2004; Pavlenko, 2007; Ramanathan, 1997), relations between narratives and written selves have tended to remain relatively unexplored, with articulations in the autobiographical writing of people with terminal or chronic conditions even more so. Paying close attention to how people with ailments/disabilities and their caregivers write of their coping with their and their loved one’s 40

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ailments – the changes in their bodies, their wrestling with disabling societal discourses and lifestyles adjustments they have to make – affords glimpses into contexts where the need to assemble selves through writing becomes both imperative and a crucial mode of survival (Ramanathan & Makoni, 2008), while also alerting us to the fluidity of identities. While the ‘talking about’ of our lives is a gathering up of the scattered details of a life into a unified recit, an account that at the moment of telling or of writing is a provisional assemblage, a temporary putting together of auto (self), bio (life) and graphy (writing) (Smith, 1995).2 The notion of the self as subject of one’s own accounts and the (im)possibilities of its articulations undergird intense theoretical debates about identity constructions (Olney, 1980), the social and political conditions that allow them to emerge (Butler, 2005; Radhakrishnan, 2003) and their connections to perceived societal moorings (Benhabib, 2004). These issues assume interesting hues in the domain of Alzheimer’s disease, especially as revealed through (auto)biographical writing. Located in this space, I will speak specifically to issues of repetition and (sure) signs, and traces and intentions (more on this presently), both of which open up the notion of ‘self’ that both patients and caregivers are determined to script into place. Because Alzheimer’s disease is a condition that has, among other things, deteriorating memory skills as a key feature, the implications of the loss of one’s memories and language skills are profound (more on these connections in the next section). Alzheimer’s disease is a kind of dementia that Bayles defined as a ‘condition of chronic progressive deterioration of intellect, memory, and communicative function’ (Bayles, 1984: 209). Often viewed as presenile dementia, Alois Alzheimer, a neuropathologist first described it in terms of cerebral atrophy of senile plaques and neurofibrillary tangles in the brain of a 51-year-old woman. Many psycholinguists and cognitivists maintain that a patient can be definitively diagnosed with Alzheimer’s disease only on the basis of a biopsy or autopsy of the brain; however, the disease is often diagnosed by eliminating other possible causes, including brain tumors, vitamin deficiencies and infections. The clinical course of Alzheimer’s disease is frequently divided into relatively three phases (Schneck et al., 1982). The first (the forgetfulness phase) is often characterized by subtle decrements in memory functioning (misplacing objects, difficulty in recalling names). This stage is also sometimes characterized by behavioral changes such as decreased spontaneity, social withdrawal, anxiety, verbal perseverations, halting speech and mild problems in comprehension. During the second (confusional stage), cognitive impairment may be more obvious with features such as memory loss, temporal and spatial disorientation, and in the final stage (the dementia stage) the patient

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often suffers from severe intellectual decline, an inability to recognize even closest family members and profound disturbances in orientation. While the field has seen scholarship in psycholinguistics that has attempted to understand memory breakdown in mentalistic terms (Bayles, 1984; Nicholas et al., 1985; Obler, 1981), and while there has also been sociolinguistic research critiquing the sometimes sterile and rigid nature of experimentalist approaches to this area by focusing on language and identity issues in naturalistic settings (Davis, 2005a, 2005b; Hamilton, 1994; Makoni & Stroeken, 2002; Ramanathan, 1995a, 1995b, 1995c, 1997), a focus concentrating specifically on identity issues in diaries written by these ‘patients’ and their caregivers has not yet been addressed in the field. The idea of what of themselves people with the ailment text into place, and what of their loved ones their caregivers script opens up issues about a self’s fluidity as memories fade and the simultaneous need to fix it in its wake.3 A key aim of this chapter, then, is not so much to advocate journal writing and its uses (although it might raise implications of doing so), as much as it to extend disciplinary awareness of identity issues to those relating to disabilities, bodies and in this case, memory loss (Ramanathan, 2008a, 2008b).

Autobiography, Self, Alzheimer Diaries, Memories, Loss In his seminal study entitled ‘Le pacte autobiographie’ (1975), Phillippe Lejeune defines autobiography as a ‘retrospective prose narrative written by a real person concerning his own existence, where the focus is his individual life, in particular the story of his personality’ (Lejeune, 1975: 13). This much-cited definition in autobiographical studies seems to characterize the traditional ‘recit autobiographique’, where a narrative organization marked by linear temporal progression (‘this happened, and then this happened . . .’) coheres with the essential narrativity of human existence. A general assumption here has been that the telling of the events in a life story corresponds to a referential external reality, that experience is how we relate to the world, and narrative is the form that the ‘truthful’ telling of the experience takes (Gee, 1999). This exchange – between teller and listener, writer and reader – initiates a ‘pact’, and a contract of identity, where the narrator communicates, veraciously, some aspect of his/her existence and essence. From this vantage point, the genre of autobiography assumes as its focus the value and the singularity of telling an individual life story, where oneself becomes both object and subject of one’s narrative. The gaze that one generally extends outward – to the world around us, where things, people, objects, phenomena emerge in well-lighted, clear spaces that allow

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us to speak of them – gets turned inward into spaces that are shadowy, dark and recessed. Yet what it is we uncover as we – like Narcissus contemplating his own face in the river – chase after and construct our double images by the tellings of our unconscious, complex and hidden agonies remains double-edged. On the one hand, as Gusdorf points out, ‘Recapitulation of a life lived claims to be valuable for the one who lived it, and yet it reveals no more than a ghostly image of that life, already far distant, and doubtless incomplete, distorted furthermore by the fact that the man who remembers his past has not been for a long time the same being, the child or adolescent, who lived that past’ (Gusdorf, 1980: 38). The effort to capture who we think we once were is tenuous at best and slippery at worst, and as Lejeune (1975) himself points out, even the most orthodox of autobiographies cannot promise absolute referentiality and sincerity, since memory is necessarily limited and we always have to recourse to fictive devices when producing accounts of ourselves. This impossibility that inheres in autobiography helps us to see why individual authors, seduced by the lifewriting endeavor, build in self-conscious threads that call attention to the form they are writing in, a point underscored by poststructuralists such as Roland Barthes (1978), who contest the formations of a coherent, unified self. The end result, then, is an authorial assemblage, an artificial mise-en-scene that assembles a textual shadow intended to correspond to ‘who I am’ and ‘who I think I am’. These points of appropriating one’s past, the compulsion to cast it as some sort of coherent narrative while recognizing the contingency of the enterprise, emerge poignantly in the diaries of Alzheimer’s patients. Their memories and the interpretations of those memories are traces in the Derridean sense with encodings of times and spaces. Here is what Derrida says of traces/memories: If the trace, arche-phenomenon of ‘memory’, which must be thought before the opposition of nature and culture, animality and humanity, etc., belongs to the very movement of signification, then signification is a priori written, whether inscribed or not, in one form or another, in a ‘sensible’ and ‘spatial’ element that is called ‘exterior’ . . . . The outside, ‘spatial’ and ‘objective’ exteriority which we believe we know as the most familiar thing in the world, as familiarity itself, would not appear without the grammè, without difference as temporalization . . . . (Derrida in Culler, 2003: 114–115) . . . Différer . . . is to temporize, to take recourse, consciously or unconsciously, in the temporal and temporizing mediation of a detour that suspends the accomplishment or fulfillment of a ‘desire’ or ‘will’ and equally effects this

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suspension in a mode that annuls or tempers its own effect. And as we will see . . . this temporalization is also temporalization and spacing the becoming-time of space and the becoming-space of time, the originary constitution of time and space, as metaphysics or transcendental phenomenology would say, to use the language that here is criticized and displaced. The other sense of différer is the more common and identifiable one: to be not identical, to be other, discernable, etc . . . . (Derrida, 1976, reprinted in Culler, 2003: 145; emphasis in the original) By traces, Derrida means, something left behind, residue that points to other residue and never to external realities (also captured in his ‘logocentricism’), fragments of other times and spaces that we cull as we narrate, and that are endlessly displaced and deferred. But the self isn’t all of our making, emerging forth from our mouths or pens in agentive ways. As Derrida reminds us, the self is a hostage as well, forever caught in the other’s gaze, forever carrying traces of the others’ voices, with the ‘voice of the friend’4 being intrinsically a part of the existential self. The question ‘who am I (Mein kaun hoon?), then, can be answered not just in terms of ‘Who is that person?’ (voh kaun hain?), but in terms of the accompanying doppelganger, the friend’s voice (mitra ka aawaz). The ‘who’ component of the ‘I’ then, permits us to rethink autobiographies in terms of ‘who has been the subject of this experience?’, a question that at once distances the author from herself and opens up an exteriority and the possibility of the ‘I’ being more indefinite. The shift to the what of a narrative (as the Ricouerian epitaph points out) casts into relief experiences that partially define the who. While Derrida maintains that the call to respond to ‘who’ has moral, political and juridical imperatives, the term remains elusive. As he points out, ‘something of this call of the other must remain nonreappropriable, nonsubjectivable, and in a certain way nonidentifiable’ (Derrida, 1995: 276; my emphasis) since the ‘who’ is both a part of ‘I’ and because there has to be a way of respecting someone else’s otherness. In the case of patients suffering from Alzheimer’s disease, this point about ‘who’ or what it is of themselves they are culling into a narrative assumes most poignant overtones since their memories are fast becoming ‘cinders’ and the need to hold onto them, to language them into print becomes a way of keeping the embers at bay. Appropriating their memories and experiences, rendering themselves subject and hostage to their writing, and self-consciously identifying traces of themselves become gestures of willing the ‘I’ and the accompanying ‘who’ and ‘what’ into existence. As we will see, the ‘I’, the ‘who’ and ‘the what’ are revealed through the readings and enactments of

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particular signs that through repetition irrevocably mark and ‘constitute’ the person (through particular behaviors, patterns of speech; cf. Bolt, 2007; Burke, 2007). The deliberate constitutions of themselves and their loved ones in the diaries point to degrees of agency that both patient and caregiver retain and claim before all becomes cinders. Presences and their entailing absences, absences and their entailing presences with silence undergirding them all flow like thick currents through the writing, anticipating unforgiving deserts while stemming flows as well.

Diary Entries by Alzheimer Patients and their Caregivers The excerpts that I am basing my discussion on are drawn from six diaries written by patients and caregivers. Some carefully considered criteria went into the selection. First, I wanted to cover an adequate time-span (of about 15–20 years; hence a diary published in 1988); second, I wanted to include a diary/journal written by an established literary figure to make the pool heterogeneous (hence John Bayley’s diary about Iris Murdoch); third, I wanted to address both parent–child concerns (hence a daughter writing about her mother); and fourth, I wanted to include unpublished diaries (hence those shared by my colleague). All of these diaries, except the unpublished ones, are available as published books and are, on an average, about 150–200 pages each. When selecting excerpts from diaries written by people with the ailment, I focused on those sections where they wrote extensively and self-reflectively about their feelings regarding their condition (the diagnoses, their everyday negotiations with living) in a retrospective manner (something they could do if they remembered a part of their immediate past they wanted to text in). With caregiver texts, I concentrated on those excerpts that spoke to both capturing aspects of their loved ones’ personalities while also speaking to tensions with living with the condition. While the body of excerpts is quite large, I have picked representative samples that best capture the confluence of issues that inform the present argument. The diaries are as follows: (1) Kim Zabbia’s Painted Diaries (entries by both patient and caregiver/ daughter); (1996). (2) Rosalie Walsh Honel’s Journey with Grandpa (1988). (3) Christine Boden’s Who Will I Be When I Die? (1998). (4) Diana McGowin’s Living in the Labyrinth (1993). (5) John Bayley’s Iris (1999). (6) The unpublished diaries of Billie Dotson Vincent, written about her husband, Theodore Vincent (shared with me by their grand-daughter and my colleague Menard-Warwick, 2007).

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Whether patient or caregiver diaries, spaces between memory loss, everyday living and the languaging of the condition was central to my selection. What follows is a discussion of two themes: The first, culled from diaries of patients, addresses issues relating to repetition and signs, and the second, based on the entries of patients and their caregivers addresses traces and intentions. As will be evident, these themes flow into each other; breaking them up as I have done here is more a textual nod at clarity than anything else. Repetition, signs and self Signs, Roland Barthes (1978: 215) says, are not proof, since anyone can produce false or ambiguous signs. Hence one falls back, paradoxically, on the omnipotence of language: ‘since nothing assures language . . . for a thing to be known, it must be spoken; but also, once it is spoken, even very provisionally, it is true’. This idea profoundly informs the efforts of patients and caregivers as they text themselves and loved ones into existence. The signs that they are constructing themselves around are revealed through their absences; they are ‘sure-signs’ whose assurances emerge in narrative, in languaging and do not point to any external identifiable object in the world. Indeed, in some ways, they are signs that go beyond all signs, final ‘proof’ (of a sort) that identify one as who one is (whether in terms of skills, modes of behavior, body postures, gestures, way of writing) to oneself.5 In the light of the present context, I would argue that the Alzheimer diaries – by patients – constitute this set of signs (assemblages that serve as textual shadows, predicated on repetition, anchored in metaphorical grounds, memories, past histories and personal experiences). Take for instance the following excerpts from diaries written by two Alzheimer patients: Excerpt #1 Journal Entry, November 30, 1985 On October 5, 1985, I went to Dr. Walker for a checkup because I had not been feeling well, and was forgetful and dizzy at times . . . At this point of my life, I am able to do most things normally. I can hold a normal conversation, although many times a certain word will not come to me. One example is the day I was talking to my son and I said that Alzheimer’s was the gradual loss of memory and intellectual skills. I got to the word ‘intellectual’ and the word would not come to me. I thought about

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that word all evening. When I woke up the next morning, it was still on my mind. Then I said it immediately. Some time ago, before I had ever been to a doctor about this condition, I tried to use my typewriter and I was shocked when the letters I typed were all wrong. Unknowingly, I had put my hands on the wrong home keys. I tried over and over to type a sentence and none of them made sense. The same thing happened when I tried to use my sewing machine. I could not remember how to use the machine. I had to change the thread and could not thread the machine properly. I even re-read the instructions and I still couldn’t do it right . . . . (Zabbia, 1996; my emphasis) Excerpt #2 The neurologist with his back towards me, looking at my scans, said, ‘Your brain is like that of a much older person, showing signs of marked atrophy, particularly at the front. It’s consistent with Alzheimer’s’. He looked away from the scans for a moment, and then said, ‘You shouldn’t be in any responsible position. You must retire as soon as possible . . .’. I must have misheard – he was mistaken – the scans maybe had got mixed up with someone else’s . . . ‘You’re joking – I’m too young to get Alzheimer’s!’ I was only forty-six – old by my daughters’ reckoning, but surely far too young to get an old people’s disease like Alzheimer’s. Any rate, I wasn’t forgetful, just stressed out – with migraines and getting a little confused every now and then – taking the wrong turn a few times surely didn’t mean I was getting senile! (Boden, 1998: 3) ... ‘Er . . . how long will it be before I . . . er . . . um . . .’ I stuttered. ‘Until you become demented? Oh, about five years I expect,’ answered the specialist, breezily. ... Each patient declines in his or her very own way, losing different abilities at different times. So would I be able to write next week? Would I be able to calculate my finances on next month’s bank statement? Would I get lost after taking the girls to school tomorrow? What will it be like to be demented? How are my girls going to cope with my terrible deterioration,

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and eventual death in maybe 6–8 years’ time? All these questions, and more, kept running through my mind, and I had to work through a lot of fear and anxiety. But ‘popular’ misunderstandings about Alzheimer’s disease didn’t help me and my girls much – we were up against more than just the disease itself. (Boden, 1998: 18; my emphasis) In both instances, the patients are deeply troubled at not being able to do/repeat what they once could, and (sure) signs in both cases are about what they once had and about what they might lose. Zabbia voices anxiety over the ailment impeding everyday actions and Boden anticipates what things will be like as the ailment takes over. In neither case are these signs identifiable with objects in the world, but are fixities these patients have of themselves based on their past ability to function ‘normally’ (with threading a sewing machine or typing) and on their (now weakening) ability to repeat those functions. Narrating about the (impending) loss of this ability ensures a performative aspect of their abilities, an anxiety that they need to assuage by creating textual doppelgangers. I think of Derrida’s term ‘recit’, of which he says: [A recit]: . . . is not simply a memory reconstituting a past, a recit is also a promise, it is also something that makes a commitment toward the future. What I dream of is not only the narration of a past that is inaccessible to me, but a narration that would also be a future, that would determine a future. (Derrida, 1992: 207) The word recit reminds us inevitably of English ‘recital’, a term that has the performative built into it. A recital, whether of a poem, or of a musical piece or a dance, assumes that the audience is capable of picking up and reading the signs ‘correctly’ – that there is a recognition of some kind on the part of the audience (Latin cognare: to know, re: again). That knowingagain process (or re-cognition) is of the signs, of a signified commonly assented to by the listeners or spectators. Recitals of this nature suggest their intent and meaning through repetition of the same words or musical notes or dance gestures. Watching or hearing that repetition gives us not only delight but some deep reassurance that we live in a shared world, that our voicings, movements, texts echo back – albeit in varied form – what we send forth. What the patients above are grieving is the (impending) loss of these repetitions, of being able to re-perform the very acts that are (sure) signs of reassurance to their caregivers/caregivers and to themselves (as in

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classical recitals) that re-cognition or knowing again still occurs. When the ability to perform (or receive the intent of ) a recital slips away, that sense of a meaningful shared world recedes, a prospect that is deeply destabilizing for Alzheimer patients whose faculties are not wholly impaired, and who are aware of their loosening grasps. But why the fear of the loss of recognition? And why is repetition so important? Going back to the previously cited quote of Derrida’s: Derrida’s gramme (1997), his signification that it is a priori written, whether inscribed or not, in one form or another, in a ‘sensible’ and ‘spatial’ element that is called ‘exterior’ is what calls out for the originary first recognition, ‘the arche phenomenon of memory’. Memory is what enables us to repeat that first recognition, and without repetition there could be no memory, for the fact of the memory implies that a replica, a repetition of the gramme that has been stored. Derrida suggests that we have to leave in the domain of the unthinkable what that a priori signification is, the moment of the birth of meaning. But once it has happened, repetition alone ensures that signification continues through the temporalizing process of difference. The following excerpt captures the importance of being able to repeat, and the fear and pain at not being able to do so: Excerpt #3 Journal Entry, August 26, 1986 To best understand what this disease can cause, let me tell you some of the things that have happened to me in the last three years. My short-term memory has gotten very bad. I have trouble remembering anything I write down. I continually am asking someone questions and then repeat the question, never remembering that I just asked it. In normal conversations I lose words and names. They will just not come to my mind. It is embarrassing, really. I have trouble following instructions for recipes and medicines, especially medicines with varied dosages at various times. In church, I have found myself not able to keep up with my hymnals or prayers. I can’t keep up with the music. Sometimes it seems to be my eyes, but I don’t think so. I’ve recently seen an opthalmologist and he said I was fine. Anyway, it is annoying, may be it’s just my inability to concentrate for any length of time on one thing. (Zabbia, 1996) Repetition, thus, is crucial in signification, and the fear of not being able to repeat what one could do (one’s (sure)signs) crucially impacts how Zabbia sees herself now. In this sense, the writing of her diary is a way to make herself hostage to herself; for her, as for the other patients, diaries

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have become assembled shadows/(sure)signs that patients need to text to preserve a sense of ‘who they are’, to remind themselves that they can indeed repeat, imitate, reproduce. The dread of Alzheimer patients and caregivers of the loosening grip on meaning (their sure-signs) suggests that there is a slow erasure of that initial moment of the signification process, that gramme in the archememory that enables meaning to be constructed on the basis of difference. What fears is Christine Boden articulating when she wonders: ‘Would I be able to write next week? Would I be able to calculate my finances on next month’s bank statement? Would I get lost after taking the girls to school tomorrow?’ (Boden, 1998: 18). If the gramme can be lost, as happens with Alzheimer’s disease, was its ‘founding’ equally a matter of brain tissue developing and then decaying? In other words, is the ontology of signification a constructed one? Meaning, Freud would say, begins with an infant’s perception of the mother’s coming and going. Freud’s grandchild, an infant of 16 months, plays his fort (gone !)-da (there !) game by himself with a spool of thread, about the presence and absence, of the mother. The child’s consciousness has picked up the difference between the presence of the mother as different from the absence of the mother, and with that difference established, can go on to construct meaning, and play with the spool that he throws under the furniture (absent) and retrieves (present) again and again. The question remains: how does the child see the absence as not presence? An unanswerable question.6 The discernment of difference is the basis of meaning (Guattari, 1995). And the importance of difference in constructing meaning is shadowed in the dread of not knowing the front from the back of the dress (mentioned in one of the diary entries below) or being able to calculate a bank statement (above). The gramme, then, the very first instantiation of a memory/trace on which the self is predicated, seems to be under erasure, threatening not just memory, but one’s very personhood. What appears to be growing, then, is a fear of blankness, no longer the absence of a loved one, or even oneself, but blank nothingness, the Derridean effacement of traces. Zabbia, in the later stages of her ailment, notes: Excerpt #4 Journal Entry, June 1988 Changes since I came home from the last trip to Bethesda term – my short term memory is very bad, I have forgotten if I have eaten or dressed, or eaten. Sometimes forgotten if I have same time it is on the table when we are eating meals.

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I know why. I have stopped talking less. This is a complete change in my talking. I have always been able to carry on a conversation on a one to one level or with a group. Probably too vocal. I cannot decide on anything. Bert gets so outdone with me, and then I cry and he gets mad again. I really try to stop the cycle, but it is hard. It is a vicious cycle. I get depressed because I can’t do things right and there are the tears again. Then Bert is angry again. What a mess! (Zabbia, 1996: 101) Such a mental disappearance is an analogy of death but far worse, for while the body lives some sense of an ‘essential self’ has gone. This fear of not knowing what there will be in the coming dark, the dread of being abandoned by one’s very self and personhood drives patients and caregivers to writing so as to preserve shreds of that which once lived and moved and had its being in a more than physical (‘Oh spare me a little that I may recover my strength, before I go hence and be no more seen’ as is said in the Book of Common Prayer; Psalm xxxix). The point here is that a written record gives the illusion that something remains, that something still shines bright caught in the writer’s black ink.7 The next section addresses this issue of scripting selves in relation to traces and absence. Traces, intentions, self Bataille (1983) speaks of the desert of words in which we are all mired, saying that each grain of sand is a ‘fold’ harboring notions that poetry alone can release. ‘That sand into which we bury ourselves in order not to see is formed of words, and contestation, having to make use of them, causes one to think . . . of the stuck, struggling man whose efforts sink him for certain; and it is true that words, their labyrinths, the exhausting immensity of their “possibilities”, in short their treachery having something of quicksand about them’ (Bataille, 1983: 14). While language may indeed be and become the noose by which we hang ourselves, it is also the life-line that pulls one out of deep waters into air and light. It is this deliberate, intentional hold on what is fast threatening to become ‘absences’ as pockets of night creep in that this section explores. I begin with entries (in excerpt 5) that underscore the anguish of a sense of life-waters flowing away. Excerpt #5 Journal Entry, March 10, 1986

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. . . I explained to him [the doctor] how I couldn’t remember any medicine when he had asked me. He kept my papers that I had written and told me to keep writing. I also told him about the fact that I have sudden jerks and pulls of my arms. For example, I’ll be reading the paper and my arm will jerk suddenly and almost pull the paper out of my hand. Another weird thing is: I will be sitting or standing and I have this illusion that someone is standing behind me. It’s so strong I turn to say something. Now, that’s weird! (Zabbia, 1996: 42–43) Journal Entry, August 23, 1986 One think I believe I hate the most is hiding things from myself. I will put something away in the kitchen and never put it in its original place. Then I have to look everywhere to find it. . . . I think what I hate most is a loss of intellect. My handwriting is horrible; my spelling is worse. I Liquid-Papered this diary to death with my proofreading. Sometimes I repeat what I have said and don’t even know it. Journal Entry, February 26, 1988 I have been telling myself to perk up and stop getting depressed when everything is lousy and I can’t spell well or see well, or remember over and over again . . . . Alright, now comes the time to get dressed. All of these clothes have a front and back, OK? Now we proceed to find out which one is the front, and which one is back. About this time, I husband comes in to see how I am doing. He gives me a tip on finding the right side. By this time I am completely confused . . . . Now that is just everyday dressing. Getting ready for a special affair is another story. (Zabbia, 1996: 96) August–September 1988 (Copied by Kim) I have a problem in my writing and my reading. ... It is hard. I have realized that I cannot read my own writing. I thought that if I could not read it, nobody else could read it. I really don’t have to write. I could live the rest of my life not writing, but I would be very sad . . . . I cannot write anymore, It is just a lot of words that don’t make sense to me. ... I wish I had more to keep me busy. I really miss not being able to read. I could always pass the time and read. Most of the things I could read and right. (Zabbia, 1996: 102; my emphasis)

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What of herself is Kim’s mother trying to retain? What traces of her past does she desperately want to (us) remember? The spaces that she wishes to claim are unbearably ordinary – that she could once read, and dress herself, that there was a time when she wasn’t self-conscious about her handwriting or her body – and yet, in the end, this is what our lives are also about. Her texting of the ‘normalcy’ she once had affirms both the inalienable human need to claim one’s existence, sanity, balance and the staving off a confrontation with death and abandonment. Blanchot maintains that: the basis of communication is not necessarily speech, or even silence that is its foundation and punctuation, but the exposure to death, no longer my own exposure, but someone else’s, whose living and closest presence is already the eternal and unbearable absence that the travail of deepest mourning does not diminish. And it is in life that the absence of some one else has to be met. (Blanchot, 1988: 25) While Blanchot is referring to how another’s existence seizes and defines us, his quote is heartbreakingly applicable to Alzheimer patients inasmuch as they experience a kind of death, their own death even while they live. In their lives they have to meet their own absence – their absence is present to themselves. Under these circumstances, what is left to them save to catch the traces of themselves that Alzheimer patients fear they must write into being? The unmitigating attendance of that looming absence of self, the veracity if something that can still be caught in the present moment is what these repeated traces indicate. Kim’s mother’s wrenching worry hark back to absences she feels acutely in her present moments, to anxieties about abandon, about not being able to gather oneself (either in dress or in text) or engage with difference since parts of oneself are receding, cast as they now are in wide-open spaces that, like God, know no containment. The boundaries between herself and not-self, boundaries that are so crucial for a sense of self to prevail are receding; these are the waste spaces she dreads she will occupy, and her repetitions and fears are what she shores against her ruin for as long as she can. Nancy says: Space is everywhere, there is no place in which to gather either the mystery or the splendor of a god. It has been granted to us to see the limitless opening of that space, it falls to our time to know – with a knowledge more acute than even the more penetrating science, more luminous than any consciousness – how we are delivered up to that gaping naked face. It reveals only us . . . . (Nancy, 1991: 148–149; my emphasis)

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What we are left with, then, when memory and language fail is our abandon. ‘The only thing we might still gather for ourselves, apart from all the rest (the erotic, the political, the poetic, the philosophical, the religious) is this abandonment’ (Nancy, 1991: 149). And yet it is precisely this abandonment – or the fear of succumbing to it – that Alzheimer patients and their caregivers resist. This is why the gathering of thoughts, memories, images, sensations into written texts point in some sense to the creating of traces to stall absence of both self and beloved. Given below are three very different excerpts from the diaries of caregivers, with each one texting their experiences with the patient very differently: Excerpt #6 This morning about 5 a.m. while I was writing in my Journal and collecting my thought – drinking tea and reveling in the quiet uninterrupted morning . . . Tad appeared on the scene with you ‘I have a serious talk I want to have with you. I think we should move to Portland. The folks here are kind but so busy they don’t have time for us – and when one of us gets worse we’ll really be in trouble’. So calmly I talked to him – but he wasn’t listening. ‘Why don’t you call later and talk to the folks in Portland’? I suggested – knowing he would not initiate a call. ‘Or better still’, he said ‘I’ll write them a letter’ – then I relaxed for I knew those promises of letter writing rarely materialize. After a while I convinced him this was the best place for us – he had Glen to walk with each morning, and play pool with whenever – and we had the family gatherings and the Friends Meeting etc. And it would be difficult finding a more accessible town than Bellingham – I know my way around and we have the world’s best doctor, etc. etc. Later he came in weeping, wondering why we weren’t sleeping together, and would I come in and hold him in my bed, and we cried together for a while, then he felt calm enough to return to bed and slept for another couple of hours. But it was a day when nothing seemed to come out right – even our walk on the beach was not as peaceful as usual and by 7 p.m. my spirit was low, low, low. (Billie Vincent’s unpublished diaries: 4–5, 12) Excerpt #7 Alzheimer sufferers are not always gentle. I know that. But Iris remains her old self in many ways. The power of concentration has gone, along

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with the ability to form coherent sentences, and to remember where she is, or has been. She does not know she has written twentyseven remarkable novels, as well as her books on philosophy; received honorary doctorates from the major universities; became a Dame of the British Empire . . . If an admirer or friend asks her to sign a copy of one of her novels she looks at it with pleasure and surprise before laboriously writing her name and, if she can, theirs. ‘For Georgiana Smith. For Dear Reggie . . .’ It takes her some time, but the letters are formed with care, and resemble, in a surreal way, her old handwriting. She is always anxious to oblige. And the old gentleness remains. (Bayley, 1999: 41; my emphasis) Excerpt #8 Conceivably it is the persons who hug their identity most closely to themselves for whom the condition of Alzheimer’s is most dreadful. Iris’s own lack of a sense of identity seems to float her more gently into its world of preoccupied emptiness. ‘Placidly every night she insists on laying out quantities of her clothing on my side of the bed and when I quietly remove them, back they come again. She wants to look after me? Is that it? It may be a simpler sort of confusion for when we go to bed she often asks me which side she should be on’. Or is it something deeper and fuller and less conscious and less ‘caring’ than that far too self conscious adjective suggests . . . . (Bayley, 1999: 71–-72; my emphasis) In both of these instances, the caregivers are attributing particular intentions to their loved ones, thus creating for them a sense of self (Kramsch, 2000). This attribution of intentionality to the patients – of Billie Vincent writing about Tad’s saying that he’d write to the people in Portland, even as she doubts that he will – and of John Bayley writing about Iris Murdoch laying out quantities of her clothing on his side of the bed – emerges from their respective interpretations of their loved ones’ acts as still meaningful. The caregivers are in effect attributing consciousness to their loved ones. This is a crucial point. That Tad Vincent and Iris Murdoch emerge as intentional beings with degrees of conscious abilities (writing a letter or gathering clothes by the bedside) is a sense that emerges because these actions have become for their caregivers focal points based on actions performed long ago, fore-shadowing outlines traced in advance with repeated, everyday engagements. They are reading what to others might be ‘incoherent’ acts as ones that are consequential and agentive. They knew their partners intimately over a lifetime, were witness to their glories

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and successes and pains, and have more recently been on the sidelines caring for their loved ones through more undignified moments and embarrassing situations. No one has a better sense than them of what their partners still retain, and the pockets of darkness that invade their partners’ consciousnesses. It may be noted that John Bayley admits that his interpretation may be wrong, that the intention maybe quite other, the action that so affects him coming from some darker unknown source. This discussion of intentions – what one intends, how we read other’s intentions, what intentions we attribute to others – is intimately connected to the texting selves. The reading of what their partner’s actions mean to them and their subsequent scripting of their interpretations also points to larger phenomenological swirls between the potential and actual, the implicit and explicit. All (intentional) experiences (where one willfully sets forth to do something) have rings of potentialities around them that evade our languaging. Our readings of others’ intents give voice to what might otherwise remain mute even as it falls short, since the object of our scrutiny is always much more than what appears. Our understandings and interpretations of the world also constrain our full understanding of them because of the invisible borders that our comprehension draws around them. To intend is to apprehend, to take something up as meaning something, to seize or focus on a way that precludes other foci for the moment. The interpretations that caregivers have texted into place of their loved one’s actions is a deliberate attempt at constructing a very particular image of them that presents them as still agentive, still meaningful, so that something re-cognize-able of the other remains, an imperative that permits them (the partners) to move on with caring and living. Thus, even while one admits that ones’ readings are always uncontained, hovering forever between absence and presence, potential and actual, implicit and explicit, it seems to help in the case of Alzheimer patients to fix meanings for a little longer. Derrida was a salutary antidote to those of us who have lived too long with fixed meaning; his ideas seemed to free us into an air that was heady with excitement as we watched philosophical concepts that we had thought immutable and eternal crumble. But in the world inhabited by the Alzheimer patients and their caregivers, fixity of meaning is all, as Derrida doubtless recognized when he noted that what he dreaded most was the loss of memory. As he said: The only loss for which I would never be consoled and that brings together all the others, I would call it loss of memory. The suffering at the origin of memory for me is the suffering from the loss of

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memory, not only forgetting or amnesia but the effacement of traces. (Derrida, 1995: 143) If there were no fixed traces for him to undo, he would have no task; he could have said nothing about deconstruction. Alzheimer patient caregivers live in a deconstructed nightmare where meanings have lost their moorings and floated free; where will and intention count for almost nothing. Small wonder then that they keep these diaries to record and fix, to draw boundaries, to remember a self that is fast sailing towards a sea of darkness.

In Winding this Down So what are we to do with these swirls of repetition, (sure) signs, absences and intentionalities? What foreshadowing am I engaging in as I graph this argument into existence? Beyond invoking this endless maze of being hostage to oneself and one’s presences and absences, the above discussion has also called attention to several imponderables. Is it the gramme in the arche-memory that is being slowly effaced by the ailment? In which case, is the originary signification a construction that we build on, a ‘foundation’ that becomes indispensable to our recits? Is our sense of stability and moving forward tied intimately to our ability to repeat and forever repeat, and to our expectations that versions of repeated acts wing back to us, since it is in them that we seek the reassurance of the balance in our footsteps? While these questions may remain unanswerable, it is worthwhile to dwell on what it is that (auto)biographies manage to communicate both through their forms and content. Degrees of stasis are inherent in all writing, with (auto)biographical writing being laced with degrees of coherence and rationalization (and sometimes a chronological linearity) that renders past life-events as immobile, conferring a sense of the ‘formed’ for that which is always in process. But doing a discourse analysis of the sort presented here allows us to see why a self or lived life needs to be formed and that too formed urgently. The need to script oneself and one’s partner into place is starkly apparent in the diaries, and makes us aware of how such analyses alerts us to ways in which ‘process’ in the present case of Alzheimer patients and their caregivers is no longer just one of a self always being in the making, but one of a self that is becoming unmade. ‘Process’, then, is not so much about adding on as much as holding on. Such kinds of analyses show how diary writing become agentive and daring acts of texting memories, selves,

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intentionalities into place, even as they show us how utterly fluid our identities are as memories dim and fade. But beyond the texting of their loved ones’ selves, diaries by the caregivers point to the dissolution of borders between them: ‘their partners’ stories are theirs and their stories their partners’. The flows into and mergings of each others’ stories are about presences and absences being claimed and filled in before the last shadows fall and all is rendered cinders. The diaries remind us that scripting selves may be all we have, and perhaps our last agentive efforts to stall the coming dark.

Afterword Foucault and Merleau-Ponty Having become a dense and consistent historical reality, language forms the locus of tradition, of the unspoken habits of thought, of what lies hidden in a people’s mind; it accumulates in ineluctable memory which does not even know itself as memory. Expressing their thoughts in works of which they are not the masters, enclosing them in verbal forms whose historical dimensions they are not aware of, men believe that their speech is their servant and to realize that they are submitting themselves to its demands. The grammatical arrangement of a language are the a priori of what can be expressed in it. The truth of discourse is caught in the trap of philosophy . . . . (Foucault, The Order of Things, 1979: 297) Merleau-Ponty But our body is not merely one expressive space among the rest, for that is simply the constituted body. It is the origin of the rest, expressive movement itself, that which causes them to being to exist as things, under our hands and eyes. Although our body does not impose definite instincts upon us from birth, as it does upon animals, it does at least give our life the form of generality, and develops our personal acts into stable dispositional tendencies. In this sense our nature is not long-established custom, since custom presupposes the form of passivity derived from nature. The body is our general medium for having a world. Sometimes, it is restricted to the actions necessary for the conservation of life, and accordingly it posits around us a biological world; at other times, elaborating upon these primary actions and moving from their literal to a figurative meaning, it

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manifests through them a core of new significance: this is true of motor habits such as dancing. Sometimes, finally, the meaning aimed at cannot be achieved by the body’s natural means; it must then build itself an instrument, and it projects thereby around itself a cultural world. (Merleau-Ponty, 1962: 169) Notes 1. 2.

3. 4. 5. 6.

7.

A version of this chapter appears in the Journal of Literary and Cultural Disability Studies, 3, 1, 67–84. While there have been philosophical debates about whether the ‘I’ of selfaccounts is a fictional one or one grounded in experience, and one that emerges in particular ways given current discourses of subjects at the time, the pronoun and what it both reveals and hides continues to remain a contested term. An anonymous reviewer called my attention to this point. This is a Heideggerian notion. See Naas (2003) for an explication of how sure signs work in the Penelope– Odysseus story. Guattari explains that Freud viewed the compulsion to repeat (Wiederholungszwang) as a symptom of particular neuroses (sadism, masochism). ‘This compulsion manifested an irrepressible tendency (that he often called demonic) towards the complete discharge of excitation and the extinction of tensions and conflicts’ (Guattari, 1995: 73). This paper, though, argues that repetition constitutes some bases of self. This is worsened by the thought that not even the dignity surrounding death, which has been the inspiration of so many poems (‘The Burial of Sir John Moore at Corunna’, Marvell’s ‘Ode on the Execution of Charles I’, James Shirley ‘The Glories of our blood and state’, Wordsworth’s ‘A Slumber did my spirit seal’ to name a few) or the obliviousness to death is available here. This is worse than death. Wordsworth catches the loss powerfully as he remembers the dead Lucy who seemed a thing that could not feel the touch of earthly years: No motion has she now, no force, She neither hears nor sees, Rolled round in earth’s diurnal course, With rocks and stones and trees. If Lucy had been struck by Alzheimer’s and Wordsworth had been caregiver (as indeed his wife was caregiver to his 90-year-old Alzheimer-stricken sister Dorothy), he might not have wanted that body to have motion or force but to lie still in earth.

Chapter 4

Poststructuralist Discourses and Chronic Ailments: (Type-1) Diabetes, Epilepsy and Body Breakdowns

Moving back into the realm of the ‘physicalities’ of bodies, this chapter begins with an open acknowledgment that writing about (post) modernity, disability, bodily breakdowns and societal discourses is not an easy task because each of these terms embed and narrate bodies and humans in distinct ways. On the one hand are medical discourses of bodies and bodily breakdowns that have tended to proceed from a generally utilitarian view of ‘fixing’ the ‘patient’s’ ‘problems’, with specific causes and symptoms being linked to specific diseases. These discourses, of which societal discourses are a part (since the latter tend on the whole to reify the former), have typically dehumanized ‘patients’ and have attempted to understand them primarily in terms of their malfunctioning body parts (Bury, 1998; Scambler & Higgs, 1998; Watson-Gegeo, 2005; Williams, 1999). On the other hand are postmodernist discourses about bodies that tend to err on the side of over-romanticizing them: bodies, like gender, are performed, maintains Butler (2004) and Katz (2005); they have to be understood as fluid and malleable and as entities that resist categorizing. In its verve towards avoiding entrenchment and rootedness of any sort, such dis-courses have tended to not accord much space to disabilities in general and chronic ailments in particular.1 While valuable and indeed necessary, both sets of discourses seem to fall short because they disallow us from speaking/writing about bodily breakdowns – especially those relating to chronic ailments – in sensitive ways. In an effort to sidestep the pitfalls of these discourses, while also moving debates about bodies and their corporealities forward, this chapter 60

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attempts to carve out an interstitial space that counters both societal discourses about ‘disabled’ bodies and some strains of postmodernist notions of bodies. It also begins to theorize the ‘experiential’ around body breakdowns. While the experiential undergirds accounts (indeed the testimonies of breast cancer patients and their partners, as well as of Alzheimer patients and their partners are about their experiences in dealing with respective conditions), this chapter directly addresses ‘experience’ to mull over what the term means in the contexts of chronic ailments. While the social science strains of applied linguistics assume ‘experience’ as its default – indeed, the qualitative aspects of the discipline is grounded in the telling, interpreting, disseminating of (our and other’s) ‘experiences’ in a variety of realms (education, media, geographical spaces) and along diverse social lines (race, caste, gender, nationality) – it has, on the whole, abstained from directly theorizing the ‘experiential’ around ailing/’disabled’ bodies: how health concerns get spoken about, how it accumulates ‘weight’ and permanence over time, societal discourses around particular ‘experiences’, living with tensions around repeated disability-related experiences over which they have little control. One reason for this may be because of a general historic tendency in the social and medical sciences to privilege linear cause–effect relationships and ways of rationalizing, where particular malfunctioning body parts and ‘disabilities’ are described in terms of their ‘causes’. Making ‘effects’/ experiences the starting point allows us a way to splinter this orientation, so as to render the supposed ‘cause’ of the disability more problematic than assumed by either medical or poststructuralist discourses. I am concerned here with the experiences of and around two chronic ailments: diabetes and epilepsy. While both ailments have few surface tell-tale signs, and are, for the most part, ‘invisible’ – both conditions manifest themselves in breakdowns of diabetic comas and epileptic seizures. Both ailments are chronic conditions that disrupt everyday living in small and not-so-small ways, both have strong societal and medical discourses around them that patients and partners both succumb to and counter, and both have serious consequences when their bodies break down. Two central questions that inform the present discussion, then, are (1) In what ways do the lived experiences of patients with chronic ailments allow us to create a textual space that permits more humanistic narratives about the body? (2) In what ways do our discursive practices ‘flatten’ disability experiences and how can we build in (textual)fluidity? What implications do such maneuvers have for the discursive construction of disabilityrelated texts?

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Because one aim was to create a space that counters narratives that have over-typified bodily breakdowns and others that have tended to over-romanticize them, it seemed crucial to work out a methodology that would enable the experiences of people with these ailments to be heard, while also creating contexts whereby their bodies, conditions and our texting of them could be rendered more fluid. Details about this are addressed in the section ‘Details about the Project’.

A Partial Conceptual Backdrop for the Present Study: Ailments/Disabilities are Emergent Properties Speaking of the geographies of disability, Ruth Butler and Hester Parr (1999) write of the dichotomizing strains by which bodies and ‘disabilities’ get languaged. The polarizing discourses – especially those around ‘mind vs. body’ societal vs. medical, modernist vs. postmodernist, ‘able vs. disabled’ – have tended to lose sight of a host of interconnections that people with chronic ailments have to wrestle with: pain, pressures to be ‘normal’, maintaining degrees of self-respect in everyday working lives, and preserving semblances of ‘normalcy’. On the one hand are medical discourses about impairments that have typically framed patients in terms of ‘individual medical tragedies’ (Scambler & Higgs, 1998) wherein bodies are spoken of in terms of its limitations, malfunctions and inabilities. An assumption latent in such discourses is that it is the individual body that is at fault and that medical interventions can ‘cure’ it. A justification for such discourses has tended to be in ‘practical, ‘applied’ terms: an accurate diagnosis of the ailment (‘cause’) will mitigate the ‘effect’ and lead to an appropriate ‘cure’. Primarily Western in orientation, this model of disability, which has the linear cause–effect rationalization at its core (very much a modernist enterprise), is particularly associated with the rise of medical science at the end of the 18th and 19th centuries. As Parr and Butler (1999) point out, the objectification of disease and illness rested on two interrelated processes. First, noted in Chapter 2, the development of science tended to separate disease from the experience of the sufferer and relocated it in a system of thought about the human body based on the findings of pathological anatomy (Bury, 1998). Second, this rhetoric became normalized and accepted by the medical profession to where the disease and the patient became two separate domains (Butler & Parr, 1999). Most prevalent and dominant in every aspect of medicine, including the diagnosis, treatments, insurance companies and hospitalizations, the separation of the ailment from the patient’s lived experiences is evident in a variety of everyday contexts that the ‘disabled’ person operates in (filling out of forms that identify

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previous ailments, talking to doctors about symptoms, talking to pharmacists about current medications). In all of these discourses, the body and its conditions are (ironically) disembodied, a point that has not gone unnoticed in sociologically oriented scholarship. Brisenden writes: The medical model of disability is one rooted in an undue emphasis on clinical diagnosis, the very nature of which is destined to lead to a partial and inhibiting view of the disabled individual. In order to understand disability as an experience, as a lived thing, we need more than medical ‘facts’ . . . The problem comes when they determine not only the form of treatment (if treatment is appropriate) but also the form of life for the person who happens to be disabled. (Brisenden, 1986: 173) Based heavily on biomedical discourses, societal discourses about ailments, too, have tended to reinforce the linear cause–effect paradigm, where ‘disabilities’ and chronic ailments are presented, thought about, and generally languaged in terms of malfunctioning body parts (advertisements for testing blood-sugar levels for diabetes, for instance), and where ‘causes’ are accorded more importance than experiences around fears about not being able to trust one’s body, for instance (common among those living with chronic ailments). Some poststructuralist views of the body have not fared that much better. The ‘body’ has been seen as increasingly uncertain (Williams, 1999), partly because of an ‘upsurge of interest in corporeal matters both inside and outside the academy, but also through the rapid growth of new technologies – from plastic surgery to organ transplants and the new genetics – that render its seemingly immutable features malleable’ (Williams, 1999). Postmodernist discourses of bodies being fluid, fragmented and dispersed can be seen to be partially associated with such societal changes. The body, from such points of view, is everywhere and nowhere: it is at once a fleshy, living organism, an entity that indicates one’s existence in the world, but one that defies documentation and explanation. It is seen as a discursively constructed ‘object’, a product of power/knowledge that can only be understood in the most general of terms so as to avoid any sense of being pinned down or simplified (Merrell, 1992). Experiences around bodies and bodily breakdowns get viewed as interpretations that can be altered, restated and reconceptualized. Ailments are there and not there; if all experiences around bodily breakdowns are interpretations, then these can be dismantled and re-thought, thereby shifting our perceptions of bodies and breakdowns (Katz, 2005). Valuable as poststructuralist thought about bodies and disabilities has been – indeed, this chapter draws on some of it in the latter half – some

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strains of it have tended to elide that space that allows us to acknowledge wounds resulting partially from dehumanizing societal and medical discourses: the pressures to maintain a silence about them, to conform to ‘mainstream’ discourses about ‘able bodies, to hide the shame associated with the “unusual” functioning of their bodies’ (Charmaz, 2005). Foucault’s (1995) views about bodies and discourses of them are crucial here. His insistence that we attempt to understand the historical formation of bodies and their discourses in terms of disciplinary techniques that regulate and monitor their performance, that insist on examinations and that reward conformity, while penalizing resistance gets picked up in different ways in the disability narratives presented here. As the ensuing sections point out, people living with invisible, but serious chronic ailments cannot take their mortality for granted (in ways that the rest of us with ‘normal’ functioning bodies can); neither can they presume to be ‘open’ about their ailments, since the very invisibility of their ailments tends to render them silent. This, however, is not to say that the points about fluidity and malleability that poststructuralist discourses hold dear are irrelevant for disability experiences. Indeed, it is because we feel that they are valuable that we sought to create texting/discursive conditions that might capture aspects of this. My aim here, then, is to bring the body back in humanizing terms (Toombs, 2001; Williams, 1999), to create a methodological and textual space between discourses that risk denying their ‘disabling’ conditions and medical/ societal ones that over-typify them by slotting them in prefabricated spaces. I do need to note here that our clearing of this textual space, where, among other things, patients’ views about their bodies and ailments are validated, does not mean that I am advocating a transparent view of language where the experiences around ailments and breakdowns can be mapped on to language in uncomplicated ways. Connections between language/s and ailments are multidirectional and intertwined, and ‘disability experiences’ are not just constructs that emerge through language, but ones that construct as well, with each of us carrying traces of disability experiences in our minds, bodies, behaviors and languaging. In the case of those living with chronic ailments, this point assumes poignant overtones. The theoretical bases from which we proceed, then, is one that both privileges the voicing of experience, that allows us to speak of ‘what cannot be done away with’ (epileptic seizures and diabetic comas in the present case), while also remaining cross-questioning of texting-discursive practices around capturing these experiences. The pressures to keep comas and seizures from happening – the pills, the shots, the tests, the food plans – are real and partially construct the life of the patient. But this ‘realness’ – this sense of the inalienable presence of the ‘disability’ does not render the

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experiences of ailments as unified or as wholes. Since everything that is experienced is experienced by oneself, it involves an irreplaceable relation to the whole of this one life. Yet over against this concept of experience is life itself, in all its ambiguity, contingency, and unmeaning. Gadamer (cited in Meredith, 2005: 148) maintains that experience has a definite immediacy, that it ‘cannot ever be exhausted in what can be said of it’, since we are always in it. As he says: the very idea of a situation means that we are not standing outside it and hence are unable to have any objective knowledge of it. We are always within the situation and to throw light on it is a task that is never completed. To exist historically means that knowledge of oneself can never be complete. All self-knowledge proceeds from what is historically pre-given . . . . (cited in Meredith, 2005: 150) While everything about this point rings true – language does construct our experiences, and experiences construct us – it is crucial also to get beyond this Gadamerian space of recognizing our situatedness to realizing that the meaning-making processes of our situatedness escape our grasp, that because language and experience also elude each other, the meanings we have/make of things are provisional at best, contingent, various and unstable. The present attempt at understanding chronic ailments and bodily breakdowns needs to be understood in this unstable space; while it was important to give voice to the ailments and their accompanying situated experiences, it was crucial too to attempt building in strains that would render ‘meanings’ and our texting of them more fluid.

Details about the Project The experiences of three people inform this discussion, two of whom are people with epilepsy and diabetes, and one of whom is the partner of the person with diabetes. Each of us is entering this textual space from different orientations. The following are some details about each: (1) Jody Abbott, a 56-year-old, who was diagnosed with juvenile (‘type-1’) diabetes at 14 and who has, in recent years, seen serious changes in his body. (2) Sinfree Makoni – 49 years old, and who was diagnosed with epilepsy at 17. While much of Sinfree’s research has focused on aging studies, he has, thus far, not been able to speak openly about his epileptic condition. He enters this textual space both as one with a chronic ailment and as a researcher.

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(3) Myself, long-time partner of Jody, the primary go-between and mediator between Jody and doctors and insurance companies; also the go-between between Sinfree and Jody as they write and re-think their conditions. Because I wanted to go beyond the simple oral narrativizing of disabilities (Kleinman, 1988) – since interpretations of oral narratives increase the researcher’s risk of affixing meaning to the person/context – to a space that allowed both Sinfree and Jody the latitude to reconceptualize their bodies and ailments over time (should they needed/wanted to), I worked out the following methodology. Both men responded in detail to the following four questions, each of which directly elicit experiences with their respective conditions: (1) I want you to think about the numerous trips to doctors that you have made in your life for your ‘ailment’. What have been some primary ways in which doctors ‘discourses’ have framed you and your ‘condition’? Do any particular discourses stand out? (2) What were the conditions under which your ‘condition’ was first diagnosed? (3) What tensions have you encountered between ‘biological’ explanations of your ‘condition’ and ‘societal’ explanations of the same? (By ‘societal’ I mean everything from how insurance companies respond to your ailment, to how ads frame them, to how your family members do the same.) How are your ‘body’ and ‘condition’ languaged in these contexts? (4) How have your views about your body and ‘condition’ changed over the years? How do you wish your ‘body’ and ‘condition’ to be languaged now and how is that different from before? Both Sinfree and Jody had about four months to respond to these questions. In an effort to render the texting/narrating aspects of this enterprise fluid, I sent Jody’s responses (with permission) to Sinfree and Sinfree’s to Jody to see what the exchange might engender. Justifications for why I did this and what emerged from the process are addressed in point 3 of the next section.

Theorizing Experience around Bodily Breakdowns I turn now to a discussion of three disability-related themes that emerged in Sinfree’s and Jody’s written responses, with specific attention to how the languaging of their experiences speaks to current narratives

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(primarily bio-medical and poststructuralist) on bodies. The three themes are: (1) ailment/disability experiences preceding the languaging of them; (2) ailment experiences accumulating degrees of ‘permanence’; and (3) how reading about each other’s health conditions de-territorializes their some of their sedimented cognitions, while raising issues about text-making issues. Ailment/disability experiences preceding the languaging of them: Medical discourses colonizing the initial ‘shock’ at discovering the ‘ailment’ The onset of textual, medical, societal discourses of ‘disabilities’, needless to say, begins with some experience of bodily breakdown wherein the person first comes face-to-face with the ‘disability’ for the first time. Here is how Jody speaks of coming to the realization that his body was not ‘normal’: Jody: When I was fourteen years old, I began to experience a lot of physical fatigue. I would come home from school in the afternoons and fall asleep on the living room couch, where I would sleep until supper time. When supper was on the table, I would eat, and Eat, and EAT! No matter how much I packed away, though, I wouldn’t (couldn’t) gain a single pound. I was halfway through my teenage years and weighed a mere 98 pounds. I could eat as much as any of my bigger friends, but nothing added any substance to my skinny frame. So fatigue and an inability to gain weight are the two most memorable aspects of my undiagnosed diabetes. I also remember frequent urination, excessive thirst, and having extremely greasy hair (I suppose because it lacked any protein) that just wouldn’t ever look clean. These are all fairly common indicators of this disease. In retrospect, I guess the diabetes should’ve been obvious to us, but in those days diabetes was not high on the medical community’s radar of chronic ailments, especially not for younger people, so it went undiagnosed for too long. When it came time for me to get my driver’s license and I had to pass an eye test, it was obvious that my vision was not right. I remember my biggest fear, though, was not that I might be going blind but that I might not ever get my driver’s license – a fate worse than death for a teenage boy in my neck of the woods! Anyway, still undiagnosed at this point, I went to the eye doctor, who found I had cataracts – another highly unusual condition for a teenager to develop. The optometrist

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was on the ball, though, and made the connection between my eye condition and my other physical symptoms. He sent me to be tested for diabetes, and, sure enough, the test came back positive. I was a type-one (insulin dependent) ‘juvenile diabetic’. So I began taking insulin immediately. I later found out that the doctor had been amazed that I hadn’t already slipped into a coma. Apparently, I was pretty far gone. Anyway, when I began an insulin regimen, my weight picked up immediately. I went from 98 to 120 pounds in the first week! I went to 140 in the first month! But it wasn’t 40 pounds of fat. My whole body filled out. My arms got bigger, my chest filled out, my legs got larger. I generally went from skin and bones to a regular-looking teenager. It was nothing short of amazing. (p. 2) For Jody, this ‘shock’ had partially to do with discovering not just that he was a type-1 diabetic, but the changes in his body once he began an insulin regimen (the weight gain, the body changes); in Sinfree’s case, on the other hand, the ‘shock’ seems to have to do with first seeing his grandfather having a seizure and then subsequently in realizing the effect his (Sinfree’s) ‘fits’ had on his son (being scared). Here is his account of an early body breakdown: Sinfree: In Africa most of the medical doctors I saw were African and they rarely mentioned epilepsy by name when I was consulting them, even if I told them that I had epilepsy they would respond indirectly. They seemed to avoid explicitly stating that I had epilepsy. They would refer to my seizures and the effects of these seizures focusing on how due to the seizures I temporarily lose consciousness – a feature characteristic of the type of epilepsy I have they would insist ‘They all faint’. What is odd about ‘They all faint refrain’ is that the doctors would talk about people who have epilepsy as if I was not one of them. It appears that African doctors, at least the ones I saw, regarded epilepsy as taboo something not to be mentioned even in a medical encounter when talking to me. The vagueness of their discourses about epilepsy when talking to me rendered it extremely difficult for me to understand what was really happening. (p. 1) My first hand experience of epilepsy was not when I had fits myself but when I observed my paternal grandfather having what I retrospectively suspected were fits. I recall VERY VIVIDLY it’s somewhere inscribed in my mind the series of events which I found very disorienting. My paternal grandfather was having seizures, and being beaten while he was unconscious by my maternal grandmother.

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I can’t remember whether she was beating him up or trying to wake him up, but it looked from a child’s perspective so violent. She was being extremely physical with him so I have always been frightened of being beaten when and if I’m unconscious. She would also scream at him, but I guess he couldn’t hear or comprehend him, so the screaming didn’t matter much to him at all. Perhaps she was not being cruel, she was panicking. But there must be something frightening about epileptic fits to children. There was a time recently when I had a fit in my house, and my son was still crying when I regained consciousness. Perhaps the involuntary body movements must be frightening. I also remember having fits myself in a apartment when I was with my cousin, and so I am told he was screaming and he went and called people who spent some time forcing a spoon into my mouth. My uncle appeared and he was very angry, at the rough ways in which they were handling me. (p. 2) In both cases, the initial discovery of their ailment was an unanticipated one. While this is a fairly obvious point to make, what is not quite so obvious is the fact that both of them can only explain their early shocks about their ‘dysfunctional’ bodies in medical terms, discourses of which took hold and thereafter forever colonized their experiences. In other words, their bodily breakdowns happened before they got languaged by medical discourses. This point is crucial to remember not just because particular languaging/discourses embed and normalize the meanings we make of experiences in specific ways, but because it is perhaps at this stage that the cause–effect relationship between ‘ailment’ and ‘experience’ – that is so central to medical and societal discourses – gets cemented for the person with the ailment. Their initial experiences with their conditions get assumed by medical discourses, and the person can never again speak of his/her body without recourse to institutionalized terms/explanations. They are forever framed in and by them; disability, at this point, ceases to be about bodies, and becomes a product of cultural rules about what bodies should be or ought to do. As Bury puts it, ‘the recognition, labeling, and legitimation of illness is transferred from the “lifeworld” of the person to become part of the “monopoly” of the profession of medicine. Only the doctor can know the truth about illness through the language of disease, and the patient becomes a passive agent: For Focault, a “docile body” caught in a web of medical knowledge and medical power’ (Bury, 1998: 7). This view of the language of the medical profession taking over the experience of the ‘disabled’ person can, however, elide the idea that

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experiences of bodily breakdowns are, in a sense, separate from particular languaging of them. While the ailment experiences of Jody and Sinfree construct them and while they in turn language/construct their experiences, their respective languaging and experiences also elude each other’s grasp. Diabetic comas and epileptic seizures are out of their control and happen to them regardless of the language they use or of the language used for them. It is in this space that some strains of poststructuralist thought – those that insist that we can make sense of our experiences only through language – can be seen to fall short. The breakdown of bodies happen regardless of the languaging around it; the ‘body failures’ can be seen to precede the discoursing of it. But this is not to say that poststructuralist thinking about disabilities is entirely irrelevant. With its insistence on not privileging any one interpretation over any other, it has alerted us to the possibility of there always being multiple meanings that we need to constantly juxtapose against each other (Corker & French, 1999; Corker & Shakespeare, 2002). Medical discourses, from this point of view, then, are only one set of discourses that need always to be countered by and laminated against other individual discourses (most especially those of the ‘patients’ themselves and their partners and caregivers). However, for people with (chronic) disabilities medical discourses are so completely totalizing that alternative discourses are seldom given a chance (Corker & French, 1999).2 Current discourses on bodies, then, don’t seem to permit humanistic interpretations around ‘disabled’ bodies and bodily breakdowns. Disability experiences acquiring hues of permanence and weight Initial shocks of the above kind are often followed by repeated experiences of bodily breakdowns, which over time accumulate ‘weight’. With repetition, the ‘experiential’ can also assume more ‘permanent’ overtones, thus acquiring a ‘residue’ (memories, traces, anticipations) for both the person with the ailment and for their partners. Accumulative in nature, with previous ‘episodes’ informing current states of being (including conversations with partners, doctor’s visits, making mental notes about what to do differently, reminders on refrigerators to take pills and carry candy bars), the person with ailment is never able to escape it. While caregivers and partners can and do make changes and ‘accommodations’ (see Coupland et al. (1991) and Coupland and Nussbaum (1993) in the general context of the elderly and Ramanathan (1995a, 1995b, 1997) and Davis (2006) for specific examples in the case of Alzheimer’s disease), the person with

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the chronic condition (or ‘disability’) carries the weight of it all – the repeated encounters with the breakdown as well as the refracted, weighted societal/medical/familial discourses – all the time. The ‘disabled’ body menaces. It erupts. It is out of control. One damned thing follows another . . . . The fidelity of our bodies is so basic that we never think of it – it is the grounds of our daily experience. Chronic illness is a betrayal of that fundamental trust. We feel under siege: untrusting, resentful of uncertainty, lost. Life becomes a working out of sentiments that follow closely from this corporeal betrayal: confusion, shock, anger, jealousy, despair. (Kleinman, 1988: 44–45) The enduring sense of never being able to speak/relate to/think about one’s body with any degree of certainty, indeed the enduring uncertainty around it all the time, perhaps accounts for the hesitation that Sinfree and Jody feel about speaking about their ailment openly. What can they say about their bodies with certainty except that they are uncertain about its functionings, and that they prefer to be private about it for different reasons? As Jody points out: Diabetes has always been an ‘invisible’ disease, and I guess this is why I was a bit self-conscious about being diabetic when I was younger – I could afford to be (self-conscious, that is). I’m not so self-conscious about my condition now, but I still prefer not to ‘advertise’. The way I see it, it’s really no one else’s business whether I’m healthy or deathly ill. I’m just a private person that way, I guess. Sinfree too prefers to keep issues around his body private: Because of my perennial fear of having fits in public is so deeply ingrained in me, I guess linguists would say wired in me, I tend to avoid such social events, I always find some lame excuse. I guess my colleagues must find me asocial. It’s my own way of coping with the existence of a body whose temperament I don’t trust. I don’t know when I will have these fits, and I don’t want to have a fit in public. Professionally, when I am teaching because I am always worried that I might fit when teaching I try to make my classes as informal and interactive as possible to give myself time and reduce the amount of pressure on me. Their sharing of their written accounts with me and giving me permission to write about their body negotiations ironically, to some extent, flies in the face of their privacy mandate. Regardless, though, both feel pressure to keep their conditions under wraps: for Jody, the general ‘invisibility’ of his condition makes him self-conscious and tends to silence

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him; for Sinfree, on the other hand, the thought that he might have a seizure in public makes him self-conscious (‘a body whose temperament I don’t trust’). For both, this pressure has become a weight of sorts, and impacts ordinary, daily functioning. Both feel the need to conform to ‘mainstream’ discourses about ‘able’ bodies by working to keep aspects of their ‘malfunctioning’ bodies to themselves, a point that gets picked up in different ways in which they articulate tensions with living with their conditions. As Jody puts it: I guess the primary ‘tension’ between biological and societal explanations is that biology simply says, ‘Your pancreas doesn’t work, and you could die from this condition unless you use this 24-hour medication’. Society is contradictory, though. On the one hand ads say, ‘You can live a normal life, at least, as normal as others who do not have this condition, so it really need not be a big deal that you have diabetes’. At the same time, though, insurance companies will not write insurance policies for me because they anticipate large medical expenditures as a result of my condition. So ads for diabetic equipment like blood-sugar testing equipment say, ‘Hey, you’re just like everybody else’. Insurance companies say, ‘Hey, you’re not just like everybody else’. And the medical community says, ‘Hey, we can make you almost like everybody else’. It’s very much mixed messages from society, not from biology, and any diabetic who does not have a strong sense of his or her own self can be tossed and blown by these different messages until the chronic patient becomes a psychological basket case. (pp. 3–4) Tensions with their ailments arise from feeling trapped and from not being able to speak back to societal and familial discourses. In Jody’s case, his frustration seems to be related to contradictory messages that insurance companies and advertisement propagate, while in Sinfree’s case it has more to do with family members talking around him and his ailment as if he were not there, and with doctors insisting that he keep a log book. Here is what he says: When talking about me the thrust of the discourse seemed to be on how I was held captive by the condition, and imprisoned by it. Yes, I had the unfortunate opportunity to learn how they refer to me and my condition. The problem I have with epilepsy is that if I take an overdose the medication has the effect of adversely affecting my balance. I remember one day when I had an overdose. Because of the overdose, I temporarily lost my ability to walk upright, and to speak. An unspeaking linguist I guess is not of much use to anyone. What

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was most striking to me was that when I was in that condition they would talk about the problems with this thing which he has and how the medication was toxic, and how it created problems for them. It is striking in such situations because I couldn’t talk and they seem to assume that I had lost my intellectual abilities so it didn’t really matter they could talk about me in my presence! – funny really! ... Seeing my primary care physician is very low on my list of priorities. Reading a badly written book is less traumatic than seeing her. For example, my US physician insists that I keep a meticulous record of the various time, and types of seizures I have had, and how long they have lasted, and when I had them, a diary of some sort etc. While this log book, memory-police-approach to seizures might be helpful to her, I don’t find it particularly helpful. It leaves me with the impression that she feels that the normal aspect of my life is seizures, which is something I strongly detest . . . . Nowadays I keep a record not of my seizures but of the number of times she keeps adjusting my dosage. (pp. 3–4) Repeated encounters with bodily breakdowns coupled with societal pressures to keep their ‘invisible’ condition ‘invisible’ (quiet), then, contributes to degrees of entrenchment and permanence around their respective ailments. Where and how do bio-medical discourses fit in with these narratives? Latent in both accounts is the idea that such discourses have highlighted ‘causes’ and ‘malfunctioning’ body parts to such an extent, that the person with invisible ailments is made to feel as if his/her ‘normal’ state ‘is . . . seizures’ (Sinfree above) or that he/she is tossed around (by these discourses) till the person feels like a ‘psychological basket case’ (Jody above). Permanence and traces of their bodies and ailments, then, are both produced by the bio-medical discourses (which they have to draw on to speak of their conditions), and by the repeated recurrence of the actual experiences themselves and the memories that both Sinfree and Jody have of their bodies being out of control. Repetition of ‘disabling experiences’ (seizures and comas in the present case) has the epistemic sense of the constitution of meaning in that it contributes to ways in which these and related experiences get woven together into a fabric of expectations that viscerally impact most every aspect of everyday living. It remains up to Jody and Sinfree to stay one step ahead of the flux and uncertainties, ever vigilant, while also remaining persistently flexible to learn from its disabling onslaughts.

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These concerns about ‘permanence’ and ‘traces’ prompt a self-conscious question that pulls in our discipline’s discursive practices into this discussion: How does the present endeavor of texting their experiences contribute to sedimentizing strains of permanence both of them already feel? In the current case, one could certainly argue that the singling out and articulation of such experiences confers on it a (Ricouerian) unity and entrenches the experiences even more: the very act of speaking about one’s experiences with one’s ailment is an act of lifting it out of the general stream of living and holding it up for examination, an act that like narrativizing experience to a particular audience, in a certain space, at a certain time can be seen to contain it in ways not unlike bio-medical discourses. The present discursive endeavor, from this point of view, then, might be viewed as adding more ‘weight’, more ‘baggage’ of a different kind perhaps, to the load they already carry. This realization struck me midway through the project, and we decided to set up a context whereby interpretations of Jody’s and Sinfree’s ailments could be rendered more fluid. Intellectually aware as both Sinfree and I are of how disability is an emergent property involving ‘the interplay of physiological impairment, structural enablements/constraints, and socio-cultural elaboration over time’ (Williams, 1999), it became imperative for us to see what we could do to render its interpretations afloat, where disability-related notions would emerge from its sedimented grounds, if only temporarily. The question is: how successful were we in doing this, and what are the implications of such moves for texting disability-related experiences in applied linguistics? The next section addresses details around this aspect of our project. Attempts at deterritorializing cognitions of disability In an effort to splinter the tendency to over-entrench interpretations of disability to moments, contexts, texts and people – so as to render them more fluid – the first author had Sinfree and Jody read each other’s written accounts, with the only aim, at this point, being to gain some generalized sense of how each would react. I have set up this exchange that happened over email as a ‘dialogue’. The following section begins with the section about driver’s licenses from Jody’s narratives that seemed to be the immediate trigger for what followed: Jody: When it came time for me to get my driver’s license and I had to pass an eye test, it was obvious that my vision was not right. I remember my biggest fear, though, was not that I might be going blind but that I might not ever get my driver’s license – a fate worse than death for a teenage boy in my neck of the woods! Anyway, still

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undiagnosed at this point, I went to the eye doctor, who found I had cataracts – another highly unusual condition for a teenager to develop . . . Sinfree: I was really struck by Jody’s concern with getting a driver’s license. I haven’t taken driving seriously. I recall going for a learner’s test and failed, the test was badly written I’d say. Of course not having a driver’s license in the US is a bother because everyone expects you to have one, because they use it as a form of identity. Although, I haven’t driven a car in my life and have no intention to I guess I can say I have bought a number of cars for other people. I guess people worry less about my fits than they would do if I drove. To some people not driving complicates their lives, but since I don’t know what it means to drive or to negotiate my life around cars that problem doesn’t arise because the situation has never been otherwise. I can’t miss what I don’t know, or never had any experience of. Even though NOT driving is not a problem for me, I recall having an intense discussion with a female colleague here in the US originally from Africa. I was interested if there were any gendered experiences on epilepsy. In our conversation she kept getting back to the topic of driving, and how worried she was that she couldn’t drive and how people tended to think she was a burden because she had to depend on them to move around. I felt pity for her but I thought hold on for a moment, surely the dangers of driving outweighed the benefits. What if you have a fit when driving in a high way. It’s much worse than having a fit when walking or in someone else’s car, or a taxi both which I have experienced. If you have a fit when you are a passenger the worst they can do is to rush you to a hospital, and you wake up in strange environment – that environment called a hospital. Jody: Although as a diabetic I don’t have to worry about having ‘fits’ when I drive, I do have to worry about low blood sugar, which, in a worst-case scenario, could cause me to lose consciousness at the wheel. That hasn’t ever happened to me, but I’ve come close a few times. I also find that I am not as aware of my low blood sugar as was when I was younger, and now, I can only tell when my sugar is low if my vision starts fading. As you may imagine, that can also be a hindrance when driving! I remember driving home from Berkeley one night and realizing my sugar was low because my vision was clouding up. Once I got that signal, I noticed another: my mind was clouding up as well. I get pretty disoriented when my sugar is very low, and even a regular route – such as Berkeley to Davis, Davis to

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Berkeley – becomes difficult to navigate (Should I turn here? Did I miss my turn? Am I on the right freeway? etc.). Fortunately, I had some trail mix with me so I was able to eat some, and my condition became normal again. Driving is always an adventure with me . . . Sinfree: I see what you mean by saying driving is an adventure. I’m glad I don’t drive though I have ‘fitted’ twice in cars, obviously as a passenger and when I get back into the swing of things again, I am grateful I wasn’t driving. My fear when I am in car is to fit and then frighten the driver. But I have a very good sixth sense when I am going to have a fit, so if I am in car I tell the driver. If the drivers know about my condition they don’t panic, but if its a stranger they get extremely worried. But at that point I’ll have lost control, they is nothing I can do. I just hope they act in a mature way. Because I don’t drive moving from one place to the next when the public transport is poor can be taxing. When I was in Cape Town, traveling to the university from home was extremely tiring, and taxing. It used to take me about an hour and half from home to work by rail. Anyway perhaps that gave me a chance to prepare for my lectures! My son hated the idea that I didn’t drive because he saw other kids being picked up by their fathers while he had to walk to the bus. Because I don’t drive I tend to use public transport. At the university where I am currently the buses are always on schedule, so I don’t have to worry about that. In the bus I enjoy listening to students, that has deepened my sense of what makes them kick. Most of the time they will talking about grades. They are really are preoccupied with grades. Because I don’t drive that has affected my sense of distance. I’m told New York City is four hours from the college where I currently teach, but that measurement doesn’t make sense to me. I tend to think of it in terms of how long it will take me by coach, or by air! Conference and epilepsy – I have a nice story to tell about that as well. Will write tomorrow on that. What I did not anticipate was that there would be one specific topic that would become an issue for an exchange. Sinfree, in reading Jody’s accounts, seemed struck by Jody’s struggles with procuring a driver’s license. This led to him (Sinfree) to responding to this issue, after which Jody responded back and Sinfree replied again. This recognition of oneself in another’s story awakens in each a response, thus, jostling and rendering fluid some set of dormant cognitions of one’s ‘disabled’ condition. It affords each a depth and lamination about their own respective bodies and conditions, a sense of identification that in Sinfree’s case triggers a narrative about his

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concerns and problems with driving followed by Jody’s worries about his sugar levels falling, his vision blurring and his need to constantly keep trail-mix or candy available. This exchange – and indeed the texting of it above as a ‘dialogue’ between them (when in actuality Sinfree and Jody have never really dialogued with each other) – lifts their narratives out of their previously ‘flat’ space and moves them and their ‘disability’ cognitions to an inter-subjective space (Sokolowski, 2000) that permits each to acquire degrees of double consciousness; it prods them to go beyond ‘direct perception’ to reflect on their individual conditions vis-à-vis the other’s narratives. As Merleau-Ponty puts it: When I turn towards perception, and pass from direct perception to thinking about that perception, I reenact it, and find at work in my organs of perception, a thinking older than myself of which those organs are merely the trace. In the same way I understand the existence of other people. Here again I have only the trace of a consciousness which evade me in its actuality and when my gaze meets another gaze, I re-enact the alien existence in a sort of reflection. (Merleau-Ponty, 2002: 410) As Sinfree said in a phone conversation a few months after the above exchange, the reflection is an ongoing one that goes beyond this small inter-subjective space because it has opened up a host of other issues: the communal dimension of such experiences (that there are so very many others for whom such issues resonate), the idea that that long-term partners of people living with chronic ailments perhaps language those conditions differently from those living with them, that discourses around ailments and bodies, while constraining, are ones Sinfree and Jody have to unbind themselves from so that they are not paralyzed by them and can go on with the job of living.

Moving into a Wider, Discursive Space Apart from the common inter-subjective space that the above exchange generated, the project also did something to the texting endeavor. It succeeded in moving the text from describing and acknowledging wounds around their disabilities to another (more poststructuralist) space where their interpretations were temporarily loosened, where each was responding to the other without discursive/texting pressures in the background, without concerns about how the first author was going to present it all, pressures that run the risk of entrenching and sedimenting their experiences. This temporal space, however, was short-lived and evaporated as soon as I texted them and their inter-subjectivity into place for the purposes of the present argument. And thus these very current acts of texting these fluid

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moments, because they run the risk of entrenchment, beg to be re-activated, to be read and actualized and breathed life into, thus prying loose again the discursive tendrils that ‘hold it down’. And a way by which this might happen is when readers create alternate inter-subjective spaces as when the present interpretations get rethought and re-cognized, a process that shifts the meeting of gazes to another plane and the process goes on ad infinitum. But beyond the circles of understanding and inter-subjective spaces, what do the issues raised in this chapter mean for texting issues relating to chronic ailments and body breakdowns? First, having ‘patients’ write their narratives and giving them time to revise their conceptions of their bodies and their ailments opens up the possibility for them to see their bodies as integrally tied to notions of their ailments that are always shifting, since they can be re-written and revised, a crucial point that remains submerged in the research on oral disability narratives (Kleinman, 1988). Second, foregrounding the experiences of those with chronic ailments counters the privileged cause– effect paradigm so valued by bio-medical and societal discourses. Like all painful experiences, there are wounds/’effects’ that seek acknowledgment, since these conditions and the people who suffer from them have to assume cloaks of silence and invisibility. However, as we saw, chronicling ‘disability’ experiences also runs the danger of slotting them and their conditions in place, thus contributing to strains of victimization, sedimentizing and permanence they might already feel. Having Sinfree and Jody read and respond to each other’s narratives seems to indicate some ‘movement’ of embedded, inactive cognitions to ones of recognition and some ‘action’ (each, after all, did respond over email to the other’s response). Choosing to discursively present their email responses as a dialogue offers another kind of fluidity, inasmuch as it seems to convey a sense of two people conversing. In this way, I sought to both find ways and textual forms that would permit the (modernist) task of documentation, while also building in parallel, textual strains that tugged at the sedimentizing corners of what I was laying down. While the degree to which I have been successful depends on the reader creating another inter-subjective space when reading this chapter, the point remains that we make efforts at starting this process. The present discussion is a small and early step in this direction.

Afterword Perception and power: Merleau-Ponty and Foucault Language certainly has inner content, but this is not self-subsistent and self-conscious thought. What then does language express, if it

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does not express thoughts? It presents or rather it is the subject’s taking up of a position in the world of his meanings. The term ‘world’ here is not a matter of speaking: it means that the ‘mental’ or cultural life borrows its structures from natural life and that the thinking subject must have its basis in the subject incarnate. The phonetic ‘gesture’ brings about both for the speaking subject and for his hearers, a certain structural co-ordination of experience, a certain modulation of existence, exactly as a pattern of my bodily behavior endows the objects around me with a certain significance both for me and for others. The meaning of the gesture is not contained in it like some physical or physiological phenomenon. The meaning of the word is not contained in the word as a sound. But the human body is defined in terms of its property of appropriating, in an indefinite series of discontinuous acts, significant cores which transcend and transfigure is natural powers. (Merleau-Ponty, 2002: 225) . . . there is a whole layer of phenomena given to experience whose rationality and interconnection rest upon an objective foundation which it is not possible to bring to light; it is possible to know phenomena, but not substances; laws but not essences; regularities, but not the beings that obey them. Thus, on the basis of criticism – or rather on the basis of this displacement of being in relation to representation, of which Kantian doctrine is the first philosophical statement – a fundamental correlation is established: on the one hand, there are metaphysics of the object, or more exactly, metaphysics of that never objectifiable depth from which objects rise up towards our superficial knowledge; and, on the other hand, there are philosophies that set themselves no other task than the observation of precisely that which is given to positive branches of knowledge . . . (Foucault, 1970, The Order of Things: An Archeology of the Human Sciences: 245)

Notes 1. 2.

Segments of this chapter appear in a paper co-authored with Sinfree Makoni in Critical Issues in Language Studies, 4 (4), 283–306. Copyright permission is gratefully acknowledged. Societal discourses pick up on medical ones and get laminated in certain ways – in advertisements, insurance policies, front-desk talk at medical offices – where the person is spoken of primarily in terms of his/her bodily malfunction.

Chapter 5

Communication Challenges: Autism, Partial Hearing and Parental Choices

Communicating with someone – anyone – continued to be a problem. I often sounded abrasive and abrupt. In my head I knew what I wanted to say but the words never matched my thoughts. I know now that not being able to follow the rhythm of another’s speech was part of the problem and made me sound harsher than I intended . . . Temple Grandin & Margaret Scariano, 1986: 81 Imagine a deaf baby with little or no awareness of sound . . . when he looks at an object or event, he receives none of the ‘mood music’ that accompanies the social experience of the hearing baby. Suppose he looks from an object of his attention to turn to an adult who is ‘sharing’ the experience with him and the adult talk about what he has just been looking at. Does the infant even realize that communication is taking place? To discover the relationships between a word and its referent the deaf infant has to remember something he has just observed and relate this memory to another observation . . . The deaf baby has to do much more, ‘discovering’ the relationships between two very different visual experiences that are displaced in time. Wood et al., 1986

My aim in this chapter is to probe how we ‘read’ others’ behaviors and how our interpretations of others feed into our responses to both our immediate interlocutors in particular and to our larger worlds in general. I will specifically focus on ‘intentions’ and the generally fraught nature of interpreting meanings and intentions latent in messages that come at us. This space assumes particular nuances in the case of people for whom communication gets deemed ‘impaired’ or ‘problematic’ (as in the case of those with autism, partial hearing, Alzheimer’s disease or Asperger’s syndrome). Indeed, the moment of diagnosis – when doctors and clinicians respond to patient’s behaviors in certain ways – emerges from a particular ‘reading’ 80

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of their symptoms and communicative intentions. As Duchan and Kovarksy (2005) point out, this ‘reading’ is itself a cultural practice that emerges from a need to maintain a collective sense of ‘normalcy’ and that sets in motion a host of treatments, doctor’s visits and medical plans towards its maintenance. Stopping ourselves in our tracks to directly address ‘intentionalities’ permits us to uncover some subterranean spaces latent in our assessments of others’ conditions and bodies.1 I will orient my discussion around issues relating to autism and partial hearing. While at first glance this might seem odd – they are, after all, two very different conditions – my aim here is to speak to how strong our narratives about ‘normal’ communication are. I will focus specifically on the difficulties that parents of children with autism or partial hearing undergo as they negotiate communication issues for their children. My point here is that it is not so much that that children with autism or partial hearing have trouble reading others’ intentions; it is that parents of these children have to base their child-rearing and socialization on their readings of what the ‘normal’ world intends. Intentions, then, are key here: our (mis)readings of them, raising our children into norms around them, assembling our notions of ‘normalcy’ around them and our proceeding as if one-to-one co-relations between language and our intentions are not arbitrary. It is this nexus of issues that this essay probes. I begin by posing some questions: Can accounts of subjectivity and the psychical inner space be/adequately explained in and by the language we have for our bodies? How much of our intentions are we actually able to communicate in our everyday interactions? To what extent can we see our interior motivations and deeply recessed emotions in terms of surface criss-crossings instead of one-to-one correlations between intents and language? What might be lost in the process? What new laminations gained? Drawing on some strains of Lacanian psychoanalytic thought as well as Bakhtnian and Vygotskian ideas about inner speech, I’d like to explore how ‘intentions’ in communications operate not just at the obvious, languaged level, but at the level of the pre-languaged unconscious [could it be that intentions and verbalized language may not necessarily go hand-in-hand, as we tend to generally think?], before opening up the discussion to body-experiences in general. While issues relating to intentions (‘intents’/’intentionalities’) stretch deep into philosophical questions that sometimes yield no ‘answers’, our communicative efforts are predicated on what of our others’ intentions we are able to ‘pick up’, and ‘read’. Our collective understandings of what ‘normal effective communication’ is hinges partially on our belief that ‘successful’ communication has occurred when our listener/co-respondent sends back a message in a form and

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manner that meets our ‘discourse expectations’ (however un-namable that may be). However, it is when we are faced directly with accounts of people whose negotiations with the ‘languaged’ world are fraught with frustration, anger and difficulty – as in the case of those with partial hearing or autism (two cases discussed presently) – that our assembled notions of ‘normal’ communication are defied. It is also when we come face-to-face with people who feel pressured to present their bodies in particular ways that we realize the extent to which their modes of self-presentation are shaped by their readings of what we ‘intend’ them to be like. ‘Normalcy’, needless to say, is completely sutured into this.

Unraveling Intentions If our everyday interactions proceed ahead relatively smoothly, it is generally because the messages we send out get picked up in ways we intend. I smile at a person, ask a question, and the person smiles back, with a response that I ‘recognize’ as a ‘relevant’ answer. My listener has inferred my putative intentions, has recognized my nonverbal behavior and has ‘read’ my verbalizing, and has echoed back to me a set of signs that clocks into my mental schema in a particular way allowing me to move on (either to continue the interaction or assume another activity). In other words, I have inferred her intentions. We see this kind of inferring when we are confronted with written texts such as this one: Morning everyone, writes Andy Bull at Hove, and another fine one it is too. The sun is out and the crowd is a little thicker for it being a Friday, with a real peach of a summertime afternoon in store. And they’ve got an England star, of kinds, at the wicket to entertain them too: Matt Prior is in position to shape the remainder of the game by extending Sussex’s overnight 318 up towards something more intimidating. He’s 22 not out as I type, keeping company with nightwatchman James Kirtley. (The Guardian, May 2, 2007) While someone with a background in cricket and weather conditions in England (including the importance of sunny weather) will read nuances into this piece that someone without this background may not be able to, the fact is that as readers we try to ferret out what the writer is attempting to communicate, inferring what the general intention is, in other words. Such examples of how we understand verbal and non-verbal behavior assumes that we view intentions as mental states. Intentions are spoken about in individualistic and singular terms with perspicacity

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being a key issue, especially in the realm of communication with children (‘Say what you mean clearly’). In the realm of psychology, intentions are viewed as mental acts that precede the performance of behavioral acts, the assumption being that the speaker/writer has a clear sense of his/ her mental state/s that can then be translated into action (speaking, writing, behaving; cf. Astington, 2001; Malle et al., 2001). From this point of view, we assume that the writer’s lines about Matt Prior’s 22 runs possibly extending to much more so as to overtake the previous day’s 318 runs emerges from some intention to express belief that Prior will excel. An intention, then, can be seen in terms of a ‘representation of the action an agent believes will achieve a desired outcome . . .’ (Astington, 2001: 87). An identifiable mental state and a particular pin-pointable outcome are correlates, from this point of view. In the realm of gestalt psychology is an orientation that maintains that people directly perceive others’ intentions on witnessing their actions. This ‘direct perception framework’ partially generates theories about the origins of human ability to read others’ intentions, with scholars suggesting that ‘infants arrive in the world biologically prepared to perceive certain kinds of animate motion (in particular self-propelled motion) as intentional, and that infants can recognize at least a small set of specific intentions (e.g. helping vs. hurting) on the basis of different behavioral patterns associated with them. From an interactionist point of view, though, intentions as mental states are emergent properties that make themselves manifest in and through communication. As Gibbs (2001) suggests, a relatively high level of social coordination is needed to infer intentions. For him, rather than ‘issue fully specified from people’s heads or existing in some pre-registered form “in there”, intentions are said to be constructed’ or ‘negotiated’ in interaction between persons and to be ‘constitutive’ of their standard practices with artifacts and tools. In keeping with sociocognitivist orientations (Bateson, 1972; Gee, 1992) such a view highlights the inseparability of mind and action, and contests the mind-body/kantian dualism inherent in more traditional psychology. The inner space from which intention is thought to proceed, is, from this point of view, relegated to the margins. While these different theories about intentions are relevant and informative, they seem to fall short in the context of those people with ‘impaired communication skills’. Traditional psychological views – about intentions being mental states in one’s head, or the perceptibility of one’s intentions in terms of actions – or social interactionist perspectives that emphasize one’s intentions emergent in and through talk do not begin to account for how one with a communication-related

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condition attempts to interact with the ‘normal’ world that insists on (mis)reading and (mis)inferring his/her intents, and straps the person down with ‘behavioral’ problems, enforcing a normalcy (Davis, 1995) that automatically relegates them into spheres of ‘impairments’. Neither do some of these theories account for how ‘intentions’ are intimately tied to issues of ego and self-presentation, and how our articulations through language are only very very small windows into the psyche. What is it that precedes language, the moment of enunciation and to what extent are intentions part of this inner space? What is it that precedes language, the moment of enunciation and to what extent are intentions part of this inner space? Drawing partially on Mark Osteen’s account of his autistic son’s difficulties with toilet training, I turn to addressing some impossibilities of ever fully understanding another’s intentions, with a view towards questioning the value we accord this concept (i.e. ‘intentions’) in communication-related realms. But before I do that, here is some brief background about autism. As a neurological developmental disorder, autism is frequently associated with the inability to orient, interpret and respond to social and physical environments in recognizable ways. And a prevalent view is that children with autism do not usually participate in narrative interaction because of their inability to match their contribution to those of their interlocutors in a reciprocal, meaning-driven manner (Fay & Shuler, 1980; Landa, 2000). Indeed, some researchers maintain that individuals with autism fail to represent their own mental states as well and that overall they lack the ability to read intentions (Baron-Cohen, 1988a, 1988b, 1996; Leslie, 1987). However, recent work in discourse analysis has begun to critically investigate some of these claims (Kremer-Sadlick, 2004; Ochs et al., 2004; Solomon, 2004; Sterponi, 2004), and the present chapter aligns itself with this research. Consider now the following excerpts culled from Osteen’s essay (2008) about his son: Excerpt 1 For Cam, the bathroom really had become a punishment room. During these first Urine Wars my son learned a lesson he never forgot: he could make us instantly angry or happy simply by withholding or giving up his urine. Denied normal ways to wield power, he clung to those he could control, and for years brandished this one like a sword. And we were so immersed (almost literally) in the problem that we couldn’t see the connection between our heightened vigilance and his defiance – and the more attention we paid to it, the more he used it. (Osteen, 2008: 215; my emphasis)

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Excerpt 2 Cam loved carpet. Often he’d enter the living room with the clear and sole purpose of urinating on the rug. This habit was infuriating because although it’s easy to clean up urine on a hardwood floor (and it leave not mark as long as it doesn’t remain for long), rugs soak up the liquid and let the smell linger. Why rugs? May be because the liquid makes no sound and then seems to vanish: ‘look! It comes out of here and then it goes there but then it just goes away. Cool!’ Or maybe my son agrees with autistic author Donna Williams, who loved to urinate on the carpet, “the more of a ‘me’ in the world there was . . . the smell belonged to me and closed out other things” (Osteen, 2008: 61). In other words, perhaps Cam was claiming the house for himself. A vinegar/water mixture will dry the stain and mask that ‘me’ smell, but the scent of so much urine never fades entirely. (Osteen, 2008: 217; my emphasis) Excerpt 3 But if Cameron was at the mercy of his excretory functions, the opposite was also true: he used urination to assert his will. He was determined to pee at particular times and places, to demonstrate that he could do it if he wanted to and that we couldn’t stop him. Urinating gave him control not only over us but over a body that refused to obey his other commands. No wonder he cleaved to it like a security blanket. And he created his own liquid language. Caught up in our own expectations and anxieties, determined to make him change, we couldn’t comprehend his meaning. Perhaps, in this way, we were as autistic as he was. (Osteen, 2008: 225; my emphasis) Osteen’s accounts of the entanglements around toilet training his son are brutally honest, painful and self-reflective, with him attempting throughout his beautiful essay, to read his son’s intentions in the most charitable way possible, while also remaining self-critical. Osteen’s views seem to point not to the mental space from which psychologists believe that ‘intentions’ emerge from but the murky inner psyche, a position that lends itself to a Lacanian analysis.2 It is to this that I now turn. While it may seem as if I am straying from Osteen, this detour is necessary in order to make my way back to him. Deeply influenced by Freud, while also marking a break from Freudian thinking, Lacan offers an explanation for our unconscious that probes at ways in which language shapes the human subject and the ways in which linguistic and ideological structures shape both our conscious

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and unconscious lives. Indeed, Lacan maintains that entry into the languaged world – the world of language – entails a radical break from any sense of materiality in and of itself. The development of our subjectivity is made possible by an endless misrecognition of the unconscious (what Lacan calls the Real; more on this presently) because of our constructing ‘Reality’ (the world external to the subject) in particular ways through language. Not even our unconscious escapes language, which is a reason why Lacan argues that the unconscious is structured like a language. Lacan’s version of the development of a subject revolves heavily around the subject’s trajectories into recognizing/’reading’ signs, first iconic and then linguistic from the time of infancy to adulthood and beyond. The entry into language follows particular stages, and while I remain skeptical about discernable stages of human development, his theories afford a way to speak to the growth of the unconscious that are always present in the conscious. According to Lacan, a baby from 0 to 6 months of age is dominated by chaotic mix of perceptions, sensory feelings and needs, and it is at this stage that the material aspects of the Real gets formed, with erogenous zones (mouth, anus, penis, vagina) becoming intensely associated with the mother who pays attention to these parts. It is at this stage that the subject begins to gain a sense of lack and fulfillment (partially through the mother’s breast, gaze, voice), setting in motion a cycle of desire and assuaging that desire that will controls us for the rest of our lives. In the second stage, at 6–18 months of age, the baby goes through the ‘mirror stage’, a most critical moment according to Lacan, since it is the start of a sense of self and other. This happens when the baby catches sight of his/ her mirror reflection and recognizes the image gazing back as him/herself. This moment of the child’s identification with her image (what Lacan terms ‘the ego’ or Ideal-I) marks the crucial stage of developing a sense of ‘I’ that gains many more layers and complexities through language. The sense of ‘I’, then, precedes the entrance into language (opening up the possibility of intentions being realized both through language, but beyond it as well). The idealized image represents to the child a simplified, bounded form of the self, as opposed to the turbulent chaotic perceptions, feelings, needs felt by the infant. This stage is a drama that gets played out throughout the person’s life, with the subject forever seeking the Ideal-I (the mirror image) in all his/her interactions. This misrecognition or meconnaissance characterizes the ego in all its forms (Lacan, 1999), and leads to the creation of narcissistic fantasies in the fully developed subject, establishing what Lacan terms the Imaginary (or ‘imaginary order’, which continues to influence the subject in successive stages of development).

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The Imaginary, which follows the mirror stage, is the stage wherein demand (demande) becomes primary. While needs can be fulfilled, demands, according to Lacan, are insatiable, creating/feeding into/reproducing that sense of lack that the baby starts to feel in the early months, creating an unending search to replace loss. Lacan is careful to point out that the search for a fantasy image – anyone that takes the place of the first mirror reflection – lasts through childhood and into our adult lives. Stepping into language – acquiring it, learning it, participating in the world through it – is the next stage, namely entrance into the Symbolic Order. The acceptance of language’s rules – the authority it imposes with its social and political encodings – is patriarchal, domineering and constrictive (what Lacan calls the Name-of-the-Father), and it is through language that we humans enter into an understanding with each other. Once we are able to articulate our desires through language, we seek to forever reproduce the Real through it. And the Imaginary – the need to assuage our lack – starts to happen through language. Picking up Osteen’s narrative threads again: his description of Cam’s urinating to establish a sense of his power (‘. . . he could make us instantly angry or happy simply by withholding or giving up his urine. Denied normal ways to wield power, he clung to those he could control, and for years brandished this one like a sword), to marking his insignia on spaces (who loved to urinate on the carpet, the more of a “me” in the world there was . . . the smell belonged to me and closed out other things’), ‘to creating his own liquid language’ (Urinating gave him control not only over us but over a body that refused to obey his other commands. No wonder he cleaved to it like a security blanket) opens up a way for us to think about intentions differently. From a Lacanian point of view, Cam’s urinating can be seen to be all about communicating intentions – connecting with a mirror reflection through the act of urinating, seeking to replace loss through it and perhaps using it in lieu of the language of the Symbolic Order. Osteen’s insightful understanding of their intentions being at cross-purposes – his, as parent, initiating Cam into the ‘normal’ rules of toilet training, and his interpretations of what he believes are Cam’s ways of surviving – throws into question whatever one-to-one connections we may have between ‘intent’ and language.3 Intentions, then – our own and our readings of others – may have more to do with inchoate inner states that we need to find a way of articulating – than them being mentalistic constructs that can be assigned in one-to-one relation with language. And, as mentioned at the start of this chapter, it is not only in linguistic interactions that ‘intentions’ reveal themselves to be murky. Our readings of the ‘normal’ world,

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of the adjustments they are (not) willing to make for people with ‘impairments’ impact crucial life choices, and it is to this that I now turn. I do so in relation to Shahla’s Mokhtarzade’s4 accounts of raising her partially hearing daughter to be able to engage with the ‘normal’ world. The following account of Shahla’s tumult about coming to terms with her child’s growing deafness and her concerns about initiating her partially hearing daughter into the hearing/speaking world (see below) also captures issues of ‘reading’ and intentions. Like Osteen, Shahla feels pressure to make a set of choices that will make her daughter part of the speaking/ ’normal’ world, knowing all the time that while engagements with ‘normal’ expectations will be fraught and tense, not having access to it will mean extreme alienation and marginalization for her child. Her ‘reading’ of the normal world, of her daughter’s readiness for it, of the future she anticipates sets in motion particular negotiations, with the normal world’s ‘readings’ of Shahla’s intentions, setting up an endless loop. What follows are some excerpts from Shahla’s extended accounts. I have culled those segments that best capture Shahla’s reactions to first finding out about her daughter’s hearing to choices she had to make and contexts she had to create to ensure that her child had access to spoken language. Excerpt 1 Nothing in this world could have prepared me for what she had to say . . . I think I asked her what did she do? And I think she said oh nothing. The rest of the conversation took me on a roller coaster ride of my life. Carol said, I think J does not hear . . . My ears were ringing and I was not sure it I had heard her correctly. . . . The audiologist pointed to the unaided and the aided audiograms and explained to me that without hearing aids J can hear pure tones at 70 to 80 decibels. With the hearing aids she can hear pure tones at 30 to 40 decibels. This means that she can hear within the speech spectrum with hearing aids, she added. How is that good news, I asked? She replied, this means she has good residual hearing that can be amplified with hearing aids and that means she can learn to speak, of course with lost of work; speech therapy, and what the family members can and are willing to do, she added. This is good news she repeated. ... The speech therapist had told me to think of any and every situation as an opportunity to talk to Jay and introduce her to new words and sounds. Jay was still very young and could not speak in sentences.

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In fact some words were too difficult for her to say. But her speech therapist had told me to introduce Jay to age-appropriate words. Hearing the words early on was extremely important she had said. From time to time she would remind me of the fact that in Jay’s case we were also making up for the lost time. I seized on every single opportunity almost religiously: the trip to the grocery store, the visit to the park, the family visit, cooking time, dinner-time, bath-time, playing in the backyard, all turned into opportunities to teach Jay new words, and apply word to situations. If I missed an opportunity I would feel guilty and try to make up for it in other situations. I was relentless in my pursuit of providing Jay with the optimal social environment for her to learn to speak. ... Halloween, Thanksgiving and Christmas were perfect times filled with activities and opportunities to teach Jay new words. There were stories to tell her, there were books about Christmas to read to her and then there was the visit with the Santa Claus in the shopping mall. ... The school was informed that Jay was hearing impaired and she needed to sit close to and facing her teachers. . . . They told me to introduce sign language later when she is fully oral and singing would not discourage her from staying oral and using speech as her main form of communication. I was also told that it is best to limit her language acquisition to English only in order not to confuse her. One main reason for this was that if Jay’s hearing loss was progressive it was best that she became proficient in English before she lost her residual hearing. ... By third grade we realized that Jay was unable to hear her teacher correctly and also she was missing some things that the teacher was saying. Jay needed a sign language interpreter in the classroom. However, none of us had learned sign language. Everyone involved told us to emphasize spoken language to maximize her residual hearing. ... She was not old enough to enroll in regular sign language classes. There was no program just for the deaf where she could enroll. The only option was a school for children with all sorts of physical and mental disabilities including deafness. Having no choice I enrolled Jay in their summer program. The bus would pick her up and drop

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her off. Jay was uncomfortable going to this school. Other kids had severe physical and mental disabilities. Even though I had explained to her that she needed to learn sign language she could not understand why she was in that school. I was worried as to how she would react to the situation. I did not want her to think of the other kids as being less. By the same token I did not want her to think of herself as being the other. From time to time she would tell me ‘but I am not like them’, and I would say that nature made them that way and that they were good kids who needed help. (SM, private diaries) There are a host of language/communication-related issues revolving around ‘intentions’ here. As much research in child language acquisition shows (Bruner, 1983), preverbal interactions and conversations contribute to the child’s emerging sense of dialogues and if they fail to occur can set the stage for serious communication problems in later spoken interactions. This fear undoubtedly looms large with deaf/partially hearing children who cannot or have difficulty hearing their mothers and earliest preverbal communications (Sacks, 1989), and it is this concern that makes the Wood et al. quote at the start of this chapter so poignant. A deaf or partially hearing baby may not ‘receive’ ‘mood music’ that accompanies social experiences, since ‘moods’, ‘intangibles’ in environments (emotions, laughter, warmth, sadness), are partially communicated through language. The deaf/partially hearing person has to have established a relationship between a word and its referent, committed it to memory, learned to read emotions and intentions in non-language-related realms (body language, gestures, movements) in order to begin building dialogues and relationships on those connections. Intentions – the communicating of one’s own and the reading of others’ – when language is not at one’s bidding (or very little) assumes different hues of which we in the ‘normal’ world are not sufficiently aware. Bakhtin’s and Vygotsky’s combined thinking on inner speech and ways in which they inform the current discussion about dialogue and intentions might be valuable to review here and as with the Osteen case, while it may seem as if I am losing track of the argument, I do intend to return to Shahla’s readings of the ‘normal’ world (of which she is a part) and her intentions as a parent as she chooses to make her daughter part of the hearing world. For Bakhtin, words emerge in dialogue and not out of dictionaries. He saw the distinction between dialogic words – utterances – and dictionary words as one between theme and meaning: Theme is the upper, actual limit of linguistic significance; in essence, only theme means something definite. Meaning is the lower limit of

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linguistic significance. Meaning in essence, means nothing; it only possesses potentiality – the possibility of having a meaning within a concrete theme. (Marxism and philosophy of language) Words, then, always refer back to other words and texts for their meanings. While language can from this point of view be viewed something that is external to the individual – where we can make (arbitrary) connections between words on a page, or between texts – it is in actuality the medium through which an individual inner space gets constructed. In his descriptions of the transitions from ‘social intercourse’ to ‘outer speech’ and from ‘outer speech’ to ‘inner speech’ and consciousness, Bakhtin fundamentally rethinks both the relation of consciousness to the world around it and the relation of the self to others. As he points out, ‘People do not “accept” their native language’; it is in their native language that they first reach awareness. Indeed, a clear demarcation of inner and outer speech is impossible because the very act of reflection/introspection is based on external social discourse. Individual consciousness, then, is a socioideological fact (Emerson, 1983). From this point of view, if we cannot language an experience even to ourselves, then, in a sense we do not have it (a point that has all kinds of implications for deaf and partially hearing people who may have various degrees of speech. How can we say that they do not experience the world because they may not be able to verbalize or verbalize in ways that that are deemed ‘unusual’?). Resonating with Bakhtin’s views are those of Vygotsky (1965) who believed (unlike Piaget) that a child was not externalizing his internal thoughts but internalizing his external verbal interactions. At some point, the child’s social speech becomes internalized and when it does his/her speech differentiates into two separate though interlocking systems: one continues to adjust to the external world and emerges as adult social speech; the other begins to slowly develop into a personal language, an inner speech that contributes to the meanings and intentions a person attempts to communicate. The descriptive monologue that makes up this inner speech depends critically on the external social word feeding it, and thus, Vygotsky, like Bakhtin, stresses dialogue as the critical medium through which a child’s cognitive functioning and grasp on reality emerges and is sustained. These points speak to issues of deafness and partial hearing in all kinds of ways. A deaf baby or one with partial hearing has to do much more ‘discovering’ of the intricate relationships between the social world (which he or she cannot hear or can partially tune into), and his/her inner speech. The space of dialogue – the early communications so integral to cognitive

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functioning – has to be cultivated into a space where thought can develop and flourish (Volosinov, 1973) and where sign language can become the medium through which meaningful engagements with the world can occur. The leaps from a perceptual world (where the infant sees the world, but without or little language) to the conceptual world (where the child develops inner speech without language, but through signs) may perhaps be different from those of hearing children. Dialogue is crucial here since it launches inner speech, the medium through s/he engages both herself and the world. So where do intentions fit in with all of this? From a Bakhtinian– Vygotskian point of view, intentions might very well be part of inner speech, the murky terrain before experience assumes a linguistic form. In the case of a deaf person, the communicating of one’s intentions happens through sign language, a medium that not even three-quarters of the hearing world concerns itself with, and as we saw in the earlier sections of the chapter, intentions need to get picked up and read in certain ways in order for ‘effective communication’ (whatever that means) to take place. Coming back to Shahla’s accounts of inducting her daughter into the hearing world: Shahla recognized several things at once when she heard that her daughter had partial hearing: that with speech therapy her daughter could have access to the hearing world, that because the hearing world was not going to learn sign language, her daughter needed to learn to lip read, that her daughter needed to learn sign language to be in touch with the deaf community, that the development of her daughter’s dialogic/ communicative skills depended crucially on her surrounding her daughter with language. While Shahla may not have been thinking in terms of developing her daughter’s inner speech, she was in effect doing just that – ensuring that her daughter developed the dialogic ability so crucial to a questioning, conceptual mind. She even goes so far as to talk to her daughter only in English ‘to not confuse her’ when she is herself a native Farsi speaker from Afghanistan.

Discussion As Caputo points out, the work of phenomenology consists in unpacking the prereflective, prethematic or the (Husserlian) ‘horizonstructures’ that are at work in our wakeful cogito. Intentions, though, as we noted at the start of this chapter, are perhaps more inchoate than we think and operate at the level of the unheard unconscious. They are not blank looking-ats, unidimensional and flat, but highly complex, multiply laminated and deeply interpretive, touching and emerging as they do from everything including fear, irrational beliefs, encounters with the world, prior experiences, worries about the

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unknown and parental concerns about safeguarding one’s child, and who knows what else. What gets articulated through language as an intention, then, stems from a most murky space that disallows easy attribution to any one cause or reason. It is this ‘un-pinpointability’ – the impossibility of pinning intention down – that makes us realize that if we leave an interaction with a sense of it having ‘gone well’, it is because in that (rare!) set of moments something of one’s language and demeanor got read by the other in a manner that echoed back to us ‘appropriate’ responses to signals we were sending out. This is the scene, of course, between two people of the ‘normal’ world. But as we saw from Mark Osteen and Shahla’s accounts, intentions can assume a set of dimensions that we in the ‘normal’ world seldom get to hear about. Whether from a Lacanian account or a Bakhtin–Vygotskian orientation, parental intentions emerge from their readings of the ‘normal’ world, which in turn gets translated in multifarious ways and choices regarding their children. As Emerson (1983) points out, the gap between the inner and outer worlds of language can be a locus of pain and anguish. From a Lacanian point of view, it becomes the pain of desire (Osteen’s recognition of Cam’s desire to control something of the world and using his urinating as the tool that enables this), while from a Bakhtinian point of view, the pain in the gap is perhaps one of the struggles around developing an inner speech so as to continue interacting with the social world (Shahla deciding to induct her daughter into the hearing world and no doubt serving as a bridge between the language of social world and the partial deafness of her daughter). Both Mark’s and Shahla’s intentions, then, emerge not just from their reading of the world, but from my reading of their accounts as well, and search as I might, I can never hope to isolate them as atomic data. ‘The “perceptual object” (Caputo, 1987), indeed the intentional object is generally bound by a ring of horizons which provides it with an inherently contextual meaning’ (Caputo, 1987: 40). Where and how in those rings would I be able to say that this was Mark’s reason for toilet training his son this way, or that was Shahla’s main impetus to introducing her daughter to sign language? Intentions, then, evade us and our attempts to read our own and others are momentary articulations that fly past no sooner have the words left our mouths. Their un-pinpointability has all kinds of implications for those of us with ‘normal’ communication skills, with complexities of sorts we have yet to fully fathom for those who cannot hear, or hear partially, or use language differently from us. Our inability to communicate what we intend is just as arbitrary as theirs; we have just convinced ourselves that we – in the ‘normal’ world – communicate and they don’t.

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Afterword: Perception and Power, Merleau-Ponty and Foucault The horizon is what guarantees the identity of the object throughout the exploration: it is the correlative of the impending power which my gaze retains over the objects which it has just surveyed, and which it already has over the fresh details which it is able to discover. . . . The object-horizon structure, for the perspective, is no obstacle to me when I want to see the object; for . . . it is the means whereby they are disclosed. (Merleau-Ponty, 1968: 67–68) The second difference (the fact that these transcendentals concern a posteriori syntheses) explains the appearance of a ‘positivism’: there is a whole layer of phenomena given to experience whose rationality and interconnection rest upon an objective foundation which is it is not possible to bring to light; it is possible to know phenomena, but not substances; laws but not essences; regularities but not the beings that obey them. Thus, on the basis of criticism – or rather on the basis of this displacement of being in relation to representation, of which Kantian doctrine is the first philosophical statement – a fundamental correlation is established: on the one hand, there are metaphysics of the object, or more exactly, metaphysics of that never objectifiable depth from which objects rise up towards our superficial knowledge; and on the other hand, there are philosophies that set themselves no other task than the observation of precisely that which is given positive knowledge. . . . (Foucault, The Order of Things: 245) Notes 1.

2.

3. 4.

This reading of ‘intentions’, though, apply to us all, not just doctors, and are relevant for other body conditions as well – whether a woman chooses to wear a prosthesis or not, or whether a type-1 diabetic wears his computerized pancreas under his clothes instead of over them. Our readings of their choices/’intentions’ shape our reactions, which as much of this book has underscored, emerge from our collective ideas about ‘normalcy’, prompting us to react to ‘abnormal’ bodies in particular ways. Lacan’s influence on contemporary critical thought is immense, with his views about the unconscious shaping feminist thinking (including Judith Butler, Shoshana Felman and Gayatri Spivak), as well as poststructuralist thought and Marxist views (Althusser, Jameson, Zizek, and Laclau). See Sheryl Stevenson (2008) and Antony Baker (2008) for insightful essays on autism. I have permission from Shahla to use her given name.

Chapter 6

Texts and Meaning-Making: Critical Revisitations in Ailment/ Disability-Related Research

Deconstructing philosophy is a matter of working through the structured genealogy of its concepts in the most scrupulous fashion, from within but at the same time from a certain external perspective which it cannot name or describe, and of determining what this history may have concealed or forbidden, emerging as history from this repression in which it has some stake. At this point, through this movement, both faithful and violent, back and forth between the inside and outside . . . there results a certain textual activity and product which gives great pleasure Derrida, 1972; my emphasis The ‘metaphysics of presence’, which these texts can be shown simultaneously to affirm and to undermine, is the only metaphysics we know and underlies all our thinking; but it can be shown to give rise to paradoxes that challenge its coherence and consistency and therefore challenge the possibility of determining or defining being as presence Culler, 1979: 161

What concealed and dark recesses can we uncover when we return to critically rethink our earlier research on ailments/disabilities? What new ‘meanings’ might such an endeavor foster and what might this say about our discipline’s knowledge-making and texting practices? Is it possible to work through ‘structured geneologies’ ‘from within’ while retaining a ‘certain external perspective’ (à la Derrida above) and what might this look like?1 Unwieldy and amorphous as each of these questions is, they form the backdrop against which to understand the current partial Derridean discussion on researching and texting tensions in some strains of ethnographically oriented applied linguistics scholarship. Shifting gears from the other chapters and moving into spaces where we cross-question our meaning-making practices in ailment-related work, this chapter 95

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contributes to scholarship in the field that has seen researchers revisiting their earlier work (Eckert, 2000; Labov, 1997; Norton, 2001), while also calling attention to the fact that its political and ethical dimensions from a Derridean point of view have thus far tended to remain in the wings.2 This is somewhat surprising in light of the fact that Derrida’s work stems from the insights of Saussure on the arbitrariness of the link between signifier and signified. Derrida’s essays are about language, its endless play, its slipperiness and the impossibility of finding meanings that are not innately provisional simply because meaning itself is produced by language which goes slip-sliding away, no matter how one casts the net. While this chapter cannot by any means do justice to Derrida’s complex views on language, there are strains of this philosopher’s thought that allow us to raise and consider provocative questions about some our researching practices. I will specifically focus on Derridean notions of originals, logocentricism, traces and différance, and ways in which they allow us to uncover tensions and contradictions in our knowledge-making practices (Cook, 2005). I attempt here to highlight the importance of critiquing and dis-assembling one’s own researching practices so as to create texturized, parallel narratives that will prod us to deliberate on our researching, thinking, languaging and meaning-making processes. Attempting to retrospectively articulate some of the local constraints around our previous and current thinking – however artificial and contrived the endeavor might be – allows us to begin to speak and write about how these constraints and our languaging of them territorialize our thinking (Deleuze & Gauttari, 1987) thus sealing them with ‘boundaries’.3 Drawing on our present cognitions to revisit old research sites, then, becomes a way of opening up old textual margins and making them more porous, and perhaps revealing what Derrida calls ‘an anxiety of language’ (Derrida, 1978: 3).4 (The past/present, old/new binarisms inherent in such revisitations need to be problematized in Derridean terms as well.) I am going to ground my discussion in some of my early doctoral research, namely my work on the discourse of patients suffering from Alzheimer’s disease (Ramanathan, 1995a, 1995b, 1995c, 1997), and ways in which issues around memories, personal life histories and narrativizing inform identity constructions. Revisiting my ‘old’, ‘prior’ texts allows me to open up and interrogate issues around my previous meaning-making practices (discussed presently) so as to reveal ‘presences’, and ‘traces’ (Derrida, 1981; Norris, 1987; Sturrock, 1979) that trail all writing (and speech). The following questions inform the discussion of this chapter: (1) In what ways does revisiting our old research sites allow us to see the ‘borders’ around our previous meaning-making enterprises and what

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does this say about the synthetic nature of our knowledge-making/ researching enterprise? (2) In what ways does Derridean thought prod us to acknowledge our collective ‘logocentricism’, and what are some implications of such thinking for our discipline’s researching and texting endeavors? This discussion is an extension of my previous thinking, where, in the contexts of teacher education, I have argued for potential teachers to be more meta-aware of their engagements with various aspects of the discipline (Ramanathan, 2002), and where more recently I have engaged in unraveling, in partial Derridean fashion, some of my own knowledge-making practices (especially as they come through translations, Ramanathan, 2005b). As I have explained elsewhere such crossquestioning of our researching–texting practices is not intended to take away from the first, ‘original’ work but to run parallel to our initial endeavors. This kind of work, then, does not so much discredit researching frameworks as much as point openly to their limits, thereby prodding an acknowledgment and discussion of (the Derridean idea of) not just our disciplinary obsession with ‘presences’ (more on this presently) but of what is ‘absent’ in our current researching practices as well, since all presences are marked by silences and absences.5

Derrida in Critical Revisitations: ‘Originals’, Logocentricism, Traces, Différance How does Derrida inform our thinking in applied sociolinguistics? He shows how completely we, even we linguists, take language for granted; he shows us how we use metaphors without even recognizing that they are metaphors (indeed, even those that ground this argument); he suggests that language and thought emerge from (Saussurean notions of) difference and have no solid ground; he points to the violence involved not only in the ethnographic enterprise of people such as Levi-Strauss who are unaware of their appropriation of the other but in all social existence. He tells us that all Western thought from Plato to Saussure is logocentric, that is, it is premised on ‘presence’, unable to contemplate that there may be nothing at bottom, only traces in the air as words come and go (for fuller discussions, see Culler, 1979, 2003). Derrida’s views are extreme stands. While I cannot, and do not, agree with all this, he drives me to revisit my old research sites and sift for myself the ‘sand’ on which those earlier ‘edifices’ (for want of better metaphors) were constructed. Derrida maintains that all Western existence is guilty of ‘logocentricism’ or the ‘metaphysics of presence’, a preoccupation with the various

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aspects of that which is ‘present’, being there, being that which we think we see, hear, understand, interpret, represent, re-scribe, counter. This concern with the ‘present’ orients us towards ordering our worlds and their ‘meanings’ in ways that run the risk of becoming foundational (a tendency that has been critiqued by post-structuralist qualitative applied linguists; cf. Kramsch, 2000, 2003a, 2003b; Menard-Warwick, 2002, 2004; Norton, 2000; Pavlenko, 2001; Rampton, 2006).6 We must, as Derrida would have it, ‘avoid having the indispensable critique of a certain naïve relationship to the signified or the referent, to sense or meaning, remain fixed in a suspension that is a pure and simple suppression, of meaning or reference’ (Derrida, 1981: 74).7 Uncovering our researching–texting tracks through revisitations allows us to interrogate our propensities towards ‘naïve relationships’ and to dislocate whatever meanings we once made with and in our ‘original’ works into another ‘framework that tends to impose a different set of discursive relations and a different construction of reality’ (Lewis, 2004: 258; I am, at this point, using the term ‘original’ to refer to works we first produce, an issue that I hope to problematize by way of Derrida throughout the chapter). ‘Meanings’ that we once made of texts and ‘presences’, then, from this point of view, are at once rendered porous, unstable and changeable. The subject of ‘researcher’ and ‘researched’8 then, no longer seems unitary, and our attempts to ‘fix’ meanings stand out for what they are. It seemed ‘true’ then. But we have moved on, and our present understandings (of ‘truths’, ‘presences’) are susceptible to change. Provisionality is the key word that emerges in the process. What we uncover through revisitations and reinterpretations of our ‘old’ work, then, is likely to be different. The articulation of this difference depends on an open acknowledgement of a ‘past/present’ binarism (a point Derrida would exhort us to move beyond, suggesting an infinity of ‘presents’) and of the fact that it is possible to revisit ‘old’ projects to discern what in our enunciative and discursive patterns held sway the first time the text was produced and what has changed with the revisitation.9 At first glance, this may seem like a banal argument: of course our thinking changes with time, and of course we make sense of our ‘past’ work differently in retrospect. But it is not just this truism that I am concerned with. I am specifically interested in exploring how revisitations throw up Derridean notions of (textual) ‘originals’ and ‘logocentricism’. In other words, in what ways do alternate re-conceptualizations of our previous work complicate our notions of ‘meanings’ (especially ideas of fixity of and around them) and ‘knowledges’ in our discipline the various ways in which we (re)produce texts? If our ‘original’ texts emerge from our preoccupation with ‘presences’ (what we see, hear, counter, re-represent,

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challenge, re-scribe), then surely those same concerns apply the second time around when the ‘researcher’ revisits the old projects, where once again she finds herself being compelled by presences? Only this time around, the ‘presences’ have changed. There are no identifiable pasts because the scenes she was once writing about have passed; there are no ‘real’ texts either because she now reads her ‘original’ texts differently (I am assuming here that a ‘text’ emerges in the reading/interpretation of it and does not really exist otherwise). What she has recourse to, then, are only traces, shadows and echoes of scenes and texts once past, which as Derrida says emerges only through différance, a term coined by Derrida from the French verb ‘différer’, which means both to differ and to defer, a complication that captures Derrida’s preoccupation of meaning being both provisional (endlessly deferred), and arising from differences (in the Saussurian sense). The following quotes partially capture the complexities in and between these notions: If the trace, arche-phenomenon of ‘memory’, which must be thought before the opposition of nature and culture, animality and humanity, etc., belongs to the very movement of signification, then signification is a priori written, whether inscribed or not, in one form or another, in a ‘sensible’ and ‘spatial’ element that is called ‘exterior’. . . . The outside, ‘spatial’ and ‘objective’ exteriority which we believe we know as the most familiar thing in the world, as familiarity itself, would not appear without the grammè, without différance as temporalization . . . . (Derrida in Culler, 2003: 114–115) . . . Différer . . . is to temporize, to take recourse, consciously or unconsciously, in the temporal and temporizing mediation of a detour that suspends the accomplishment or fulfillment of a ‘desire’ or ‘will’ and equally effects this suspension in a mode that annuls or tempers its own effect. And as we will see . . . this temporalization is also temporalization and spacing, the becoming-time of space and the becoming-space of time, the originary constitution of time and space, as metaphysics or transcendental phenomenology would say, to use the language that here is criticized and displaced. The other sense of différer is the more common and identifiable one: to be not identical, to be other, discernable, etc . . . . (Derrida, 1976, reprinted in Culler, 2003: 145; emphasis in the original) Traces, then, emerge only through difference and deferance; they are what signs differ/defer from and are forever under erasure because of ceaseless differences and displacements, and thus always exceed our

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linguistic and textual grasps. Our attempts at languaging them or about them – indeed the present attempt to do so – fixes and bestows on them marks of entrenchments. Indeed, as Derrida would have it, the general act of languaging is the act of fixing it, since language proceeds from emptiness and only and always points away from itself [see Ramanathan (2005b) for a fuller discussion of this point]. Our attempt to fix meaning he attributes to our anxiety for a centre, certitude, a desire for mastery. In terms of the present endeavor, then, revisiting one’s earlier work casts into relief the complex interplay between logocentricism, presences, traces and différance. These notions refract and cast shadows, and make us linguists pause and pay heed to how their ceaseless swirls open up ways for us to articulate the leaps in thinking/cognitions that scholars make in their individual researching journeys. Such an exercise at once destabilizes our research past and sets in motion a process that pries apart the hold that old narratives have on our thinking as we attempt to make sense of old projects by our current, altered and nuanced understandings, a process that is at once reassuring and unsettling (the former because some of our overall questions have not changed, and the latter because the process underscores the impossibility of conceptual closures and the reduction of worlds to ultimate meanings/’truths’) (Norris, 1982).10

My Research on the Dialogic Constructions of Memories and Life Stories of Patients Suffering from Alzheimer’s Disease At the very outset, as I return to the transcripts of my earlier work, I recognize Derrida’s comments on the ethnographic enterprise as violent appropriation of the other, however pure the ethnographer’s intention and however attached she may be to the people in her research. LeviStrauss experienced guilt and sadness when he saw himself as the mediator introducing the violence inherent in ‘civilization’ and ‘writing’ into the world of the Nambikwara tribe. Derrida takes issue with this and says that ‘writing’ (by which he means more than just graphic conventions) was always a part of social existence; that codes of ranking, naming, kinship and other systematized constraints are the ‘arche-writing’ of the culture, its economy of differences (Norris, 1982: 8–29). No type of social existence is ‘unwritten’ in that sense. With the relief offered by that thought I turn to the period when the research was done and to the person that I (think) I was then.

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My doctoral research Because revisitation and reinterpretation necessitates an understanding of what the ‘original’ work was about (Derrida reminds us to always question ‘origins’), I will in this section first engage in the contrived effort of summarizing some of my work on the life stories and memories of ‘patients’ suffering from Alzheimer’s disease before attempting to place it in a Derridean light.11 Assuming a critical gerontological position, I was concerned in my doctoral dissertation with countering several psycholinguistic metanarratives that characterized the deteriorating speech and memory functions of Alzheimer patients. Specifically I was writing against scholarship that viewed human memories in purely mentalistic, cognitive terms, that characterized Alzheimer speech as being ‘meaningless’ and ‘incoherent’, and that insisted on ‘diagnosing’ the ‘language dysfunction’ of these patients in the form of experiments. The overall aim of my dissertation was to represent Alzheimer speech humanistically and to offer a set of counternarratives to the generally positivistic understandings of memories and language (dis)fluency; it stressed, among other things, the value of interpreting Alzheimer speech not as deficient, lacking or meaningless, but as ‘normal’ speech (as speech that is context bound and that varies across time, audiences and physical environments) [see Goodwin (2003) for work on patients with aphasia]. Towards this end, I assumed a methodology and approach that was mixed. Based on ethnographically oriented materials gathered over three and a half years, and on an in-depth analysis of their life stories (following among other discourse models Gee’s (1990) notions of ‘lines’ and ‘stanzas’ for parsing life stories), my project attempted to understand and represent their and my language function in relation to the numerous things in our joint ‘presences’: the senior day care centers I volunteered in and where some of these patients were, their families that I got to know over time, their life histories that I was able to hear several times across diverse contexts and my own changing role and language use in the various spaces. Interpreting Alzheimer speech in ways that captured their ‘present’ speech in the rich contexts in which they occurred and doing in-depth analyses of their discourse became a way of writing against a thick strain of psycholinguistically oriented research, which typically ‘assessed’ Alzheimer speech based on the ‘patients’ ‘performance’ in tests. In such tests, the person had had to tell the difference between a potato and tomato, for instance, as a way of indicating whether they still ‘retained’ a sense of ‘semantic boundaries’, and did not consider a host of other contextual features to which I believed attention should be drawn: that memories and remembering

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are dialogical productions that are co-produced, that the immediate surroundings and day care centers of these patients and the class-based availability or lack of facilities have a direct impact on their willingness to remember, that Alzheimer ‘patients’ were more likely to produce ‘coherent’ extended speech if they were engaged in meaningful activities, that the repetition in their speech when understood in terms of their overall life histories made complete sense, and that it was up to us – volunteers, caregivers, researchers – to see the connections and bridges in memories that ‘patients’ are able to make by getting to know them well in a variety of contexts and across time. It is against this conceptual background that I locate my revisitation to two of the ‘patients’ – Tina and Ellie – that I had followed and got to know over three years. Tina lived in an upper-middle-class neighborhood and operated in a rich, stimulating home and senior center. In my chapters devoted to her, I attempted, among other things, to understand some reasons for the obvious variations in her language fluency (she was clearly more ‘coherent’ and able to engage in more extensive and ‘meaningful’ talk with some audiences and in some contexts than in others). I had chosen to parse her (indeed all Alzheimer) narratives into ‘lines’ and ‘stanzas’ (Gee, 1990), since ‘lines’, I had argued, captured the prosody of the speech and the ‘stanzas’ provided a way of discerning how lines clustered together, thereby affording one a sense of the speaker’s overall coherence [see Ramanathan (1997] for a detailed discussion). I had argued that one reason why Tina was not able to engage in extended narratives with her husband was because of his extensive repair turns in which he both interrupted her talk and then recast her memories for her. The following are representative samples of interactions between Tina and her husband: 1

N: T: N: T: N:

T: N: T: N:

What’s been happening at CAPS (the day care center) lately? 1 Oh not much, I uh we sort of did 2 [. . .] What’s happening with Francis? Is she still bothering you? 3 ya she did, she took away my my . . . she’s horrible . . . 4 is she still taking away your stuff? She’s always taking away your things I wonder if she took away your coat 5 Remember you lost your coat at the center? 6 ya and ah she tore my paper/I am was . . . 7 what paper? Were you all drawing? 8 no no we were using sticks (crayons?) and ah the paper was in . . . 9 What is her problem? I spoke to C about her . . . 10 (Ramanathan, 1997: 77)

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N: T:

N:

T:

N:

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do you recall how you joined the Red Cross 1 Right after college wasn’t it? 2 ya, ya I was I ah I wanted to go 3 I always wanted to go and be part of the Red Cross And so I I joined the Red Cross 5 you enjoyed it? You know they 6 Almost did not let you join 7 Remember Tina how hard it was to get in? 8 well ah I do 9 They thought ah ah they thought I was just all 10 For the uniform 11 no that might have been part of it 12 They were also concerned 13 That you’d gone to an all girl’s school, 14 That you’d been raised by your mother 15 And your two sisters, 16 Your father died when you were very very young 17 So you’d never lived with anybody but women, 18 And you’d gone to school, an all-girls school. 19 that’s right 20. (Ramanathan, 1997: 80)

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In my book (Ramanathan, 1997), I maintained that because of their extensive and conjoined past – a marriage of 35 years or so – and because of his perception of her ‘failing memory’, Nick, Tina’s husband, in both of the above instances (and many others) recasts Tina’s memories and to some extent, inadvertently, hinders her efforts at recalling key events. Because Tina and I did not have such an extensive past/history, she was able to narrate to me quite easily (partially evident in the stanza parsing), as in the following representative example when Tina recounts her father’s death: V: T:

how old were you? 44 ah [. . .] I’d say seven or so, And ah [. . .] when daddy dies I didn’t believe it, Didn’t believe it was real That he died and ah [. . .] And ah I sad I wanted to do to, 45 The funeral, I insisted and pretty soon my mother gave in, And ah but she was right Because we got to the funeral An ah [. . . .]ah[. . .] uh [. . . . . .]

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what happened at the funeral? ah she said ah 46 She didn’t want me to go to the funeral And I insisted and ah she Until then ah she knew I was upset And she didn’t want to make too much of it and ah she [. . .] When they have an open casket . . . 47 They had an open casket for daddy and ah When I saw him I ah ah got very upset and said ‘not my daddy’, ‘not my daddy’ ‘cause he was you know He was cold in the casket . . . (Ramanathan, 1997: 56)

Ellie, the second patient, seemed to operate in contexts vastly different from Tina. She spent most of her days in a low-income day care center in downtown Los Angeles, lived in a poor, federally-funded housing project (for a detailed ethnographic account of her background and living conditions, see Ramanathan, 1997). I first met and got to know Ellie when she had just been diagnosed as being in ‘mild-to-moderate’ stages of the disease, and by the end of three years her condition had progressed to the more ‘severe’ stages. Because a lot of my time in this day care center had been devoted to being around her, I had been able to record her life stories (with permission from her family) in a variety of contexts and ‘presences’ across the three years. In my chapter devoted to tracing various aspects of Ellie’s life stories, I was countering a strong psycholinguistic idea that characterized Alzheimer’s speech as being disfluent, devoid of meaning and of repetition as being a discourse feature that contributed to overall ‘incoherence’. Based on an in-depth schematic discourse analysis of her life stories recorded across this three-year span and on thick, ethnographic descriptions of the contexts she operated in, my chapter was devoted to showing how Ellie had still retained her overall meaningmaking schemas even in the ‘severe’ stages of her condition, and that the repetition that so marked her discourse was ‘bound’ chunks of talk of the kind that also characterizes the talk of all of us who are ‘normal’, since all of us have frozen episodes and memories in our life histories. The following narrative interaction between Ellie and me recorded when she was in the ‘mild’ stages of her condition has ‘explanatory statements’ that get echoed in varying forms three and half years later when her condition has worsened to the ‘severe’ stages.

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What’s your boyfriend like? Which one? Oh, how many do you have? {laughs} may be that’s the question I need to ask Well, it depends on what day, One of them has Saturday off, And the other has Wednesday off, I told them both I’d go with them He says ‘both of us’ I say ‘yes, I’m not interested in one’. Ah one called me a bigamist, And the other said I was man craze I say ‘I don’t think so/otherwise I would be married otherwise’ I said ‘you can ask me to go to bed with you, But ask somebody else, I’m not the type’ And if they were vulgar, ‘go away ask somebody else/I don’t go for that stuff’, And they say ‘what do you think, you are better than the rest’? I says ‘I don’t/I’m just worried about me/I don’ wanna end up like that’, They thought I was kinda snooty, I says ‘not really’. (Ramanathan, 1997: 108)

In my chapter on how repetition in Alzheimer narratives were not ‘incoherent’ but pointed to underlying sense-making schemas despite the ravages of the disease, I showed how certain phrases (such as those italicized above) – the repeated, frozen, bound nature of them – emerged in varying forms across the three-year span, and how they became a fluid crux by which Ellie laminates a host of other tensions, including those around men, dating, her childhood and marriages. The two figures below are intended to show how the repetition in Ellie’s speech, especially that were recorded when she was in the ‘severe’ stages of the disease, harks back to her earlier sense-making schemas. Figure 6.1 captures some of the key events in her life and the larger explanatory themes by which her sense of her past held together, while Figure 6.2 lays out in columns some of Ellie’s speech captured in the early stages of her condition, and some later. Figure 6.1 highlights the key explanatory statements by which Ellie makes sense of her lifestory, all of which connects to themes around ‘distance’ that dominate her life history (being apart from her sister,

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Figure 6.1 A partial schematic map of Ellie’s lifestory (From Ramanathan, 1997)

separation from her parents, marriages breaking up, keeping a distance from men, not committing to anyone; for a detailed analysis of her overall schemas across the three-year span see Chapter 6 of Ramanathan, 1997); the two columns in Figure 6.2 partially demonstrate how this

Texts and Meaning-Making Excerpts from Ellie’s lifehistory (when she was in the mild stages of the disease): overall themes of distance

107 Excerpts of conversations with Ellie (recorded in later stages of her ailment; still evidence of persistent themes of distance)

Her move to California My sister was in the movies for 21 years And they called me up and said she was dying And I had to hurry up here She died within two days after I got here But she was the only relative I had left So I didn’t like it too much Because she was in the movies And I worked in big hotels in Chicago So we didn’t see each other too much Her childhood I was three years old when they [her parents] got divorced So I went to an orphanage I felt far away Stayed there for a while Couple years

Her move to California and her childhood V: A while ago you told me how you got here to California E: sometimes V: You used to be in Chicago, right? E: well, my mother and father don’t live together anymore… I carry on by myself

Then my father got remarried My stepmother took one look at me and she could kill me… So I stayed out of her way, They didn’t care about me I ran away when I was thirteen… Her marriage: Tall and slim [her husband]… Ladies went wild over him I was married twice... He had 3-4 wives All at the same time as me… So if somebody asks me to get married “oh go ask somebody else/don’t ask me I’ve already had it”… Don’t have to answer to no one… (Ramanathan 1997: 104–106)

Her marriage V: You have so many friends here, Ellie E: ya not too much V: quite a few: people coming up to see how you are doing and how you are feeling E: Oh I think they come to ask about my husband They don’t care about me OM to E: did you get married in between since I last saw you? Oh, no, no, no, no, I am not looking for trouble. (Ramanathan 1997: 113)

Figure 6.2 Themes from Ellie’s lifestories (From Ramanathan, 1997)

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notion of distance is still evident despite her deteriorated condition three years later, a point among others that I used to counter a psycholinguistic notion that Alzheimer speech is ‘meaningless’ and devoid of content (in the later stages). Revisiting this work: A Derridean interpretation Revisiting this work for the present chapter has been both reassuring and destabilizing in several ways. A reassuring aspect is that I still agree with my overall orientation to the project, namely that it is important to counter psycholinguistic interpretations of (‘failing’) memories, and ‘incoherent’ speech. First, my thinking at the time of my ‘original’ texts was governed by several local ‘presences’ and issues that promoted psycholinguistically oriented approaches to Alzheimer’s discourse: not only were they were stressed as ‘givens’ in the classes on aging and gerontology that I took, but were heavily underscored by the psycholinguists in my department, and others with whom I had worked. My self-reflexive, critical-gerontological, sociolinguistic approach, which countered the basic tenets of their scholarship, needless to say, did not sit well. In fact, the incongruities between the psycholinguistic viewpoints of Alzheimer discourse and the viewpoints I had established through personal observation and close engagements with ‘patients’ and their families were so intense that my dissertation committee refused to go ahead with my qualifying exam because they found my approach to the topic too humanistic and not experimental enough. This event led me to stop doing this research, and I began to invent myself in ESL. I bring this up now because these local events, like the psycholinguistic scholarship I was countering, impacted parts of my thinking, and prompted me to seal borders around it. The process of revisiting and reinterpreting this work for the purposes of this chapter allows me to uncover how the borders around this work were locally circumscribed partially by my countering psycholinguistic scholarship, and partially by the enormous ideological rift between my more humanistic approach to understanding memories and life stories and the more prevalent experimental approach favored by my dissertation committee. While what happened in my case is an extreme example, the larger point about our locally circumscribed thinking serving as borders and the general relevance of opening up our prior research to ‘redress’ it, as it were, is central here. Revisiting this work also set me thinking about the research itself and about what I would do differently now. Given the Derridean line of thinking that I am assuming here, I would probably now counter the charge of ‘meaninglessness’ in Alzheimer speech in Derridean terms. The perceived ‘incoherence’ of Alzheimer speech by experimental psycholinguists is

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partially because of a tendency to interpret language literally (that if Ellie and Tina’s speech does not map onto a reality ‘out there’, then it is not ‘coherent’). Derrida reminds us of the Saussurean point about language always pointing away from its signifieds, not to them; meaning emerges partly from differentiation (a point built into his différance; more on this presently). ‘Pit’ means what it does because it is not ‘pot’ – meaning is possible through difference, phonetic and semantic difference. ‘Pit’ is pit because it is not a well, not a ditch, not a trench (semantic difference); ‘pit’ is ‘pit’ because the phoneme [i] differentiates it from ‘pot’. Meaning, thus, is built on the quicksand of difference, and to believe that speech is somehow free of this ‘removal’ from the source that is ‘present’ is to be deluded. While this might be a more extreme position to take in applied linguistics, the general point about complicating ‘meanings’ (Hause, 2005) is not to be missed. My interpretation of Tina’s inability to narrate to Nick or of Nick frequently ‘repairing’ her turns was predicated on this assumption of determinacy: meaning for me at the time was trapped in the actual words that both Tina and Nick used, and that I used to describe their speech.12 Experimentally inclined linguistics, and some strains of sociologically motivated applied linguistics has not problematized ‘meaning’ adequately and has tended to interpret it as if it is stable, definable, substantive and inherent in words that can be captured (a point countered by much poststructuralist thought).13 Derrida’s thought reminds us that in Western metaphysics the speaking subject has been privileged as the source of meaning, the origin, the locus of presence. Speech, somehow, has been seen as more authentic, more true, as proceeding directly from consciousness and therefore more present to itself. In fact, the speaking subject is caught on the shifting sands of language which, according to Saussure and Derrida, has only differences and no positive terms. Thus, from this point of view, the Alzheimer patient’s silences and broken speech are only degrees removed from what is in any case a vanishing spiral of smoke or vapor, with trace leading to trace. Derridean analysis shakes the ground when it resists the methodological course of the kind I have described as prevalent in my student days. At the bottom, according to Derrida, is nothingness, the basis upon which all consciousness takes on meaning and speech becomes possible. Having read the recorded transcripts given above of the patients, Derrida’s remarks seem to be especially poignant. Here is Derrida (1978) on the emergence of speech in his essay Force and Signification14 [The anguish of the writer] . . . is not an empirical modification of the state of the writer, but is the responsibility of angustia: the necessarily

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restricted passageway of speech against which all meanings push each other, preventing each other’s emergence. Preventing, but calling upon each other, provoking each other too, unforeseeably and as if despite oneself, in a kind of autonomous overassemblage of meanings. (Derrida, 1978: 9) This description applies as well to the recorded transcripts I have supplied as to the process undergone by those we call ‘creative writers’, or by critics or by academic scholars, indeed by all who use language. My Alzheimer transcripts read differently in the light of such remarks. Derrida’s description of an emptiness out of which speech and meaning emerge struggling, fighting to be heard, applies strikingly to Tina and Ellie’s situations.15 The gaps in the recorded transcript, the ‘Ahhs’ (the groping for words, the difficulties that Tina has in recalling, features that psycholinguistic research views as characteristic of ‘failing memory’) that get repeated can be seen to point to that absence over which an ‘overassemblage’ of words appear out of which the speaker has to choose some, experiencing anguish in the process. I am aware that Derrida was not discussing memory failure (the distinguishing characteristic of Alzheimer patients), but what he says makes one look at gaps, silences, presences, sequences and coherence afresh, since sequencing, coherence and logic, as Derrida reminds us, are interpretations (Derrida, 1978). A re-reading of the conversation between Tina and Nick whose interruptions we have noted may yield a sense of how deeply given we are to logical sequencing: 3

N: T:

N:

T:

N:

do you recall how you joined the Red Cross 1 Right after college wasn’t it? 2 ya, ya I was I ah I wanted to go 3 I always wanted to go and be part of the Red Cross And so I I joined the Red Cross 5 you enjoyed it? You know they 6 Almost did not let you join 7 Remember Tina how hard it was to get in? 8 well ah I do 9 They thought ah ah they thought I was just all 10 For the uniform 11 no that might have been part of it, 12 They were also concerned 13 That you’d gone to an all girl’s school, 14 That you’d been raised by your mother 15 And your two sisters, 16 Your father died when you were very very young 17

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So you’d never lived with anybody but women, 18 And you’d gone to school, an all-girls school. 19 that’s right

What we get from Tina is that she always wanted to join the Red Cross and for reasons more serious than just the uniform (‘they thought I was just all for the uniform’). Her utterances, as we can see, are, grammatical. What Nick adds is sequenced information, which fleshes out Tina’s response (lines 6–8, 12–18), thus rendering Tina’s recalling more full, meaningful and ‘coherent’. What would Derrida say here? Is it that Tina has forgotten the words, cannot call up language or that she cannot decide which to select from the ‘overassemblage’ in her mind? Or is it that our thoughts (and the language we use to encase them) are traces that always resist pinning down? When memory begins to fail, what traces are left of all those ‘thoughts’ that are themselves ‘traces’? Derrida says: The trace is the erasure of selfhood, of ones’ own presence, and is constituted by the threat or anguish of its irremediable disappearance, of the disappearance of its disappearance. An unerasable trace is not a trace, it is a full presence, an immobile and incorruptible substance . . . . (Derrida, 1978: 230) That unerasable trace is the logos, or God, or center which haunts Western metaphysics, which undergirds all our use of language, never countenancing the possibility of emptiness. Logocentrism, the desire for a center that explains our ‘presences’ is characteristic of Western thought (this is Derrida’s critique of what he sees as a vain desire to master anxiety; Derrida, 1978). Nick’s explanation of Tina’s memories regarding the Red Cross seems to proceed from this desire for a center that explains and orders our worlds. This, according to Derrida, also explains our tendencies to not only act, think, behave as if we have grasped ‘the meaning’ but that that grasped meaning excludes other possibilities for the space of that moment. I am deliberately using space and time in terms of each other (à la Derrida) to point to his notion of ‘différance’ (which it can be recalled has both notions encoded in the term). By using the neologism ‘différance’, which in French comes from the infinitive ‘differer’ which is both to differ (in space) and to defer (in time), Derrida suggests simultaneously the shifting sand on which meaning or identity is based (a word means what it does by virtue of being different from related words), and to the fact that that meaning never reaches closure. Through the play of his neologism on (Saussurean) difference and deferral at one and the same moment, Derrida suggests the importance of understanding the unfixed

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nature of language. This seems to me to be highly relevant to my purpose here of underlining the risk of foundational assumptions. To illustrate the instability of meaning, I now take a brief excerpt, Ellie’s transcript recorded at the more severe stage of her condition (see Figure 6.2): V: E: V: E:

A while ago you told me how you got here to California sometimes You used to be in Chicago, right? well, my mother and father don’t live together anymore . . . I carry on by myself

If one looks at the first two sentences, the word ‘sometimes’ suggests that Ellie visits California from time to time, that she lives elsewhere. But allowing for loss in recording, ‘sometime’ could also mean be ‘some time’, that is, for some time she has been living in California. This is almost the opposite of the earlier interpretation that she visits California occasionally. It could also mean that she told me, the interviewer, her story of how she got to California more than once (‘I’ve told you some times’). A single word has yielded three possible readings. Closure is not easy. This would still be the case if Ellie were not afflicted with Alzheimer’s disease. It is worth noting that Derrida expresses in an interview his fear of memory loss. He says: The only loss for which I would never be consoled and that brings together all the others, I would call it loss of memory. The suffering at the origin of memory for me is the suffering from the loss of memory, not only forgetting or amnesia but the effacement of traces. (Derrida, 1995: 143) That did not happen to Derrrida (he died of pancreatic cancer), but the dread in those remarks now casts an unbearable sadness over patients I was sympathetic with, and whose sense-making I was trying to argue for and defend against dehumanizing psycholinguistic tropes. Today I might think in terms of traces, of remembering that ‘differences appear among the elements . . . and constitute the chains, and texts and systems of traces’ (Derrida in Culler, 2003: 106), that there may be indeed a general emptiness from which our languaging emerges, of resisting propensities towards logical sequencing and of interpreting their speech through a variety of lenses rather than attempt to counter the experimentalist approach on its own terms. What does this say, then, about researching–texting processes? One, that our cognitions and knowledge-producing efforts were and are influenced

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by numerous ‘presences’ in our immediate environments (that my writing against psycholinguistic scholarship was partly because they constituted a set of powerful master-discourses in my environment), and two, that the retrospective acts of revisitation and reinterpretation allow one to pry apart the boundaries that govern ‘meanings’ in old research texts and enable connections between earlier and current thinking. As Faubion points out, the ‘task of the history of thought is to identify and delimit the development and transformation of these domains of experience, as these domains and these experiences are diverse, it follows that so too, are modes of thought’ (Faubion, 1994: xxxiv). Given the general drift of this chapter, it is in the (re) tracing of what governs our prior and current thinking that researching ethics lies, since ‘thought’ in a variety of possible forms constitutes ‘the human being as a knowing subject . . . and as an ethical subject’ (Foucault, cited in Faubion, 1994: xxxiv). (It seems to me that moving on, discovering ‘our truths’ (however provisional and slippery), acknowledging contradictions, and failure perhaps, is part of the growth of the ethical subject.) But beyond the ethical nature of this enterprise, this kind of uncovering has also thrown open the (Derridean) issue of ‘originals’: If the initial writings of my Alzheimer research were the ‘originals’ then what is this current revisitation? Am I really able to articulate what my ‘original’ thinking was and how does my referential use of language to do so dismantle the binarism between ‘original’ and ‘current’ setup here?

Conclusions I type this subheading tentatively, hesitatingly, since this chapter has been arguing that argument cannot be conclusive, that, in the words of the old ABBA song, we need to move on. Nevertheless, one needs to ask oneself what these ruminations have clarified, at least to oneself. The Derridean double edge that I am advocating when I posit that we begin to critically address our researching–texting processes by, among other things, revisiting our prior research is one that places the researcher and her texts in interesting disciplinary-textual spaces: not at the center of the ‘language forest, but on the outside facing the wooded ridge; it calls into it without entering, aiming at that single spot where the echo is able to give, in its own language, the reverberation of the work in the alien one’ (Benjamin, translated by Zohn, 2004: 79–80).While completely intertwined with the first effort at producing ‘originals’, revisitations to our prior research represent a very different enterprise. Arguably, the intention of the first effort – where the qualitative researcher is neck-deep in fieldwork, gathering her raw

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materials, transcribing and translating them, consulting the people she is working with, writing ‘original’ drafts – could, at some level, be seen as ‘primary’, with the revisitations being more ‘removed’, and ‘derivational’ (since the latter arguably draws on the nubs of the former).16 However, because both initial productions and subsequent reinterpretations take form in textual molds of the sort that we collectively in the discipline regard as ‘knowledge’ (as books or articles), this division into ‘primary’ and ‘derivational’ seems to break down, raising in its wake Derridean concerns regarding ‘originals’. Are ‘originals’ our first attempts at producing ‘original’ texts? If indeed they are, then what is this chapter? The impossibility of ever fully answering these questions points partially to at least two related issues in our discipline that need problematizing: (1) ways in which we qualitative researchers have, on the whole hesitated to speak about local tensions and problems in our researching practices,17 and (2) our disciplinary preoccupations with use, and our general reluctance to ‘philosophize’ how our insistence on ‘presences’ shape our texting practices. The applied linguistic tendency to overvalue the pragmatic, ‘how-to-do-aspects’ of our professional lives (how to do researching, teaching, writing, grading, materials development) has led to what Derrida (in ‘La mythologie blanche’) calls the us-system: the chain of values linking the usual, the useful and common linguistic usage. Our field has tended to interpret its ‘applied’ focus in utilitarian terms, with the ‘worth’ of research being partially addressed in terms of its use-value (its usefulness in teaching contexts, to solve language ‘problems’, to think in terms of ‘solutions’). While it is not my intention to question the value of such work, it may be time to consider ways in which we can build in parallel narratives that can prod us to reflect out our preoccupation with use. A revisitation has the capacity to do this: by revisiting and reinterpreting old ‘use’-oriented research (one that is more ‘pragmatically’ oriented), some of our attention can get deflected into a newer, more philosophical (albeit less traditionally useful) space. A question, though, I find myself asking now is: what are some implications of Derridean deconstruction for such use-oriented work? Will research-based ‘usable knowledge’ – for pedagogies or policies for instance – be undermined if we take Derrida at his word? Is it indeed impossible, as two characters ponder in Alice in Wonderland about whether we can say what we mean or mean what we say because all meanings are unstable? I don’t know that there is an ‘answer’ to this. I can say, though, that at this stage of my ‘present’ unstable thinking that Derrida’s views nudge us to carefully scrutinize the language we use, that they encourage us to probe as far as possible our unacknowledged foundational

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assumptions, and to admit that our representations are most precariously poised and partial even though for the moment they are all we have; they are our provisional truths, and as for that inner ‘Truth’ or center, it is not there. We look through a glass darkly, and we see only traces. Revisitations permit this glimpse into shadowy traces. But even as I graph this, I can hear Derrida reminding me that the seeds of dismantling are inherent in all texts and that I proceed cautiously: to remember that all textual edifices, including this one, are built on sand, that my referential use of language needs always to be deferred and displaced with parallel cross-questioning narratives, that my creation of past/present, previous/current binarisms are artificial constructions that need to be rethought, since it is our proclivity towards binarisms that does the most violence to our thinking. Processes of revisitations are, needless to say, endless; there is a seductive element of infinity built into this enterprise, since all ‘originals’ and ‘revisitations’ invite subsequent interpretations. And because this process is re-iterative with the possibility of limitless revisitations, there can be no ‘end’ (or conclusion). So I will just cease writing for now. Notes 1. 2. 3. 4.

5.

6. 7.

Segments of this chapter appear in Applied Linguistics 2008, 29 (1), 1–23. Copyright permission is gratefully acknowledged. See Morgan (2002) who addresses Derrida’s difference in relation to the Quebec referendum. At this point, I admit the merging of this Foucauldian approach with the Derridean perspective in which I am interested in. Making connections with previously written texts (and the thinking in them, however variously we articulate that thinking now) pushes us towards spaces that permit more explicit articulations of the relationship of the self to itself (Foucault, 1991, cited in Faubion, 1994: xvii), thus rendering our researching and text and truth-making processes more transparent and ethical. According to White, ‘discourse must be analyzed on three levels: that of the description (mimesis) of the “data” found in the field of inquiry being invested or marked out for analysis; that of the argument or narrative (diagesis), running alongside of or interspersed with the descriptive materials; and that on which the combination of these previous two levels is effected (diataxis)’ (White, 1989: 212). The need for parallel ancillary narratives (that critically reflect, probe and dis-assemble our texting–researching practices) that the present chapter advocates is similar to White’s last level. Indeed, recently published qualitative research handbooks are replete with such issues (Hammersley, 2000; Holliday, 2002; Lincoln & Guba, 1985; Johnstone, 2000; Silverman, 2005). Norris points out that this involves a ‘sustained and rigorous attention to the ways in which a certain idea of referential language – or indeed a certain

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11. 12.

13. 14. 15. 16. 17.

Bodies and Language materialist metaphysics – has managed to deflect such thinking from its proper aim’ (Norris, 1987: 143). This has been problematized in several recent publications including Ramanathan (1997, 2005a, 2005b, 2005d), Carspecken (1996), Kincheloe (2004), Silverman (2005) and Holliday (2002). Derrida would say that there is no way we can ever make our way back to our original thinking, since there are no ‘origins’ to begin with, but for the sake of present argument I have to have some anti-Derridean scaffolding! I need to note here that the Derridean and Foucaultian lines of dis-assembling that I am advocating here have been seen to lock horns by Derrida and Foucault themselves, with the former maintaining that there is no opting out (a neo-Kantian tradition) of a text, ‘that it is only by working persistently within that tradition but against some of its ruling ideas that thought can muster the resistance required for an effective critique of existing institutions’ (Norris, 1987: 217), and the latter insisting on institutionalized relations between power, knowledge and the discourses of reason, where knowledges can become kinds of social control. The present discussion does not view these positions as mutually exclusive: a close reading of one’s prior texts and an open acknowledgement of one’s positioning inside a tradition (a la Derrida) dovetails effectively with the general argument proffered here about uncovering some of our (prior and current) knowledge making tracks that govern our thinking. As mentioned previously, I will be engaging in a ‘old–new’/’prior–current’ binarism here, but will in Derridean fashion attempt to show how the seeds of its dismantling are already inherent in my texting of it. While at one level language is intentional – with speakers and authors using it to convey (‘present’) intentions and meanings – it exceeds any set limits as well, with meaning escaping boundaries set either by the author–speaker or by the reader–listener [cf. Bakhtin’s (1981) double-voiced discourse; see also Fairclough, 1992; Wodak, 2002]. Such a view at once makes us question the interpretations we impose on others’ language, including my interpretation of Alzheimer life histories that was aimed at countering psycholinguistic interpretations, and psycholinguistic interpretations that tend to address language ‘impairments’ literally, for instance. Revisiting this material from this Derridean positioning certainly makes both – mine and psycholinguistic interpretations – smack of an uncomfortable conservatism. As one of the editors pointed out to me, ethnomethodology and conversation analysis in Applied Linguistics has a long history of complicating ‘meanings’. It maybe noted at this point that for Derrida, speech is writing, that all is writing, so that when he speaks of the writer, he is also speaking of the speaker, in this case my Alzheimer patients. Perhaps, one may sweepingly infer, this angustia or anguish characterized the first stages of human speech. Coherence and incoherence, fluency and dis-fluency – from whence do they come? As the general drift of the present argument goes, revisitations serve to laminate previous, ‘original’ canvases differently. See Applied Linguistics 26 (4) for articles that attempt to directly address researching tensions.

Chapter 7

Critical Ailment Research in Applied Sociolinguistics: Power, Perception and Social Change

We must also describe the institutional sites from which the doctor makes [his] discourse, and how this discourse derives its legitimate source and point of application (its specific objects and instruments of verification). In our societies, these sites are: the hospital, a place of constant coded, systematic observation, run by a differentiated and hierarchized medical staff, thus constituting a quantifiable field of frequencies; far less numerous observations, but which sometimes facilitates observations that are more far-reaching in their effects, with a better knowledge of the background and environment; the laboratory, an autonomous place, long distinct from the hospital, where certain truths of a general kind, concerning the human body, life, disease, lesions, etc, which provide certain elements of the diagnosis, certain signs of the developing condition, certain criteria of cure, and which makes therapeutic experiment possible; lastly, what might be called the ‘library’ or documentary field, which includes not only the books and treatises traditionally recognized as valid, but also all the observations and case histories published and transmitted, and the mass of statistical information (concerning the social environment, climate, epidemics, mortality rates, the incidence of diseases, the centres of contagion, occupational diseases) that can be supplied to the doctor by public bodies, by other doctors, by sociologists, and by geographers. Foucault, The Archeology of Knowledge: 51–52 The body is the vehicle for being in the world, and having a body is for the living creature, to be involved in a definite environment, to identify oneself with certain projects and be continually committed to them. In the self-evidence of this complete world, in which manipulatable objects still figure, in the force of their movement which still flows towards him, and in which is still present the project of writing or playing the piano, the [cripple] still finds the guarantee of his wholeness. But in concealing his deficiency from the him, the world cannot fail simultaneously to reveal to him: for, if it is true that I am conscious of my body via the world, that it 117

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I begin this ‘conclusion’ by bringing back the Foucaldian and MerleauPontian quotes from Chapter 1’s Afterword, and I do so deliberately to not only underscore the visibility–inequality nexus that runs through the previous chapters, but to also call attention to two latent themes: (1) that medical discourses along with detailed, systematic modes of documenting, texting, presenting ‘normal’ bodies in certain ways create particular kinds of knowledges and meanings about one’s ailing/disabled condition (see underlined segment of the above Foucauldian quote); and (2) that our encounters with the world happen through our bodies (Merleau-Ponty). Our bodies are as much the medium as our language of it is; in other words, they have corporeal, lived qualities through which we fashion our negotiations with the world. These realities are intimately tied to issues of dis-citizenship, identity and constructed notions of ‘normalcy’, which as we have seen, emerge in distinct ways in first-person and caregiver accounts. This chapter speaks to these issues, while also projecting ahead to what critical ailment research in applied linguistics might look like.

Dis-Citizenship, Exclusion and Communal Concerns Issues of dis-citizenship, exclusion and feeling alienated because of one’s bodily conditions are, to a large extent, communal concerns that need communal responses, and one starting point would be to begin by calling attention to definitions of words such as ‘normal’. As Devlin and Pothier (2006) point out with regard to the term ‘disability’, while words such as ‘race’ and ‘gender’ do not in themselves designate a specific subset of the population (in the sense they are facially neutral), ‘disability’ does explicitly engage in the targeting. Also, the word ‘disability’ is defined pejoratively in dictionaries, in terms of inability, incapacity or impotence. While ‘normal’ is not defined pejoratively – indeed, ‘disability’ is understood in relation to ‘normal’ – it is a term whose associations we desperately need to rent asunder. Dictionary definitions of the term – the orientations to conformity and constituting ‘standards’ – and our collective understandings of them keep us from viewing ailing bodies as dynamic, fluid entities; ailments and disabilities have no essential nature; rather depending on what is valued (perhaps overvalued) at certain sociopolitical conjunctures, specific

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personal characteristics are understood as ‘impairments’ and as a result, people get labeled as not having ‘normal’ bodies/abilities. Often beginning with a medical diagnosis that serves the function of social categorizing, the official linguistic naming/classification of an ailment sets in motion a sequence of steps that from some points of view, are binding and restrictive (although there are also accounts of patients being infinitely relieved with a diagnosis after months of not knowing why their bodies are not functioning the way they used to; see Wendell, 1996). Englehardt (1986), contesting the idea that medical classifications are objective construals of reality, believes that concerns with evaluation and explanation inform a range of issues in healthcare decisions, including whether problems are medical problems and about how medical problems ought to be understood and classified. Calling for more democratization in the processes of medical classification, he says: Communities must begin with a recognition of the constructed character of medical reality. This recognition underscores our choices and indicates our responsibilities as individuals who not only know reality but also know it in order to manipulate it. One must also recognize that these manipulations tend to be communal. Systematic programs for treatment and for the assessment of treatment, or communal assurance policies, are in principle not the undertakings of isolated individuals. As a result, communities of physicians, insurers, and the general public will need to negotiate regarding the characterization of medical reality where the interests of these groups do not coincide. Such negotiations may take on either a formal or informal character. In either case, they represent a democratization of reality. (Englehardt, 1986: 194) While democratization may be the ideal to strive for and towards, the inequities informing social positionings of those with ailments and disabilities are very real and coincide markedly with gender, ethnicity, race and class (Pope & Ripich, 2005). The role that health insurance policies play in such a scenario (cf. Navarro, 2005), at least in countries like the United States, where a category of ‘pre-existing condition’ (chronic conditions such as epilepsy or type-1 diabetes) automatically exempts one from being eligible for health coverage, darkens lines between the ‘haves’ and ‘have nots’, perpetuating dis-citizenship and exclusionism. Also, there is every reason to be cynical about the lack of access for people who are bed-ridden, poor and frail (Davis, 2005). However, too much of a focus on societal/communal concerns around ailments/disabilities can run the risk of losing sight of human agency, of the voice of patients both acquiescing to and contesting the medical world

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(a point that comes through with first-person accounts). As the previous chapters have pointed out and as explained in Chapter 1, the process of culling accounts and holding them up to scrutiny, regardless, to some extent of their tendrils to contexts – a process that Bauman and Briggs (1990) call entextualization – allows us to zoom in on segments around which we can momentarily darken borders so as to let particular articulations of subjectivities emerge. This point is crucial since it is in and through recountings of experiences that processual aspects of one’s shifting positionalities, especially in relation to our bodies (undergoing major surgeries, moving from being two-breasted to single- or no-breasted, learning to negotiate mechanical body appendages vis-à-vis the world) becomes more ‘visible.’ As Teresa de Lauretis (1982) points out, experience is not the just the acknowledgment of sensory data, or a psychological relation to events or things in the work, or even acquisition of skills and competences by accumulation or repeated exposure that has individualistic overtones, but is the evolving set of processes by which we grow as social beings. The process, then, ‘is continuous, its achievement unending or daily renewed. For each person, therefore, subjectivity is an ongoing construction, not a fixed point of departure or arrival from which one then interacts with the world. On the contrary, it is the effect of that interaction – which I call experience; and thus it is produced not by external ideas, values and material causes, but by one’s personal, subjective, engagement in the practices, discourses, and institutions that lend significance’ (Teresa de Lauretis, 1982: 159). So, how then, might critical ailment research in applied linguistics look like? How can we account for both community-related issues around illnesses and dis-citizenship as well voices of agency, since the two together allow us to both acknowledge societally inflicted wounds (resulting from our collective notions of ‘normalcy’) while also not losing sight of the local exigencies around individual voices (Kontos, 1999). It is to this that I now turn. Ailment/disability-related meanings to be understood in relational terms Views of and enactments around ailments/disabilities are far more relational than we assume. As we saw in Chapter 2, ideas of an ‘attractive’, ‘normal’ female body and ‘two breasts’ correlate strongly with Tania feeling the pressure to wear a prosthesis to an interview (when for the most part she is single-breasted), and Mark Weissberg thumbing through catalogues for breast reconstruction for his wife looking for models of ‘attractive’ breasts. These relations between normalcy and being single- or no-breasted assume the forms, tenor and performances they do because our views about

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‘normalcy’ are so heavily enforced (Davis, 1995) by the language of medicine. The metaprescriptive utterances around breast cancer – chemotherapy, amputations, and prosthesis – emerge from a very complex set of interrelations that also constitute the system of thought from which they proceed. However, it is in the critical recognition of the relational aspects that make up ‘systems’ of thought that we can begin to offer counter-interpretations that both contest existing relations while moving towards establishing different ones. As the various chapters of this book have sought to point out, meanings (of ourselves and others in Alzheimer diaries, of our ‘normal’ bodies in relation to breasts, or of intentions of the larger world in the case of autism or partial hearing) are not necessarily stable at all, but are epiphenomenal and determined by an extralinguistic reality through relations of cause, representation, expression or retrospection. Thinking about ailmentrelated meanings from this viewpoint moves us beyond meanings handed down to us to the possibility of different interpretations.

Meanings about Ailments/Disabilities are Tied as Much to the Politics of Reception as They are to Politics of Production Picking up from point 1, ailment-related meanings need to be understood in terms of contexts of textual production as well textual reception. The production of our texts happen amid a myriad of factors that we often lose sight of: that the gathering of our data happens in particular times, locales and contexts, as does our analyzing and writing of it all, that our interpreting of materials are shaped by our cognitions that are influenced by a host of factors (disciplinary, theoretical orientations, conversations with colleagues, forays into particular ailment/disability worlds), that our textual productions often emerge from wells of personal experience (either one’s own or caring for a loved one) that crucially inform the meanings that we attribute to the people we write about and that we construct in our texts. The dynamics of how our texts are received contribute equally to the construction of meanings. Our audiences, like our contexts of text-production, are heterogeneous not just in terms of people reading them (marked as we all are by gender, ethnicity, sexuality, and ‘disability’), but also by issues of temporality and spatiality as well (the relative time of a text and the space into which it makes its entry). Also, crucial to bring into the fluidity of meanings is what happens to ‘meanings’ when we return to our ‘old’ data and attempt to re-interpret our prior texts from the point of view of our current cognitions. Opening up our previously gathered data to newer interpretations – as Chapter 6 points out – allows us to

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acknowledge not only how our thinking has evolved with time, but how ‘old’ ailment/disability data acquire new meanings with different theoretical orientations, and how local dynamics of reception contribute to the ‘newer’ meanings/readings of ‘older’ work.

Ailment-Related Meanings in Slippages, between Body Breakdowns and Subsequent Medical Tropes Shifting focus from meanings of ailments emerging from medical discourses, this point probes the possibility of ailment-related meanings being in the pre-languaged experience of the body breaking down, the space before medical tropes have stepped in. While the idea that (bodyrelated) experiences and their meanings emerge only through language is a truism now in poststructuralist thought, a notion that has not been afforded adequate attention is the idea that meanings of ailments and breakdowns may also be nondiscursive. A diabetic coma or an epileptic seizure happen regardless of the language we use, although, as we saw in both Sinfree’s and Jody’s cases, neither can ever speak of their conditions except through the (Foucauldian) medicalized discourses, and the meanings that they and we have of their conditions are dominated by these tropes. Their (and our) negotiations in and with the world happen through bodies, which as Merleau-Ponty reminds us, are the mediums by which engagements happen. Language, then, from this point of view, takes a back seat, an implication that opens up the question: Might ailment-related meanings also reside in pre-discursive spaces? Looking ahead Meanings and texts of ailment-related research, then, have both communal and individual dimensions to them that need always to be addressed in relation to each other. Power, agency, visibility and the unequal distribution of a community’s resources are thick strands that inform critical ailment research in our discipline. Corporeal realities of and around bodies – the lived, daily struggles as the various chapters in the books have underscored – are not just about (Foucauldian institutional discourses) of functional inadequacies, linguistic impairments, artificial body parts, routinized shots or dialysis (all conditions that carry individualized overtones), but very much about the unequal distribution of social goods (that my partner can never qualify for life insurance or health insurance on his own because of what US health insurance policies call ‘pre-existing’ conditions), societal and institutional priorities (particular ailments coming into

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purview and being accorded more attention; for example, autism has suddenly emerged in the US media because of, among other things, famous film actors championing its cause), and grassroots political movements (breast cancer walk-a-thons to galvanize support to raise funds). The entries into critical ailment orientations that I have sought to both construct and exemplify through alternate interpretations of the language of ailments by focusing on first-hand accounts, and through a selfconscious reflection on our meaning and text-making practices are intended to underscore how individuals get positioned amid entrenched societal, bio-medical and knowledge making discourses, while also serving as a reminder to proceed cautiously as we use language to proffer alternate interpretations of ailments/disabilities. Winding down There are a host of issues, though, that this book has not addressed. I have said nothing about conditions relating to chronic pain, problems around medications, issues around understanding prescription details, struggles with understanding the language of health insurance policies, issues relating to organ transplants or complications around the search for an ‘appropriate’ donor and organ. Neither have I said anything about psychosomatic disorders, stress-related ailments, bipolar conditions, obsessive compulsive behaviors. There is a lot I have left out, but my aim with this book is not to offer a comprehensive palate of ‘ailments’ as much as it is to: (1) bring discourses of bodies, ailments and ‘normalcy’ more centrally into the field; (2) offer a sense of what alternate interpretations of dominant medical discourses might look like;and (3) flesh out what critical ailment research might look like. The counter languaging offered in the preceding chapters, then, are all about infusing different, and perhaps, in some cases, newer meanings into what is generally accepted as ‘commonsensical’ knowledge. I end, then, by reiterating the positions with which I began: that perception and power (Merleau-Ponty and Foucault) and inextricably linked. What emerges as a body/ailment account at any given time has to be understood amid a host of contextual issues that render the account audible and visible, as well as societal positionings of gender, ethnicity and sexuality. Not only do the audibility and visibility of accounts impact and shape audiences – genderizing them, or highlighting aspects of their ethnicity or sexuality, sometimes all at once (Blommaert, 2005; Mills, 1994) – they simultaneously point to fissures in theories, and make us take heed of the conceptual apparatuses we draw on to make truth claims.

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As mentioned in the Introduction, they make us vigilant of the need to sometimes re-theorize, of the temporalities of all theoretical articulations, and of the need to keep our text-making practices responsible and relevant. The four points with which I ended the Introduction are the very ones I wish to end this segment of this work with: (1) Corporeal, material and language-related issues around bodies matter: Firsthand accounts are not inert passages of sedimented thought but are vibrant texts or dialogues whose articulations have to be understood in terms of bringing attention to issues of embodiment as well as in relation to particular temporal and audience-related connections. (2) The language of ailment/disability experiences and body breakdowns matter: It places the applied linguist in the position of offering alternate interpretations that involve immanent critiques of how language and body-related ‘norms’ are kept in place and reproduced. (3) Ways in which research on disability issues allows us to move our thinking about text- and meaning-making to other planes matter: As unfinished matches, texts become triggers for continual critical thought, resisting the applied linguist’s attempts at finalities or closures of any sort, either through appropriations, counter-readings or simple projections. Texts become present as active others that can prod our thinking into different spaces, that allow us to contest dominant views, and not just as objects or mirrors to explain or reflect. (4) It is in dialogues with texts – health policies, first-hand accounts, conversations with doctors, written diaries, among others – that the critically engaged applied linguist becomes aware of her roles as researcher, partner, social being, and permits alternate, less entrenched language and meanings that are simultaneously acts of transformation even as they are active moments of reception and recovery. From such a point of view, this strain of applied linguistics becomes an education in cultural and social awareness.

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Index Abject 33, 34 Abjection 33 Absences 45 Alzheimer’s disease 3, 40-59 Amputated bodyparts 22 Applied sociolinguistics 8 Asexual 2 Autism 3 Autobiography 41-45 Body horrors 32 Breast cancer 2, 18-39 Breast Cancer Fund 32 Breasts 21

Gangrene 29 Gramme 57 Hegemonic 38 Ideal-I 86 Identities 7 Imaginary 87 Inner speech 90, 91, 92 Intentions 56, 80, 81, 84, 87 – intentionality 81 Invisible ailments (epilepsy, type-1 diabetes) 60-79 Knowledge-making 95

Chemotherapy 25 Chronic ailments 60-79 Cinders 44 Citizenship 6, 7 Coherent 111 Corporeal experiences 4 Corporeality 60 Critical disability theory 6 Diaries 40-59 Difference 96, 99, 111 Demande 87 Dementia 41 Diabetes 2, 19, 60-79 Dialogic 90-92 Dialogue 90 Dis-citizens 7 – dis-citizenship 118 Docile bodies 11 Epilepsy 2, 60-79 Entextualizing 12 Entrenchment 60 Fetishism 37 Fetishized breasts 32 Fissures in theories 12 – (re)theorizing 12

Lactation 34 Logocentricism 96, 97 Mastectomies 22 Meaning-making 95-116 Meconnaissance 86 Memory 40-59 Mentalistic 11, 40 Metaprescriptive 18 Mis-reading 84 Narrative truths 20 Originals 96, 97 Paralogy 21 Partial hearing 80-94 Perception 9 Permanence 67, 74 Pharmakon 28 Post-menopausal 33 Postmodernity 60 Powers of horror 37 Presences 45, 97, 99, 108 Prosthesis 34, 35 Provisionality 98 Psycholinguistics 41

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Real 86 Recit 41, 48 Recital 49 Re-cog-nizing 31 Repetition 41, 49, 102

Social constructionist 2 Socially abjected 37 Societal metaphors 30 Sociocognitivist 83 Subject-object 10

Sedimentizing 78 Self 40-59 Sign language 92 Signifier, signified 96 Signs 46

Texting 95 Traces 43, 50, 74, 97, 99 Tumour 31 Visible 10