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Table of contents :
Acknowledgements
List of contributors
Chapter 1. Language, body, and health: An introduction
Part I. Bodies and communication
Chapter 2. Community, controversy, and compromise: The language of visual impairment
Chapter 3. Rebuilding the body: Biomedical and societal discourses and the decision to perform a living-donor organ transplant surgery
Chapter 4. Reading “intentions”: Communication challenges for parents of children with autism and partial hearing
Part 2. Bodies and cognitive “impairments”
Chapter 5. Intentional stance and Lucinda Greystone: Embodied memory in conversational reminiscence by a speaker with Alzheimer’s disease
Chapter 6. Body in autism: A view from social interaction
Part 3. Bodies and chronic ailments
Chapter 7. Negotiating the invisible: Two women making sense of chronic illness through narrative
Chapter 8. “Training your taste buds”: The language of success in diabetes “self-efficacy”
Part 4. Bodies and body performances
Chapter 9. The discursive construction of the female body in family planning pamphlets
Chapter 10. Blood talk: A discursive perspective on transcultural identity and mental health
Chapter 11. Body acts: Contemporary Chinese body performance, critical narrative, and somatic writing
Chapter 12. Bodies and applied linguistics: The challenge of theory
Index
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Language, Body, and Health

Language and Social Processes 2

Editors

Richard J. Watts David Britain

De Gruyter Mouton

Language, Body, and Health

edited by

Paul McPherron Vaidehi Ramanathan

De Gruyter Mouton

ISBN 978-1-934078-19-8 e-ISBN 978-1-934078-20-4 ISSN 2192-2128 Library of Congress Cataloging-in-Publication Data Language, body and health / edited by Paul McPherron and Vaidehi Ramanathan. p. cm. ⫺ (Language and social processes; 2) Includes bibliographical references and index. ISBN 978-1-934078-19-8 (alk. paper) 1. Communication in medicine. 2. Human body and language. I. McPherron, Paul, 1975⫺ II. Ramanathan, Vaidehi, 1965⫺ R118.L357 2012 610⫺dc23 2011042272

Bibliographic information published by the Deutsche Nationalbibliothek The Deutsche Nationalbibliothek lists this publication in the Deutsche Nationalbibliografie; detailed bibliographic data are available in the Internet at http://dnb.d-nb.de. ” 2011 Walter de Gruyter, Inc., Boston/Berlin Typesetting: RoyalStandard, Hong Kong Printing: Hubert & Co. GmbH & Co. KG, Göttingen ⬁ Printed on acid-free paper Printed in Germany. www.degruyter.com

Acknowledgements As with most pieces of writing, anthologies begin with very small germinating ideas, and this one took shape because Cathleen Petree at Mouton de Gruyter spotted a panel on Bodies and Language that we hosted at AAAL 2008. She saw a possibility here and her encouragement, which we very gratefully acknowledge, moved us to contacting the various authors in this volume. Her untimely passing last year makes the themes in the volume that much more relevant. We would also like to thank each of the authors for their hard work and timely submissions. The volume represents diverse disciplinary orientations, and a variety of research methods and perspectives, with each chapter illustrating an open-minded and creative approach to some very challenging and often overwhelming contexts relating to health and bodies. We especially thank Tim McNamara, who so graciously agreed to be discussant on our panel and also to write the afterword for this volume. Though di‰cult, he insightfully pulled together themes and issues from the various chapters, focusing on how our work is informed by and informs theory in applied linguistics and studies of language. Our families have always supported our work. Much has happened health-wise and bodies-wise in the last few years, reminding us of life’s fragile and precarious moments. For nudges and lessons about how much we take for granted – thank you. August 4th, 2010

List of contributors David Bolt (PhD) ([email protected]) is Lecturer in Disability Studies in the Faculty of Education at Liverpool Hope University, where he is also Recognised Researcher and Director of the Centre for Culture & Disability Studies. He is editor of the Journal of Literary & Cultural Disability Studies and an editorial advisor for Disability & Society and the Journal of Visual Impairment and Blindness. He has more than three dozen publications to his name, including journal articles, chapters, special issues, poems and short stories. He is currently working on a monograph entitled The Metanarrative of Blindness. Boyd H. Davis ([email protected]) is Bonnie E. Cone Professor of Teaching in Applied Linguistics/English and Professor of Gerontology at University of North Carolina – Charlotte. Her areas of interest include sociohistorical linguistics; Alzheimer’s speech; narrative, pragmatics and stance; and digital collections of speech. Her most recent book is Alzheimer Talk, Text and Context (Palgrave 2008, 2005). Her twelve-year longitudinal collection of conversational interviews with persons with Alzheimer’s disease is one cohort in the online digital Carolinas Conversations Collection, sponsored by the National Libraries of Medicine. She is co-principal investigator for this portal, available at Medical University of South Carolina in 2011. Catherine Evans Davies (BA Pomona College, MA Stanford University, PhD The University of California, Berkeley) ([email protected]) is Professor of Linguistics in the Department of English at the University of Alabama. An interactional sociolinguist whose work includes a focus on Southern discourse, she is co-editor (with Michael D. Picone) of Language and Variety in the South: Historical and Contemporary Perspectives, forthcoming from the University of Alabama Press. Linda Knol (PhD RD) ([email protected]) is an Associate Professor in the Department of Human Nutrition and Hospitality Management at The University of Alabama. She holds a PhD in Human Nutrition and a MS in Public Health Nutrition from the University of Tennessee, Knoxville. Dr. Knol has previously worked in public health nutrition as a primary care dietitian for six years. In this role she provided diabetes education programs and nutrition counseling to low-income clients of diverse backgrounds. While in the role of a nutrition counselor, Dr. Knol started using patient success storytelling with her clients.

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Busi Makoni ([email protected]) holds a PhD in Applied Linguistics from Edinburgh University. Her research interests are in second language acquisition, gender, security and peace building, language and gender, feminist critical discourse analysis, and language policy and planning and language rights. Some of her research has been published in the Journal of Second Language Research, Per Linguam, Current Issues in Language Planning, Journal of Language, Identity and Education, and the International Multilingual Research Journal. Sinfree Makoni ([email protected]) is an Associate Professor of Applied Linguistics at Pennsylvania State University. Some of his research in the last two years has been published in the International Multilingual Research Journal, Language in Society, Current Issues in Language Planning, and the Journal of Language, Identity, and Education. He has authored and co-edited a number of books with di¤erent colleagues. His most recent co-edited volume is Disinvention and Reconstituting Languages (Multilingual Matters, 2006) (edited with Alastair Pennycook). Tim McNamara ([email protected]) is Professor in the School of Languages and Linguistics at The University of Melbourne, where he teaches and supervises at the graduate level in Applied Linguistics. His publications include Measuring Second Language Performance (Longman, 1996), Language Testing (OUP, 2000) and Language Testing: The Social Dimension (with Carsten Roever; Blackwell, 2006), which won the Sage/ ILTA Award in 2009. His main areas of research are in language testing, including its social and political aspects, and poststructuralist approaches to language and identity. Paul McPherron ([email protected]) is an Assistant Professor of Linguistics and TESOL at Southern Illinois University, Carbondale, where he teaches graduate and undergraduate courses in Linguistics, TESOL Methods and Materials, and Cross-Cultural Communication. His past work has been published in journals such as the Asian Pacific Journal of Education and CATESOL, and edited volumes such as Crossing Cultures: Journeys in English Academic Writing. His research interests span English teaching reforms, the use of digital stories and media in the English classroom, and the languaging of organ transplant surgeries. He is currently working on several classroom-based research projects and an analysis of interviews with organ donors and recipients. Hanako Okada ([email protected]) teaches academic writing to students from diverse linguistic and cultural backgrounds at Sophia University in Tokyo, Japan. Her research interests are in situated qualitative

List of contributors

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research, reflective personal narratives, bilingual identity, and sociocognitive approaches to second language acquisition. Past research has been published in the Modern Language Journal and Learning the Literacy Practices of Graduate School: Insiders’ Reflections on Academic Enculturation. Current research projects include narratives of the chronically ill, ‘pleasures and perils’ of narrative inquiry, and the issue of labels in applied linguistics and TESOL. Matthew T. Prior (Ph.D. University of Hawai‘i at Ma#noa) (matthew.prior@ asu.edu) is Assistant Professor of English at Arizona State University, Tempe. His research and teaching interests include narrative and discursiveconstructionist approaches, socio-psychological dimensions of language learning and use, multilingualism and identity, and language, gender, and sexuality. His recent work with immigrant and transcultural individuals and communities focuses on the discursive (re)organization of emotion and experience and its relationship to language practices, mental health, and social identification, participation, and opportunity. He has served as Managing Editor of Language Learning & Technology and Assistant to the Editor for Applied Linguistics. Vaidehi Ramanathan ([email protected]) is Professor of Applied Sociolinguistics in the Linguistics Department at the University of California, Davis. Her research interests span aging, health, and disability studies as well language learning and literacy studies. Her publications include: Bodies and Language: Health, Ailments, Disabilities (Multilingual Matters, 2010), The English-Vernacular Divide: Postcolonial Language Politics and Practice (Multilingual Matters, 2005), The Politics of TESOL Education: Writing, Knowledge, Critical Pedagogy (Routledge, 2002) and Alzheimer’s Discourse: Some Sociolinguistic Dimensions (Lawrence Erlbaum, 1997). Fei Shi ([email protected]) holds a Ph.D. in Comparative Literature and is currently a faculty member of Quest University, Canada. He teaches world literature, Chinese literature and Culture, and theater and performance studies. His major academic interests are intercultural and transnational performances, feminist and queer theory, and comparative literary studies. Olga Solomon ([email protected]) is an Assistant Professor of Occupational Science and Therapy at the University of Southern California. Her research examines how children and youth with autism engage in meaningful activities with family members, therapists, teachers, and peers in daily life. An abiding interest of her work is in how individuals with autism co-construct

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meaning and social relationships with others employing socio-communicative resources that are available to them and their communicative partners in their social environment; and how interactional dynamics in clinical encounters among children, family members and practitioners a¤ect diagnostic processes, interventions and services. Lori Turner ([email protected]) is a Professor of Health Science at The University of Alabama. She earned a Bachelor of Science degree from Florida State University in food and nutrition. She earned two Master of Science Degrees: one in Dietetics and Nutrition and one in Health Education from Florida International University and Florida State University respectively. She completed a Doctor of Philosophy degree from The University of Alabama in Health Education and Health Promotion. She is a Registered Dietitian and has authored nineteen published instructor manuals for college-level nutrition textbooks and twelve published student study guides. She has authored two college-level health textbooks: Life Choices: Health Concepts and Strategies and Wellness: Guidelines for a Healthy Lifestyle. Much of her research is focused on osteoporosis prevention and she has authored 76 published articles and 90 presentations at conferences.

Contents Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . List of contributors. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

v vii

Chapter 1 Language, body, and health: An introduction. . . . . . . . . . . . . . . . . . Paul McPherron and Vaidehi Ramanathan

1

Part I. Bodies and communication Chapter 2 Community, controversy, and compromise: The language of visual impairment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . David Bolt Chapter 3 Rebuilding the body: Biomedical and societal discourses and the decision to perform a living-donor organ transplant surgery . . . . . . . Paul McPherron Chapter 4 Reading ‘‘intentions’’: Communication challenges for parents of children with autism and partial hearing. . . . . . . . . . . . . . . . . . . . . . Vaidehi Ramanathan Part 2.

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Bodies and cognitive ‘‘impairments’’

Chapter 5 Intentional stance and Lucinda Greystone: Embodied memory in conversational reminiscence by a speaker with Alzheimer’s disease . . Boyd Davis Chapter 6 Body in autism: A view from social interaction. . . . . . . . . . . . . . . . . Olga Solomon

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105

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Contents

Part 3. Bodies and chronic ailments Chapter 7 Negotiating the invisible: Two women making sense of chronic illness through narrative. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hanako Okada Chapter 8 ‘‘Training your taste buds’’: The language of success in diabetes ‘‘self-e‰cacy’’ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Catherine E. Davies, Linda L. Knol, and Lori Turner

145

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Part 4. Bodies and body performances Chapter 9 The discursive construction of the female body in family planning pamphlets . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Busi Makoni and Sinfree Makoni Chapter 10 Blood talk: A discursive perspective on transcultural identity and mental health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Matthew T. Prior Chapter 11 Body acts: Contemporary Chinese body performance, critical narrative, and somatic writing. . . . . . . . . . . . . . . . . . . . . . . . . . . . . Fei Shi

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Chapter 12 Bodies and applied linguistics: The challenge of theory . . . . . . . . . . Tim McNamara

267

Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

279

Chapter 1 Language, body, and health: An introduction Paul McPherron and Vaidehi Ramanathan This book is a compilation of chapters that address ways in which ‘‘bodies’’ – conceived broadly – get languaged (Ramanathan 2009). Towards addressing this key concern, the volume seeks to establish a newer place regarding modes of inquiry about body-related issues, and underscores the need to encourage alternate ways of speaking, writing and thinking about body concerns. It calls attention to the importance of addressing body inquiries in cultural, communicative, and socio-emotional terms, and in this sense seeks to contribute to and extend current investigations in applied sociolinguistics (Davis 2006; de Bot and Makoni 2006; Hamilton 1994; Ramanathan 1997; Sarangi and Roberts 1999). Specifically, the approach assumed here opens up ways to: – query discourses of bodies as they permeate particular segments in cultures and explore our modes of inquiry when investigating them; – query a‰nities among social and critical theories, approaches to interpretation and narrative and what they allow us to contest; – query how our ways of interpretation are themselves particular ensembles of cultural, local, discipline-specific discourses; – query about how interpreting alternate texts, including first person accounts, autobiographies, permit newer meanings of bodies. By making language the entry into this nexus of concerns, the various chapters show how it is through this medium that people with ailments or ‘‘unusual’’ bodies get positioned and slotted in certain ways. Calling attention to a host of discourses, the volume critically engages with a variety of body-related issues including those around chronic and terminal ailments, visual impairments, organ transplants, body performances, and invisible conditions, and draws on a variety of disciplinary perspectives, critical theories, ethnographically gathered materials, and extant data to make its points.

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1. Why do language, body, and health matter? ‘‘The body.’’ The term suggests a bounded and autonomous entity, universal but at the same time singular, atemporal, and therefore unmarked by history. (Cohen and Weiss 2003: 1)

The notion of an individual ‘‘body’’ as autonomous and separate from the mind was hailed as the natural condition of humans by many Enlightenment thinkers (Rousseau 1994 quoted. in Bergo¤en 2003) and in many ways has formed the basis for much of Western and American medicine, including an assumption of patients as individual entities, outside of larger cultural and social contexts. Further, as Armstrong (1994) states, this conception of a discrete body has been extended to a view of other aspects of the body: ‘‘A body analyzed for humors contains humors; a body analyzed for organs and tissues is constituted by organs and tissues; a body analyzed for psychosocial functioning is a psychosocial object’’ (p. 25). At the same time, much work by social constructionist and postmodernist thinkers and writers has argued that the body is not ‘‘outside of or opposed to discourse, but is itself discursively constructed’’ (Weiss 2003: 25). This treatment of the body as a ‘‘text’’ in itself has become quite familiar in numerous disciplines to the point that calls have been made to bring the body back (Williams 1999; Ramanathan 2010) due to the rendering of the body as essentially incorporeal and nothing more than systems of signification. Ramanathan and Makoni (2007) recognize the potential that this ‘‘bring back’’ may overemphasize the potential of self-actors but argue that thinking about the lived body forces a recognition of the constraints as well as the possibilities of interpretation. Similarly, many of the chapters in this volume interrogate the alternative spaces of meaningmaking that exist between overly-individualistic bio-medical discourses and human-less post-modernist theories on the body. How we talk about bodies and health is not just an academic and linguistic concern, but one that often dominates societal debates and public policy. Even a cursory review of recent societal and political debates in the United States, for example, reveals deep tensions over how we define ‘‘normal’’ bodies and who has the right to speak for ‘‘disabled’’ and ‘‘ailing’’ bodies. For example, recent health care debates in the U.S. were framed by claims of ‘‘death panels’’ and a loss of control over making decisions about our own, individual bodies. While the intention of the following chapters is not to react or analyze any particular media or political topic related to health and bodies (in fact our concern is

Language, body, and health: An introduction

3

initially in stepping back from specific debates), in di¤erent ways, the chapters draw from the metaphors, the sedimented discourses, the complicating narratives and the multiple contexts in which we live, work, and think about our bodies. Thus, by stepping back to examine the languaging of bodies and our notions of ‘‘normalcy,’’ health, caregiving, and proper functioning, the book argues that we can first move away from the immediate concerns of public policy so as to build a more nuanced approach to thinking about bodies. Of course the goal of such a step-back is theoretical but, at times, we can also speak back to dominant discourses and inequality and hopefully – as in the case of some of the more policy-driven chapters – guide the creation of better health and medical practices.

2. 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 ‘‘normalcy’’ is constructed to create the ‘‘problem’’ of the disabled person (2006: 3). The cluster of words – ‘‘normal,’’ ‘‘normalcy,’’ ‘‘abnormal,’’ ‘‘deviant,’’ ‘‘able,’’ ‘‘able-ism,’’ ‘‘disabled,’’ ‘‘disability’’ – emerged in the English language at a particular time, with the modern uses of ‘‘normality’’ and ‘‘normalcy’’ appearing in the mid 1800s, getting sedimented in all kinds of domains and acquiring legitimacy through the discourses of scientific rationalism. In relation to human bodies, the notion of a ‘‘norm’’ emerges in a host of expectations, including having 10 fingers and 10 toes, to women having two breasts, and to having all of one’s limbs and faculties. Needless to say, these expectations that comprise the ‘‘norm’’ are held in place by a whole range of body/health-related policies – including formal ones around health insurance that dictate who can and cannot be ‘‘covered,’’ and those around funding for disabled access such as providing for wheelchair ramps, as well as a host of informal attitudes and assumptions about ‘‘normally’’ functioning bodies that emanate from policies being held in place. And these do not just extend to physically apparent disabilities, but to more invisible conditions as well, such as those relating to memory loss (as in the case of Alzheimer’s disease) or ‘‘inappropriate’’ social behavior (as is often the case in autism). Policy issues around disability are predicated on issues of equality and di¤erence, and it seems important to bring these into a discussion of body experiences as well (this book does not address health policies per se,

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although it has implications for it; for a fuller discussion, see the special issue of Language Policy devoted to health-related concerns; Ramanathan 2010). As Pothier and Devlin (2006) point out, a goal of critical disability theory is not to theorize disability to where its relevance to the larger world of engagement is lost, but to address issues of empowerment, of making room for alternate views about bodies, about countering dominant tropes from the medical worlds, and about creating contexts of equality. A key point here isn’t 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 and Slembrouck 2006; Slembrouck 2005). The point here is to move the discussion away from orientations of personal bad luck, which encourage pity and charity, to Foucauldian spaces that induct issues of equality and social justice. Respecting, then, both the need to create textual spaces for alternate conceptualizations of bodies while also questioning our modes of inquiry regarding bodies and body conditions, the volume captures both the telling of localized ‘‘dis-citizenship’’ (circumstances where people have felt disenfranchised), while also probing issues of our text- and meaning-making practices. It seems crucial now to move body-related scholarship in applied linguistics and sociolinguistics to more prominent spaces while also openly and self-consciously addressing the language by which we researchers write of such issues. 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 endeavours become transparent simultaneously.

3. Bodies and community concerns Issues of dis-citizenship, exclusion, and feeling alienated because of one’s bodily condition 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

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population (in the sense that 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’’ isn’t defined pejoratively – indeed, ‘‘disability’’ is understood in relation to ‘‘normal’’ – it is a term whose associations we desperately need to rend 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 personal characteristics are understood as ‘‘impairments’’ and as a result, people get labeled as not having ‘‘normal’’ bodies/abilities.1 Often beginning with a medical diagnosis that serves the function of social categorizing, the o‰cial 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 1990). 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 (1986: 194).

1. See Ramanathan (2009) for a fuller discussion.

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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 and Ripich 2005). The role that health insurance policies play in such a scenario (see 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 in and contesting the medical world (a point that comes through with first-person accounts). As the various chapters point out, personal accounts of contesting societal and medical tropes allows us to zoom in on experiences that would otherwise remain mute. 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-a`-vis the world) becomes more ‘‘visible.’’ As Teresa de Lauretis points out (1982), 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 e¤ect 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 (1982: 159).

So how, then, might critical body-related research in applied sociolinguistics 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 both to acknowledge societally inflicted wounds (resulting from our collective notions of ‘‘normalcy’’) while also not losing

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sight of the local exigencies around individual voices? It is this interstitial space that the various readings in this volume occupy. To summarize, while the volume has body accounts and experiences at its core, it openly acknowledges that these experiences need constant debate and interrogation. Because experiences of, with, and around bodies happen in particular social, historical, and political contexts, there is no external vantage point from which to judge them. Indeed experiences around bodies and ailments in medical settings assume particular hues because of power and social control that institutions exert, as do experiences with societal pressures around ethnicity and sexuality. Also our body-related experiences, while located in bodies, are actually somewhere between minds and bodies, and much of our understanding about experiences around bodies (or other issues for that matter) emerge out of what we identify as ‘‘discernable’’ and ‘‘locatable.’’ This attention to what is ‘‘apparent’’ through language hinges on a very particular discourse of ‘‘visibility,’’ one that assigns a literal orientation to language. Proceeding from the assumption that ‘‘visibility’’ is not a chunk of absolutely hard, indivisible being, 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 concerns, casts floodlights 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. These views have, thus far, not been articulated in these ways in sociolinguistics or other language-related domains.

4. Layout of the book In order to address the key themes and arguments summarized above, our book is structured around the following themes: 1) Bodies and body-parts; 2) Bodies and cognitive ‘‘impairments’’; 3) Bodies and chronic ailments; 4) Bodies and body performances. The first section of the book has essays dealing with ‘‘abnormal’’ or ‘‘malfunctioning’’ body-parts, some of which are visible and others of which are not. First, David Bolt (chapter 2) considers a selection of concepts, models, and critical approaches that, for the past three or four decades, have informed various debates about the language of impairment and disability. Specifically, the chapter challenges terms such as blindness and the blind, and considers the e¤ect of a radical

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social model of disability – i.e. prioritizing a reduction in social prejudice over a search for medical cures – on current trends in the disability movement. Moving away from the more theoretical discussion in the first two chapters, Paul McPherron (chapter 3) situates medical, societal, and academic discourses on bodies and body breakdowns in relation to organ donation surgeries, specifically living-donor liver surgeries. The chapter is both a discourse analysis of interviews and journals with organ donors and caregivers as well as a personal dialogue between the author (a living donor), the author’s father (a liver recipient), and the author’s mother (a primary caregiver during the living-donor surgery). Finally, Vaidehi Ramanathan (chapter 4) takes as a point of entry two cases relating to autism and partial hearing. She analyzes the intents/intentions that parents of children with these ‘‘ailments’’ articulate regarding communication with and for their children. She argues that parents of these children that have to base their child-rearing and socialization on their readings of what the ‘‘normal’’ world intends. The second section of the book has readings on conditions such as autism and Alzheimer’s disease, conditions where actual language use in social contexts is typically addressed in mentalist/cognitive terms. Boyd Davis (chapter 5) analyzes ‘‘snapshots’’ (cf. Hamilton 2008) of conversation of two persons with di¤ering amounts of impairment from Alzheimer’s disease. The chapter illustrates the construction and persistence of self in these narrative fragments and larger stories, and documents the speakers’ persistence in retaining time, place, and parts of themselves in the face of disrupted cognition. It argues that it may well be that ‘‘stories simultaneously reflect and activate a disposition to adopt the intentional stance’’ (Herman 2008: 257). Also focusing on social interaction and cognitive impairments, Olga Solomon (chapter 6) examines video-recorded quotidian social interactions involving sixteen high-functioning and sixteen severely a¤ected children with autism at home and at school. This chapter o¤ers an alternative view of ‘‘body in autism’’ to provide an understanding of socio-interactional consequences of this condition for the a¤ected persons’ participation in everyday life. In addition to analyzing how a body in autism is implicated in social interaction, Solomon argues for more ethnographically informed scholarship on autism in applied linguistics and linguistic anthropology. The third section has essays on long-term conditions such as diabetes, fibromyalgia, and arthritis. Hanako Okada (chapter 7) focuses on the narratives of embodied experiences of two women with ‘‘invisible’’ chronic ailments – one with fibromyalgia and chronic fatigue syndrome, and

Language, body, and health: An introduction

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another with rheumatoid arthritis. Due to such invisibility of their ailments, situating and negotiating their bodily experiences become particularly challenging, yet simultaneously crucially important. The invisibility also places an obstacle for them to communicate their conditions to others, and for others to understand their experiences. The chapter analyzes how the two women perceive, come to (or fail to) negotiate, and communicate their lives with the impact of embodied experiences. Alternatively, in the following chapter, Davies, Knol and Turner (chapter 8) examine the language of the ‘‘success stories’’ of participants in a project designed to create peer narratives that could be used as part of a treatment regime for diabetes self-management. The authors argue that the personal experience stories serve to both ‘‘discipline’’ the body and body breakdowns, but also ‘‘frame’’ the diabetic condition in ways that allow patients to cope successfully (i.e., conceptualize the illness as manageable rather than as hopeless). This final section of our book has essays on ways in which societal and cultural forces shape body enactments and performances. In the initial chapter, Sinfree Makoni and Busi Makoni (chapter 9) examine issues about family planning and child reproduction through divergent perceptions about the female body in colonial and post-colonial Africa. The chapter argues that these di¤erences have caused considerable conflict and generated tension – between the old and the young, wives and husbands, daughters-in-law and mothers-in-law – because they are situated at the intersection of a number of powerful forces and trends which are di‰cult to reconcile. Specifically, the chapter analyzes the role of language in the discourses of contraceptives and the semiotics of film in female health and child reproduction. Also focusing on local processes of sense-making and employing a constructionist framework, Matt Prior (chapter 10) examines how a former refugee from Vietnam living in the United States draws on discourses of the body as both topic and resource to construct a coherent, believable, and rational self. Specific attention is given to his ongoing struggle with ethnicity (Vietnamese, Chinese, Asian), masculinity, and same-sex orientation and his discursive work to resolve conflict by invoking blood ties, for example, to construct legitimate belonging as ‘‘Chinese.’’ Findings demonstrate that the body, a potential source of conflict, also a¤ords ‘‘identity anchors’’ by which speakers create order and meaning out of fragmentation and displacement. In the final data chapter of the book, Fei Shi (chapter 11) departs from the primarily spoken and written text focus of the previous chapters to focus on the performance genre of body art in China. He analyzes the ways in which performances are being

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talked about, written, documented, and critiqued, and he connects issues of sight, space, body, and language to his idea of somatic writing as an alternative embodied practice to capture the evasive, the illicit, and the erotic in these performances. The book concludes with a chapter written by Tim McNamara in which he consolidates themes and issues addressed throughout the book and further points toward new research directions. The chapter comments on the diversity of contexts and approaches presented in the book, pointing out how language issues and bodies cross disciplinary lines and reinforcing the key argument of the book: the need to make issues of bodies and language as central as race, ethnicity, and gender.

References Armstrong, D. 1994

Bodies of knowledge/knowledge of bodies. In C. Jones and R. Porter (eds.), Reassessing Foucault: Power, medicine and the body, 17–27. London: Routledge. De Bot, K. and S. Makoni 2006 Language and aging in multilingual contexts. Clevedon: Multilingual Matters. De Lauretis, T. 1982 Alice doesn’t: Feminism, semiotics, cinema. Bloomington: Indiana University Press. Davis, B. (ed.) 2005 Alzheimer talk, text, and context. London & New York: Palgrave. Davis, L. 1995 Enforcing normalcy: Disability, deafness, and the body. New York: Verso. Davis, L. (ed.) 2006 The disability reader. New York: Routledge. Englehardt, T. 1986 The foundations of bioethics. Oxford: Oxford University Press. Hamilton, H. 1994 Conversations with an Alzheimer’s patient. Cambridge: Cambridge University Press. Herman, D. 2008 Narrative theory and the intentional stance. Partial Answers 6. 233–260. Jones, C. and R. Porter (eds.) 1994 Reassessing Foucault: Power, medicine and the body. London: Routledge.

Language, body, and health: An introduction Navarro, V. 2005

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Why some countries have national health insurance, others have national health services, and United States has neither. In G. Scambler (ed.), Medical sociology: Healthcare and social change, Vol. iv, 1–23. London: Routledge. Pope, C. and D. Ripich 2005 Speak to me, listen to me: ethnic and gender variations in talk and potential consequences in interactions for people with Alzheimer’s disease. In B. Davis (ed.), Alzheimer talk: text and context, 37–59. London & New York: Palgrave. Ramanathan,V. 1997 Alzheimer discourse: Some sociolinguistic dimensions. Mahwah, NJ: Lawrence Erlbaum Associates. Ramanathan, V. and S. Makoni 2007 Bringing the body back in body narratives: the mis-languaging of bodies in bio-medical, societal, and post-structuralist discourses on diabetes and epilepsy. Critical Inquiry in Language Studies 4(4). 283–306. Ramanathan, V. 2009 Bodies and language: health, ailments, disabilities. Clevedon: Multilingual Matters. Ramanathan, V. (ed.) 2010 Language policy, special issue: Focus on health 9(1). 1–96. Sarangi, S. and C. Roberts 1999 Talk, work, and the institutional order: Discourse in medical, mediation, and management settings. Berlin & New York: Mouton de Gruyter. Scambler, G. (ed.) 2005 Medical sociology: Healthcare and social change, Vol. iv. London: Routledge.

Part I.

Bodies and communication

Chapter 2 Community, controversy, and compromise: The language of visual impairment David Bolt 1. Introduction This chapter considers a selection of concepts, models, and critical approaches that, for the past three or four decades, have informed various debates within the disability community about terminological typology. To begin with, consideration is given to dominant terms like blindness and the blind, the usage of which went largely unchallenged until the 1960s, but is, I argue, fundamentally troublesome. Attention is then paid to some of the critical responses that have been documented since the disability movement gained momentum in the 1970s. Of particular interest is the radical social model of disability, which challenges the idea that disability is an ‘‘inescapable biological destiny’’ (Barnes and Mercer 2003: 12), drawing a critical line between biological impairment and social disability. Finally, I consider the way in which many academics and activists have, ironically, strengthened the disability community by problematizing the radical social model that has been so empowering for so long, moving toward a diverse cultural model in which the use of language plays a no less important part. Indeed, the key point here is that attitudes are not only reflected but also shaped by the terms we choose and the language we use.

2. Ableist traditions When considering the terminological typology of visual impairment, a concept with which we should be familiar is ocularcentrism. The term denotes a perspective – and, by extension, a subject position – that is dominated by vision, as has been vividly illustrated with reference to language and metaphor:

16

David Bolt Even a rapid glance at the language we commonly use will demonstrate the ubiquity of visual metaphors. If we actively focus our attention on them, vigilantly keeping an eye out for those deeply embedded as well as those on the surface, we can gain an illuminating insight into the complex mirroring of perception and language. Depending, of course, on one’s outlook or point of view, the prevalence of such metaphors will be accounted an obstacle or an aid to our knowledge of reality. It is, however, no idle speculation or figment of imagination to claim that if blinded to their importance, we will damage our ability to inspect the world outside and introspect the world within. And our prospects for escaping their thrall, if indeed that is even a foreseeable goal, will be greatly dimmed. In lieu of an exhaustive survey of such metaphors, whose scope is far too broad to allow an easy synopsis, this opening paragraph should suggest how ineluctable the modality of the visual actually is, at least in our linguistic practice. (Jay 1994: 1)

The paragraph is steeped in explicitly and implicitly visual terms and phrases, unashamedly playful language that informs and is informed by the central figure. This metaphor uses sight as a vehicle, while the tenor of its meaning pertains to knowledge. The result is a positive perpetuation of ocularcentrism because the use of visual terms to make epistemological points invokes the notion that seeing is synonymous with knowing. But a negative perpetuation of ocularcentrism is demonstrable, too, most obviously in the word blinded, the meaning of which pertains to epistemological diminishment. In ‘‘common usage today,’’ the word blind ‘‘connotes a lack of understanding or discernment, a wilful disregard or obliviousness, a thing meant to conceal or deceive,’’ being ‘‘far more commonly used in its figurative than its literal sense’’ (Kleege 1999: 21). The trouble is that the figurative has some bearing on the literal sense because common metaphors such as ‘‘turn a blind eye,’’ to use the example provided by Barnes and Mercer, reinforce an ‘‘impression of incapacity and abnormality’’ (2003: 17). These metaphors also form a basis for the antithetical impression – namely, the capacity and normality of sight. The word and variants of the word blind e¤ectively ground the ubiquitous seeing–knowing metaphor. To this end, blindness is used as a vehicle, the tenor of the meaning being the lack of knowledge. That is to say, the ocularcentrism of the seeing–knowing metaphor is profound because embedded in its foundation is the idea that not seeing is synonymous with not knowing. The word blind is problematical because it denotes much that bears no intrinsic relation to visual impairment, as is evident in the Encarta World English Dictionary (1999), hereafter referred to as the EWED, which contains no less than thirteen entries for the adjectival form. Importantly, just one definition pertains to people who have visual impairments.

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Another evokes the ancient myth in which the angered Samson shakes to the ground an inhabited temple, defining blind rage and blind fear as so extreme and uncontrollable as to make somebody behave irrationally. Similarly, though botanical in its usage, another definition refers to a plant’s lack of a growing point that may be said to resonate with the myth in which Oedipus symbolically cuts o¤ his generative power by gouging out his eyes. Informing and informed by the foundation of the seeing–knowing metaphor (the idea that not seeing is synonymous with not knowing), the ten remaining definitions are all ocularcentric but can be divided into the categories of ignorance and concealment. In the first category, a person is rendered blind to the consequence of her or his actions if unwilling or unable to understand something; to be in a blind stupor is to be lacking awareness; blind prejudice is an attitude that is not based on fact and is usually total and unquestioning; a blind taste test is done without looking; and a blind presentation is done without preparation or the relevant information. In the second category, which pertains to concealment, a blind corner does not give a clear view and is possibly dangerous; a blind stitch is hidden from sight on the underside of a fabric; a blind wall is without doors or windows; a blind experiment is one in which information is withheld in order to obtain an unprejudiced result; and a blind tunnel is closed o¤ at one end. In brief, the dictionary o¤ers thirteen definitions for the adjective blind, but twelve are negative and only one pertains to visual impairment. The same problematical pattern occurs elsewhere in the EWED. A list of synonyms for the adjective blind includes ‘in the dark,’ ‘benighted,’ ‘insensible,’ ‘screened,’ ‘inattentive,’ ‘indiscriminating,’ ‘misjudging,’ ‘biased,’ ‘ignorant,’ ‘unwise,’ ‘involuntary,’ ‘obstinate,’ ‘impassive,’ ‘unastonished,’ and ‘dead drunk’. Three definitions are provided for the adverb: 1. without prior examination or preparation: without previously thinking about or preparing for something – You shouldn’t buy livestock blind. 2. air transport using instruments: using information from aircraft instruments, without being able to see 3. totally: totally or utterly (informal ) – robbed his clients blind The obvious problem is that all three of these definitions are negative, while not one refers to visual impairment. The reference to doing something ‘‘without previously thinking’’ or ‘‘preparing’’ is problematical, too, because as well as chiming with the ocularcentric foundation of the seeing–knowing metaphor, it associates blindness with irrationality, an implication sustained by two of the four definitions of the verb:

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David Bolt

make permanently unable to see: to make somebody permanently unable to see make temporarily unable to see: to make somebody temporarily unable to see – blinded by the lights make unable to judge properly: to make somebody unable to judge or act rationally – blinded by rage confuse: to make it di‰cult for somebody to understand something – Stop trying to blind us with statistics.

In this instance one of the definitions refers to people who have visual impairments, but otherwise the meanings are again predominantly negative. The image that emerges from the combination of all seven definitions is one of someone who is unprepared, unable to judge or act rationally, someone who is confused. Add to this the adjectival definitions, not to mention the synonyms, and the result is undeniably complex, undeniably ocularcentric, undeniably focused on lack and thus pejorative toward people who have visual impairments.1 All in all, the EWED illustrates a point made in Enforcing normalcy, that the word blind contains ‘‘moral and ethical implications’’ (Davis 1995: 5). In this sense the word is resonant with the moral and religious models of disability, the implication being that blindness is a punishment for sin. The etymology, too, is problematic because, illustrating what has been referred to as the way in which the ‘‘anti-blind prejudices of society are built into our very language’’ (Kirtley 1975: 41), the EWED states that the word blind derives from an Indo-European expression of confusion and obscurity, which is also the ancestor of blunder. The ‘‘underlying idea’’ is of ‘‘someone wandering around in darkness,’’ an ocularcentric premise that

1. Though fairly representative, this sample of twenty dictionary definitions is by no means definitive. Kirtley has provided an extensive study of Webster’s Third New International Dictionary (1966), finding one hundred and fifty-five citations under the word blind and its grammatical variants, of which only fourteen percent pertain to impaired vision (38–41). The remaining nine categories are summarized as concealment, screening, deception; closed or closed at one end, passing only partially through, filled, empty, plugged up, blocked, covered; defective, abortive, diseased, incapacitated, stupefied, dead, sterile, worthless, poisonous, pestiferous; animals; lacking intensity, luster, coloring or gilding; ignorance, lacking mental vision, judgment or plausibility, carelessness; unintelligibility, indiscernibility, obscurity; purposeless, fortuitous; and profanity. In brief, the familiar pattern occurs, with only one category pertaining to visual impairment and the rest being largely pejorative.

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informs the thesaurus entry that o¤ers ‘‘in the dark, benighted’’ as yet another synonym for the adjective blind (EWED). While notions of blindness–darkness synonymy are irrefutably recurrent, no degree of visual impairment can place the bearer in a world of endless darkness. Granted, there has been the misguided complaint that few people ‘‘learn to think of normal persons without sight as merely men and women in the dark’’ (Langworthy 1930: 270), according to literary representations such as La Symphonie Pastorale, where the blind character, Gertrude, is said to reside in a ‘‘little universe of darkness’’ (Gide 1919: 25), but later twentieth-century studies are far more critical of the proposed synonymy (e.g., Monbeck 1973). After all, is it not only from the subject position of people with vision that darkness looks like blindness and vice versa? For people who have no experience of visual perception, darkness, by definition at least, is no more relevant than light. Even for people who have past experience of visual perception, subject to ‘‘a period of adjustment,’’ the ‘‘lack of sight is not comparable to darkness’’ (Kent 1990: par. 3). From a subject position that accommodates the whole spectrum of visual limitations, to accept the notion of darkness–blindness synonymy would be to do likewise with the bizarre notion that when someone without sight sunbathes in the blaze of noon, switches on a lamp, stands in the glare of headlights, a spotlight, flashlight, or whatever, they do so in complete darkness. The reality is that the light does not cease to exist, but simply remains unseen by a minority of people whose visual limitations are classed as impairments. Only in an ocularcentric culture does the lack of visual perception induce oblivion to the knowledge that at midday it will be light, at midnight, dark, times that may be determined via technology such as talking or tactile watches and clocks, not to mention radio, television, telephone, and so on. This ocularcentrism is considered again later in the chapter.

3. The need for terminological modification The National Federation of the Blind (NFB) assembled in Dallas, Texas, 9 July 1993 and adopted a statement of policy against the avoidance of ‘‘such straightforward, respectable words as blindness, blind, the blind, blind person, or blind persons; others (such as visually impaired, and visually limited ) being undesirable when used to avoid the word blind ’’ (Resolution 93-01 qtd. in Jernigan 1993). I have refuted this assertion of straightforwardness and respectability here, and elsewhere, with the amassing of

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pejorative denotations and connotations, but must acknowledge that while the word and variants of the word blind are typical of the dominant discourse, appropriation is indicative of a response. ‘‘Perversely championing the terms of their own stigmatization,’’ it has been remarked, ‘‘marginal peoples alarm the dominant culture with a canniness about their own subjugation’’ (Mitchell and Snyder 2003: 35). Indeed, the first wave of emancipation involves the ‘‘establishment of the identity against the societal definitions that were formed largely by oppression’’; the identity is ‘‘turned positive against the negative descriptions used by the oppressive regime’’ (Davis 2002: 10). Accordingly, although Kleege has acknowledged that the word blind causes many ‘‘problems,’’ that it ‘‘has always meant more than merely the inability to see,’’ bearing ‘‘a burden of negative connotations and dreaded associations,’’ she has also asserted, ‘‘Today I am likely to identify myself as blind’’ (1999: 14, 21, 19, 1). Along similar lines, Kuusisto has remembered that as a child he was ashamed of his disability, a sadness compounded by his mother’s militant rejection of the words blind and blindness: ‘‘I became a soldier of denial and lived in nervous self-absorption. The Americans with Disabilities Act was thirty years away in an unimaginable future. My job was to live in the open without words for my circumstances’’ (2006: viii).2 Notwithstanding the problematics of traditional terminology, then, the AFB, Kleege, and Kuusisto’s declarations of ownership clearly constitute a response to ableism from within the disability community. Contemporaneous with ‘‘The pitfalls of political correctness’’ (Jernigan 1993) and its endorsement of the NFB’s opposition to terminological modification, the short article ‘‘Political correctness, language and rights’’ reminded us that ‘‘discussions of language and disability’’ arise because ‘‘disabled people experience discrimination daily and are denied the same rights and opportunities as the rest of the population’’ (Barnes 1993: 8). Pointing out that in Nazi Germany oppressive terminology was used to justify the attempted genocide of disabled people, Barnes probes the perplexing right-wing notion that political correctness constitutes an argument against (rather than for) terminological modification. This perplexity is illustrated by the way in which the EWED defines the adjective politically correct as ‘‘deliberately ino¤ensive: marked by language or conduct 2. That Kuusisto came to find these words is demonstrable in the success of his prose and poetry, and that this discovery involved the appropriation of traditional terminology is manifest in the title of his award-winning autobiographical work, Planet of the blind.

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that deliberately avoids giving o¤ence,’’ yet it is frequently loaded with negative connotations – even within the disability community. See it my way, for example, claims that the ‘‘tortuous debate about correct terminology’’ is a blatant example of ‘‘the idea that the best way for disabled people to assert their independence is to make non-disabled people uncomfortable at every turn,’’ a process that adds ‘‘absolutely nothing to the sum of people’s understanding,’’ having only one aim – namely, ‘‘joyously to wrong-foot people who use the wrong words by changing them as rapidly and regularly as possible’’ (White 1999: 306). Indeed, Kleege uses the term visually challenged – listed in the EWED thesaurus as a synonym for the adjective blind – when ‘‘poking fun’’ at what she calls the ‘‘current mania to stick a verbal smiley face on any human condition that deviates from the perceived norm’’ (1999: 10). The trouble is that the charge of political correctness is made not only by persons who appropriate ableist terminology, but also by ‘‘those who want to retain the right to be freely abusive’’ (Valentine 2002: 219). Obviously, it would not be the intention of anyone within the disability community to use language that would cause o¤ence to people who have visual impairments, but a side e¤ect of appropriation is expropriation, as the newly-legitimated term returns to its original owners, resuming its original purpose. Before considering some of the alternatives that have been posited in response to ableist terminology, it is necessary to answer the charge that any change causes confusion. Most important at a personal level is the ‘‘speed and naturalness with which one can adapt one’s language to fit one’s developing thought,’’ but until a ‘‘form of words has been fully internalised, practised, corrected and recorrected, there will be hesitation and clumsy circumlocution’’ (Roaf 1992: 340). For this reason it has been argued that euphemisms and politically correct language can ‘‘obscure clear thinking and damage the very people and causes they claim to benefit’’ (Jernigan 1993), from which we are bound to infer that traditional terminology does not cause confusion. However, in practice the terminology of, for example, the British registration system has created the juxtapositions of a blind person who can and a partially sighted person who cannot read print, or a partially sighted person who requires and a blind person who does not require assistance with mobility. Such scenarios cause confusion because blindness is often perceived as ‘‘an either/or condition: one sees or does not see’’ (Kuusisto 1998: 5). In fact, only about ten percent of ‘‘legally blind’’ people have a ‘‘complete absence of any visual experience,’’ but most people think the word blind ‘‘should be reserved to designate this

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minority’’ (Kleege 1999: 14). That is not to say that no attitudinal progress has been documented: ‘‘I have used a white stick for 30 years and have noticed a change in people’s responses especially in recent times. It used to be the case that people assumed total blindness, but now the question ‘are you partial?’ is common. Similarly, if I am treated as a totally blind person and I say ‘I can see a bit’ this does not give rise to surprise’’ (French 1999: 24). But French has acknowledged that even in the late twentieth century people would have been confused if, having used a white cane to cross a busy road, she were to fold it up and read a book, and in our own century the fact that ‘‘the blind see anything at all’’ remains ‘‘often surprising to many people’’ (Kuusisto 2006: xii). It is evident that, wherever we position ourselves in the terminology debate, there can be no denying that the word blind causes confusion. Because my research has tended to focus on Anglophone representations, the examples I use are largely western, but the debate about new terminology is obviously global. In Japan, the original term mekura has been recognized as discriminatory and has given way to the alternative mo#jin, which is itself coming to be replaced by me na fujiyu# na kata and shikaku ni sho#gai no aru kata, equivalents of the English terms people with a visual handicap and people with a visual disability (Valentine 2002: 219). Similarly, the colloquial term inconvenience is used in Calcutta, India, to reduce the psychosocial burden of pejorative meanings that are attached to impairment and disability (Rao 2001). Far from anticipating this discursive social strategy, though, Kirtley has expressed doubt that terminological modification can appreciably mitigate negative attitudes: ‘‘New terminology is not likely to be e¤ective unless such attitudes have already improved, for without this change, the older, prejudicial meanings would simply become reattached to the liberalized vocabulary’’ (1975: 41). I have endorsed this point in various American, British, and Spanish periodicals,3 but continue to pose the same questions. How can attitudes improve through the use of ableist terminology to which prejudicial meanings are inherent? Though admittedly not a solution in itself, can we really claim that terminological modification is part of the problem?

3. Some of my work on terminology has been published in British Journal of Visual Impairment, Disability and Society, Entre dos mundos: Revista de traduccio´n sobre discapacidad visual, and Journal of Visual Impairment and Blindness.

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4. Alternative terms Based on the word ‘sight,’ the most obvious of alternative terms are ‘‘the unsighted’’ and ‘‘the sightless.’’ The first problem with these terms is their application of the definite article, which denotes the perplexing idea of a homogeneous group, such as the one conjured up in Blinding Light when the narrator refers to the protagonist by saying, ‘‘People pushing canes and shu¿ing behind him, wearing eye-patches and dark glasses, circulated in the hospital lobby, looking just like Steadman’’ (Theroux 2005: 185). But what I want to stress here is that, although less loaded with extraneous meanings than the blind, as umbrella terms the unsighted and the sightless are manifestly erroneous. The term unsighted implies congenital sight loss, which is relatively rare and not a necessary condition of blindness in any sense of the word (legal or otherwise). The term sightless denotes the absence of sight, yet as Kleege, Kuusisto, and French have illustrated, this is another unnecessary condition of blindness. Even the eighteen percent of ‘‘registrably blind’’ persons who, according to Blind and partially sighted adults in Britain, have nothing more than light perception (Bruce et al. 1991: 6) are not sightless. To so consider themselves, strictly speaking, these persons would be internalizing the dominant discourse, illustrating the traditional ableist attitude, as would someone who has adventitious sightlessness but considered her/himself unsighted. Though now deemed o¤ensive, and so defined in the EWED, the term visual handicap has been posited as the least contemptuous alternative to blindness (Van Weelden 1967). Derived not from the stereotype of the cap-in-hand blind beggar, as is sometimes thought, but from a mid seventeenth-century hand in cap betting game, the sporting implication of the term is literally that superior competitors are allocated a visual impairment in order that they become equal to their inferior counterparts. This evocation of compensatory powers is problematical due to its ascription of alterity, but a late sense ‘‘switched from the idea of a superior competitor being weighed down to a newer sense of an inferior unduly burdened with a disability’’ (Davis 1995: xiii). Accordingly, when the World Health Organisation commissioned Philip Wood to classify handicap – alongside disability and impairment – it was defined as a ‘‘disadvantage for a given individual, resulting from an impairment or disability,’’ that limited or prevented the fulfilment of a role that was ‘‘normal (depending on age, sex, and social and cultural factors) for that individual’’ (WHO 1980: 27–29). This definition is problematical on various counts, one of which pertains to the underpinning binary logic, the way in which the implicit

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representation of abnormality grounds the meaning of the word normal. Normality obviously varies from person to person but, according to Wood’s definition, does not involve disadvantage, impairment, disability, limitations, and so on. Is it really possible for anyone’s normality to be so defined? Published in the Journal of Visual Impairment and Blindness, some of my own responses to ableist terminology are based on the transitive verb inhibit, which, as the EWED points out, is from the past participle stem of the Latin inhibere ‘to hinder.’ The term persons with a visual inhibition is suggested in ‘‘Blindness and the Problems of Terminology’’ (Bolt 2003), while the terms visually inhibited individuals and persons with inhibited vision are discussed in ‘‘The terminology debate continues’’ (Bolt 2004a). While I would be the first to admit that the suggested terminology is wholly inadequate, these articles nonetheless achieved their primary aim of stimulating debate, as was manifest when the latter imparted both Mary Wilkinson’s contention that the alternative terminology would be too unwieldy and Lennard Davis’s observation about the connotations of awkwardness attached to the word inhibit. The superintendent of the California School for the Blind entered the debate through a letter to the JVIB editor, writing that ‘‘the blind’’ should ‘‘lead the terminology decision making’’ (Wittenstein 2004: 133), an assertion that was obviously well meant but problematical in so far as it implied and depended on homogeneousness. Notions of homogeneousness are a problem because they predicate sweeping statements such as ‘‘the blind sing from the soul’’ (Kipling 1904: 251) or ‘‘the days of the blind, strictly speaking are never likely to be good’’ (Saramago 1995: 210). Though I may be responsible for initiating this particular discussion, the final, and by far the most significant contribution was ‘‘The debate within,’’ which provided a Bakhtinian analysis of terminological typology that sited authority in an intertextuality of authorities, rather than in any one person or organization (Lunsford 2006). Given the germane point that conflict does not dissolve the notion of community, Lunsford’s study is revisited later in the chapter. Another of my tentative contributions to the debate, ‘‘Terminology and the psychosocial burden of blindness’’ (Bolt, 2004b) followed the example of various disability scholars in America, taking the term people with disabilities to the more specific level of persons with visual disabilities. The proposition of the article is that with no ascription of homogeneity or other such inaccuracies, this term may be applied to the group of persons who are, after all, of no particular class, gender, ethnicity, sexuality, age,

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persons with and without multiple disabilities, persons who, with varying degrees of severity, have numerous congenital and adventitious eye conditions. There is a drawback, however, according to proponents of the British social model of disability, because the preposition with implies that people carry, or are accompanied by disabilities, meaning that environmental factors are intrinsically ignored. While a solution to this terminological problem can be found in French’s ‘‘The wind gets in my way,’’ in so far as the author refers to herself not as a person with a visual disability but a visually disabled person, it must be acknowledged that the word and variants of the word disability are products of ableist ideology, that, as has been pointed out, even when seized on in an endeavor to control their usage, they still serve ‘‘at least two masters’’ (Davis 1995: xv). This dichotomy is demonstrable when the EWED states that the adjective disabled is ‘‘used to describe somebody with a condition that makes it di‰cult to perform some or all the basic tasks of daily life,’’ defining the noun disability as a ‘‘medically diagnosed condition that makes it di‰cult to engage in the activities of daily life,’’ the erroneous implication being that at the time of the dictionary’s publication, in 1999, the medical model was universally accepted. In fact, within the disability community, social models had been endorsed for decades.4

5. The radical social model and debate within the disability community Before considering the radical social model in more detail, it is worth reminding ourselves of the problems with previous approaches. The individual and medical models, as is acknowledged in Disability/Postmodernity, perceive and classify disability in terms of a metanarrative of deviance, lack, and tragedy, assuming it to be ‘‘logically separate from and inferior to ‘normalcy’’’ (Corker and Shakespeare 2002: 2). This reification of normalcy and emphasis on lack are evident in Wood’s International classification of impairments, disabilities and handicaps, which defines impairment as ‘‘any loss or abnormality of psychological, physiological or anatomical 4. Indeed, by the start of the twenty-first century the WHO’s own scheme had been revised in the form of the International Classification of Functioning and Disability (2001), recognizing environmental factors and shifting the emphasis from negative descriptions of impairment, disability, and handicap to more neutral descriptions of body functions, body structures, activities, and participation (ICIDH-2).

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structure or function,’’ and disability as ‘‘any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being’’ (WHO 1980: 27–29). The trouble is that in these terms progress would necessarily involve rehabilitation if not cure, an assumption that does not recognize or even accommodate the achievements of people who have impairments. These achievements had little purchase with the charity and medical models of the past, whereby ‘‘people with disabilities were seen variously as poor, destitute creatures in need of the help of the church or as helpless victims of disease in need of the correction o¤ered by modern medical procedures’’ (Davis 2002: 12). Indeed, the ‘‘value’’ of the ‘‘healing professions’’ has been ‘‘largely secured by their willingness to attend to populations seen as inherently lacking and unproductive within the social circuit’’ (Mitchell and Snyder 2003: 1). In a nutshell, there was a culture of ableism from which the disability community had to rise, a dominant discourse that fostered the retort that a medical solution was being sought for a social problem. The medicalization of disability was frequently challenged by the disability community in the second half of the twentieth century. In the Proceedings of the First World Congress (1982), for example, the Disabled People’s International (DPI) redefines impairment as the ‘‘limitation within the individual caused by physical, mental or sensory impairment’’ and disability as ‘‘the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers.’’ This definition is an improvement on its precursors in so far as it recognizes the potential for progress in the removal of social barriers, rather than in rehabilitation and cure. Indeed, the radical social model was developed in Britain by activists and academics such as the Union of the Physically Impaired Against Segregation (UPIAS) in the 1970s, Vic Finkelstein in the 1980s, and Mike Oliver and Colin Barnes in the 1990s. Comparable American models were emerging at the same time – namely, the civil rights model, which was based on the struggles of African Americans, holding that people with disabilities were ‘‘minority citizens deprived of their rights by a dominant ableist majority,’’ and ‘‘the social model, which saw disability as a constructed category, not one bred into the bone’’ (Davis 2002: 12) – but the more radical British model was perceived from outside the disability community as the most controversial. The terminological distinction of the radical social model is more fully explicated in, among other works, ‘‘Visual impairment and disability,’’ where Barnes has asserted, ‘‘In practical terms my impairment has caused

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me few real di‰culties – it causes me no pain and, hitherto, has and is likely to remain relatively stable. The problems I have encountered have all been socially created’’ (1996: 37). The idea is that we may use the term impairment with reference to the e¤ects of retinitis pigmentosa, retinal detachment, cataracts, diabetes, glaucoma, macular degeneration, tumors, injury to the optic nerve, and so on, but the word disabled denotes the consequence of living in an ocularcentric, ableist society. That is to say, people who have visual impairments become disabled as a result of society’s continual assumptions about visual acuity. It might be that important mail and other documentation is only provided in standard print, or that audio description is not available at events or with multimedia texts, or that websites cannot be navigated using keystrokes, or that job application forms cannot be completed electronically, or that guide dogs are not allowed into certain establishments or vehicles, or that pavements are blocked by parked cars or unkempt trees, and so on. Pertaining to employment, housing, transport, education, training, and leisure, the diverse list of examples goes on and on, the common factor being that in each instance the disability can be avoided through some kind of social reform. The radical social model has been an invaluable resource in the United Kingdom for decades, but following the work of Jenny Morris, Liz Crow, and Sally French, among others, conflict and yet more controversy within the disability community became increasingly apparent at the turn of the century. The main criticism that some disabled people made of the model concerned the disjunction between disability and the experience of impairment (Oliver 1996). While arguing that there is still a great deal of mileage to be gained from the social model, Oliver has illustrated the counter position with reference to French’s claim that visual impairment can impose social restrictions that are not resolved by the principles of the social model, such as the inability to recognize people and read or emit nonverbal cues in social interactions. Likewise, Shakespeare and Watson’s ‘‘The social model of disability’’ (2002) argued, on the grounds that people are disabled by their bodies as well as by social barriers, that the model has ‘‘outlived its usefulness,’’ that the time has come to ‘‘put the whole thing to one side and start again’’ (sec. 1). Indeed, according to Tremain, the strict division between the categories that the radical social model is ‘‘claimed to institute is in fact a chimera,’’ because advocates argue that while impairment is not su‰cient, it is a necessary condition of disability: ‘‘Proponents of the model do not argue that people who are excluded, or discriminated against on the basis of, for example, skin colour, are by virtue of that fact disabled, nor do they argue that racism is a form of

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disability’’ (2002: 42). More than being outdated, then, according to Tremain, the radical social model of disability is fundamentally flawed. The result of this debate is that endorsements of the radical social model are deemed controversial in some quarters, as are criticisms in others, a state of a¤airs that is sometimes considered damaging to the disability community but merely goes to demonstrate that notions of homogeneousness are purely mythical. There can be no denying that society is frequently disabling in relation to employment, housing, transport, education, training, leisure, and so on, the moot point being only that there are instances in which a person’s cognitive, sensory, and/or physical limitations are more significant. To venture an example, it is pointed out in ‘‘The wind gets in my way’’ that, for someone who has a visual impairment, going out is more di‰cult on a windy day because the wind makes a noise that obscures the small auditory cues that can be so very helpful (French 1996: 21).5 Postmodern theory recognizes the epistemological value of such experiential knowledge and values a multiplicity of ‘‘discontinuous and fragmentary’’ narratives (Macey 2001: 236). One concern is that the social model seeks to ‘‘explain’’ disability universally, creating totalizing narratives that exclude important dimensions of disabled people’s lives and knowledge (Corker and Shakespeare 2002: 14). Metanarratives ‘‘claim to have a universal status, and to be able to explain all other narratives. They therefore attempt to translate alternative accounts into their own language and to suppress all objections to what they themselves are saying’’ (Macey 2001: 167). For instance, in the controversial Disability rights and wrongs it is pointed out that although the term people with disabilities is generally used in an endeavor to promote social inclusion, expressing the common humanity that disabled people share (Shakespeare 2006: ch. 3), the extent to which an academic, organization, or policy uses the terminology of the social or medical models has become a litmus test of their value (Shakespeare 2006: ch. 2). In other words, although the radical social model has troubled the metanarrative of deviance, lack, and tragedy into which the previous, medical and individual models translated disability, a Postmodern concern is that the grand assertion that people are disabled only by society may be indicative of yet another metanarrative. It is evident that recent debate within the disability community has been informed by Postmodern theory, but this relationship is by no means 5. I cannot contend this point because I have a visual impairment myself and my mobility is similarly hindered on a windy day.

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parasitic. Considering the ‘‘range of impairments under the disability umbrella,’’ the ‘‘di¤erent ways in which they impact on individuals and groups over their lifetime,’’ the ‘‘intersection of disability with other axes of inequality,’’ and the challenge that ‘‘impairment issues to notions of embodiment,’’ Corker and Shakespeare have argued that disability is the ‘‘ultimate postmodern concept’’ (2002: 15). Disability, according to Davis, can be thought of as the ‘‘postmodern subject position’’ and ‘‘may turn out to be the identity that links other identities,’’ ultimately replacing postmodernism with what he calls ‘‘dismodernism’’ – a notion that ‘‘ushers in the concept that di¤erence is what all of us have in common,’’ that ‘‘identity is not fixed but malleable,’’ that ‘‘technology is not separate but part of the body,’’ and that ‘‘dependence, not individual independence, is the rule’’ (2002: 13–14, 26). This conception of disability as the identity that links other identities heralds a cultural, and, by extension, social model that addresses Tremain’s point about the strict division on which the radical model is based because, according to the assertion that ‘‘we are all disabled by injustice and oppression of various kinds’’ (Davis 2002: 31–32), biological impairment is not a necessary condition of social disability. The implication in this brief account may be that medical and individual models were displaced in favor of revolutionary social models, and that medical and individual models themselves displaced moral and religious models, yet these modes of thought are intertwined more often than juxtaposed (Devlieger 2005). This claim is indicative of the cultural model, as Devlieger has described it, recognizing existing modes of thought that confirm the complexity of disability as an existential, technical, and social phenomenon. As well as evoking dismodernism, not to mention the corpus of work that culminates in Locating disability (Snyder and Mitchell 2006), Devlieger’s approach chimes with the rejection of the radical social model in favor of an alternative that recognizes the predicament of bodily limitation and di¤erence without reducing disability to a medical problem (Shakespeare 2006).6 With the benefit of such work, along with this

6. These and other such approaches accord with my own experience of visual impairment, although I would not go so far as to reject the radical social model completely. I cannot echo Barnes and claim that the problems I encounter as someone who has a visual impairment are all socially created, but have to say that this is frequently if not generally the case.

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chapter’s opening discussion of ocularcentrism, we can return productively to French’s contention about the inability to recognize people and read or emit non-verbal cues. If unresolved by the principles of the social model, these restrictions may be appreciated in cultural terms. I say this because when the cultural assumptions of social interactions are rejected, we soon discover that the inability to recognize people arises from a lack in verbal rather than visual communication, the essence of the problem being that the dominant social convention is to acknowledge a person by speaking to her or him, but not to identify oneself nominally. The person who breaks this convention and o¤ers her or his name when greeting people who have visual impairments contributes to a culture of di¤erence and dependence, rejecting the privileging of visible identity in favor of a new social convention that is not, in these circumstances at least, disabling. The salient detail about the cultural model is that it points to an identity, community, and worldview that embraces disability (Devlieger 2005). This perspective reduces the significance of eye contact, a form of communication that is irrefutably valuable, but the privileging of which is a product of an ocularcentric culture perpetuated by language on many levels (from etymology to metaphor and beyond).

6. Conclusion and compromise The aim here has not been to dictate which terminology should be used by or about people who have visual impairments, but to provide some rationale for the choice of terminology that I have come to use in my own work on representation. Barnes, French, Jernigan, Kent, Kirtley, Kleege, Kuusisto, and White have already emerged as some of my mentors in the field, yet their approaches to terminological typology are diverse and frequently di¤er from my own. What is more, on the topic of terminology, there has been much debate within the disability community about the very need for a debate, for although Devlieger has asserted that the study of terminology, sentence use, and discursive language should take a more central role in disability studies, others have warned against becoming fixated with such matters (e.g., Shakespeare 2006: ch. 2). True, Lunsford’s Bakhtinian analysis accepts that authoritative discourse is fixed, that it demands acknowledgment and helps to solidify the ideologies of a community, but he concludes that if we cease debating about words and their meanings we lose the authority over them; they will continue to

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have authority over us. It is in this spirit that I admit to having no fixed solution to the problem, although the term people who have visual impairments is adopted as a compromise in my current work.7 In accordance with the ethos of the cultural model, this terminological compromise is informed by various approaches, the most obvious being the person-first strategy that the NFB considers not only controversial but ‘‘totally unacceptable and pernicious when used as a form of political correctness to imply that the word person must invariably precede the word blind to emphasize the fact that a blind person is first and foremost a person’’ (qtd. in Jernigan 1993). I must depart from the authoritative discourse of the NFB on this issue because person-first terminology does not emphasize, it reflects the fact that someone who has a visual impairment is primarily a person, it embodies Kleege’s point that if she were to list adjectives to describe herself, ‘‘blind would be only one of many, and not necessarily the first in significance’’ (1999: 4). I proceed, therefore, on the understanding that person-first terminology discursively acknowledges a simple, uncontroversial fact – namely, that the personhood of people who have visual impairments is on a par with that of people who do not have visual impairments. The shift away from the adjective and variants of the adjective blind has been explained comprehensively here, while the term visual impairment has emerged as a viable alternative. More specifically, the noun impairments is adopted for three reasons: first, because it alludes to the radical social model from which I remain reluctant to depart entirely; second, because it denotes plurality and thus reduces implications of homogeneousness; and, third, because it accommodates the continuum of visual limitation, being defined in the EWED as a ‘‘lessening or the absence of a particular physical or mental function.’’ This continuum from absent to lessened has proven significant because Kleege, Kuusisto, French, and Bruce et al. have all problematized the binary notion that people are either sighted or blind. Following Davis, Shakespeare and Watson, and others who have recognized the universal experience of the body’s limitations, my choice of terminology reflects the fact that because vision has inherent limita-

7. The term people who have visual impairments is preferable to the term people who are visually impaired, for although I have used the latter elsewhere it has problematic implications, as though the designated person becomes her or his impairment.

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tions, everybody is visually limited, nobody can see everything, meaning that a continuum exists between people who have high visual acuity and people who do not perceive by visual means. A legal distinction may be drawn somewhere between people who do and people who do not have visual impairments, but in practice it will always be problematized by eye conditions that are complex, temporary, variable, and so on. 7. Recommended readings (1) Melancon, M. 2009. ‘‘A river that no one can see’’: Body, text, and environment in the poetry of Stephen Kuusisto. Journal of Literary and Cultural Disability Studies 3(2). 183–94. Part of a special issue of JLCDS, guest edited by Georgina Kleege, this article examines the ways in which Kuusisto’s writing questions assumptions about language and embodiment. As well as providing an informed introduction to the rich body of work, Melancon argues that by establishing the discursive potential of the non-visual senses it represents a direct challenge to existing artistic and cultural discourse. (2) Rodas, J. 2009. On blindness. Journal of Literary and Cultural Disability Studies 3(2). 115–130. The stories that are supposed to represent people who have visual impairments tend to tell far more about culture than they do about the experience of visual impairment. Considering such phrases as blind rage, blind alley, blind justice, and the blind leading the blind, this article examines the place of the blind figure in sighted culture, focusing on the role of language in a way that would have certainly informed my chapter had I written it just a little more recently. (3) Vidali, A. 2010. Seeing what we know: Disability and theories of metaphor. Journal of Literary and Cultural Disability Studies 4(1), in press. This article considers the role of disability in popular theories of metaphor, concluding that they are ableist in their assumptions about the body. In response it is suggested that we engage the diversity of disability, refrain from policing metaphor, encourage transgression from the disability community, and invite creative and artistic reinterpretations of metaphor. This approach is grounded in a critique of the ubiquitous seeing–knowing metaphor that is far more extensive than that provided in my own chapter and thus well worth reading.

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References Barnes, C. 1993 Barnes, C. 1996

Political Correctness, language and rights. Rights Not Charity (Winter), p. 8.

Visual impairment and disability. In G. Hales (ed.), Beyond disability: Towards an enabling society, 36–44. London: Sage. Barnes, C. and G. Mercer (eds.) 1996 Exploring the divide. Leeds: Disability Press. Barnes, C. and G. Mercer 2003 Disability. Cambridge: Polity Press. Bolt, D. 2003 Blindness and the problems of terminology. Journal of Visual Impairment and Blindness 97(9). 519–520. Bolt, D. 2004a The terminology debate continues. Journal of Visual Impairment and Blindness 98(3). 133–134. Bolt, D. 2004b Terminology and the psychosocial burden of blindness. British Journal of Visual Impairment 22(2). 52–54. Bolt, D. 2005 From blindness to visual impairment: Terminological typology and the social model of disability. Disability and Society 20(5). 539–552. Booth, T., W. Swann, M. Masterton and P. Potts (eds.) 1992 Curricula for diversity in education. London & New York: Routledge. Bruce, I., A. McKennell and E. Walker 1991 Blind and partially sighted adults in Britain: The RNIB survey. London: HMSO. Corker, M. and S. French (eds.) 1999 Disability discourse. Buckingham & Philadelphia: Open University Press. Corker, M. and T. Shakespeare (eds.) 2002 Disability/postmodernity: Embodying disability theory. London & New York: Continuum. Davis, L. 1995 Enforcing normalcy: disability, deafness, and the body. London & New York: Verso. Davis, L. 2002 Bending over backwards: Disability, dismodernism and other di‰cult positions. New York & London: New York University Press.

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Devlieger, P. 2005

Generating a cultural model of disability. 19th Congress of the European Federation of Associations of Teachers of the Deaf. 14–16 Oct. Disabled People’s International 1982 Proceedings of the First World Congress. Singapore: Disabled People’s International. Encarta world English dictionary 1999 Microsoft Corporation. Bloomsbury Publishing. French, S. 1999 The wind gets in my way. In M. Corker and S. French (eds.), Disability discourse, 21–27. Buckingham & Philadelphia: Open University Press. Gide, A. 1963 La Symphonie Pastorale. (Dorothy Bussy, Trans.). London: Penguin. (Original work published 1919) Hales, G. (ed.) 1996 Beyond disability: Towards an enabling society. London: Sage. ICIDH-2. 2001 International Classification of Functioning and Disability. Retrieved December 3, 2004, from http://www.who.int/icidh. Jay, M. 1994 Downcast eyes: The denigration of vision in twentieth-century French thought. Berkeley, Los Angeles & London: California University Press. Jernigan, K. 1993 The pitfalls of political correctness: Euphemisms excoriated. The National Federation of the Blind. Retrieved September 13, 2007, from http://www.nfb.org/Images/nfb/Publications/books/books1/ kj37.htm. Kent, D. 1990 Shackled imagination: Literary illusions about blindness. The Braille Monitor 33(1). Retrieved October 28, 2007, from http:// www.nfb.org Kipling, R. 1904/1987 They. In C. Raine (compiled), A choice of Kipling’s prose, 239– 257. London: Faber & Faber. Kirtley, D. 1975 The psychology of blindness. Chicago: Nelson-Hall. Kleege, G. 1999 Sight unseen New Haven & London: Yale University Press. Kuusisto, S. 1998 Planet of the blind. New York: Dial Press. Kuusisto, S. 1999 Eavesdropping: A life by ear. New York: W.W. Norton.

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Langworthy, J. 1930 Blindness in fiction: A study of the attitude of authors toward their blind characters. Journal of Applied Psychology 14(282). 269–284. Lunsford, S. 2006 The debate within: Authority and the discourse of blindness. Journal of Visual Impairment and Blindness 100(1). Macey, D. 2001 The Penguin dictionary of critical theory. London: Penguin. Mitchell, D. and S. Snyder 2003 Narrative prosthesis: Disability and the dependencies of discourse. Ann Arbor: University of Michigan Press. Monbeck, M. 1973 The meaning of blindness: Attitudes toward blindness and blind people. London, IN: Indiana University Press. Oliver, M. 1996 Defining impairment and disability: Issues at stake. In C. Barnes and G. Mercer (eds.), Exploring the divide, 29–54. Leeds: Disability Press. Rao, S. 2001 ‘‘A little inconvenience’’: Perspectives of Bengali families of children with disabilities on labelling and inclusion. Disability and Society 16(4). 531–548. Roaf, C. 1992 Le mot juste: Learning the language of equality. In T. Booth, W. Swann, M. Masterton and P. Potts (eds.), Curricula for diversity in education, 340–344. London & New York: Routledge. Saramago, J. 1995 Blindness. London: The Harvill Press. Shakespeare, T. 2006 Disability rights and wrongs. Oxon: Routledge. Shakespeare, T. and N. Watson 2002 The social model of disability: An outdated ideology? Research in Social Science and Disability 2. 9–28. Snyder, S. and D. Mitchell 2006 Locating disability: Cultural locations of disability. Chicago: University of Chicago Press. Theroux, P. 2005 Blinding light. London: Houghton Mi¿in. Tremain, S. 2002 On the subject of impairment. In M. Corker and T. Shakespeare (eds.), Disability/postmodernity: Eembodying disability theory, 32–47. London & New York: Continuum.

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Valentine, J. 2002

Naming and narrating disability in Japan. In M. Corker and T. Shakespeare (eds.), Disability/postmodernity: Embodying disability theory, 213–227. London & New York: Continuum.

Van Weelden, J. 1967 On being blind: An ontological approach to the problem of blindness. Amsterdam: Netherlands Society for the Blind. Webster’s third new international dictionary 1966 Unabridged. Springfield: G. and C. Merriam. White, P. 1999 See it my way. London: Little, Brown & Company. Wittenstein, S. 2004 Letter to the editor. Journal of Visual Impairment and Blindness, 98(3). 133. World Health Organisation 1980 International classification of impairments, disabilities and handicaps. Geneva: Wood.

Chapter 3 Rebuilding the body: Biomedical and societal discourses and the decision to perform a living-donor organ transplant surgery Paul McPherron 1. Introduction In 2005, a Frenchwoman, Isabelle Dinoire, received the first partial face transplant – including lips, cheeks, chin, and most of her nose. At the time of her surgery, doctors and medical ethicists worried about the risk of a life-threatening surgery for a non-life threatening injury, and pondered the psychological e¤ects of living the rest of one’s life with another person’s face (Dubernard 2007). According to various media reports in 2007 and again in 2008, however, Dinoire has been completely happy with the surgery and mostly feels ‘‘completely normal.’’ She does note that small changes such as the growth of a hair on her chin have made her confront notions of identity and her relationship to the donor. She comments, ‘‘I had never had one [a hair on her chin]. You knew it’s yours but at the same time ‘she’ is there. I am making her live, but that hair is hers’’ (Allen 2008). Giving voice to alternate feelings of relief and happiness after receiving an organ from a cadaver or living-donor, Dinore’s surgery is one of the more recent examples of tensions and questions that have surrounded organ transplant surgeries throughout the 20th and into the 21st century. As Lederer (2008) comments: Transplanting a human face was a new surgical procedure in 2005, but the concerns about its implications were not new. The face transplant provoked many of the same concerns about identity, ethics, and the ‘‘supply’’ problem created by the transplantation of glands, skin, bones and other body parts in the first part of the twentieth century.

From a language perspective, organ donation surgeries bring together divergent language from what Mishler (1984) labeled the life world discourses – rooted in the subjective experiences of patients – and the medical world discourses – characterized by the objective observations of doctors. Numerous studies in sociology, anthropology, and public policy have pointed out the discrepancy between the world views promoted in these two dis-

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courses as well as the dominance of the medical discourses in popular media on disease and body breakdowns (Helman 1991; Shore 1996; Bokhour 2005). In reaction, recent studies have focused exclusively on the subjective and social dynamics of transplant surgeries – including Fox and Swazey’s (1992) study of living-donor kidney surgeries from the perspectives of donors and recipients; Hogle’s (1999) comparison of organ procurement surgeries in Germany and the United States; and Lock’s (2002) examination of ‘‘brain death’’ in Japan and North America revealed cross-cultural aspects of organ donation policies and practices. In this primarily qualitative and ethnographic work, specific attention is placed on the social, narrative, and language aspects of organ donation – an emphasis that is often overlooked in media reports of medical miracles and doctor narratives that emphasize the binary success or failure of the transplant surgery. Taking a similarly linguistic and qualitative approach in describing an ideology that underlies most medical world discourses on transplant surgeries, Sharp (2006) details a transplant ideology that includes the following premises and paradoxes: 1. 2. 3. 4. 5. 6. 7.

the concept of transplantation as a medical miracle the denial of transplantation as a form of body commodification the perception of transplantable organs as precious things the dependence on brain death criteria for generating transplantable parts the assertion that organs of human origins are becoming increasingly scarce in our society and radical solutions are required an insistence that the melding of disparate bodies is part of a natural progression in a medical realm predicated on technological expertise the imperative that compassion and trust remain central to the care of dying patients, even when a new corporate style of medicine demands an increasing number of transplantable organs (p. 8)

Drawing on Sharp’s (2006) work on the transplant ideology – particularly points 2 and 3 about the transplant organ as a ‘‘gift’’ or ‘‘precious thing’’ – this chapter examines medical world and life world discourses about transplant surgeries – in particular living-donor liver surgeries. In the following sections of the chapter, I first highlight the configuration of the ‘‘gift metaphor’’ in organ transplant surgeries, focusing on how divergent social, medical, and policy discourses have constructed organs as ‘‘gifts’’ while denying ‘‘commodity’’ or ‘‘resource’’ metaphors as well as the lived experiences of organ donors and recipients. In the next section, I then relate these metaphors to my personal experiences of liver disease and a living-donor transplant surgery. In this way, the chapter represents both

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a discourse analysis of the transplant ideology in liver donation surgeries as well as an on-going dialogue about bodies, body breakdowns, altruism, and gifts that takes place between all participants in liver donation surgeries, including in this chapter between my father (a recipient of my liver), me (a liver donor), and my mother (both my father’s and my primary caregiver). In analyzing the lived realities around bodies, the chapter argues that these experiences are crucial to note because they counter dominant societal tropes (as in gift of life ads) and medical ones; however, at the same time, when entering into an examination of bodies and discourse – be it from a more historical/policy perspective or the more ethnographic/narrative perspective used here, it is important to avoid an overemphasis on what Grosz (2003: 15) has called ‘‘a concretization of the past’’ or a tendency to privilege historical events and memory at the expense of welcoming the ‘‘unexpectedness of the future and the new as it makes clear the specificities and particularities, the events . . . of history.’’ Further, Weiss (2003: 34) echoes this call in examining the ‘‘clash’’ of meanings that are constructed in metaphors in and about the body by noting that unintelligibility does not inherently lead to a failure of communication and that the goal of discourse analysis around body and narrative is not necessarily more intelligible organization and communication of our bodily experiences. With this in mind, the chapter is organized around two related sets of research questions that seek to open up the dominant metaphors and discourses about organ transplant surgeries in order to see potentials for new meanings and narratives that run counter to dominant medical troupe. The questions are based in my role as an applied linguist researching the language of body breakdowns, while the second are based in my own family narratives about a living-donor liver transplant surgery. Research Question 1: How do organ procurement and donation surgeries bring together divergent medical, societal, and familial discourses on bodies and body breakdowns- in particular the notion of surgeries as ‘‘a gift of life’’? Research question 2: How do liver disease patient experiences challenge these dominant discourses and metaphors of organ transplantation? What implications do these more fluid accounts of body breakdowns have on recipients and donors in living-donor liver surgeries?

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The data presented here include: 1) newspaper and online media about organ and liver donation surgeries; 2) interviews from an organ donor’s family; and 3) journals of the donor, recipient, and donor’s caregivers. As Ramanathan and Makoni (2007) write, self-disclosure and researcher reflexivity remains ‘‘vexed and murky;’’ and indeed the methods of data collection and analysis in this paper are an odd combination of my attempts to find a ‘‘professional’’ and ‘‘distanced’’ voice while maintaining the complexity and personal ‘‘voice’’ of family narratives. I maintain that this type of shifting between personal and professional voices is necessary in order to find new ways to language bodies and body breakdowns and to resist the narrow meanings of given medical and societal discourses. After presenting a portion of my collected data in relation to the two research questions, the chapter concludes with further reflections on the task of researching language and body breakdowns in relation to organ transplantation surgeries. 2. ‘‘The gift of life’’: Organ and liver donation discourses in the 20th century Throughout the 18th and 19th centuries, doctors and surgeons experimented with grafting and transplanting tissue and organs, but, in the United States at least, it is only after blood transfusions became more successful and widespread in the early 20th century, that discourses of organ transplants began to emerge. In the United States, newspapers printed stories of heroic blood donors and altruistic individuals who donated blood to anonymous recipients, and ‘‘the gift’’ of blood donation was praised by religious and medical institutions as an act of community service. At the same time, demand for blood quickly outpaced blood supplies, and doctors and media stories soon began describing blood as a national ‘‘commodity,’’ with hospitals in the early 1900s paying between $10–$100 for a pint of blood and in 1938 the formation of a ‘‘professional’’ blood sellers union in New York City as part of the American Federation of Labor (Lederer 2008). It is perhaps not a surprise, then, that in 1937 a doctor at Cook County Hospital in Chicago first used the term ‘‘blood bank,’’ and he notes Just as one cannot draw money from a bank unless one has deposited some, so the blood preservation department cannot supply blood unless as much comes in as goes out. The term ‘blood bank’ is no mere metaphor. (quoted in Lederer 2008: 89)

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As media and societal discourses adopted this metaphor, Lederer (2008) points out that the ‘‘banking’’ metaphor was applied to several other medical storage practices including ‘‘eye banks’’ that held corneas for transplantation, ‘‘gene banks’’ that euphemistically held sperm donations, and ‘‘milk banks’’ that collected breast milk (p. 92). Through these metaphors, human body parts are directly connected to the market notion of ‘‘supply and demand,’’ revealing a financial view of flesh and blood donations in medical discourses from early in the 20th century, a view that existed alongside notions of organs and blood as ‘‘priceless gifts.’’ It is important to note here that doctors, donors, and recipients have typically used a variety of terms to refer to organ donation surgeries and transplant organs while most medical journals and textbooks have aimed toward more precise and objective language, avoiding any ‘‘banking’’ or ‘‘gift’’ metaphors and focusing on objective assessments of disease problems and solutions. For example, Busuttil (2002) refers to living-donor surgeries as ‘‘Adult-to-adult living donor liver transplantation (ALDLT)’’ and Beavers et al. (2005) refer to the ‘‘right lobectomy for living donor liver transplantation (LDLT)’’ in their study of ‘‘donor morbidity’’ or incidence of disability or illness in liver donors. Alternatively, the metaphor of organs as ‘‘gifts’’ dominates the language used in media and medical institutions, as evidenced in the homepage for the United Network for Organ Sharing (UNOS) – the medical institution responsible for organizing the waiting lists of potential organ recipients:

Image 1. Homepage of UNOS1 1. Retrieved February 26, 2009 from http://www.unos.org

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Unlike most medical journals, even those that discuss ethical issues in organ donation, the website emphasizes a donated organ as a ‘‘precious gift’’ of life and UNOS’ desire to place them ‘‘in the most equitable way possible.’’ In addition, the web-site captures the state of immediacy that many families feel when a loved one is waiting for an organ, placing a picture of a clock next to a running tally of the number of organ donations and the number of people waiting for organs. Also drawing on the ‘‘gift’’ metaphor, Mount Sinai Hospital used the following advertisement for its hospital in an issue of the New York Times Magazine:

Image 2. Advertisement for liver donation surgery2 2. New York Times Magazine, December 17, 2008, p. 17.

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Both the website and the advertisement ask donors to rely on the confidence and ‘‘knowledge’’ of doctors to both diagnose and solve liver disease – a key aspect of medical discourses (Dunchan and Kovarsky 2005), and both marvel at the ‘‘medical miracle’’ of liver and organ transplants – a key aspect of the transplant ideology (Sharp 2006). The advertisement does explicitly create the sense of emergency about the ‘‘supply of organs’’ as in the UNOS website, but the fact that the hospital uses living-donation surgery in such a prominent advertising context implicitly points out that the altruistic ‘‘gift of life’’ from living-donors is the only ‘‘hope’’ of survival for many people su¤ering from liver disease. It is important to note here that outside of some reference to ‘‘organ banks,’’ the financial or banking metaphors for organ transplant surgeries are largely ignored in recent media and institutional discussions about organ transplant surgeries. In fact, despite the prevalence of ‘‘banking’’ metaphors and payment for organs in early 20th century policy and media documents, the conception of organs as financial ‘‘commodities’’ instead of altruistic ‘‘gifts’’ is an increasingly problematic notion for many health o‰cials and medical institutions. For example, Luc Noel of the World Health Organization (WHO) points out the di¤erences in the two conceptions of organs and donation surgeries. He notes, ‘‘There are two prevailing concepts of transplantation. One relies on money and leads to increased inequality, besides putting a price on the integrity of the body and human dignity. The second is based on solidarity and the donor’s sole motivation to save a life’’ (quoted in Garwood 2007). Responding to the dominance of ‘‘the gift’’ metaphor in most medical institutions such as the WHO, Satel (2009) has recently called for both a repositioning of our view of donated organs and new policies regarding paid-transplant surgeries. Critiquing the ‘‘gift’’ metaphor, she writes: The woeful inadequacy of our nation’s transplant policy is due to its reliance on ‘‘altruism.’’ According to the guiding narrative of the transplant establishment, organs should be a ‘‘gift of life,’’ an act of selfless generosity. It’s a beautiful sentiment, no question . . . Yet, it is lethally obvious that altruism is not a valid basis for transplant policy. If we keep thinking of organs solely as gifts, there will never be enough of them. We need to encourage more living and posthumous donation through rewards, say, tax credits or lifetime health insurance. . . . Paradoxically, our current transplant system makes every donation seem like a ‘‘loving voluntary gift of organ donation.’’ Think about it: there is no other legal option.

For many stakeholders in the organ procurement and allocation process, Satel’s (2009) argument raises troubling images of poor and working class

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donors providing organs for privileged and upper class recipients. Regardless, she makes the important point that ‘‘gift’’ and altruistic images are not the only way to conceive of organ donation surgeries and human organs. Examining the language of ‘‘gifts’’ and ‘‘commodities,’’ it is important here to note two recent discussions of metaphors and bodies. First, in their popular and influential work on bodies, language, and metaphor, linguist George Lako¤ and philosopher Mark Johnson describe multiple underlying metaphoric systems that are based on human experiences with our bodies and environment (Lako¤ and Johnson 1980, 1999; Johnson 1987). According to their categorization of metaphors, the two contrasting metaphors related to organ donation, the ‘‘gift’’ and the ‘‘commodity,’’ are, in fact, related to the same underlying super-ordinate category of moral accounting. Lako¤ and Johnson (1999) write: If I do something good for you, then by moral accounting I have given you something of positive value. You are then in my debt. In altruism, I cancel the debt, since I don’t want anything in return. I nonetheless build up moral credit.

Thus, from this perspective, even though the WHO and most medical institutions fear the morality of assigning a value to organs, the English language already conceptualizes well-being in terms of wealth (consider the idioms ‘‘to seek a rich life,’’ ‘‘to invest in happiness,’’ and ‘‘to profit from experience’’), and while altruism may be a cancelling of debts, our conception of a ‘‘gift’’ is still framed in monetary terms. Satel (2009) calls for a change in how society thinks about organ donation, but in terms of moral accounting, donors and recipients are already influenced by a view of organ donations in banking or accounting terms, with the di¤erence that stakeholders in the policy of procurement and donation of organs refuse to assign or recognize the monetary or altruistic ‘‘price’’ of organs. Also pointing out the connections between metaphoric systems, the work of Paul Ricoeur focuses on the way metaphorical categories serve to unify and organize our understandings of the world, in our case our bodies and our organs, but, crucially, he argues that this does not mean that narrative or conceptual intelligibility is resolved or even necessarily attainable as a result of the use of metaphors. As Ricoeur (1991) claims, part of the configuration of a metaphor is its inherent ‘‘clash’’ between divergent semantic fields: ‘‘In e¤ect, in order that there be a metaphor, it is necessary that I continue to perceive the previous incompatibility through the new compatibility’’ (quoted in Weiss 2003: 29). Connecting this point to the discourses around organ transplantation, in the use of a ‘‘gift’’ or

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‘‘banking’’ metaphor, there is an ever-present intelligibility between our experience of our bodies and the moral ‘‘price’’ that we assign to an organ. In other words, when we step back, it is hard to imagine how organs, a form of human flesh, can be described through any metaphoric system. As Weiss (2003) points out, however, while we know this incompatibility exists, it is convenient and even necessary to foreground or ‘‘make visible’’ (cf. Ramanathan 2009) only the metaphor, perhaps to silence or ignore the diseased and broken organ that needs to be replaced. Thus, the ground – in this case the body – that makes such a metaphor possible is ignored. Moving to the second part of this chapter, the key point here is that all metaphors make visible a certain relationship, but the body – and its failing, broken organs – is always present, despite the cover of ‘‘gift’’ metaphors or societal discourses. It is impossible not to have the body implicated in these metaphoric relationships, and as instead of looking for a particular organization, a perfect metaphor, or a telos in our use of metaphors, we need to do more stepping back from the tensions that have arisen in the past over the metaphors of organ transplantation and analyze the messy, often unintelligible, and mostly indescribable experiences of organ donors and recipients, as illustrated in the next data section. 3. Family story of organ donation Turning now to my second set of research questions, it is clear that the experiences of most liver donors and recipients are a¤ected by financial and gift metaphors as seen in the Mt. Sinai advertisement with its certainty of diagnosis and a clear choice to perform a living-donor surgery, but while the ‘‘gift’’ metaphor remains the dominant conception of the liver donation surgery, it seems peripheral to donor and recipient experiences, particularly those after the donation surgery. Many liver disease patients live for years without any physical symptoms or signals of disease, often perplexing doctors and defying clear diagnosis. In her journal, my mom describes the early stages of my father’s disease: Your father first found out that he had abnormal liver tests (blood) was on a routine physical when he was about 33 years old. After further tests, seeing a specialist, and a hospital stay there was no answer as to why this occurred. The doctor said ‘‘It may just be normal for him.’’ Since he felt fine, this is what we wanted to believe. It was monitored for a number of years and when it persisted we were referred to a liver specialist in Chicago. This was a weird experience as this doctor could not give us any further answers

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Paul McPherron and just said to go home, enjoy life and see what happens. Again it was monitored for awhile, until it was suggested we see another liver specialist, Dr. [omitted], in St. Louis. This is when we finally had a name for it and felt that someone knew what to do. It was explained that he had Primary Biliary Cirrhosis. However, he did not fit the picture of someone with PBC because 90% are women, 90% have positive ANA (a blood test that was negative for your father), but the biopsy showed the bridging between the liver cells which indicates PBC. Dr [omitted] used the term ‘‘McPherron cirrhosis’’ because it was so unusual. That certainly personalized it and also explained why it was hard to figure out. It also seemed like his case was special and interesting to the various doctors he saw. He still had no real symptoms and Dr. [omitted] could not tell us how it would progress.

Similarly, other liver disease patients have di‰culty in finding a diagnosis and solution to their illness, particularly if they su¤er from hepatitis-C. Kathy, a liver recipient at Stanford Hospital, describes similar experiences to my parents as she struggled to define her illness: I felt I was the only one in the city, county, state (world?) with this disease without a name and without a known origin. In a city with support groups for everything imaginable, there were no support groups for hepatitis. I asked doctors repeatedly if they had patients with this same disease, and I was told that there were others out there but I probably wouldn’t want to meet them. But, I thought, if I am one of them, then no one wants to be around me either. What a dilemma, how alone I felt. Some doctors actually looked at me as a curiousity, or wanted to know more through me. Although their interest was understandable, I wanted to not have this thing. I was continually worried about it, but when I tried talking to friends, they couldn’t understand and wondered why I was so concerned. I looked pretty normal to them. Hep. C is a slow mover; so many years went by as I wondered with each illness, ache or pain, if it was due to the virus or if I was becoming a hypocondriac.3

In experiencing their disease, the patients with liver disease often feel helpless without a clear diagnosis and treatment plan, and their condition itself becomes the object of doctors, who often appear more interested in naming the condition than treating the individual – an example of Foucault’s (1989) medical gaze.

3. Retrieved January 16, 2009 from http://med.stanford.edu/shs/txp/livertxp/ thebridge/recipients/storykathyidoine.html

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In the stories of liver disease before the decision to go on the transplant list or consider a living-donor organ, many of the liver patients struggle with a lost sense of agency over their bodies. For example, Jonathan, a recipient of liver from his sister, describes the need to both ‘‘listen to his body’’ and ‘‘his doctor’s orders’’: In the beginning of my liver disease, the origins were unknown and a mystery. I was eager to figure out the cause. When I got no answers, I had to focus on listening to my body and following doctor’s orders. By the time I was put on the liver transplant list, it no longer mattered how I got sick- my focus was on how I would manage my symptoms and survive. (quoted in Gordon 2006: 4)

Similarly, my mother describes my family’s attempt to work within the medical system to find a cure for my father’s illness that he was slowly coming to terms with: We followed Dr. [omitted]’s recommendation to go on the transplant list early so your Dad would be at the top of the list when his liver got bad enough. This felt like an insurance policy to us – it would be there when and if he needed it. We never were actually waiting for an organ because when it was decided he needed the transplant, they changed the rules and your Dad was not at the top of the list because his blood tests numbers did not indicate how bad his liver was. It felt like the floor had dropped out from under us. Our strategy had failed. I became very angry with the system and let Dr. [omitted] know. I told him it wasn’t fair and couldn’t he do something about it. He was also upset, but realistic and did not o¤er us any hope that this would change. I thought my worse fear was going to happen – he would have a slow, debilitating death. I think I told your Dad this at some point, but I don’t remember when. He never got angry. He just seemed to be trying to come to terms with it in his own quiet way. Then you entered the equation and all conversation turned to how we should deal with our son doing this.

For my family, my father’s symptoms and his ‘‘own quiet way’’ in dealing with his progressively deteriorating body caught us by surprise. Further, my parents had tried their best to position my father highly on the liver donation transplant list, in order to give him the best chance at getting a liver. When the policies were changed right when my father became seriously ill, it furthered our collective sense of helplessness toward our ability to find a cure for his disease, and led directly to my desire to help through my donation.

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The decision to try to the living-donor surgery actually came up during a trip to see my father’s liver specialist in St. Louis. I had been home right after the change in policy and had witnessed a particularly bad episode when my father had begun to lose his memory and had to be taken to the emergency room (in a lighter moment, he could not remember his birthday, but he remember the president’s name; ‘‘Georgey Bush’’ he shouted.) During the trip to see his liver specialist in St. Louis, I picked up a pamphlet on living-donor surgery, and I asked the nurse and doctor about my ability to donate my liver. Interestingly, the medical sta¤ and doctors at the St. Louis o‰ce were very careful not to o¤er me or my family advice about the surgery. They did not refer to my organ ‘‘gift’’ except to give us a pamphlet about the physical e¤ects of the surgery and refer us to a psychologist and social worker at the hospital who were in charge of looking our for the best interests of the donors. Of course, they most likely choose this professional distance in order to avoid any appearance of pressure and protect them legally from an accusation of coercion, but the objective stance is very di¤erent from hospital advertisements and media stories of miracle surgeries that also a¤ected our decision to go ahead with the surgery. Regardless of the numerous discourses and images of living-donor surgeries, in my journal about this time period, I write that ‘‘It was as if it just clicked. There was an opportunity to do something and I just did it.’’ Many discussions about the appropriateness of my decision followed. In retrospect, it appears that our decision was based primarily on a feeling of agency and a desire to regain control over a situation that seemed helpless. In all of our discussions about the surgery, I do not remember anyone discussing my ‘‘gift’’ to my father.’’ In fact, I remember being very uncomfortable when friends and family members would describe the surgery in ‘‘heroic’’ terms, often deflecting attention through a joke about the strength of my liver due to many German beers. Despite my pre-surgery reluctance to use the word ‘‘gift,’’ media reports and family discussions after the surgery have emphasized the ‘‘gift of life’’ that I gave to my father. For example, the local newspaper ran a story about my family five months after surgery with the opening line, ‘‘This may be the eve before Christmas, but Robert McPherron received his ‘gift of life’ five months early from his son.’’ Similarly, my sister remembers vividly, my father’s first birthday party after the surgery:

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Transcript (1): Family discussion about surgery, November 2008. Brenda: It’s not like people are doubting why you did you do this. Although, I do remember when you put the bow on dad’s stomach for Dad’s birthday because you didn’t get him a birthday present. Do you remember that one? And all I remember saying is ‘‘how long is Paul going to be able to ride this one out Dad before he is going to have to go out and buy you a birthday present again. This is not fair.’’ Paul: You’ll never let me live that one down. Brenda: This is not fair. I’m never going to be able to give you a good enough birthday present again. And he’s never going to have to buy you anything ever again. Paul: I made it myself Before starting this project and the process of revisiting this di‰cult time in my life and the life of my family, I had forgotten about how often the ‘‘gift’’ metaphor had been invoked in family and public descriptions about the surgery, even as a birthday joke with my father as a way to annoy my sister. Soon after the newspaper article was published, my father died unexpectedly because of a breakdown in the hepatic artery that supplies the liver with blood, and for many years, I have not wanted to look at the article or pursued discussions about my ‘‘gift of life.’’ In reflecting on the surgery now, almost seven years later, I know that the key factor driving my decision to donate my liver was a helpless feeling as I watched my father’s body deteriorate. For me, one of the most surprising aspects in reflecting on the history of organ donation and the experiences of actual donors and recipients is the di¤erence between the mental and physical processes involved in deciding to donate an organ and the accepted narratives of altruism and gifts that circulate in media and medical institutional texts. Perhaps our conceptions of donation and our bodies can only be languaged through the basic metaphor of accounting – taking care to avoid putting an actual price tag on human organs – but these metaphors seem far from the actual experiences of donors and recipients who are coming to terms with body breakdowns while searching for agency and language outside of simplistic ‘‘gift of life’’ stories. 4. Some final thoughts Examining the language of donation surgeries and the choices that societies and recipients make in allocating organs is murky and often morbid, with

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patient and donor narratives often challenging the premises of the transplant ideology and the assumptions of medical progress and rationality. These challenges, however, can lead to more fluid spaces of dialoguing and texting disabilities and body breakdowns, and in conclusion, the writing of this chapter has a¤orded my family and friends a chance to reflect and, in a way, contest the simplifying metaphors of donation that are prevalent in society. Through the course of this chapter and in our interviews and journals, my mother, sister, and I have re-examined our way of talking about my father’s illness and the donation surgery, and in many ways we have remembered and re-thought how we came to our decision – at points using humor and tears to deal with the inadequacy of language to express our feelings and intentions. In addition to adding this personal and narrative perspective to theoretical and medical accounts of bodies, I think that, as an applied linguist, discourse studies of bodies and body breakdowns should continue to study the language of organ transplantation – including more studies of the language of patient–doctor–donor relationships in organ transplant surgeries. In addition, more attention and study is needed about the silencing of diseased and broken organs, both consciously and unconsciously, by families, society, and medical discourses and the e¤ects of gift metaphors on notions of altruism and morality. Writing about new genetic research, Jones (2001) points out that studies of medicine must go beyond simply stating that new technologies are ‘‘extending the clinical gaze deeper into bodies and communities’’ and ‘‘consider the ways in which individuals and groups in society interact with these scientific developments’’ (p. 174). Similarly, I hope that further language studies of organ transplant surgeries and disease will focus on the complex interactions between individuals and groups – who are seeking agency and power over their medical decisions – and the dominant medical, institutional, and societal discourses that frame the decision to donate an organ. Returning to a key point made earlier by Weiss (2003), I am not calling for an examination of the language of organ donations in order to ‘‘solve’’ the inability of patients to express their feelings in language and negotiate their decisions in relation to the limiting spaces between bodies, souls, and minds; rather, as Merleau-Ponty forefronts in his work, it is through placing an emphasis on lived experience and its inherent unintelligibility that the rigid binaries between mind/body, visibility/invisibility, individual/ society can be opened up and new meanings and narratives about our bodies and our health can be told.

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5. Recommending readings (1) Sharp, L. 2006. Strange harvest. Berkeley: University of California Press. In this ethnographic and grounded account of cadaver-organ recipients, Sharp explores the language and mythologies around ‘‘miracle’’ surgeries that have provided so many people a longer life. Through interviews with recipients and analysis of organ procurement and transfer policy, Sharp examines the paradoxes inherent in organ-transplant surgeries that render body parts into ‘‘parts’’ while avoiding conceptions of hybrid bodies. In sum, Sharp asks important questions that are often overlooked in our collective desire to see medicine o¤er a second chance. (2) Lederer, S. 2008. Flesh and blood: Organ transplantation and blood transfusion in twentieth-century America. New York: Oxford University Press. In this cultural history of organ transplants and blood transfusions, Lederer contrasts the surgical reality with the ‘‘surgical imaginary’’ involved in organ transfer over the last one hundred years. She places particular attention on the medical policy and ethics that emerged in dealing with the complex social and political challenges of organ transfer. She places a particular focus on the challenge of obtaining a su‰cient ‘‘supply’’ of organs to match the increasing demand. (3) Cohen, J. and Weiss, G. (Eds.). 2003. Thinking the limits of the body. Albany, NY: State University of New York Press. In contrast to the historical and ethnographic focus of the first two books, this edited volume deals more generally with the linguistic and philosophical implications of the limits imposed by the body and our individual and collective experiences of our bodies. Taking as a point of departure the notion that ‘‘we must ask to what extent our continual invocation of ‘the body’ limits our very attempts to think beyond its pregiven ontology’’ (p. 1), the volume o¤ers a philosophical and literary approach to similar questions posed by many of the chapters in the current volume about the breakdown of language and discourses about our bodies but our continued search for imaginative and new meanings to communicate our lived experiences.

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References Allen, P. 2008, 02 Nov. Face transplant woman struggles with identity. Daily Telegraph. Retrieved from http://www.telegraph.co.uk/ Beavers, K., R. S. Sandle and R. Shrestha 2002 Donor morbidity Associated with right lobectomy for living donor liver transplantation to adult recipients: A systematic review Liver Transplantation 8(2). 110–117. Bohkour, F. 2005 A diagnosed life in an institutional setting. In J. F. Duchan and D. Kovarsky (eds.), Diagnosis as cultural practice, 45–60. Berlin and New York: Mouton de Gruyter. Busuttil, R. 2002 How safe are donors in adult-to-adult living related liver transplantation? Liver Transplantation 8. 121–122. Cohen, J. and G. Weiss (eds.) 2003 Thinking the limits of the body. Albany, NY: State University of New York Press. Dubernand, J. 2007 Outcomes 18 months after the first partial human face transplant. New England Journal of Medicine 357. 2451–2460. Duchan, J. F. and D. Kovarsky (eds.) 2005 Diagnosis as cultural practice. Berlin & New York: Mouton de Gruyter. Fox, R. and J. Swazey 1992 Spare parts: Organ replacement in American society. New York: Oxford University Press. Foucault, M. 1989 The birth of the clinic. London: Routledge. Garwood, P. 2007 Dilemma over live donor transplantation. Bulletin of the World Health Organization 85(1). 1–84. Gordon, F. 2006 100 questions and answers about liver transplantation: A Lahey Clinic guide. Sudbury, MA: Jones and Bartlett Publishers. Helman, C. G. 1991 Research in primary care: The qualitative approach. In P. G. Norton, M. Stewart, F. Tudiver, M. F. Bass and E. V. Dunn (eds.), Primary care research, 105–124. London: Sage Publications. Hogle, L. 1999 Recovering the nation’s body: Cultural memory, medicine, and the politics of redemption. New Brunswick, NJ: Rutgers University Press.

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The body in the mind: The bodily basis of meaning, imagination, and reason. Chicago: University of Chicago Press.

Habermas or Foucault or Habermas and Foucault?: The implications of a shifting debate for medical sociology. In G. Scambler (ed.), Habermas, critical theory, and heath, 201–230. New York: Routledge. http://www.telegraph.co.uk/news/worldnews/europe/ france/3367041/Face-transplant-woman-struggles-withidentity.html Lako¤, G. and M. Johnson 1980 Metaphors we live by. Chicago: University of Chicago Press. Lako¤, G. and M. Johnson 1999 Philosophy in the flesh: The embodied mind and its challenge to western thought. New York: Harper Collins. Lederer, S. 2008 Flesh and blood: Organ transplantation and blood transfusion in twentieth-century America. New York: Oxford University Press. Lock, M. 2002 Twice dead: Organ transplants and the reinvention of death. Berkeley: University of California Press. Mishler, E. 1984 The discourse of medicine. Cambridge: Cambridge University Press. Norton, P. G., M. Stewart, F. Tudiver, M. F. Bass and E. V. Dunn (eds.) 1991 Primary care research. London: Sage Publications. Ramanathan, V. and S. Makoni 2007 Bringing the body back in body narratives: The mislanguaging of bodies in biomedical, societal, and poststructuralist discourses on diabetes and epilepsy. Critical Inquiry in Language Studies 4(4). 283–306. Satel, S. 2009 Why altruism isn’t moral. The American, Jan. 30. Scambler, G. (ed.) 2001 Habermas, critical theory, and heath. New York: Routledge. Sharp, L. 2006 Strange harvest. Berkeley: University of California Press. Shore, B. 1996 Culture in mind: Cognition, culture, and the problem of meaning. Oxford: Oxford University Press. Weiss, G. 2003 The body as a narrative horizon. In J. Cohen and G. Weiss (eds.), Thinking the limits of the body, 15–38. Albany, NY: State University of New York Press.

Chapter 4 Reading ‘‘intentions’’: Communication challenges for parents of children with autism and partial hearing Vaidehi Ramanathan The idea of autism could not have emerged as a distinct disorder because within the diagnostic categories of nineteenth century (and earlier), thought, autism was unthinkable. . . . It wasn’t until standards of normality had been formalized and narrowed and standards of pediatric screening extended to a child’s earliest years that children with PDD, SPD, or AS (or Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD) could be widely identified, labeled and therapied. And so the history of autism in all its forms must be contextualized within the evolution and transformation of medical practices, the development of professions such as psychiatry, psychology, social work, and special education, many of which either emerged or were professionalized in early twentieth century (Nadesan 2005: 3) 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. . . . (Grandin and 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 di¤erent visual experiences that are displaced in time (Wood et al. 1986: 65)

Can accounts of subjectivity and the psychical inner space be adequately explained in and by the language we have for our bodies?1 How much 1. This chapter is based on my larger, ongoing project on Bodies and Language and segments of it appear in Ramanathan (2009b).

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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 would 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? While issues relating to intentions (‘‘intents’’/‘‘intentionalities’’) stretch deep into philosophical questions that sometimes yield no ‘‘answers’’, our communicative e¤orts are predicated on what of our others’ intentions we are able to ‘‘pick up,’’ and ‘‘read’’ (Ramanathan 2009a). Our collective understandings of what ‘‘normal’’ e¤ective 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 manner that meets our ‘‘discourse expectations’’ (however un-namable that may be). However, it is when we are directly faced directly with accounts of people whose negotiations with the ‘‘languaged’’ world are fraught with frustration, anger, and di‰culty 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 (Ramanathan 2009b) 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. Our notions of ‘‘normalcy,’’ needless to say, are completely sutured into this (Davis 2005). Drawing on two cases relating to autism and partial hearing, I will orient my discussion around di‰culties that parents of children with these ‘‘ailments’’ articulate regarding negotiating 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 (there is research that both supports and contests this2); it is that parents of these 2. But before I do that, here is some brief background about autism. As a neurological developmental disorder, autism is frequently associated with the inability ability 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

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children have to base their child-rearing and socialization on their readings of what the ‘‘normal’’ world intends. Intentions, then, are key here, with parental ‘‘readings’’ of and struggles with ‘‘normalcy’’ informing their interactions with their children.

1. Unraveling intentions If our everyday interactions proceed relatively smoothly, it is generally because the messages we send out get picked up in the way they are intended. 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 non-verbal 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. (from 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/speaker is their contribution to those of their interlocutors in a reciprocal, meaningdriven manner (Fay and 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 (Solomon 2004; Sterponi 2004; Kremer-Sadlik 2004; Ochs et al. 2004), and the present chapter aligns itself with this research.

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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 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, Moses and Baldwin 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 there 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 di¤erent 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 socio-cognitivist orientations (Bateson 1972; Gee 1992; Atkinson 2007), 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.

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While these di¤erent 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 (that stress intentions in terms of mental states in our brains, or assessing them in terms of ensuing actions) or social interactionist perspectives (that emphasize intentions as emergent through language or co-constructed through dialogue) have not adequately accounted for how one with a communicationrelated condition attempts to interact with the ‘‘normal’’ world. Research by Nadesan (2005, on autism) and Hamilton (1995, on interactions with Alzheimer patients), for instance, makes us aware of the extent to which misreadings and misinferrings of intentions can strap the person whose communicative skills are deemed ‘‘lacking’’ with labels. The everyday social processes by which this happens (interactions in schools, doctor’s o‰ces, people in the street) put people with these conditions and their families in positions where they are made to be defensive, thereby re-enforcing our collective ideas of normalcy (Davis 1995). Also under-investigated are 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 – that moment of enunciation – and to what extent are intentions part of this inner space?

2. Details about the present endeavor, auto-, bio- and researcher pathographies The materials on which the present discussion is based are drawn from an extensive pool of ailment/disability-related data. Gathered over the last 6 years, these materials range from oral and written narratives by patients and their partners and cover a range of body conditions (including type-1 diabetes, epilepsy and partial hearing and Alzheimer’s disease; see Ramanathan 2009b). It also includes copious field notes and participation in key medical sites (pharmacies, doctor’s o‰ces, health insurance policy o‰ces, hospitals). My investment in this general area is deeply personal as well: I am the long-term partner of one with a serious chronic ailment and have had to negotiate caregiving-related issues as well as issues around health insurance (as in the case of ‘‘pre-existing conditions’’, clauses that shut doors and rationalize discrimination). It is against this data canvas that the present sub-set of data – two firsthand accounts by parents of children with autism and partial hearing respectively – needs to be understood. My focus on their written narra-

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tives is deliberate. My opting to focus on the written form stems partially from wanting the kind of reflection and retrospection that (on-the-spot) oral narratives may not engender (see Couser 1997 for an excellent discussion on this point). In terms of larger general textual classifications, these written accounts could perhaps best be viewed as ‘‘parent/bio pathographies,’’ which are di¤erent from ‘‘autopathographies,’’ first-person accounts of illnesses; see Couser 1997). This present text, wherein I assemble my account of these voices, might best be termed ‘‘researcher/advocate pathography’’ (for want of a better term). While the issue of writing/speaking about someone else’s body concerns is fraught with tensions and ethical concerns (Couser 2004) – and justifiably so – I am assuming an orientation whereby multiple perspectives around ailing bodies come to the fore, and whereby we as a community shift attention away from speaking of ailments as personal bad luck to speaking of them in terms of communal responsibilities and societal rights. This shift is crucial, since in doing so we induct into the discussion Foucauldian concerns about equality, and our shared human concerns of fear, anxiety, depression, discrimination, and poverty around this condition (see Ramanathan 2009b for a fuller discussion).

3. Mark Osteen, and SM: two parents and their negotiations with ‘‘normalcy’’ Drawing partially on Mark Osteen’s account of his autistic son’s di‰culties with toilet training, I turn to addressing some impossibilities of ever fully understanding another’s intentions. Consider 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 (p. 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 leaves no 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’’ (p. 61). In other word, 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. (p. 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 (p. 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.3 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 o¤ers an explanation for our unconscious that probes at ways in which language shapes the human subject and the ways in 3. 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, Laclau).

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which linguistic and ideological structures shape both our conscious 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 a¤ord a way to speak to the growth of the unconscious that are always present in the conscious. According to Lacan, a baby from 0–6 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 fulfilment (partially through the mother’s breast, gaze, voice), setting in motion a cycle of desire and assuaging that desire that will control 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 though 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 (Ecrits, 6), and leads to the creation of narcissistic fantasies in the fully developed subject, establishing what Lacan terms the Imaginary (or ‘‘imaginary

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order’’) which continues to influence the subject in successive stages of development. 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 di¤erently. 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 crosspurposes (his 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.4 4. See Sheryl Stevenson (2008) and Antony Baker (2008) for insightful essays on autism.

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Intentions, then, our own and our readings of others, may have more to do with inchoate inner states which we need to find a way of articulating, than 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, of the adjustments they are (not) willing to make for people with ‘‘impairments’’ impact crucial life choices. The following account of SM’s5 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, SM 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 them 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, thereby setting up the endless loop that perpetuates and enforces ‘‘normalcy’’. What follows are some excerpts from SM’s extended accounts. I have culled those segments that best capture SM’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 (4) 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 lots of work; speech therapy, and what the family members can and are willing to do, she added. This is good news she repeated . . . ...

5. SM is a pseudonym.

Reading ‘‘intentions’’ 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. In fact some words were too di‰cult 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, bathtime, playing in the backyard, all turned into opportunities to teach Jay new words, and apply words 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 her o¤. 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

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Vaidehi Ramanathan could not understand why she was in that school. I was worried as to how she would react to the situation. I did not 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 hear or have di‰culty 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 reading and the reading of others) when language is not at one’s bidding (or very little) assumes di¤erent hues of which we in the ‘‘normal’’ world are not su‰ciently 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 SM’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 linguistic significance. Meaning in essence, means nothing; it only possesses potentiality – the possibility of having a meaning within a concrete theme (cited in Voloshinov 1973: 38)

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Words, then, always refer back to other words and texts for their meanings. While language can from this point of view be viewed as 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 socio-ideological 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, 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 di¤erentiates into two separate though interlocking systems: one continues to adjust to the external world and emerges as adult social speech; the other begins to develop slowly 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 world 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 functioning – has to be cultivated into a space where thought can develop and flourish 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

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without or with little language) to the conceptual world (where the child develops inner speech without language, but through signs) are leaps di¤erent from hearing children. Dialogue is crucial here since it launches inner speech, the medium through which s/he engages both herself and the world. To bring this back to the discussion about intentions: 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 ‘‘e¤ective communication’’ (whatever that means) to take place. Coming back to SM’s accounts of inducting her daughter into the hearing world: SM 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 SM may not have been thinking in terms of developing her daughter’s inner speech, she was in e¤ect doing just that – ensuring that her daughter developed the dialogic ability to read intentions, an 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.

4. Discussion As Caputo (1987) points out, the work of phenomenology consists in unpacking the pre-reflective, pre-thematic or the (Husserlian) horizontal structures 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, multiplylaminated, and deeply interpretive, touching and emerging as they do from everything including fear, irrational beliefs, encounters with the world, prior experiences, worries about the unknown, and parental con-

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cerns 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 as ‘‘appropriate’’ responses to signals we were sending out. But as we saw from Mark Osteen’s and SM’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 (SM 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 SM’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,’ 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 SM’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 di¤erently from us. Our inability to communicate what we intend is just as arbitrary as theirs are; we have just convinced ourselves that we in the ‘‘normal’’ world communicate and they do not.

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5. Recommended readings (1) Nadeson, M. 2005. Constructing autism: Unraveling the ‘‘truth’’ and understanding the social. London: Routledge. This excellent volume o¤ers an in-depth analysis of social tropes that coconstruct autism. The chapters address concerns related to autism emerging as a dialectic of biology and culture as well as psychological and biogenetic approaches that construct the condition. The author also o¤ers insights into issues of identity, disablement, and di¤erence. (2) Lock, M. and J. Farquhar. 2007. Beyond the body proper: reading the anthropology of material life. Durham: Duke University Press. This anthology o¤ers an excellent array of readings several topical issues related to bodies including labor, embodiment, desire, domination, commodification, and knowing systems. The essays sit at the cross-section of anthropology and communication and have a myriad of implications for those of us coming at this nexus from linguistics and/or language-related backgrounds.

References Astington, J. 2001

Baker, A. 2008

The paradox of intention. Assessing children’s metarepresentational understanding. In B. Malle, L. Moses and D. Baldwin (eds.), Intentions and intentionality, 85–103. Cambridge, MA: MIT Press. Recognizing Jake. In M. Osteen (ed.), Autism and representation, 229–243. New York: Routledge.

Baron-Cohen, S. 1988a Social and pragmatic deficits in autism: cognitive or a¤ective? Journal of Autism and Developmental Disorders 18(3). 379–402. Baron-Cohen, S. 1988b Are autistic children behaviourists? An examination of their mental–physical and appearance–reality distinction. Journal of Autism and Developmental Disorders 19. 579–600. Baron-Cohen, S. 1996 Mindblindness: an essay on autism and theory of mind. Cambridge: Cambridge University Press. Bateson, G. 1972 Steps toward an ecology of mind. Chicago: University of Chicago Press.

Reading ‘‘intentions’’ Bruner, J. 1983 Caputo, J. 1987 Couser, G. T. 1997 Couser, G.T. 2004 Davis, L. 1995

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Child’s talk: Learning to use language. New York: Oxford University Press. Radical hermeneutics. Bloomington: Indiana University Press. Recovering bodies: illness, disability and life-writing. Madison: University of Wisconsin Press. Vulnerable bodies: Ethics and life writing. Ithaca, NY: Cornell University Press. Enforcing normalcy: disability, deafness and the body. New York: Verso.

Davis, B. 2005 Alzheimer discourse: text and talk. London: Palgrave. Duchan, J. and D. Kovarsky (eds.). 2005 Diagnosis as cultural practice. Berlin & New York: Mouton de Gruyter. Emerson, C. 1983 The outer word and inner speech: Bakhtin, Vygotsky and internalization of language. Critical Inquiry 10(2). 245–264. Fay, W.H., and A.L. Schuler 1980 Emerging language in autistic children. Baltimore, MD: University Park Press. Gee, J. 1992 The social mind: language, ideology, and social practice. New York: Bergin and Garvey. Gibbs, R. 2001 Intentions as emergent products of social interactions. In B. Malle, L. Moses and D. Baldwin (eds.), Intentions and intentionality, 105–122. Massachusetts: MIT Press. Grandin, T. and M. Scariano 1986 Emergence: Labeled autistic. New York: Warner Books. Hamilton, H. 1995 Conversations with an Alzheimer’s patient: An interactional sociolinguistic study. Cambridge: Cambridge University Press. Kremer-Sadlik, T. 2004 How children with autism and Asperger Syndrome respond to questions: a ‘naturalistic’’ theory of mind task. Discourse Processes 6. 185–206. Landa, R. 2000 Social language use in Asperger Syndrome and High Functioning Autism. In A. Klin, Volkmar, F. R. and Sparrow, S. S. (eds.), Asperger’s Syndrome, 125–155. New York: The Guilford Press.

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Leslie, A.M. 1987

Pretense and representation: the origins of ‘‘Theory of Mind?’’ Psychological Review 94. 412–426. Malle, B., L. Moses and D. Baldwin (eds.). 2001 Intentions and intentionality. Massachusetts: MIT Press. Nadesan, M. 2005 Constructing autism: unraveling the ‘‘truth’’ and understanding the social. New York: Routledge. Ochs, E., T. Kremer-Sadlick, K. Gainer-Sirota and O. Solomon 2004 Autism and the social world: an anthropological perspective. [Special issue]. Discourse Processes 6. 147–183. Osteen, M. (ed.) 2008 Autism and representation. New York: Routledge. Ramanathan, V. 2009a Texting doppelgangers: repetition, signs, and intentionalities in (auto)biographical Alzheimer writing. Journal of Literary and Cultural Disability 3(1). 67–84. Ramanathan, V. 2009b Bodies and language: health, ailments, disabilities. Clevedon: Multilingual Matters. Ramanathan, V. (ed.) 2010 Focus on health [Special issue]. Language Policy 9(1). 1–96. Sacks, O. 1989 Seeing voices: a journey into the world of the deaf. Berkeley: University of California Press. Solomon, O. 2004 Narrative introductions: discourse competence of children with autistic spectrum disorders. Discourse Processes 6. 253–276. Sterponi, L. 2004 Construction of rules, accountability, and moral identity by high-functioning children with autism. Discourse Processes 6. 207–218. Stevenson, S. 2008 M(Othering) and autism. In M. Osteen (ed.), Autism and intentionality, 197–211. New York: Routledge. Voloshinov, V.N. 1973 Marxism and the philosophy of language. New York: Seminar Press. Wood, D., H. Wood, A. Gri‰ths and I. Howarth 1986 Teaching and talking with deaf children. New York: John Wiley & Sons.

Part 2.

Bodies and cognitive ‘‘impairments’’

Chapter 5 Intentional stance and Lucinda Greystone: Embodied memory in conversational reminiscence by a speaker with Alzheimer’s Disease Boyd Davis Alzheimer’s disease, the most common form of dementia, a¤ects more than five million citizens in the U.S., where it costs 172 billion dollars annually in care (AlzFacts2010) and a¤ects an estimated thirty million world-wide, with prevalence particularly in the developed countries. Persons diagnosed with dementia of the Alzheimer’s type (DAT) may live many years after diagnosis; care is most often given by family members. Attitudes toward DAT vary: in many cultures throughout the world, dementia is regarded as a part of old age and is frequently stigmatized (Burgener and Berger 2008; Justiss et al. 2009). Even with changes in caring techniques and in attitudes toward people with DAT brought about by the advent of person-centered care (Kitwood 1997), measurable amounts of stigma and negative attitudes persist. These attitudes a¤ect not only acts of caregiving but also people’s willingness to participate in diagnostic screening (O’Connor and McFadden 2010; Williams et al. 2010) or their readiness to discuss their perceptions of dementia and their awareness of how other people might view their having dementia (Sabat 2002). An awareness of self and of insight into one’s being positioned by others is part of what Kelly (2008) calls the intentionality of insight: for Kelly, intentionality ‘‘is not necessarily truth or fact, but rather, a position taken’’ (p. 523). By taking an intentional position toward narratives-in-interaction by persons having DAT, this chapter analyzes two interconnected sets of multiply-repeated stories from Lucinda Greystone, an 85-year-old EuroAmerican woman with some degree of dementia, residing in Caregood Manor, an assisted living community in an urban area of North Carolina. It hopes to add to discussions about conversations incorporating remembrance (Norrick 1998a, b, 2005), about language and story in dementia (Ripich 2000; Hamilton 2008), and about identity or embodiment.

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In the absence of an intentional stance from the listener, Lucinda Greystone’s frequently-repeated stories could be dismissed as a manifestation of ideational perseveration, a cognitive deficit. Over fifteen months, eighteen of her thirty-one university student conversation partners recorded the two sets of what they called her ‘‘same stories.’’ This discussion will first examine the notion of sameness as drawn from the student comments that Greystone retold the ‘‘same’’ stories, and at how sameness is connected to Greystone’s embodied and performed identities. Next, we will look at the retellings themselves, examining the changes in her stories: is Greystone the ‘‘same’’ person in each story or in each conversation, and if so, in what sense? Are we to hear her multiple performances of rehearsed narrative as signaling multiple facets of a single identity reconstructed from her earlier body? When she repeatedly performed stories to the students visiting her, she was a¤ected by DAT, a progressive disease that a¤ects memory and communication. What are we to make of that condition? Looking at selfhood in her performances has additional implications for persons with Alzheimer’s disease, and the discussion will close with examining one such implication. The construct of personal identity is a key point in arguments about ethics concerning the capacity of the person for decision making concerning the final disposal of the body via advance directives. Once we assume she intended to tell them, Greystone’s repeated stories introduce complexity into an analysis of narrative-in-interaction for persons with DAT. That complexity is keyed to what Bamberg (2008) calls the ‘‘identity dilemma’’: the way the teller’s presentation of past events allows analysts to identify the source or identity of the teller. In second tellings, Bamberg claims, the story will change slightly, keyed to audience or to the time lapse between tellings, or to a reworking or reinterpretation of memory, all of which let us look at issues of selfhood. The complex issue of ‘‘sameness,’’ in Ricoeur’s (1992) distinction of idem vs. ipse, sameness vs. selfhood, has primarily been applied to retellings by unimpaired elders, such as Holocaust survivors (Schi¤rin 2002; Schi¤ et al. 2008) or ‘‘Betty,’’ a woman whose retellings elicited for a film recording have been studied by several researchers (Bamberg 2008b). Ramanathan-Abbott (1994) analyzed narrative and conversation with Tina, a woman with cognitive impairment whose stories about her life di¤ered by audience, in this case, between her husband and the researcher. Like Tina, Greystone was a woman with cognitive impairment, but her retellings appeared to her various student conversation partners to be ramblings. However, by taking an intentional stance toward Greystone, we can assume her here-and-now body encased

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scripts as bound up with her there-and-then stories from which she could reconstruct a ‘‘selfness’’ and its earlier shadows in conversations, regardless of how fragmented the other features of those conversations may be. The stories were obtained from student visits to Greystone as a resident in one of the assisted living or dementia care communities that serve as resources to the service-learning component in an introductory Gerontology class at UNC-Charlotte. Service-learning typically involves students in community service practicum, internship, or other structured learning experience included within a course that involves students with community members in a way designed to foster student learning and meet community needs (Hancock, Shenk and Davis 2009). In the UNC Charlotte course, students are asked to visit and talk for 10 hours over a semester with an older person, preferably one with DAT, residing in one of the four communities with whom the gerontology faculty collaborate for research and service, and to record at least one of the interactions. Students receive a short dementia communication training in class; it is keyed to ongoing local research in DAT discourse built into training materials by Davis and colleagues (Davis and Maclagan 2009; Davis Russell-Pinson and Smith 2008; Davis and Smith 2009). The training highlights stereotypes of aging and dementia, language and communication changes in dementia, and three specific communication techniques: ‘‘go-aheads,’’ in which the listener manipulates intonational feedback (Mmm-hmm: Ward 2006: 165) to suggest active and interested listening; indirect questions (so, you have two sisters, Davis 2005); and ‘‘quilting’’ (Moore and Davis 2002; Davis and Moore 2003). In the last technique, the conversation partner repeats or paraphrases statements by the person with DAT that sound like elaborative or evaluative components of narrative, and gradually co-constructs part or all of a narrative. Student logs from each meeting contain brief comments about what technique they tried with Greystone during each of the 10 sessions. Their slightly longer reflection papers give some context for the conversations they record, but these are nearly always student reactions to the facility itself and to Greystone’s usually cheery demeanor, as the students focus on insights into themselves gained by the experience. During the first academic year, Caregood Manor sta¤ reported that Greystone enjoyed the company, the attention, and the chance to share several recurring topics and performance narratives in conversations; by fall of the second academic year, Greystone refused to talk with all but one of the students who asked to sit and chat with her, and that winter, refused all conversation partners until her death not long afterwards.

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When she and the students began conversing, she was informally placed at 4 on the Global Deterioration Scale (Reisberg et al. 1982; Hamilton 1994) because of decreased ability to travel, handle finances, medications and cooking, concentrate, or untangle events of personal history. People at this stage of moderate cognitive decline or mild dementia are typically able to recall familiar places or faces, and to withdraw from situations that are felt to be challenging. As the Fall 2005 semester gave way to Spring semester, 2006, her orientation to time and place and her abilities to care for herself were reported as having slipped further. Comments during recorded conversations such as needing to go home and take care of her mother suggest that Greystone was becoming more a¤ected by dementia. Nonetheless, what Greystone was able to perpetuate was her ability to turn conversations to preferred topics, such as her comfortable chair or her allergy to tomatoes, and to perform one or both of two rehearsed narratives, whose telling caused her and often her audience to laugh comfortably. Student logs in late November, 2005, note that Greystone usually told one of these stories in nearly every meeting and was beginning to tell them twice in a meeting, as seen in one recording. Students commented on both their frequency and their ‘‘sameness’’: indeed, the brief student comments, noting only that Greystone had told ‘‘the cake story’’ or ‘‘the Granddaddy story’’ again, were remarkably similar and repetitive. 1. Sameness and selfhood Tell me whom you call a barbarian and I will tell you who you are – Arno Borst (qtd. in Roberts 2007: 1) This section explores the connections between reminiscence and self, with an implicit rationale of assuming that Greystone intended to make meaning with her stories, no matter how often she repeated them. The deliberate assumption of an intentional stance toward Lucinda Greystone positions her not as a talkative and rambling old woman, encumbered with stereotypes associated with conversation and aging, but instead as an interesting conversationalist retaining an ability to reminisce. The interactions eliciting and co-constructing chunks of Greystone’s life story document her persistence in retaining time, place, and parts of herself/herselves in the face of disrupted cognition: the chunks are what Schi¤rin (1996) calls strokes on a self portrait.

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Her narratives of remembrance show coherence (McLean 2006) and underscore both the construction (Sabat and Harre´ 1992) and the persistence of self (Fazio and Mitchell 2009). Her variety of linkages to time and place across conversations with multiple partners display her intersubjective ‘‘activity, actively symbolizing the self ’s relations to its own body and to its social world’’ (Prager 1998: 219). This discussion assumes with Prager (1998) that memory, embedded and embodied in a ‘‘socially constructed self ’’ (p. 81), is a process that ‘‘establishes a framework of understanding by which the rememberer constitutes himself or herself as occupying a specific place at a particular time, always in relation to others and to a past as well as a future’’ (p. 91). Greystone frequently reconstructs memories connected with her mother in conversations with several of her young adult visitors. She shares one or both of her two sets of stories, about cakes or Granddaddy, with her conversation partners, sometimes telling a story twice in the same visit. For example, she alludes to her mother’s skill with cake-baking and tells her Granddaddy story twice in a single conversation with Caroline, a student whose name, like all others in this discussion, has been changed: (1) L: When you took Jan, he called her Jan C: uh huh L: you took my cook, these other girls can’t cook worth nothin’. and I said I spoke up and said I well granddaddy you’ll just have to come stay with us. And mother ain’t coming down there and grandmother said no he can’t come up there either, he’s got to stay here. C: haha – so who was the good cook? Your mom? L: my mom. She truly was. *** [30 turns: part of a cake story, food allergies, and the importance of family] L: My daddy’s name was Hank. And my mother, she had three sisters. C: oh ok L: and my granddaddy would say, when you took Jan you took my cook, these other girls can’t cook like nothing. And I spoke up one time and said well Granddaddy you’re just gonna have to come stay with us. C: haha L: and my grandmother spoke up too and said no he can’t go.

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These two versions are not identical, though they include key components which remained relatively unchanged whenever the story was told: Grandfather’s joke about Greystone’s mother, Jan, which he apparently repeated frequently (‘‘would say’’ as representing habitual action and ‘‘one time’’ suggesting one of many) and the act of a child’s speaking up to a venerated elder. Author and memoirist, Shirley Lim comments We expect an embodied relationship between memory and the person remembering; the story is already imprinted indelibly, even before it is voiced or inked, in the synapses of the teller, waiting for the appropriate moment to be made visible to another (2003: 442).

Cultural narrative, the social expectations for what a person is to be and how that person is to have acted, is part of the act of reconstructing memory through the lens of the present; as Prager comments, memory is a ‘‘post-hoc representation of the past and not a return to the past’’ (1998: 215). Memory is intersubjective, it is ‘‘activity, actively symbolizing the self ’s relation to its own body and to its social world’’ (p. 219). As Vessey comments, in his response to Ricoeur’s Oneself as another, our narrative ‘‘is never simply our own’’ (2002: 3). Ricoeur’s discussion of sameness and the otherness which is implicit in that sameness, of idem and of ipseity, has been adopted in discussions of self and personal identity by a number of researchers. In a study of Holocaust narratives, Schi¤ et al. (2006) claim By definition, having an identity implies, first, that one is something and, second, that one is that something over a period of time. In Ricoeur’s (1992) terms, identity is both ipse, identity as character, and idem, identity as sameness (2006: 350).

Character represents acquired and innate attitudes and capacities including the desire to initiate something new. The sameness of identity reflects a spatio-temporal sameness and a fidelity to self: a person is both physical and intentional. In Langsdorf ’s (2002) interpretation of subjectivity in Ricoeur, she reviews ‘‘the anchoring of the self in a lived body that is agent and patient in relation to the world, and the ongoing composition of the lived body from physical constituents of other bodies during and after the process of birth’’ (Marsh 2002: ix). Following her analysis, and perhaps oversimplifying it, we may say that as long as we are telling a story we can be said to manifest an identity (ipse) if not necessarily the

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same (idem) identity our family members hold about us. Langsdorf comments, ‘‘As the self begins to narrate its own story it situates itself as both speaker, intending the world and all that is within it, and listener, belonging to the world as the particular sort of object who is addressed and thus a¤ected by another speaker’’ (2002: 50). Accordingly, as we narrate, we have both speaker and recipient design in mind: we perform identities when we ‘‘have some awareness of how the relevant personas constructed are likely to be perceived through their designs’’ (Coupland 2007: 146). That is, I am always whomever I am being/doing/performing at the moment while simultaneously being a me, receiving the attitudes or responses or actions of others to my being. Should the me be disparaged, the I can be halted from sharing further narration. There is no allegorical one-to-one correspondence between an unchanging, unchanged self and any particular story, because the self is fluid and changes with context and social interaction as well as from personal desire to reconfigure history around current perceptions of self. That memory which is important to the variously negotiated identities comprising the self (Schi¤rin 2003 uses the term ‘‘cluster of identities’’) becomes embodied in material things, in artifacts, in text, in repeated makings, in repeated tellings. In the next section, we examine two sets of repeated tellings, both focused on Greystone’s mother: how her mother made cakes, and how Greystone spoke up to her Granddaddy.

2. Greystone’s stories and accounts And I’d say well mother if it’s all the same to you mother just make me a ’lassy cake (Greystone, November 2005). This section deploys an intentional stance toward Greystone’s stories and accounts, assuming she had some reason for o¤ering rehearsed narrative, whether or not its frequency was a version of ideational perseveration and regardless of whether we might understand that reason. In addition to her two rehearsed stories about cakes and Granddaddy, Greystone also had two favored topics, her allergy to tomatoes and a comfortable chair, which were usually non-narrative. The non-narrative topics are, as Couper-Kuhlen (2007: 87) points out, tellings that are not ‘‘chronologically ordered sequence[s] with more than one event’’ and with little or no embedded dialogue. Di¤erent elements of information about the two topics, surface

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in multiple interactions; their summary is pieced together. Table 1 shows di¤erences in conversations about a chair Greystone had brought to Caregood Manor: it had been reupholstered and repaired, but it dated back to her work at a furniture-making company, and she had something to do with its construction, though the details are not clear. Usually, the context for an exchange about the chair seems to have impacted the details presented. In 2005, in a second conversation with Student K, she recalled that it could recline; in 2006, talking to two di¤erent students, she identified where it was made. Her exchange with Student B suggests they had visited the topic before; with Student W, six months later, she was focused on work in the mills: she identified the place of manufacture, but did not claim that she had made her chair. Likewise, Greystone’s allergy to tomatoes is sometimes part of her discussion about going to the hospital not long after moving to Caregood, sometimes part of the inventory about food grown on her farm, and at other times, a response to questions about food she liked to eat. Although the non-narrative accounts are well worth examining, particularly for how their elements are dispersed across di¤erent interactions, the remainder of this discussion will focus on the two performance narratives, both positive experiences from her childhood, and each connected to each other in time and place, as shown in figure 1, although recorded only once as part of a contiguous sequence. Figure 1 also displays the initiating context for both performance narratives: Greystone’s response to student conversation partner questions about cooking or sweets usually led to reminiscence about Mother’s being asked to bake cakes, and then to Mother’s baking the special birthday cakes. In the context of talking about the importance of family or about food she liked, Greystone often performed a narrative about speaking up to her Granddaddy as he talked about her mother’s cooking skills. As a young girl, one of eight children in a family of ten, Greystone clearly loved and admired her mother’s independent way of making extra money through her skill in baking fancy cakes, and that grounds Story 1, which has two main elaborations. It was this skill which led the mother to bake for strangers, with Greystone washing the cake pans, but which the mother also drew upon to make a special cake for each child – Greystone’s was a molasses or ’lassy cake, a detail that is incorporated in half of the cake stories. The mother’s cooking skill was greatly admired by Greystone’s granddaddy, who apparently had a performance comment of his own within the family, about how his best cook had been stolen from him when Greystone’s mother married. This comment, on at least one occa-

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Table 1. Conversations about the chair 2005 October Student K, 1st recording

2005 November Student K, 2nd recording

Me: I like your chair. G: Well, thank you dear, why I helped make this chair! Me: You did? G: I sure did! This is one of the last ones I helped make where I worked! [. . .13 turns, pointing to parts of chair and moving it] Me: Does it recline? G: I had one at home that did, I’m not sure if I brought that one or not. Me: Oh yeah! That’s great! You could sleep in that chair. G: I do once in a while.

G:

2006 March Student B, only recording

2006 November Student W, only recording

B: Yeah, it is nice here. G: This place, it really is! B: And you’ve got everything from home, don’t you? G: Uhh, hmm. B: You got your chair. . . G: Uhh, hmm. B: You made that chair didn’t you? Roena: . . .and this is the TV. B: Is that your TV? G: Yeah, and I helped make the chair, B: Oh, you did. Roena: . . .where I worked. B: Where did you work? G: Uhh. . .what was the name of it? B: The furniture factory? G: The furniture plant. . .

W: So you said you worked in the mills? G: Yes, Carolina Mills it was Cotton Mills they called it W: With your family? G: Well with my daddy and brothers but mother didn’t work she could have but she didn’t she stayed home and she need us I mean she needed to work W: Mm hhmm G: at home I don’t think mother ever worked there, but, the, my brothers and I did, I didn’t work all the time, I ended up in the furniture shop. W: oh okay, what did you do there? G: whatever we need to make we could make we made things like over there (pointing to a t.v. stand) on the uh chest on the uh and they made chairs like this or like you are sitting in. . .

Me: G: Me: G: Me: G:

Me: G:

Sit down and see how good that chair sits. I made that at my work. Oh okay. Oh, yeah, that’s comfortable! sit back in it. Does it recline? Yeah, you sit in here and push those arms back. Oh, yeah! It reclines! Yeah, it’s comfortable! Yeah, you can have a good time. I’ve worn it out one time and had to recover it Oh you did? Did you help make it? yep. It sleeps good

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Figure 1. Intersections of Cake and Granddaddy Stories

sion, evoked the young Greystone’s independence in looking up at him and ‘‘speaking up’’ to him, and that is Story 2. Each story becomes chronotopic as time and place are both indexed and interwoven (Schi¤rin 2009; Bakhtin 1981). The importance of material culture for memories of time and place (Casey 2000) is suggested by Greystone’s comments about having to wash cakepans to make cakes for rich ladies and references to Granddaddy’s old car bulging with fresh produce from the garden whenever he came to visit. In more than half the versions of the cake stories, Greystone is a character and reconstructs her own direct speech, summarizing what her mother said. In the Granddaddy stories, she is always a character, reconstructing his direct speech as well as hers, and including parenthetical commentary. We cannot say how many times Greystone may have retold these stories to the students or to the sta¤ at Caregood Manor; we can, however, date when they were recorded, and observe how days for recordings were

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clumped. During 2005, students recorded twice, usually the 4th and 9th sessions; in 2006, students recorded only once, during the 9th session. Retellings appear in roughly half of the recordings: while the students commented that she retold the ‘‘same’’ stories in most visits, the recorded frequency suggests that she may have assumed that students liked certain stories given the laughter she received at key points in the recordings from Fall 2005 interactions. It may also be that she wanted to retell these stories for her own benefit. In addition, there may have been some element of ideational perseveration: that is, an inability to monitor to whom she had told a particular story, on any particular day. This does not seem unusual, given the circumstances. Greystone was a¤ected by dementia, itself a progressive disease: in fall, 2005, she would have received between 120 and 150 short visits over a three-month period from students who began as, and probably remained, strangers to her, many of whom were inexperienced in conversing with old people. A more interesting question is whether these stories are really the ‘‘same’’ from one occasion to the next, and what might be the implications derived from their variations. Table 2. Retellings in student recordings Year

Term

Total student interviewers

Date range, 4th meeting 2005 only

retold stories (cakes and/or Granddaddy)

Date range, 9th meeting

retold stories (cakes and/or Granddaddy)

2005

Fall

1

9/28

— no retells





10/17–10/26

5 cake 2 Granddaddy 7 no retells of either

11/9–11/17

4 cake 2 Granddaddy 6 no retells of either

1





2/3

no retells

6





3/21–3/31

1 cake 1 Granddaddy 4 no retells of either

8





4/4

1 Granddaddy 7 no retells of either

1





11/8

1 cake

14

2006

Spring

Fall

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3. Analysis of retellings Hank, when you took Jan you took my cook! (Greystone, October 2005)

Research on language, conversation, and storytelling abilities by persons with DAT is still largely clinical, keyed to a deficit model that focuses on what a speaker loses as the disease progresses. The introduction of linguistic constructs from conversation analysis (Ripich et al. 1991; Perkins et al. 1998), sociolinguistics (Hamilton 1994; Ramanathan 1997), pragmatics (Ripich and Ziol 2000) and interdisciplinary approaches to discourse (Davis 2005; Guendouzi and Mueller 2006) has suggested the value of also looking at what is retained. The latter emphasis accords well with current work in psychology on social positioning and the retention of the social self by researchers such as Sabat and his colleagues (Sabat 2002; Hughes et al. 2006). Discourse problems as DAT progresses include problems with cohesion, shorter turns, breakdown in thematic structure, production of inappropriate events, failure to specify relevance of utterance, and, quite noticeably, greater problems with topic maintenance or management (Mentis, BriggsWhitaker and Gramigna 1995). In addition to perseverating with questions or single phrases (Is it dinner time yet?), topic repetition can be seen as ideational perseveration, either from an inability to monitor speech or to change mental sets (Perkins, Whitworth and Lesser, 1998). Dijkstra et al. (2002) note that in addition, as the speaker moves into mid-DAT, global coherence begins to fray while both local coherence and cohesion are problems in late-stage DAT. In a study of verbal repetition from the VISTA clinical trial, the Video Imaging Synthesis of Treating Alzheimer’s disease, Cook et al. (2009: 150) comment that verbal repetition was common for 79 percent of the patients enrolled in the study, and fell into 4 main categories: questions, statements, and stories, repetitive talk on a particular topic, and repeating words. Story-repetition showed great variability in terms of topic and frequency of repetition, and whether an apparent social context for the story was present, as with a patient who repeated conversational topics during social interaction without awareness of having done so, but at appropriate times within the conversation for him to be expected to take a turn and introduce a topic. In such a case, given the social context, the researchers decided that the repetition was ‘‘a result of impaired impulse control’’ (p. 150) as opposed to stuck-in-set ideational repetition.

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Given that the cake and granddaddy narratives, as well as the two nonnarrative accounts, showed some variation among components, keyed in part to the conversation in which they were included, it seemed appropriate to see whether the two narrative strands di¤ered in lexical or ideational density individually over time and in comparison with each other. Computerized Propositional Idea Density Rater (CPIDR 3), a computer program that determines the propositional idea density (P-density) of an English text automatically on the basis of part-of-speech tags (Brown et al. 2008) was used for the comparison. The construct of propositional density can be approximated by the number of verbs, adjectives, adverbs, prepositions, and conjunctions divided by the total number of words in the text. Brown et al. (2008) claim that idea-density is involved in understanding and remembering of texts. The program was originally applied to schizophrenic and schizaphasic language production (Covington et al. 2007). Both the number of ideas in a specific story, whether about cakes or about Granddaddy, and the number of words varied widely. At first it appeared that the stories on average reflected considerable decline between 2005 and 2006 for ideas and words, or story-ideas and story-elaboration, since her ability to care for herself and her willingness to converse were both diminishing. However, when we look at the story told in conversation with J, the only student she allowed to record her in November 2006, we notice that this rendition is closer to the average for 2005 and more expansive than any rendition in 2006:

Average Ideas

Average Words

Average P-Density

2005, Oct/Nov

76.5

155.2

.492

2006, Mar

35.7

74.7

.469

Nov: J

62

120

.517

This amount of variation is not that surprising: Maclagan and Mason (2005) used part of speech tags to examine language and narrative production in general over 2 years by a single person with DAT, Robbie Walters. Instead of showing a continued and precipitous decline, Walters showed similar highs and lows in production, though with some decline in the amount of words, keyed to how he felt on any given day, whether he was in the mood to talk, and whether he liked any of the topics. The ebb and flow of variation is shown in Figure 2.

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Table 3. Idea, lexical and propositional density in cake stories and Granddaddy stories Year

Student

Ideas

Words

Propositional Density

2005 Oct

A-1

Cake 41 Gdaddy 45

Cake 76 Gdaddy 80

Cake .539 Gdaddy .563

B-1

Cake 38

Cake 78

Cake .487

C

Cake 98 Gdaddy 27

Cake 195 Gdaddy 56

Cake .503 Gdaddy .482

D

Cake 38

Cake 84

Cake. 452

E-1

Cake 118 Gdaddy 60

Cake 234 Gdaddy 105

Cake .540 Gdaddy .571

A-2

Cake 63 Gdaddy 45 Gdaddy 91

Cake 125 Gdaddy 80 Gdaddy 144

Cake .504 Gdaddy .550 Gdaddy .632

B-2

Cake 155

Cake 318

Cake 487

E-2

Gdaddy 79

Gdaddy 157

Gdaddy .503

F

Gdaddy 81

Gdaddy 150

Gdaddy .503

G

Cake 61 Gdaddy 36

Cake 132 Gdaddy 66

Cake .462 Gdaddy .545

H

Cake 20 Gdaddy 36

Cake 46 Gdaddy 66

Cake .435 Gdaddy .545

I

Cake 52 Gdaddy 98

Cake 104 Gdaddy 178

Cake .500 Gdaddy .551

2006 Mar

J

Cake 35

Cake 74

Cake .473

2006 Nov

K

Cake 62

Cake 120

Cake .517

2005 Nov

The Granddaddy stories had, on average, fewer ideas (62.3), fewer words (112.9, and lower density (.494) than the cake stories, but both sets of stories presented interesting variation in what details were chosen to be replicated and which could vary, which are next examined. Looking at twice-told – or in Greystone’s case, ten-times-told – stories provides at least two kinds of information: what interests the teller and

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Figure 2. Idea density and word density of Cake and Grandfather stories

how the teller presents the story. In a valuable pair of discussions, Norrick (1998a) and Chafe (1998) examined repeated retellings; as Norrick comments, while Chafe ‘‘views repetition in his stories as evidence of a teller preoccupation, I would treat it as a strategic device for organizing conversational narrative’’ (p. 374), because even stable elements in a story, including performed quotation or dialogue, can vary, whether as ‘‘a production strategy or a stylistic strategy or both on the part of the teller’’ ¨ rulv (2009: 212) maintain that performative and (p. 375). Hyde´n and O

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evaluative features in the repeated stories they analyze are features that help convey values and norms that are part of a person’s identity. They add that the interaction between teller and hearer makes performance a joint e¤ort involving embodiment on both their parts, with non-verbal communication such as gestures and gaze. Bamberg (2008: 201) takes up the issue of identity in his discussion of twice-told tales by a woman named Betty, explaining that his analysis is ‘‘not aiming to reveal Betty’s identity, particularly her ‘real’ identity’’ nor is he ‘‘ascribing di¤erent or multiple identities’’ to her. Instead, he advises us to look at how Betty constructs di¤erent versions and ‘‘hails two di¤erent subjectivities (or ‘identities’, if you want to) into being’’ as a way to identity three dilemmas within the process of constructing identity: ‘‘i) the ‘identity dilemma’ . . . how it is possible to consider oneself as the same in the face of constant change; ii) the ‘uniqueness dilemma’ [being unique while being the same as everyone] and iii) the ‘construction’ or ‘who-is-in-charge dilemma’ [the person or the world]’’ (p. 203). In a study of four retellings of a Holocaust narrative, Schi¤rin (2003: 544) comments that ‘‘the shift toward performative narrative is suggested by the use of language to create a story world for those whose knowledge may be an insu‰cient background for understanding what happened.’’ In Greystone’s Granddaddy stories, she can assume that her hearers have or have known a grandfather, and probably have at least one family member who repeats a joke, story, or witty saying on family occasions. However, this frequently-repeated saying by Granddaddy has special meaning for Greystone because it signals family pride concerning the cooking ability of her mother, Jan, and family relationships: her father, Hank, took her mother away from the grandfather when they married. Using her parents’ names is important to Greystone in her story, which starts by being about mother, father, and grandfather, perhaps to signal verisimilitude, even though it quickly turns into a story about herself. Outside of the family, however, no one will know the names. She uses parenthetical expressions which have probably become routinized by this time in her life – she is in her mid-eighties when she tells her stories to the students – in order to keep the focus where she wants it, on the constructed speech she uses to dramatic e¤ect. The first three stories Greystone performed in October–November, 2005 and the last one, in April 2006, illustrate several key points that suggest her focus as a teller, as with Chafe (1998), and her strategies for telling, as with Norrick (1998a) even as she became less able to maintain cohesiveness and focus. Small caps identify words suggesting the habitual

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nature of Granddaddy’s jocular comment. Italics are used to indicate parenthetical comments. Brackets plus [Laughter] refers to laughter by the hearer; Greystone’s laughs are indicated by [laughs]. All-capital letters denote Greystone’s verbs for her saying and telling, allowing a glimpse of how she retains the ability to present di¤erent features of constructed dialogue (Tannen 1986). The examples from the Granddaddy-story performances suggest how Greystone handles elements of Bamberg’s two dilemmas by what she does not vary, the high point of her story and her narrative evaluation (Schi¤rin 2003; Olness 2006), and what she inserts as parenthetical explanations to her audience (indicated with italics). In each of the Granddaddy stories, certain elements are only minimally changed. In examples (a)–(d), while Greystone injects the anecdote into the conversation, it is in the context either of talking about her mother or about cooking, or a combination; this is also the case for the other performances. In each, her grandfather is represented as caring for his family, as proud of his daughter’s skills in comparison with her sisters, and as habitually joking with Greystone’s father. His constructed speech varies only slightly. Greystone positions herself as feisty and independent as a small child and presumably now as well. Her story shows her looking up at her much taller grandfather, and speaking up, meaning her comment was both unasked and unexpected. Slightly di¤erent views of Greystone and her family are presented in each version. In (2a), Greystone starts by talking about her mother’s cooking skills, stops the story with an evaluation after the exchange with Granddaddy, and moves the focus of the story from her mother to herself in two ways. The first way is her parenthetical comment that she was little when she spoke up to her grandfather, so that up has dual force: she speaks up, and she literally has to look up at him; the second way is the evaluation, that her family members continue to tease her about speaking up, although there is no way of confirming whether any of her generation are still alive: (2a)

[24 October 2005] G: My mother made really good cookies. M: mmm, what kind? G: All kinds, she used to cook for people, especially the ones with a lot of money, they had all kinds of parties, and when they’d want anything, they come to mother for it. That’s where she made her spending money. M: Like catering, kind of ?

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G: Yeah, it paid good too, she just charged what it took to make it. That’s the way she made her spending money. M: Yeah G: But she enjoyed it. M: Yeah, as long as your heart is in it, you don’t care. G: She enjoyed it. M: mmm hmm. . . G: My granddaddy would tell my daddy, ‘‘Hank, when you took her, you took the good food, can’t none of those other girls cook like her.’’ And I LOOKED UP to him, I was little, and SAID, ‘‘Granddaddy you just come live with us, then’’ [Laughter] G: They kid me about that yet. In the next turn, in the same conversation, Greystone segues into one of her cake stories; this is the only recording in which a cake story is contiguous to a Granddaddy story. Since she does not respond to the student comment about never getting in the kitchen, but instead explains her own comment about being kidded, we can assume that the act of kidding is how she is linking the two stories. [G: They kid me about that yet.] M: I never got in the kitchen much as a child. G: They boys used to always kid me because mama used to always ask us what kind of birthday cake we wanted, and I like molasses cake. M: Oh! I love molasses G: I said well if it’s all the same to you, make me a ’lassy cake, and that’s what I had and the boys didn’t like it. In (2b), parenthetical comments give the listener the names of her parents interspersed with the construction of Granddaddy’s direct address to her father. The story is used to illustrate her mother’s skills in cooking, and additional comments show the grandfather bringing food to the family from his garden: (2b) [25 October 2005] L: Well honey, I grew up with eight brothers and one sister, she was the oldest, and I was next to the youngest – we all learned to cook – and some of my brothers when my brothers they got married, taught their wives to cook [laughs]. But mother loved

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to cook – Her daddy always did tell my daddy, my daddy’s name was Hank – ‘‘Hank’’ – and mother’s name was Janet but they called her Jan – he said ‘‘Hank when you took Jan you took my cook, these other girls can’t cook nothing.’’ Well then I SPOKE UP AND SAID well granddaddy you just come stay with us – He’d come but he didn’t stay. But he had a big garden, he had a big barn. I can see that little car, he’d come up with everything in the garden and the fields he’d have in the car for us. In (2c), Greystone fumbles both for details about her mother’s family (‘‘I believe I don’t know how many sisters she had’’) and with how she wants to present the story. She is able to self-monitor and presents several instances of self-repair (‘‘my granddaddy rather’’). She adds parentheticals, first about the names of her parents and then, almost talking to herself, about her own momentary confusion, either about the then-time she spoke up or about the now-time in which she is trying to recover the story elements. She ends with summarizing what Granddaddy said in response to her perky invitation as opposed to her rendition of his speech in the other nine versions: (2c)

[9 November 2005] L: That’s the way she made her spendin’ money – making cakes for those folks. They’d tell her what they wanted and she’d fix them like they wanted them. Now she loved to make them. She grew up in Lincoln County. She had I believe I don’t know how many sisters she had. Couple brothers. And uh her daddy always – my granddaddy rather – always told my daddy – my daddy’s name was Hank and Mother’s name was Janet. They called her Jan. And I’ve heard Granddaddy tell my daddy, ‘‘Hank, when you took Jan you took my cook. Them other girls can’t cook for nothin’.’’ [Laughter] L: And I SAID – I was sorta, I don’t remember how it – anything about it – SAID I LOOKED UP AND SAID, ‘‘Granddaddy, you’ll just have to come stay with us.’’ [laughs]. He said he couldn’t come – he’d have to stay with Grandmother.

In (2d), five months and 5 more performances later, the story focuses again on her mother but in this version, while Greystone is still able to link the story to context, to add parentheticals about her parents’ names,

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and to present the major story elements in the right order to lead up to her punchline, she is having trouble with placement of additional details. To contrast her mother’s cooking with that of the mother’s sisters, Greystone apparently feels she must add that there were two or three sisters, but where she places that detail turns out to impede the flow of the anecdote, and she tried to use intonation, a brief pause followed by emphasis, to bridge moving quickly from her grandfather to her mother (My granddaddy – she came from Lincolnton): (2d) [6 April 2006] L: We really did. I heard mother say a million times about the ten children if she had to give one of us up. She’d say, ‘‘You can take me but you won’t get a single one of them!’’ [Laughter] L: That’s the way mother would tell them. But mother didn’t work in Carolina Mills, she had enough to do at home. But, uh, she did a lot of cooking. Those big shots in Maiden who had parties all the time, they found out that mother was a good cook. My granddaddy, [pause] she came from Lincolnton. She had two or three sisters there at the whole there. My grandfather. And my granddaddy always did tell me my daddy – my daddy’s name was Hank and mother’s name was Janet. They called her Jan for sh- short. And he’d say, ‘‘Hank, when you took Jan, you took my cook!’’ Their mother had two or three sisters left at home. ‘‘Them other girls can’t cook worth nothin’.’’ I SAID, ‘‘Well granddaddy, you’ll just had to come eat with us.’’ He says, ‘‘Grandma won’t let me.’’ However, the listener might have to be familiar with other performances to know that the Lincolnton detail characterized the mother, and that Greystone was not misstating something about Granddaddy. There is a slight pause between granddaddy and she, followed by slight emphasis on she: enough to signal a story’s re-start. The cake stories provide similar variations. In (2e), Greystone uses the same techniques for parenthetical comments which explain something the listener might not know, and directly asks her listener if she knows what a molasses cake might be: (2e)

[November 2005] G: Oh yeah! (laughs). Mother would always ask us what kind of cake we wanted for our birthdays. And let’s see, mine’s in July. She’d say, she called me sister half the time anyway, she’d say

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‘‘sister, what kind of cake do you want for your birthday?’’ And I’D SAY ‘‘well mother if it’s all the same to you mother, just make me a ’lassy cake.’’ You know a molasses cake? Does your mother make a molasses cake? (laughs) Yeah, molasses cake . . . but no I’ve never had one. Oh they were good. Yeah I’ll have to find one somewhere. I don’t remember just how she made it though. Yeah (laughs) I had my ’lassy cake for my birthday though (laughs). It’s just sorta like a . . . a plain cake with, you put the molasses in it. It’s soft . . . good, just a regular cake, very similar.

4. Implications . . . it could be that our struggle with the nature of the self-in-Alzheimer’s reflects our struggle to grapple with what it will be like, and what it will mean, to be and become old (Herskovits 1995: 160) Adopting the intentional stance can be a deliberate strategy; Herman (2008: 249) quotes Raymond Gibbs to the e¤ect that this stance, as an heuristic, becomes ‘‘the cognitive impulse to assume . . . that someone wrote [the] narrative for some intentional purpose’’ (Gibbs 2005). Lisa Snyder (2006: 265) comments about conversations between people in nursing homes, ‘‘by listening ‘as if ’ there is a message to receive, they engage in moments of mutual communication and connection.’’ We can choose to say about Lucinda Greystone that she told her many-times-told narrative for some intentional purpose and we can, like Herman (2008), begin to use her stories to see how she makes sense of her world. More, we can begin to make sense of what she is doing when she tells the stories. If we look only at the Granddaddy performances and the parentheticals that are Greystone’s attempt to create a common ground by furnishing information she thinks – or has been routinized into expecting – her hearer will need, we might think she is being egocentric in her conversation by relying more on her own desire to choose stories than on a collaboration to locate common ground (Kesckes and Zhang 2009). Looking at the context in which these stories are performed, we see that she o¤ers a fuller performance when she feels that somebody is listening,

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and expands whenever she is rewarded by laughter from her conversation partner. Rightly or wrongly, she acts on the assumption that she is being regarded as a real person, a competent conversationalist, who still has a story or two worth sharing. Looking at issues of embodied memory and identity with regard to persons with AD is more than an interpretative exercise. Herman (2008: 234) summarizes several discussions by the philosopher David Dennett on the intentional stance, noting that because it is ‘‘more fraught with assumptions,’’ it is the riskiest way to explain behavior, because adopting this stance means that ‘‘you treat the object whose behavior is to be predicted as a rational agent; then you figure out what beliefs that agent ought to have, given its place in the world and its purpose. Then you figure out what desires it ought to have, on the same considerations, and finally you predict that this rational agent will act to further its goals in the light of its beliefs . . .’’ (Dennett 1987: 17). The way unimpaired persons frame those with cognitive impairment has much to do with the degree to which advance directives can be framed. Klepper and Rorty (1999: 100) identify major components in arguments over advance directives: ‘‘Is this presently demented person the same person as the person who earlier expressed specific interests and preferences, and who made plans in advance about treatment options or other decisions?’’ Ten years later, on the heels of a debate that is still ongoing, Pierce (2009) notes that work on advance research directives in dementia is changing. New governmental directives for eldercare, with new ways of measuring quality of care for elders in long term care facilities and nursing homes, have begun to ask for the resident’s voice, from residents who, because of cognitive impairment, had not previously been solicited (Davis and Pope 2009). Including the voice of a resident with cognitive impairment will entail additional training for professional caregivers and sta¤ (Davis and Smith 2009); we find that even the minimal training in dementia care communication that we o¤er students gives them a starting point in revising their previous stereotypes about aging, older persons, and dementia, to judge from their brief comments in reflections (Hancock, Shenk and Davis 2009) and online evaluations (Smith and Davis 2010). Can we risk saying Greystone is really having conversations, telling stories-in-interaction if so many of them are retellings? Can we ask how tired might she have become of meeting the expectations of a series of young strangers who wanted her to talk and tell stories to them? If we take the intentional stance toward Greystone as suggested by Herman and Snyder, if we assume with Kesckes and Zhang (2009: 338) that

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Greystone and her listeners draw on both cooperation, ‘‘an intentiondirected practice and measured by relevance,’’ and egocentrism, ‘‘an attention-oriented trait and measured by salience,’’ then Greystone’s rehearsed, routinized retellings become something more than ideational perseveration or her stepping into a rehearsed self (Georgakopolou 2006: 128; cf. van de Mieroop 2009). Instead, they are her way of embodying her thoughts, those parts of memory she can access, those ways she can still retain of self-presentation as an interesting person that people come to visit and a competent person who can still tell a good story – even though she may not always be able to monitor it su‰ciently to keep from repeating it to the same person.

5. Recommended reading (1) Herman, David. 2008. Narrative theory and the intentional stance. Partial Answers 6. 233–260. Using the nineteenth-century scholarly debate about whether lines on the Runamo rock were runic inscriptions or naturally occurring cracks, Herman examines the way people adopt an intentional stance toward each other. His discussion of how this stance is grounded in story-telling practices is keyed to work on intentionality by the contemporary philosopher, David Dennett. (2) Snyder, Lisa. 2006. Personhood and interpersonal communication in dementia. In Julian Hughes, Stephen Louw and Steven Sabat (eds.), Dementia: Mind, meaning and the person. 259–277. Oxford: Oxford University Press. Drawing on first-person stories about the experience of having dementia, Snyder explains an intentional stance as an ‘‘as if ’’ stance that begins with assuming communication by a person with dementia is intended to have meaning. In the absence of such a stance, unimpaired persons all too often malignantly position the speaker with dementia.

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The Polysemy of Otherness: On Ricoeur’s Oneself as Another. Arobase 4(1/2). Retrieved July 22, 2010. from http://www.davevessey.com/ Vessey_Ricoeur.html

Non-lexical conversational sounds in American English. Pragmatics and Cognition 14. 129–182. Williams, C., R. Tappen, M. Rosselli, F. Keane and K. Newlin 2010 Willingness to be screened and tested for cognitive impairment: Cross-cultural comparison. American Journal of Alzheimer’s Disease and Other Dementias 25(2). 160–166.

Chapter 6 Body in autism: A view from social interaction Olga Solomon 1. Introduction Depending upon the field of inquiry, in molecular genetics, neurobiology, cognitive neuropsychology and allied disciplines, the locus of autism has been posited to reside endogenously, within the a¤ected person’s body: in the genetic make-up, the brain, or the mind.1 A more integrated view regards autism as a culmination of a sequence of anomalous events occurring at the genetic, developmental, neurobiological, physiological, cognitive, and behavioral levels (Minshew et al. 2004); however, true to seeing autism as residing in the body, it demarcates behavior as the most outer limit of the domain of inquiry. The popular culture’s view of autism foregrounds the body in a rather di¤erent way, through the common metaphors that capture perceived social inaccessibility. Specifically, ‘‘the body as impenetrable barrier’’ metaphor of autistic paucity of social displays depicts a¤ected individuals as imprisoned inside an invisible, unyielding wall, fortress,2 or shell, impossible to get through for those who try to reach the autistic person from the outside 1. There is an increasing awareness of the importance of examining autism as ‘‘located not ‘within the head’ of the person with autism’’ (Loveland 2001: 22), but within the autistic individual’s social and cultural environment. Arguing for an ‘‘ecological theory of autism,’’ Loveland (2001) voices her discontent with the limitations of most experimental approaches: ‘‘In the greatest tradition of experimental psychology, we have tended to search where the light is the brightest; thus, much of what we know about the social-a¤ective skills of people with autism comes from laboratory studies using simplified stimuli and situations. These studies are often intriguing and illuminating, but they usually focus on fairly narrow samples of behavior exhibited under special conditions (my own laboratory is no exception!). In short, they tend to lack ‘‘ecological validity’’ (p. 23). 2. The ‘‘fortress’’ metaphor echoes back to the widely criticized book by Bruno Bettelheim. 1967. The empty fortress: Infantile autism and the birth of the self. New York: Free Press.

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(Duchan 1998: 105–106). Siegel and Zimnitsky (1998) call this a ‘‘homunculus theory’’ of autism: a view that a developmentally intact child exists inside an autistic body.3 The possibility that this view may have some merit in that there may be a discrepancy between autistic individuals’ ‘‘performance’’ and their ‘‘competence’’ is a controversial issue4 that has been debated over the past three decades, especially in connection with the use of Facilitated Communication (see Donnellan 1999; Mostert 2001 for reviews from opposing perspectives). This chapter o¤ers a di¤erent perspective from both the neuropsychological and the popular culture’s views of autism. The notion of ‘‘body in autism’’ provides a lens to examine the socio-interactional consequences of impairments associated with autism for a¤ected persons’ participation in social life. The discussion bridges existing accounts of personal experience written by autistic individuals with the literature on the role of the body in social interaction. The chapter examines ‘‘body in autism’’ as ‘‘publicly visible’’ (Goodwin 2000: 1490) in the quotidian social life and is less concerned with identifying features of autism as a socio-communicative ‘‘dis-order,’’ and more with understanding the orderly, robust patterns of autistic persons’ (in this case, children’s) actions in social interaction. To this end, the concern of this chapter is with visible and audible behaviors that individuals diagnosed with autism and their conversational partners carry out in the course of mutual orientation and coordination of social actions. This social-interactionist perspective allows, to paraphrase Robert

3. This may be a consequence of the psychogenic theory of autism that saw the cause of autism in the relationship between the autistic child and the parents, especially the mother (e.g., Bettelheim 1959, 1967; Despert 1951; Goldfarb 1961; Kaufman et al. 1957; Meyers and Goldfarb 1961; Szurek and Berlin 1956). The parents’ emotional coldness was believed to have forced the child to withdraw from the world into an autistic ‘‘shell.’’ The psychoanalytic account of autism, widely accepted in the 1960s and 1970s, exemplified by Bruno Bettelheim’s (1959) article ‘‘Joye, a ‘Mechanical Boy’ ’’ in Scientific American, promoted the view that an autistic child is basically intelligent but withdrawn from human contact because of the parental lack of emotional warmth. 4. For a discussion on the issues of competence and performance, see M. Cole and J. S. Bruner. 1971. Cultural di¤erences and inferences about psychological processes. American Psychologist 26(10). 867–876; and M. Cole. 1996. Cultural psychology: a once and future discipline. Cambridge, MA: Belknap Press.

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Hopper (1997, 2005),5 to distinguish what social actors with autism do from what autism researchers may infer. The chapter considers two areas of interest: 1) coordination of action with those of others, i.e., whether and how children with autism and their interlocutors achieve coordination between vocal and non-vocal modalities of communication, (e.g., coordination of talk with corporeal/postural orientation, eye gaze and gesture), and how they participate in displays of mutual orientation and recipiency (Kidwell 1997, 2005); 2) observability of social action (Lerner and Zimmerman 2003; Kidwell and Zimmerman 2006, 2007, in press), i.e., whether and how children with autism display awareness that their social actions are observable to others (Ochs et al. 2004). The analysis presented in this chapter is based upon video-recorded interactions selected from two large data corpora: 1) the Ethnography of Autism project on the everyday life of sixteen 8-to-13 year-old highfunctioning children and teens with Autistic Spectrum Disorders (ASD) at school and at home6; and 2) a study of social interactions involving the use of ‘‘Rapid Prompting Method’’ (Mukhopadhyay 2008) with sixteen 5. Describing himself as a ‘‘cognitive agnostic,’’ Hopper (1997: 6; cf. Le Baron and Koschmann 2003: 119) insisted that researchers should ‘‘distinguish what actors do from what theorists may infer.’’ 6. The larger data corpus was collected in 1997–1998 in the course of an interdisciplinary project directed by linguistic anthropologist Elinor Ochs (UCLA) and clinical psychologist Lisa Capps (UC Berkeley). The data corpus was a complementary combination of experimental and ethnographic components. The experimental data included the measures of IQ (Wechsler Intelligence Scale for Children, Wechsler 1992) and Theory of Mind tasks (Baron-Cohen 1989; Baron-Cohen, Leslie and Frith 1985; Leslie and Frith 1988; Happe 1994). The parents were administered Autism Behavior Checklist (ABC; Krug, Arick and Almond 1978) and Autism Diagnostic Interview-Revised (ADI-R; Le Couteur, Rutter, Lord, Rios, Robertson, et al. 1989). The ethnographic component of the study included extensive observations and videoand audio-recordings at school and home. The recruitment of subjects was conducted through referrals from private practitioners, and clinicians associated with the Neuropsychiatric Institute and Hospital at UCLA and with UC San Francisco Medical Center. Sixteen families (eleven from Southern and five from Northern California) with 8–13-year-old children with intelligence in the non-retarded range (Full IQ greater than 70) previously diagnosed with autistic disorder (HFA) or Asperger’s disorder (AS) participated in the study. All children attended regular public school classrooms. The total data corpus consisted of approximately 320 hours of video-recorded interactions at school and at home before, during, and after family dinner, and 60 hours of audio data recorded in the morning at home and in the car in transit to

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8-to-17 year-old severely a¤ected children and teens with ASD at home and in educational and clinical settings.7 Considered together, these data a¤ord a view of the children and teens’ participation in social interaction that neither one of these sub-corpora alone would be su‰cient to provide. Specifically, the high-functioning children and teens’ data illustrate the degree to which they display and act upon observability (Lerner and Zimmerman, 2003) of their own and others’ actions; how they achieve the coordination between verbal and non-verbal modalities of communication (e.g., body posture and orientation, eye gaze, gesture, breath, and prosody) and the synchronization of verbal and non-verbal social behaviors between interlocutors that is fundamental to displays of mutual orientation and recipiency (see Kidwell 1997, 2005; Kidwell and Zimmerman 2006, 2007). The analysis of severely impacted children and teens’ data contributes to the understanding of most primary foundations of sociality and illuminates the range of non-verbal actions that the most a¤ected

and from school. Additional ethnographic information about the children’s schedules, daily events and social networks was gathered via parental interviews and participant observations in quotidian environments. This research was funded by the Spencer Foundation for Educational and Related Research (‘‘Autistic Children’s Narrative Interactions at School and Home,’’ 1997– 2000, Grant # 199800045 to E. Ochs and L. Capps; ‘‘Socializing Autistic Children into the Rules of School and Family Life,’’ 2000–2004, Grant # 200100115 to Elinor Ochs). The studies were approved by the University of California Los Angeles Institutional Review Board. 7. The video data for this study are part of a 500-hour archive collected by Portia Iversen for a documentary project at the Cure Autism Now Foundation. Approximately 100 hours of video involving 9 severely impacted children interacting with Soma Mukhopadhyay, teachers, clinicians, and parents were selected by the author. Additional data (approx. 80 hours) were collected by the author in the Los Angeles and Chicago areas of eight severely impacted children and teens ages 8–17. The study was supported by the National Academy of Education / Spencer Foundation’s post-doctoral fellowship to Olga Solomon (‘‘The ‘Rapid Prompting’ method of communicating with severely autistic children: a language socialization study,’’ 2004–2006). The studies ‘‘ ‘Rapid Prompting’ Communication with Severely A¤ected Children,’’ and ‘‘The ‘Rapid Prompting’ method of communicating with severely autistic children: a language socialization study’’ were approved by the University of California Los Angeles Institutional Review Board and by the University of Southern California Institutional Review Board, Health Science Campus, respectively.

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children are able to carry in mediated therapeutic and instructional environments (see also Ochs and Solomon 2005, 2010; Ochs, Solomon and Sterponi 2005; Solomon 2010). Finally, both data corpora shed light on the children and teens’ ability to evince embodied understanding of their own and others’ social actions.

2. Autism: Accounts and controversies Autism has been called an ‘‘enigma’’ (e.g., Frith 1989) and a ‘‘riddle’’ (Deuel 2002). Little consensus has been achieved in the past six decades regarding etiologies and interventions, although this did not stop the dominant accounts of autism from claiming certainty (Donnellan 1999). It has been argued that autism manifests in a highly recognizable form as a ‘‘triad of impairments’’ in children at all levels of intellectual functioning: social impairment (e.g., inability to engage in a reciprocal interaction); communicative impairment (e.g., lack or delay in language development); and absence of imaginative play. These impairments a¤ect all children independently of the level of functioning, which motivated the description of autism as a ‘‘continuum,’’ or a ‘‘spectrum’’ disorder (Wing and Gould 1979; Wing 1988, 1996, 2001). The dominant historical accounts of autism claim that it is 1) a disorder of a¤ective contact (e.g., Hobson 1991); 2) a disorder of ‘‘drive for central coherence’’ (e.g., Frith 1989) that results in processing information for local detail at the expense of processing for global meaning; 3) a disorder of the Theory of Mind that results in the inability to mentalize or infer beliefs, intentions, and knowledge of others (e.g., Baron-Cohen et al. 1985); 4) a disorder of the Executive Function that implies a deficit in planning and carrying out goal-directed actions (e.g., Hughes et al. 1994; Ozono¤ and McEvoy 2008; Russell 1997). The debates about ‘‘core deficit’’ status of each of these impairments abated over the past decade as it became clear that a core deficit model of autism, tenable from a purely cognitive perspective, is less viable when a neurological perspective is considered. A multiple primary deficit model is more consistent with the current information about brain dysfunction in autism characterized by a cluster of symptoms rather than in a single deficit (Minshew et al. 2004). Moreover, it has been suggested that the cluster of symptoms comprising the diagnostic criteria of autism (APA 2000) are descriptive interpretations of behaviors that vary according to professional and theoretical a‰liations, and thus should not be considered

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entirely objective (Donnellan 1999; Donnellan and Leary 1995; Duchan 1998; Leary and Hill 1996). The potentially critical consequences of functional limitations in sensorymotor and proprioceptive functioning have been largely overlooked in the existing diagnostic criteria. The argument that disturbances in sensorymotor function are an important characteristic of autism, however, is far from new (e.g., Ayres 1979; Ayres and Tickle 1980; Bram et al. 1977; Curcio 1978; DeMyer 1976; Maurer and Damasio 1982; Ornitz 1974), and it is supported by recent studies (Baranek 1999; Baranek et al. 1997a, 1997b; Ghaziuddin and Butler 2002; Mari et al. 2003; Noterdaeme et al. 2002). The sensory-motor issues in autism have not been extensively investigated because, as Donnellan (1999) claims, they ‘‘did not fit into the conventional understanding of autism as a problem of the mind’’ (p. 232). Furthermore, considering the role of restricted and repetitive behaviors in autism, Cuccaro and colleagues (2003) argue that these behaviors are not considered central to the disorder and are overlooked in research because no well-established methodology has been developed for their measurement and evaluation. Additionally, these behaviors are not specific to autism and have great variability across a¤ected individuals. Presence of these behaviors, however, is commonly believed to be associated with low levels of cognitive functioning (e.g., Turner 1999), which again raises the dilemma of descriptive interpretations of behavior, and the larger problem of performance versus competence discussed above. Indications that autism may not be only ‘‘a problem of the mind ’’ (Donellan 1999: 232) have abounded in autobiographical writings of autistic individuals. Personal accounts describe unusual reactions to auditory (e.g., noise, such as flying airplanes, vacuum cleaners, etc.), visual (e.g., problems with fluorescent light), tactile (e.g., rubbing of a collar against the neck) and olfactory (e.g., seeking out certain smells and finding certain smells unbearable) stimuli; integration of sensory information (e.g., not being able to see and hear at the same time); spinning and twirling of the body; seeking all-body pressure/holding environments such as a ‘‘squeeze machine,’’ crawling under mattresses, wrapping oneself in blankets, or wedging oneself into tight places (Grandin and Scariano 1986; Grandin 1995; Sinclair 1992; Williams 1994, 1998). The di‰culties with proprioceptive function in general and carrying out coordinated actions in social interaction in particular are described by Mukhopadhyay (2003):

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The boy had a problem to associate his reasons with his actions. He was aware of his mind working but not aware of his body acting. (p. 54) The therapy sessions with his Kaki helped him. He could feel his action better inside her room, as he squatted on the mat, kept on the floor. . . . She conversed with him. It was a one-sided speech but the boy was getting to feel his actions as he tried to pull the pencils or the biscuits from her hand. (p. 55) ‘‘So this is what they called trying was’’, the boy concluded. ‘‘The wanting to do an activity by using your body.’’ (p. 62) He understood ‘‘what’’ throwing was, but could not use his hands to do so. (p. 63)

Problems of perception of the body’s boundaries and of di¤erent parts of the body as a whole have been reported by Williams (1992, 1994, 1998), who writes that she had to slap herself to discover where the boundaries of her body were. Mukhopadhyay (2003), the youngest author,8 writes about a similar experience: . . . sometimes I felt my body was made of just my head while sometimes I felt that it was made of just my legs. It was very di‰cult to feel the complete body when I was not doing anything. . . . Sometimes I had to knock my head or slap it to feel it. Of course from my knowledge of biology I knew that I had voluntary muscles and involuntary muscles. I also knew that my hands and legs were made of voluntary muscles. But I experimented with myself that when I ordered my hand to pick up a pencil I could not do it. I remember long back when I had ordered my lips to move I could not do it. (p. 117)9

Mukhopadhyay (2003) also describes the problem with multi-modal perception:

8. Tito Mukhopadhyay was 8 when he wrote The Voice of Silence and 11 when he published Beyond the Silence. 9. One does not have to be autistic to have similar experiences. Describing a dilemma very similar to the one described by the autistic authors, Bakhtin (1990) writes: ‘‘. . . when my own reality becomes doubtful for some reason, when I do not know whether I am dreaming or not, the mere visibility of my own body is not enough to convince me: either I must make a movement of one kind or another or I must pinch myself ’’ (p. 42).

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. . . it helps all the senses to work together. I had a definite problem. When I concentrated on the sound, I felt my eyes and nose shutting o¤. I could never do anything together at the same time. That is, I could not see you and at the same time hear you. My sense of hearing was always sharper than my sight. This is the reason I never used my eyes to interact with anybody. Psychologists call it ‘‘lack of eye contact.’’ (p. 118)

Most of these disturbances are not clinically observable and may be identified and measured only with specialized tests. For example, research on ‘‘body maps,’’ especially of hands and face, in somatosensory cortex of autistic individuals identified anomalies that disrupted orientation in space and sensory-motor functioning (Buonomano and Merzenich 1998).10 Bonneh and colleagues (2008) confirmed the autobiographically reported tendency (Mukhopadhyay 2003) for mono-modal perception, which precludes an autistic person from perceiving visual and auditory information simultaneously. In fact, Tito Mukhopadhyay himself, along with Temple Grandin, was a participant in the study. This line of research forces certain re-evaluations of past and present conceptions of autism. Kanner’s (1943) concept of ‘‘autistic aloneness,’’ a sign of which is the inability to assume an anticipatory posture when a child is about to be lifted by an adult, can be seen as a consequence of sensory motor anomalies rather than of a¤ective withdrawal. Results of many studies change meaning when sensory-motor challenges enter the picture. For example, a series of experimental studies (Mundy et al. 1986; Mundy et al. 1990; Sigman et al. 1986) investigating young autistic children’s social abilities involved tossing a ball (see Mukhopadhaya 2003 above on problems with initiating a throwing movement) and tickling games. The results of these studies showed that autistic children were as responsive and playful as typically developing and mentally retarded children in two control groups but more passive: they did not make eye contact and give or show toys to the caregivers.

10. McGonigle et al. (2002) write: ‘‘clinical and experimental observations suggest that . . . the state of the motor system can influence subjective perception of the body. The information can take a number of di¤erent forms (Jeannerod 1997), such as the initial spatial configuration of the body before movement, the predicted goal of the movement (rea¤erence), or the predicted sensory information (the consequences of the movement). However, our daily sensation is typically a unitary self rather tan multiple separate ‘visual,’ ‘proprioceptive’ or motor ‘selves’ ’’ (p. 1265–1266).

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Considerations of sensory-motor challenges should be included in interpretation of research findings to include the possibility that observable behaviors (e.g., being more passive) may be linked to limitations in sensory processing, motor planning and language (Ayres 1972, 2005; Donnellan 1999; Greenspan and Wieder 1999; Murray and Anzalone 1991). Thus, it becomes necessary to re-interpret the behavioral descriptors that are used as diagnostic criteria for autistic disorder and other autistic spectrum conditions.

3. Phenomenology of embodied social behavior The concern with the body as the experiencing and the experienced aspect of human perception has been embraced by phenomenological psychology, which integrates empirical and phenomenological approaches in therapeutic and research domains. This interdisciplinary field draws extensively upon Martin Heidegger and Maurice Merleau-Ponty’s writing to consider the human body as a bearer of meaning: ‘‘the body of gesture and motility. . . , an emerging body . . . of deep ontological understanding’’ (Levin 1985: 5; Shapiro 1985). Heidegger’s hermeneutic phenomenology considers the spatial character of embodiment and the limits of human perceptual and gestural capacities. He ponders the ontological possibility of being touched; the nature and modalities of hearing; the characteristics of speech; and the sensibilities of vision (Heidegger 1962). Examining the origins of scientific theory in connection to seeing, he contrasts vision as a way of being-in-the-world with vision as a cultivated skill (e.g., by a painter) that transforms every act of seeing (Heidegger 1977). These philosophical notions intersect with recent writings on ‘‘professional vision’’ and practices of seeing, and seeing as a situated activity (Goodwin 1995, 2000, 2003). Visual access to others’ social displays and relevant loci of physical environment are central to participation in face-to-face interaction. For example, Goodwin (2000: 157) writes: A primordial site for the analysis of human language, cognition and action consists of a situation in which multiple participants are attempting to carry out courses of actions together while attending to each other, the larger activities that their current actions are embedded within, and relevant phenomena in their surround. Vision can be central to this process. The visible bodies of participants provide systematic, changing displays about relevant action and orientation. Seable structures in the environment can not only constitute a locus of shared visual attention, but also contribute crucial semiotic resources for the organization of current action.

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Heidegger informs our thinking about autism and autistic perception in unexpected ways. Taking an existential stance to unfolding experiential processes, Heidegger (1968) articulates the importance of opportunities for an ontological development of human perceptual capacities. He makes an important connection between perception and opportunities for its development as consequential to the embodied, gestural, and motile nature of ‘‘being in the world,’’ and of ‘‘being with others.’’ In short, as Levin (1985: 42) writes, Heidegger’s analysis of perceptual and gestural capacities is a ‘‘contribution to an ontological understanding of embodiment.’’ Medard Boss (1979) further elaborates on this notion by considering the development of perceptual capacities in relation to responsiveness and receptivity as direct consequences of human experience of perception, of gesture, motility, and bearing of the body. Interested in ‘‘immediately accessible opportunities’’ (cf. Levin 1985: 60, 61) for perceptual development, Boss articulates a direct connection between perception and opportunities for social learning, responsiveness, and receptivity that prepares the theoretical ground for understanding ‘‘body in autism’’ from a socialinteractional perspective. The social nature of human perception, Levin (1985) argues, underlies human action in ‘‘the cooperative project of living an ontologically adequate conception of our bodily nature, our embodiment’’ (p. 31–32). In MerleauPonty’s phenomenological theory of motility (1942/1963, 1945/1962, 1964/ 1968), embodiment is a way of inhabiting and setting in motion a certain kind of a social body, and motility is the body’s meaningfully organized behavior. Development of culturally organized motility takes place by virtue of ‘‘being-with-others’’ (Levin 1985: 93–94). In the course of child’s development, motility becomes restricted and organized by purposeful action, by the choreography of possible movements. This choreographed, restricted way of motility, as experience and as understanding, are necessary for typical development and in fact brings forth the standards of normality and the ontology, which reflects this standard (ibid.: 101, 102, 104). In summary, the way we meaningfully engage our bodies in the presence of, and in response to, others, is engendered by our perception and by opportunities for development of motility and gesture in social interactions. Our motility reflects our socialized understanding of the social situation at hand and of the possible ways of participation in it. Thus, sensory experiences and perception can not be considered separately from motility and gesture (i.e., ‘‘motor functions’’), which cannot be, in turn, separated from meaningful embodied participation in social interaction.

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4. Sensory-motor abilities and participation in social interaction ‘‘If the body had been easier to understand, nobody would have thought that we had a mind,’’ wistfully writes Richard Rorty (1979). The body seems to be the most overlooked and ‘‘taken-for-granted’’ constituent of the human communicative system. There is not a well-established, or even adequate, genre of speaking about the body in a social-interactional sense, and few satisfactory ways to visually illustrate analytic points in academic texts (see Goodwin 2000). For decades, studies of language of most theoretical denominations treated it as an entirely disembodied phenomenon. This situation changed when Ochs and Schie¤elin (Ochs 1986a, 1986b, 1988; Schie¤elin and Ochs 1986; Schie¤elin 1990) put forth the field of developmental pragmatics, later called ‘‘language socialization,’’ which took into consideration the embodied nature of language use and its socialization, as children’s ‘‘exposure to and participation in languagemediated interactions’’ (Ochs 1986a: 2) with members of their families and communities. Ochs and Schie¤elin (1984) argued that physical positioning of children within cultural activities represents a powerful resource for language socialization, a process through which children acquire the tacit knowledge of beliefs and social order. This knowledge allows them to recognize what social activity is taking place and to act in culturally appropriate ways.

5. Interlocutors’ physical manipulation of children’s corporeal orientation Practices of monitoring and shaping of bodies are inherent in institutional settings (Bourdieu 1977, 2004; Jackson 1983, 1998) that can be understood as ‘‘the body management systems’’ where the manipulation and the monitoring of the body is a precondition to the institutional order (Christian 1997: 31). To illuminate how autistic children’s bodies are manipulated and managed in response to their actions in school and family settings, this essay follows Maynard (2005: 500–501), who writes, ‘‘The orderliness in conduct is the target of inquiry . . . the designations of social problems and deviance in participants’ own organizing conduct . . . what a deviance designation-in this case, the term autism as a diagnostic categoryglosses in the concrete interactions and practices of co-participants.’’ Analysis of video-recorded interactions of autistic children with family members, teachers, and peers illustrates that both adult and child inter-

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locutors take action to accomplish coordination of social action with autistic children by physically manipulating and configuring their bodies into an orientation that a¤ords a common focus of attention. Identifying these practices sheds light on the aspects of autistic children’s social behavior that adult caregivers and peers perceive as in need of manipulation and mediation. 5.1. Head as ‘‘anchor’’ of attention Both severely impacted and high-functioning children have been observed to be subjected to ‘‘head-holding’’ by adults and peers in the course of social interaction. This kind of practice is commonly used by Euro-American caregivers with infants, holding them in a position as shown below (Deuel 2002):

The severely impacted children, however, were engaged in such ‘‘headholding’’ by others more often and for longer periods of time. Additionally, because these children spent a significant amount of time with teachers and clinicians, these adults were often observed to engage in the ‘‘head-holding’’ practices. Consider, for example, the following interaction in which a 9-year-old severely a¤ected boy, Lev, is being assisted by his aide in a speech therapy session (see Ochs, Solomon and Sterponi 2005 for prior analysis of this segment):

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(1) Therapist: ((turns to face Lev))

Your turn!

Aide: Try Lev. ((holds Lev’s head with her left hand to face therapist and flashcard, and points to flashcard with her right hand, then holds down Lev’s hand ))

The aide holds Lev’s head in place to ensure a face-to-face orientation expected of him by the speech therapist. Moreover, the aide points to the flashcard held by the speech therapist, to further organize Lev’s attentional focus. At yet another moment in this interaction, the aide continues to hold Lev’s head while also holding down his right hand, to prevent him from moving out of the attention-displaying posture. High-functioning children with autism have been subjected to such head-holding mostly by their peers. In the following example, Karl, a 9-year-old boy with HFA, is being oriented by his typically developing friend, Sol, during recess, throughout their interaction in the school playyard: this is a progression of the children’s movement across the school yard over several minutes. It is important to notice that even though the boys move across the social space, change their corporeal positions from walking to standing to walking again (at some point, not shown here, they are sitting on the grass and Sol is orienting Karl’s head to look at him), Sol continues to hold Karl’s head using both right (Time 1, 2 and 3) and left hand (Time 4) and orient him to common visual foci:

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Time 1: walking across grassy field

Time 2: walking to the blacktop area

Time 3: walking across the blacktop

Time 4: standing on the blacktop and observing peers

In yet another school, an 8-year old boy with AS, Mark, is being anchored by a typically developing peer who is momentarily holding Mark’s head in an attempt to secure his participation in a table game with his three fellow-students:

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Compared with the head-holding practices employed by adults who seemed to position the autistic child’s body in a fixed face-to-face orientation in clinical or educational settings, peers were using head-holding to mediate a certain kind of participation by the autistic child in an on-going activity that included multiple and changing foci of attention, often in multi-party social situations. 5.2. Body-sca¤olding Organizing the whole postural configuration of the child by sca¤olding his or her body was another practice identified in the data. Consider the following examples involving Karl, the boy in the first example above walking with his friend Sol. Both Karl’s teacher and his classroom aide repeatedly engaged in the postural positioning of Karl’s body during reading or writing assignments. In the examples below, the aide guides Karl’s hand in a writing activity, while the teacher appears to demarcate Karl’s attentional field to limit it to the area immediately in front of him, albeit not entirely successfully as he is looking under the desk

Body-sca¤olding: Teacher

Body-sca¤olding: Aide

Another HFA child, an 8-year-old, Calvin, was also corporeally scaffolded in this fashion by an occupational therapist who worked with Calvin in his classrooms twice a week. In the first image below, Calvin is playing a game with two peers while the occupational therapists holds him ‘‘in place’’ by body-sca¤olding and holding down his left hand so he could use his right one. In the second image she sca¤olds his body by sitting behind him and holding his left hand while guiding him in writing with his right hand:

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Out of the sixteen children in the HFA group, however, Karl appeared to be engaged the most by his interactional partners in such body-organizing practices, possibly because he was perceived by them to be in need of such corporeal mediation. On the other hand, these practices appeared to accomplish Karl’s successful participation in on-going activities, both on the playground with his peers and in the classroom during written and reading assignments. Similar body sca¤olding practices have been employed by an adult instructor while teaching a severely impacted 8-year-old child with autism to use the ‘‘Rapid Prompting Method’’ (Mukhopadhyay 2008). In this picture, the boy is being guided to orient to a piece of paper on which the adult is writing two candidate answers to a question, one of which they boy will be prompted to indicate seconds later, as portrayed below:

The severely impacted children are first taught to indicate one of two written replies to a specific question, and later are ‘‘brought onto the board’’ (expression used by the practitioners of this method in the community that the author studied) to indicate letters and numbers in order to form replies. This transition appears to bring about a practice that is directed to a certain kind of hands and fingers configuration.

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5.3. Hands and fingers configurations into index-finger pointing gestures Created to teach non-speaking, severely autistic children to communicate, the ‘‘Rapid Prompting Method’’ (Mukhopadhyay 2008) involves tactile, visual, and linguistic stimuli that focus the child’s attention on written alphabetic and numerical symbols, which the child is repeatedly and rapidly prompted to indicate. The indicated letters or numbers form utterances in response to specific questions intended for instructional purposes or for conversational exchange. Many of the children, however, have never pointed a finger to anything in their entire lives and thus need to be taught the practice of indication from the very foundational level: forming their hand into a gesture of index-finger extension. The process of such learning is illustrated in the pictures below, where Lev is learning pointing for the first time (image on the left). Five years later, Lev is able to perform academically at grade level and is being home-schooled studying 6th grade curriculum. In the picture below, Lev is pointing to a letter ‘‘I’’, spelling the word ‘‘Inauguration’’ (image on the right). The image is recorded as reflected in the mirror behind the couch where Lev and his teacher are sitting, and thus represents a mirror reflection of the actual interaction (see Ochs et al. 2005):

Before moving on to the discussion of the second focus of the chapter, conversational turn-taking, it is important to ponder the analytic significance of this corporeal sca¤olding and hand/finger configuration. First, the pervasive quality of this practice indicates that interlocutors of children with autism use it to assist the children with participation in social activities with them. Like immature interlocutors, both HFA and SI children are corporeally manipulated and configured into participatory postures that mediate their further participation in co-constructing courses of action with their social partners. It is critically important to note, however, that the children

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with autism in the study are active and collaborative participants in such corporeal sca¤olding, who not only allow others to hold their heads, mold their hands and fingers, and tower over their bodies, but also engage in collaborative co-construction of mutually recognizable, meaningful, activityspecific courses of action with them. No amount of head holding, hand/ finger molding and corporeal sca¤olding would be su‰cient for the success of such interactions if the children with autism did not play their part by accepting these bodily configurations as organizing and mediating actions performed by others. 6. ‘‘Body in autism’’ and the turn-taking organization of social interaction Unlike social and cognitive psychological research traditions that seek to identify compensatory strategies that individuals with communicative challenges may develop to employ available communicative resources (e.g., linguistic and gestural abilities) to achieve mutual comprehension (e.g., Anderson et al. 1997), the ethnomethodological approach employed in this paper regards as a resource the general organization of action in talk-in-interaction, i.e., the organization of courses-of-action realized in sequences of turns (Scheglo¤ 1995, 1999a, 1999b, 2006). Specifically, the ‘‘procedural infrastructure of interaction and talk-in-interaction,’’ ‘‘the solid, stable, binding structures’’ (Scheglo¤ 1999a: 426, 427) of conversational turn-taking and sequential organization constitute a resource that supports the coordination of social action and thus co-construction of meaning between communicatively impaired and neurologically intact interlocutors. Alternatively, the interactional breakdowns and mis-understandings become that, and are analyzable as that by interlocutors, only within the organizing stability of social interaction (Scheglo¤ 1999b). Thus situated analysis of autistic persons’ participation in social interaction may shed light on the nature of the gap between their interactional competence that emerges in structured testing and experimental situations and the results of systematic micro-level analysis of everyday social interaction between autistic persons and these familiar interlocutors. Within this theoretical framework, competent participation involves: simultaneous use of multiple semiotic resources. . . , a range of structurally di¤erent kinds of sign phenomena in both the stream of speech and body, graphic and socially sedimented structure in the surround, sequential organization, encompassing activity systems, etc. (Goodwin 2000: 1490) displays of . . . orientation to the relevant organizational dimensions within which . . . interaction is being realized. (Scheglo¤ 1999a: 424)

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Thus the mutually elaborated use of language and the deployment of the body (i.e., the use of corporeal conduct to accomplish non-vocal social actions) to display orientation to co-participants in interaction and to relevant semiotic fields (Goodwin 2000; Scheglo¤ 1999) are equally significant. What emerges from this theoretical framework is an ‘‘alternative geography of cognition’’ (Goodwin 2000: 1490), which is regarded as a public, social, ‘‘reflexively situated process that encompasses both the sign-making capacity of the individual, for example through production of talk, and di¤erent kinds of semiotic phenomena, from sequential organization to graphic fields, lodged within the material and social environment’’ (op. cit.). Thus articulated, this perspective moves the discussion of autistic persons’ participation in social interaction away from medically and psychologically oriented discourse and allows for a richer analytic ground, as well as new lexicon, from and with which to consider its complexity.

7. Autistic children’s coordination of talk with postural orientation and eye gaze In a study of everyday narrative introduction practices of high-functioning children with autism and Asperger syndrome, Solomon (2004) observed that the children often initiated narrative co-telling when there was an extended pause that served as a definite and lasting activity boundary within which the children appeared to silently gear themselves up for launching a narrative introduction. It appeared that it took these children a significant amount of preparatory work to align their bodily orientations, and eye gaze with their voice. An example of such a phenomenon is demonstrated in the following segment in which Angela, and 11-year-old HFA girl, is having dinner with her mother, and two older siblings, brother Eddie and sister Kelly. The dinner conversation previously focused on an auction activity in Angela’s classroom, familiar to both Kelly and Eddie because they went to the same elementary school that Angela is attending. The conversation is interrupted by a work-related phone call summoning their mother away from the dinner table:

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(2) Mother Angela

((answers the phone)) Hello (.)Yea:h! ((through laughter, repeats Eddie’s last utterance about a lost phone)) [What was it doing in the gara " ge? Mother [((on the phone)) ((UI)) I am fine.  hey she is talking you guys  ((clears up her throat)) Kelly Mother ((on the phone)) I just changed one upstairs! (6.5 sec pause) Angela: ((chewing quietly, looks into the kitchen))

Kelly Angela Eddie Angela

Angela

((serves herself more food)) ! ((changes the direction of her gaze and looks at Eddie for 2.5 sec before beginning to speak)) ((eats looking down at his food)) ((chewing a piece of apple)) ! Eddie! (5.0 sec) ((looks at Eddie, who is not looking up from his food and not displaying recipiency; Angela’s body orientation is now changing away from facing Eddie))

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Mother Eddie Angela Eddie Angela

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[((talks on the phone in the back of the house)) [((continues to look down at his food for 2 sec before looking up at Angela)) ((begins to hum)) ! ((finally looks up at Angela)) ((stops humming; looks at Eddie silently for 1 sec slightly clears up her throat)) ! On my report card? uhh- ((smiling voice, gesticulates with right arm still holding a piece of apple, waving it in the air))

! Oh I know (.) you alrea-hdy (.) know this ((breathy))  but (.) ! I got an A " in ((sing-song voice)) hi"s-to:#-ry: [ Uhu [((on the phone)) That was the last ((UI)) and so:¼ ¼I saw your report card when it was [on your bed [Good job!

In the opening lines of this interaction, Kelly, the oldest of the three children, reminds Eddie and Angela to be quiet as the mother is speaking on the phone to a co-worker. Eddie and Angela respond with a 6.5 second-long silence. Before breaking the silence with her narrative initiation, Angela looks at her brother, who is eating and looking down at his food, for 2.5 seconds. Then she elicits his attention using the vocative ‘‘Eddie!,’’ and waits for 5 sec for Eddie to look up at her, all the while changing her body orientation away from Eddie’s place at the table. It is possible to wonder if it is the lack of response on Eddie’s part that loosens the organizing properties of turn-taking, where Angela, not receiving a

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second-pair part response to her initiation, is beginning, so to speak, to fall through the interactional cracks as her brother is not coming forth with a response. After 5 seconds of waiting for Eddie to display his understanding of his projected addressee status, Angela, as if bidding her time, begins to quietly hum to herself, and 2 seconds later Eddie finally looks up at her. Her waiting for this long period of time, even as she is humming to herself, indicates her embodied, displayed expectation that an addressee is supposed to be at least acknowledging recipiency with, minimally, an eye gaze, if not a vocal response. The very moment Eddie looks up and Angela makes eye contact with him, she stops humming, thus displaying her understanding that she is now in the position of a speaker. She remains silent, however, for a full second, on the interactional scale, quite a long time, as if making sure that Eddie is now orienting to her and gearing herself up for addressing him. Then Angela slightly clears up her throat and launches a narrative initiation: Angela

! [On my report card? ! Oh I know (.) you alrea-hdy (.) know this ((breathy))  but (.) ! I got an A " in ((sing-song voice)) hi"s-to:#-ry:

In spite the seemingly laborious e¤orts to coordinate the body posture with eliciting and waiting for a response from Eddie and subsequently launching a narrative introduction, Angela masterly co-constructs a course of action with her siblings while her mother is speaking on the phone. Moreover, Angela competently accomplishes the introduction of a narrative of the kind that is most di‰cult to successfully launch, one that does not have a high tellability because the events are already known to the addressee. First, she calls for Eddie’s attention and waits for him to return her gaze. She acknowledges that the telling may be already familiar to Eddie (‘‘Oh I know (.) you alrea-hdy (.) know this, but’’) whom she frames as her primary recipient, while at the same time presenting the telling as nevertheless newsworthy. Her initiation receives positive uptake from both Eddie and Kelly signifying that this disjunctive narrative was initiated in a recognizably conventional and appropriate way. This child’s ability to refer to her own understanding of her interlocutor’s background knowledge (‘‘I know you already know this’’) might be theoretically rather unexpected (e.g., Baron-Cohen 2003). However, Angela’s competent use of this kind of reference to initiate a narrative co-telling should be integrated into our understanding of autism.

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8. Observability of action – having to explain a ‘‘body in autism’’ In a study of school inclusion as a social practice, Ochs et al. (2003) established that high-functioning children with autism attending regular classrooms at times experience isolation, rejection, and scorn by their peers. The question remains, however, how much of this rejection and scorn autistic children may attribute to their bodily movements, such as spinning, arm flailing, hand flapping, etc. Consider the following interaction in which 11-year-old Erin is sitting alone on a schoolyard bench, watching the other children play kickball. As her legs begin to jiggle and her hands flap, Erin begins rhythmic vocalizing and repeated nodding of her head. In the middle of Erin’s ‘‘stimming,’’ several children approach the bench, and immediately make Erin accountable for her behavior (see Ochs et al. 2001 for analysis of this interaction related to school inclusion): (3) ! Jenny: [What’s your " problem # [((sits down some distance from Erin)) [((Another girl approaches, looking at Erin)) Erin: ((ceases repetitive movements and vocalizations but holds teeth clenched, turns to look towards Jenny and Gary)) ! Gary: [What the [heck is "she doing [((leans towards Jenny)) Jenny: [((looks towards Gary, half-smiling, shrugs shoulders)) In response, Erin stops the repetitive vocalizations and bodily movements, but then resumes them. As she does so, two other girls, Katie and Alison, sit down on the bench facing Jenny, with their backs turned towards Erin. The children seem to huddle together, as if bracing themselves in their normatively organized world against Erin’s behavior. Erin then tries to interactionally separate Alison, who is usually her friend, from this disapproving group, by looking at her and calling out her name. Moreover, she makes her call more salient by hitting her knuckles on the iron bench, which produces a rhythmic accompaniment to Erin’s voice calling Allison’s name. Erin leans over Alison’s shoulder:

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(4) Erin: [Alison! ALISON! [((looks towards Alison)) (( pause)) [Watch this! [((raps knuckles on bench)) [Watch this. [((scoots down bench and leans over Alison’s shoulder)) As Alison does not respond, Erin makes one more attempt to secure her attention: (5) Erin: [Alison! [((breathy voice, presses palm forcefully on bench)) (( pause)) Erin: [Watch. [((breathy voice, moves back to end of bench)) Watch this! Alison demonstratively and deliberately does not respond. Moreover, she shields her eyes with her hand, as if not to see Erin. After several seconds, however, she turns to face Erin, and once Alison’s attention is secured, Erin greets her eye gaze with a triumphant smile. Then Erin resumes the jiggling and vocalization as a demonstration and a performance of the stimming of which just moments ago her peers so adamantly disapproved. She then halts suddenly, her hands in midair, staring at her classmates with a grin, as if expecting a positive uptake of her performance. None is forthcoming, however, as some of the children turn away and others, led by Gary, form a judgmental chorus, referring to Erin in the third person: ‘‘What the heck did she just do?’’ At this, Erin gets up and runs o¤ into the play yard. This example suggests that a child may attempt to account for the bodily manifestations of autism when faced with peers’ scorn and rejection. Moreover, Erin’s deliberate performance of ‘‘body in autism’’ indicates that she knows exactly what actions, out of all her observable behaviors, were the cause of the peers’ negative comments, and for what she was being held accountable by them.

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9. Conclusion This chapter has o¤ered an ethnographically informed social-interactionist perspective on autistic children’s embodied participation in everyday interaction. Through examination of practices employed by adult and child interlocutors, such as head-holding, body-sca¤olding, and hand-finger molding I showed that interactional partners engage in postural re-configuration and sca¤olding of autistic children’s bodies as a practice that appeared to be reflecting what these partners perceived was ‘‘missing’’ in the children’s social behavior. These practices also make visible the ethnomethodologies that adults and peers form when encountering neurological di¤erences imposed by autism (such as impaired joint attention) and attempting to mediate autistic children’s participation in social activities. While analysis of practices directed at ‘‘body in autism’’ may reveal what teachers, therapists, and peers of autistic children perceive as requiring an ‘‘intervention,’’ we do not have much information about what children with autism are experiencing as recipients of these interventions. The drive for intervention permeates clinical and educational discourse on autism, but there is very little attention paid to the potential impact of these e¤orts on autistic children’s experience of their own and others’ agency and intentionality. There is a need to re-think the habituality with which those with autism are corporeally manipulated and configured into participatory postures by their social partners. It is easy to overlook that in the course of these manipulations the child with autism is collaboratively engaged as an active participant in co-construction of mutually recognizable, meaningful, activity-specific courses of action with others. When it is accomplished, the success may be mistakenly attributed to the intervention alone and the agency and participation of children with autism may be underestimated. Through analysis of a high-functioning autistic child’s introduction of a story that everyone already knew about, I showed how laborious and complex the preparation for such an action can be. The turn-taking organization, however, appears to provide a stable anticipatory framework on which the child, Angela, relies even in the face of a lack of attention from her brother Eddie to whom the story was addressed. Once his attention was secured, Angela masterfully coordinated her vocal and non-vocal actions to launch a narrative introduction. Finally, I presented an argument that children with autism display awareness of the observability of their ‘‘body in autism’’ and attempt to mediate and counteract peers’ negative reactions. Having to explain their corporeal behaviors, however, in the presence of peers’ ignorance about

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autism, is a losing battle for autistic children. As the prevalence of ASD continues to rise, reaching one in 110 children and one in 70 boys (CDC 2009), it becomes critically important to educate the public, and especially the peers who are expected to be autistic children’s interactional partners and their role models for competent social behavior, about autism and its potentialities as well as limitations. This is critical for all children’s success in the social world, whether they develop typically or are a¤ected by autism.

10. Recommended readings (1) Levin, D. M. 1985. The body’s recollection of being: Phenomenological psychology and the deconstruction of nihilism. New York: Routledge. A very useful, theoretically rich introduction to phenomenological psychology that would benefit anyone interested in the intersections of disability, psychological processes and embodied social behavior. (2) Mukhopadhyay, T. R. (2003). The mind tree: a miraculous child breaks the silence of autism: New York: Arcade Publishing. Tito Mukhopadhyay’s poetic account is a necessary reading for those interested in first-hand experience of autism. (3) Ochs, E. and Schie¤elin, B. (1986). Language Socialization across Cultures. Cambridge: Cambridge University Press. A pioneering collection of studies that emphasize how linguistic and cultural competence are mutually constitutive. An enduring thread in these studies is embodied participation in socio-cultural practices and activities. Acknowledgments The author wishes to thank her academic ‘‘family of origin’’ at the University of California Los Angeles, and especially her mentor and colleague Elinor Ochs, for continuing collaboration and shared commitment to the study of autism. The author wishes to thank her colleagues in the Division of Occupational Science and Occupational Therapy at the University of Southern California, Sharon Cermak, Florence Clark, Mary Lawlor, and Cheryl Mattingly for their support and mentorship. The first draft of this chapter was presented at the 14th World Congress of Applied Linguistics

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(AILA), Madison, WI, 25–29 July 2005. The author wishes to thank Douglas Maynard, whose invaluable comments sustained this essay to its completion. A special thank you to Angela Nonaka for a careful reading and critical suggestions on an earlier version of this chapter. References Anderson, A. H., A. Robertson, K. Kilborn, S. Beeke and E. Dean 1997 Dialogue despite di‰culties: A study of communication between aphasic and unimpaired speakers. Typological Studies In Language 34. 1–40. American Psychiatric Association 2000 Diagnostic and statistical manual of mental health disorders (4th ed., text revision). American Psychiatric Association: Washington, DC. Ayres, A. J. 1972 Sensory integration and learning disabilities. Los Angeles: Western Psychological Services. Ayres, A. J. 1979 Sensory integration and the child. Los Angeles: Western Psychological Services. Ayres, A. J. 2005 Sensory integration and the child: Understanding hidden sensory challenges (25th Anniversary Edition). Los Angeles: Western Psychological Services. Ayres A. J. and L. S. Tickle 1980 Hyper-responsivity to touch and vestibular stimuli as a predictor of positive response to sensory integration procedures by autistic children. American Journal of Occupational Therapy 34(6). 375– 381. Bakhtin, M. M. 1990 Author and hero in aesthetic activity (transl. by V. Liapunov). In M. Holquist and V. Liapunov (eds.), Art and answerability: Early philosophical essays, 4–256. Austin: University of Texas Press. Baranek, G. T. 1999 Autism during infancy: A retrospective video analysis of sensorymotor and social behaviors at 9–12 months of age. Journal of Autism and Developmental Disorders 2. 213–224. Baranek, G. T., L. G. Foster and G. Berkson 1997a Sensory defensiveness in persons with developmental disabilities. Occupational Therapy Journal of Research 17. 173–185. Baranek, G. T., L. G. Foster and G. Berkson 1997b Tactile defensiveness and stereotyped behaviors. American Journal of Occupational Therapy 51. 91–95.

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McGonigle, D. J., R. Hanninen, S. Salenius, R. Hari, R. S. J. Frackowiak and C. D. Frith 2002 Whose arm is it anyway? An fMRI case study of supernumerary phantom limb. Brain 125(6). 1265. Merleau-Ponty, M. 1962 Phenomenology of perception (transl. by C. Smith). New York: Humanities Press. (Original work published 1945) Merleau-Ponty, M. 1963 The structure of behavior (transl. by A. Fisher). Boston: Beacon Press. (Original work published 1942) Merleau-Ponty, M. 1964 The visible and the invisible (transl. by A. Lingis). Evanston: Northwestern University Press. (Original work published 1964) Meyers, D. I. and W. Goldfarb 1961 Studies of perplexity in mothers of schizophrenic children. American Journal of Orthopsychiatry 31. 551–564. Minshew, N. J., K. B. Sung, B. L. Jones and J. M. Furman 2004 Underdevelopment of the postural control system in autism. Neurology 63(11). 2056. Mostert, M. P. 2001 Facilitated communication since 1995: a review of published studies. Journal of Autism and Developmental Disorders 31(3). 287–313. Mukhopadhyay, S. 2008 Understanding autism through Rapid Prompting Method. Parker, CO: Outskirts Press. Mukhopadhyay, T. R. 2003 The mind tree: a miraculous child breaks the silence of autism. New York: Arcade Publishing. Mundy, P., M. Sigman and C. Kasari 1990 A longitudinal study of joint attention and language development in autistic children. Journal of Autism and Developmental Disorders 20(1). 115–128. Mundy, P., M. Sigman, J. Ungerer and T. Sherman 1986 Defining the social deficits of autism: The contribution of nonverbal communication measures. Journal of child psychology and psychiatry 27(5). 657–669. Murray, E. A. and M. Anzalone 1991 Integrating sensory integration theory and practice with other intervention approaches. In A. G. Fisher, E. A. Murray and A. C. Bundy (eds.), Sensory integration: Theory and practice, 354–383. Philadelphia, PA: F. A. Davis. Noterdaeme, M., K. Mildenberger, F. Minow and H. Amorosa 2002 Evaluation of neuromotor deficits in children with autism and children with a specific speech and language disorder. European child and adolescent psychiatry 11(5). 219–225.

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Introduction. In B. Schie¤elin and E. Ochs (eds.), Language socialization across cultures, 1–15. Cambridge: Cambridge University Press. From feelings to grammar: A Samoan case study. In B. Schieffelin and E. Ochs (eds.), Language socialization across cultures, 251–272. Cambridge: Cambridge University Press.

Culture and language development: Language acquisition and language socialization in a Samoan village. Cambridge: Cambridge University Press. Ochs, E. and B. Schie¤elin 1984 Language acquisition and socialization: Three developmental stories. In R. Shweder and R. LeVine (eds.), Culture theory: Mind, self, and emotion, 276–320. Cambridge: Cambridge University Press. Ochs, E., T. Kremer-Sadlik, O. Solomon and K. G. Sirota 2001 Inclusion as social practice: Views of children with autism. Social Development 10(3). 399–419. Ochs, E., T. Kremer-Sadlik, K. Sirota and O. Solomon 2004 Autism and the social world: An anthropological perspective. Discourse Studies 6(2). 147–183. Ochs, E. and O. Solomon 2005 From the outside in: Practical logic and autism. In R. Edgerton and C. Casey (eds.), A companion to psychological anthropology: Modernity and psycho-cultural change, 140–167. Oxford: Blackwell. Ochs, E., O. Solomon and L. Sterponi 2005 Limitations and transformations of habitus in child-directed communication. Discourse Studies 7(4/5). 547–583. Ochs, E. and O. Solomon 2010 Autistic sociality. Ethos 38(1). 69–92. Ornitz E. M. 1974 The modulation of sensory input and motor output in autistic children. Journal of Autism and Childhood Schizophrenia 4(3). 197–215. Ozono¤, S. and R. E. McEvoy 2008 A longitudinal study of executive function and theory of mind development in autism. Development and Psychopathology 6(3). 415–431. Rorty, R. 1979 Philosophy and the mirror of nature. Princeton: Princeton University Press.

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Russell, J. 1997 Autism as an executive disorder. Oxford: Oxford University Press. Scheglo¤, E. A. 1995 Discourse as an interactional achievement III: The omnirelevance of action. Research on Language and Social Interaction 28(3). 185–211. Scheglo¤, E. A. 1999a Discourse, pragmatics, conversation, analysis. Discourse Studies 1(4). 405–435. Scheglo¤, E. A. 1999b What next?: Language and social interaction study at the century’s turn. Research on Language and Social Interaction 32(1). 141–148. Scheglo¤, E. A. 2006 On possibles. Discourse Studies 8(1). 141. Schie¤elin, B. B. 1990 The give and take of everyday life: Language socialization of Kaluli children: Cambridge: Cambridge University Press. Schie¤elin, B. B., and Ochs, E. 1986a Language socialization. Annual review of anthropology 15(1). 163– 191. Schie¤elin, B. and E. Ochs (eds.) 1986a Language socialization across cultures. Cambridge: Cambridge University Press. Schopler, E. and G. B. Mesibov (eds.) 1995 Learning and cognition in autism. New York: Plenum. Shapiro, K. J. 1985 Bodily reflective modes: A phenomenological method for psychology. Durham: Duke University Press Shweder, R. and R. LeVine (eds.) 1984 Culture theory: Mind, self, and emotion. Cambridge: Cambridge University Press. Siegel, B. and B. Zimnitsky 1998 Addressing ‘alternative’ therapies for communication disorders in children with autistic spectrum disorders: Facilitated communication and auditory integration training. Journal of SpeechLanguage Pathology and Audiology 22(2). 61–70. Sigman, M., P. Mundy, T. Sherman and J. Ungerer 1986 Social interactions of autistic, mentally retarded and normal children and their caregivers. Journal of child psychology and psychiatry 27(5). 647–656. Sinclair, J. 1992 Bridging the gap: An inside out view of autism in high functioning individuals with autism. New York: Plenum Press. Solomon, O. 2004 Narrative introductions: discourse competence of children with autistic spectrum disorders. Discourse Studies 6(2). 253–276.

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What a dog can do: Children with autism and therapy dogs in social interaction. Ethos, Special Issue: Autism: Rethinking the Possibilities 38(1). 143–166. Solomon, O. and N. Bagatell 2010 Introduction. Autism: Rethinking the possibilities. Ethos 38(1). 1–7. Szurek, S. A. and I. N. Berlin 1956 Elements of psychotherapeutics with the schizophrenic child and his parents. Psychiatry 19. 1–9. te Molder, H. and J. Potter (eds.) 2005 Conversation and Cognition. Cambridge: Cambridge University Press. Turner, M. 1999 Annotation: Repetitive behaviour in autism: A review of psychological research. The Journal of Child Psychology and Psychiatry and Allied Disciplines 40(06). 839–849. Wechsler, D. 1992 Manual for the Wechsler Intelligence Scale for Children-III. New York: Psychological Corporation. Williams, D. 1992 Nobody nowhere: The extraordinary autobiography of an autistic. New York: Random House. Williams, D. 1994 Somebody somewhere: Breaking free from the world of autism. New York: Crown. Williams, D. 1998 Autism and sensing: The unlost instinct. London: Jessica Kingsley Publishers. Wing, L. (ed.) 1976 Early childhood autism. Oxford: Pergamon Press. Wing, L. 1988 The continuum of autistic characteristics. In B. Schopler and G. Mesibov (eds), Diagnosis and assessment in autism, 91–110. New York: Plenum Press. Wing, L. 1996 Autistic spectrum disorders. British Medical Journal 312(7027). 327.

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Part 3.

Bodies and chronic ailments

Chapter 7 Negotiating the invisible: Two women making sense of chronic illness through narrative Hanako Okada 1. Introduction This chapter focuses on the narratives of embodied experience of two women with ‘‘invisible’’ chronic illnesses – one with fibromyalgia and chronic fatigue syndrome, and the other with a herniated disk and rheumatoid arthritis.1 These women generally appear to be ‘‘well’’: They do not have notable visible symptoms, and one has no quantitative confirmation of her condition since such tests do not yet exist. Due to the invisibility of their illnesses, understanding, negotiating, and communicating their bodily experience becomes particularly challenging yet crucially important – others, including medical providers, have di‰culties understanding their situations and alleviating their su¤ering, which also a¤ects the women’s understanding of their own situations and how to act on that understanding. Using Merleau-Ponty’s (1962) embodied phenomenology as a theoretical guide, how these women narratively perceive, negotiate, and communicate their embodied experience is investigated, contributing to further foregrounding of the role of illness narratives, and better understanding of the relationship between language and bodies.

2. The value of illness narratives The value of illness narratives has recently been foregrounded in the sociology of health and illness for three (overlapping) reasons. First, they enable the overcoming of either/or dualisms such as mind/body, biological/social, and impairment/disability, which are prominent in dominant discourses of

1. Rheumatoid arthritis is frequently a ‘‘visible’’ ailment. However, the participant of the study does not have any obviously visible symptoms. The conceptualization of ‘‘invisibility’’ will be discussed below.

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health and illness. The overarching problem with these opposing views is that they tend to be reductive – with the biomedical model focusing on malfunctioning disembodied body ‘‘parts’’ on the one hand; and the social model (including poststructuralist theories) focusing on disability as a discursive and social construction on the other (Hughes and Paterson 1997; Ramanathan and Makoni 2007; Watson-Gegeo 2005; S. Williams 1999). Both views are dehumanizing in the sense that whereas the biomedical model takes little account of individuals and their su¤ering, the social model disregards the physical body (as opposed to the discursively and socially constructed body) that is experiencing malfunction, discomfort, and pain (Ramanathan 2010; Ramanathan and Makoni 2007; Watson-Gegeo 2005). Second, illness narratives bring together bodily, emotional, and sociocultural experience and make meaning from them (Bochner 2001; Frank 1995; Kleinman 1988; G. Williams 1984), thus filling in what is lost in the above-mentioned dualisms. Bringing together various experiences is particularly important for those su¤ering from chronic ailments. Since the onset of their ailments, not only their bodies, but their life histories are altered, bent, and often shattered. The impact of the ailments also a¤ects their lives in the sense that their relationship to their worlds changes – their place in society changes, and the way others perceive them changes as well. Although rebuilding one’s life history is no easy task, narratives provide an opportunity for individuals to collect the shattered pieces and reconstruct their stories in ways that are meaningful to them and allow them to go on (Bendelow and Williams 1995; Mishler 2002). Third, illness narratives can provide a voice for su¤erers – those who, although they are in one sense the center of medical attention, are typically rendered silent by the biomedical community. That is, they are frequently regarded only as patients – as receivers of medical care (cf. Gottlieb, as cited in Frank 1995). Yet patients obviously have lives, voices, and stories to tell (Frank 1995; Kleinman 1988; Mishler 1984), however silenced they may be in clinics and hospitals, as well as in their everyday worlds. Narratives provide silenced individuals with a voice that serves as a ‘‘source of empowerment and a form of resistance to counter the domination and authority of canonical [biomedical] discourses’’ (Ellis and Bochner 2000: 749). Yet illness narratives also go beyond resistance and opposition. They can also help medical providers understand both the patient’s total experience of illness/treatment and symptoms and patterns that are inaccessible through standard means (Hamilton 2003; Kleinman 1988).

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This study is in line with the advocacy of illness narratives in the sociology of health and illness, and, in the field of applied linguistics, with Ramanathan and Makoni’s (2007) call to bring the body back to where we can speak of it humanistically, to language the body and its breakdowns in ways that eschew both the dehumanizing rhetoric of biomedical discourses and the erasure of experiences as per some poststructuralist thought. (p. 283).

Such ‘‘speaking’’ of the body and its breakdowns is particularly important for those who have invisible ailments (Thomas 1999), especially ailments for which no quantitative measures or tests yet exist. For such individuals, stories become a crucial ‘‘medium for the body to know itself and make a project of itself ’’ (Frank 1996: 54). 3. Merleau-Ponty’s embodied phenomenology Rejecting Cartesian dualism and celebrating the body-in-situ as agentive, Merleau-Ponty’s (1962) embodied phenomenology provides a dynamic theoretical framework for, in Ramanathan and Makoni’s (2007) words, ‘‘bring[ing] the body back.’’ In this section, I briefly discuss MerleauPonty’s ideas and their use as tools for better understanding and conceptualizing illness narratives. Most generally, Merleau-Ponty’s philosophy is a wholesale rejection of Cartesian mind–body and subject–object dualisms. For Merleau-Ponty, such simplistic and ‘‘rational’’ dualisms do not do justice to the complex richness of human existence and experience. More particularly, MerleauPonty viewed the subjective and objective aspects of existence as coming together in the human body, leading him to claim that ‘‘I am my body, at least wholly to the extent that I possess experience, and yet at the same time my body is as it were a ‘natural’ subject’’ (1962: 231). What MerleauPonty appears to be getting at here is that our embodied experience cannot be reduced to a series of causal forces on an object, as in the natural sciences, and, a fortiori, biomedical discourse – that the human experience is irreducibly embodied experience. For Merleau-Ponty, ‘‘our body is our way of being-in-the-world, of experiencing and belonging to the world. It is our point of view on the world’’ (Crossley 1995: 48). Merleau-Ponty gave perception a foundational place in the irreducibly embodied experience of being human. He viewed perception not as mere

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sensation or the ‘‘inner representation of the outer world’’ (Crossley 1995: 46); rather, ‘‘the perceiver is in the world, but not in the same way that pure objects are: the perceiver is a subject who acts on the world as well as being acted upon by it’’ (Matthews 2006: 37). Rationalism and empiricism (Iwakuma 2002) are totally inadequate to describe this more active and experiential sense of being, just as medical science is unable to come to grips with invisible illnesses, especially those without objective signs or measures on which to base their diagnosis. Looked at from a dualistic biomedical viewpoint, such diseases do not, in an important sense, exist, and the patient’s embodied su¤ering can only be marginalized or treated as a subjective invention. Language also plays a central role in Merleau-Ponty’s (1962, 1968) philosophy. For him, language is the tool for thought par excellence – by turning sensations and impressions into words, we become aware of our own thoughts, as well as make them public. Thus, it is through language that embodied perception is actualized, made meaningful, and emitted into the world (though certainly not every thought is publicized, nor every instance of language ‘‘thought-full’’), allowing us to position ourselves in the world in various ways. It must be noted, however, that language should not be understood here as mere external representation of thought, but as a means to complete thought – to finalize or actualize it. This does not mean that language determines thought, or vice versa, but that language and thought are, in Crossley’s (1995: 50) description, ‘‘two sides of the same coin.’’ In other words, language cannot be separated from thought, and language and thought cannot be understood independent of the body, as the body is the site where meaning is created (Leavy 2009; Morris 2008). In Polkinghorne’s (1988: 31) view, Merleau-Ponty therefore sees language as something that ‘‘takes up the contingencies of existence, and the perceptual openness of life to the natural and intersubjective worlds, and molds them into meaningfulness that is greater than the meaningfulness they originally hold’’ (p. 31). Polkinghorne then adds that ‘‘one of the ways language does this is to configure these givens into a narrative form.’’ Whether the meaningfulness created by language is ‘‘greater than the meaningfulness they [the contingencies and perceptual openness of life] originally hold’’ is questionable, but it is certain that language, particularly in narrative form, becomes a critical vehicle for making sense of one’s experiences.

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4. Approach to inquiry This study is based on the narratives of two individuals with chronic invisible illnesses: Shiori,2 a woman in her early 30s who has chronic fatigue syndrome (CFS) and fibromyalgia (FM); and Mia, a woman in her mid50s who has a herniated disk and rheumatoid arthritis (RA). Space limitations preclude in-depth description, but two aspects of Shiori and Mia’s illnesses are particularly important for this study. First, CFS, FM, and RA are chronic conditions – they have no known cures and may last for years, if not lifetimes. Second, these illnesses di¤er in terms of their ‘‘invisibility’’: RA and herniated disk can be diagnosed through blood tests and various imagining technologies, respectively, and are therefore medically ‘‘visible,’’ while CFS and FM have no tests or other quantitative diagnostic measures. In the latter cases, diagnosis is based on reported symptoms and diagnostic criteria such as identifying pain at particular ‘‘tender points’’ of the body (Mayo Foundation for Medical Education and Research 2009). These illnesses are therefore invisible in terms of their objective signs even to medical practitioners. My own positionality vis-a`-vis my participants and their invisible illnesses must also be mentioned. The two women are friends – I met and got to know them well (although I have spent considerably more time, one-on-one, with Shiori than Mia) outside the context of the participant– researcher relationship. I am also a fellow bearer of invisible chronic illness – like Shiori, I have CFS and FM (see Okada 2008), a reality both women were aware of. Our friendship and the fact that we share similar kinds of illnesses inevitably a¤ected what I asked them, what they told me, and how I interpreted it; for example, both mentioned during our interviews that our friendship and common experience with illness encouraged them to share stories they would probably not have shared with others. As researcher, friend, and fellow bearer of invisible illnesses, I am therefore situated; i.e., a ‘‘constitutive part of the situation being studied’’ (D. Atkinson 2005; n.d.: 14). This status does not in any sense make me the all-knowing, objective researcher, but it does give me a particular ‘‘view from somewhere’’ (Haraway 1988: 590) that has helped me to arrive at a personal understanding of what was experienced by my participants. It should go without saying that ‘‘all [such] interpretations are provisional’’ (Rosaldo 1993: 8) and located – bound and biased by time, circumstance, and researcher positionality. 2. All names used in this study are pseudonyms.

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The narrative data were primarily elicited via unstructured and openended narrative interviews (Elliot 2005). Both women were interviewed twice, with Shiori’s two interviews lasting approximately three hours and Mia’s four. As a full bilingual, I used the language I normally speak with the women during the interviews – English (with occasional code-switching into Japanese) with Shiori, and Japanese with Mia. The excerpts from Mia quoted below were translated by me, and confirmed by Mia for accuracy of translation. Additional data sources included emails, field-notes, and reflective accounts recorded immediately following interview sessions, phone calls, and casual meetings such as lunches and dinners (for nonresearch purposes). These accounts have inevitably been informed by my prior knowledge of and involvement with the two women; they were also checked by each participant for accuracy of detail and permission to disclose. Both further provided feedback on my interpretation of their data. I began the interviews by asking each woman to describe the onset of her conditions, and what she remembered making of her situation at the time. Although I began by focusing on the illnesses, their narrative accounts shed as much light on their overall identities and understandings of their lives as on their specific experience of illness. In the next section, I present brief versions of each woman’s story. While space limitations prevent me from giving more in-depth accounts, I hope that readers will derive some understanding of what the women experienced by reading their own words. 5. The narratives 5.1. Shiori’s story Shiori first experienced an outburst of pain in the fall of 2001, when she was pursuing graduate studies in New York. It started with severe pain in one thigh, which gradually spread to other parts of her body. She wasn’t sure what was happening, but interpreted it as follows: For a while, I kept saying I’d hate to admit to this, but I think it’s mainly because of 9/11 and the trauma. I never thought I was the kind of a person who would be a¤ected by something like that that didn’t have a direct e¤ect on me per se, but I was in New York at the time and I think timing-wise, it’s fair to assume that it had something more or less to do with 9/11 and the shock after the event. (SI:1:3)3 3. The codes following all quotations denote the participant, data type, document number, and page in the transcript from which the quotation is given (e.g., in SI:1:3, S ¼ Shiori, I ¼ interview; 1 ¼ first interview; and 3 ¼ transcript page number.)

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With the onset of pain, Shiori’s quest for diagnosis and treatment began. When she returned to Japan over the holidays, she went to see an orthopedist: So I went to the hospital claiming that I couldn’t walk and I couldn’t sit because of these pain. So they made special arrangements for me to go through MRI and things, but they couldn’t find anything wrong. . . . So they basically told me in the face that I wasn’t telling the truth, that I shouldn’t be feeling that pain. . . . I was overwhelmed, depressed, and if the doctors told me I shouldn’t be feeling the pains, I was doubting myself at the same time. Knowing I had pain, I doubted myself. It’s like ‘‘OK, am I really faking it?’’ Because I mean they’re supposed to be the professionals in the field, and I don’t know anything about the medical background of illnesses and such. (SI:1:5–8)

Despite pain, depression, and fatigue, Shiori managed to complete the last semester of her graduate studies in May 2002, and got a job as an ESL teacher in an international school in Japan. Although she was relieved to be free from the pressure of her studies, her condition didn’t improve. She therefore sought out various alternative treatments such as massage and acupuncture, which had been recommended to her, but no one was able to alleviate her pain or provide a diagnosis. Shiori also began to read extensively on unknown pain, and in doing so she encountered descriptions of chronic fatigue syndrome (CFS) and fibromyalgia (FM). Through reading various sources, she became convinced that she had these two illnesses. She proceeded to locate a specialist in New York, and decided to visit her during her summer vacation: ‘‘I thought life would be easier if I could explain to people or if I had a name for my symptom then, I thought that would be a validation’’ (SI:1:15). Shiori had no US medical insurance, and became very sick due to the rigors of the trip. Despite this, she received diagnoses of CFS and FM from the doctor – something she wanted badly: ‘‘It felt good to know that somebody acknowledged my pain’’ (SI:1:16). Having received the diagnosis, Shiori was ‘‘happy for a while’’ (SI:1:16). However, her condition did not improve, and she began to feel worse. Soon after receiving the diagnosis in New York, Shiori was referred to one of the two FM specialists then practicing in Japan, and he confirmed the diagnosis. Shiori described herself as: ‘‘ecstatic that I found someone. . . . I wanted to be treated and to be cured, and to be done with it’’ (SI:1:19). But her joy didn’t last for long – the medication she received was ine¤ective, and she began to feel that the doctor was interested in her primarily as a participant in his own research:

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He would only ask ‘‘So how are you feeling? On the scale of one to five, what number are you?’’ and ‘‘What hurts?’’ And that was IT after an hour wait at the hospital. I felt that it was fairly stupid of me that I have to leave work early [for that]. (SI:1:27)

Shiori was also frustrated with the lack of communication between her and the doctor. Shiori’s doctor did not spend much time with each patient, and as Shiori mentioned, most of that limited time was spent on him asking questions to her. On one rare occasion, however, she did have the opportunity to express her concern: Shiori claimed that she was depressed from ongoing pain and fatigue caused by the illnesses. The doctor responded by referring her to the psychiatry department of the same hospital – he reported that he couldn’t deal with or treat emotional issues. At psychiatry, Shiori was given anti-depressants, which were also known to alleviate some FM symptoms. But they did not have the hoped-for e¤ect on her, which led the psychiatrist to steadily increase the dosage. She began to feel strong side-e¤ects such as increased heart-rate and dizziness, and was shocked to find on the web that she was taking double the maximum dosage. She therefore asked the psychiatrist to decrease the dosage. It was around this time that Shiori began to experience a turning-point in her illness and life. One colleague recommended that she visit a nearby acupuncturist; as a result there was dramatic improvement in her health: I met Izumi sensei, the acupuncturist. . . And that really changed me. . . . I felt stronger, suddenly. And I kept going to acupuncture for like every week or twice a week, and that made me sleep better and eat better. And I was starting to feel better, and after about seven months, I think I was o¤ the psych medicine. (SI:1:20-21)

Approximately a year-and-a-half later, a second colleague referred her to a Chinese medicine (kanpo) doctor: It was, again, another amazing healer. But she knew a lot about me by just looking at the tongue. And she knew what was wrong. Again, she’s a very good listener. I think she’s also a psychologist, a trained psychologist. . . . And I started taking the herbal medicine twice or three times a day. . . . It was within that month that I was feeling stronger. (SI:1:43)

These ‘‘healers’’ (Shiori’s term) made her feel significantly better, enabling her to regain hope in medical practitioners, albeit not those practicing Western medicine. Although she had initially approached the acupuncturist and kanpo doctor very cautiously, she found that they took her illnesses seriously:

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I think I’ve been too skeptical because I’ve had so many bad experiences with doctors telling me it’s all mental. . . I guess me not speaking immediately was a way for me to save myself from big disappointment. . . But these two – I think I’ve been really fortunate to have met these two. (SI:2:21–22)

Prior to the onset of her illnesses, Shiori was not too familiar with alternative medicine. What was the norm for her was to simply ‘‘go to the [Western medicine] home doctor, get medicine, and be treated’’ (SI:1:28). However, her faith in alternative medicine increased because of these two practitioners. Because her conditions were properly acknowledged and treated, and because both healers were e¤ective communicators, Shiori was able to express what she was going through to them without fearing that they might doubt her experience: Only because they’ve had success in treating me. And I’ve opened up quite a bit. . . with both of those two healers, because they’ve helped me so much. It’s almost like they know what I’m going through – I don’t know how. Then I can say a little more each time. Or that’s how it started. (SI:2:21)

Shiori felt that not only did they take her illness seriously, but they took her seriously by listening to her and properly meeting her concerns both verbally and through the treatments. Shiori has continued to visit both practitioners on a regular basis. Her health has likewise continued to improve and she now feels in better control of her situation: I’m not too scared about this illness as I used to be before, because I’ve learned to cope better with my lifestyle. I need to rest if I am tired or if I am sick or if I’m in pain, which is something I never could admit to do before. . . . I also feel that my body is much much stronger than what it used to be at one point, that I don’t get these symptoms as often as I used to. It was like every day 24/7 before. But now it only comes up once in a while, and when it does, I know what to do. And I feel pretty secure with the two healers I see. . . . [But] I don’t think I’m fully recovered. I think it’s something I carry, but I have less of it now than I used to before. (SI:1:44–46)

However, despite marked improvements in her health, Shiori feels that she is ‘‘still in the process of figuring this whole illness out’’ (SI:2:17). She is also quite cautious in talking to others about her condition: I think it’s easier that way. Also because of the nature of the illness too. Because it’s not a well known thing. . . And then now that there’s a name to it, [but] it still doesn’t really help because, one, nobody knows what it is

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exactly. And two, it’s still an invisible illness even with the label on it. So then it’s not that much di¤erent now that there’s been a proper diagnosis and such. Maybe in ten years time it would be di¤erent. . . . But at this point, no. And it requires a certain level of trust for you to be able to talk about your history, like illness. Because you always wonder if this person is going to believe what I’m saying or not. . . . And I think I can only really talk about it to people that I have a certain level of trust with. (SI:2:18)

In retrospect (and possibly due in part to her religious convictions), Shiori now believes that her su¤ering had a larger purpose: I think this was something that was given for me to overcome. And somehow, I’m getting there. And I’m learning things from it. I don’t know how I would have lived without it. Like my whole twenties was almost basically spent being sick. But I also can’t think of that whole decade without that sickness – what I would have done. (SI:1:47)

5.2. Mia’s story Mia first experienced acute back pain when she was a university student, and she was immediately diagnosed as having a herniated disk. She had occasional outbursts of pain in that period, but they weren’t too serious. They eventually went away, and once they did, she forgot about her condition. Mia first faced serious and sustained back pain almost 24 years after the initial onset. At that point, Mia had just completed a Masters degree in education, and was becoming very busy as a full-time instructor at an English language school: I used to take tennis lessons, but [I was so busy] I had to quit. I lacked exercise, and lifestyle was all sitting with not much movement, so I think my muscles became very weak. It was January 4th, and I was just sitting, and my back suddenly began to hurt. It hurt like crazy. But then I had to go to the New Year’s party at work. I had to keep bowing, and the back-andforth motion of bowing made it worse. I kept thinking ‘‘it hurts, it hurts, it hurts,’’ but I didn’t have the time to go see a doctor. But it got worse, and the strength in one leg began to decrease. I couldn’t go up the hill on my bicycle like I used to, and it felt like my right leg didn’t go forward when I was walking. I thought this was extreme, and I went to see a doctor. (MI:1:8).

The doctor said she had a herniated disk, and recommended that she go to a bigger hospital for further tests. But the night before she was scheduled

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to visit the hospital, she experienced unbearable pain and was rushed to the hospital by an ambulance: I was hospitalized, and I went through various tests, and they were able to locate the exact place, but it took me 46 days altogether. I was in a wheelchair before the surgery, and after that I was bed-ridden for two weeks. After doing a little bit of training for walking, they sent me home from the hospital. But I really couldn’t walk. I couldn’t sit. . . I don’t know why I went through the surgery. . . . Perhaps it made my leg a little stronger, because I couldn’t stand up before, but I think that’s about it. (MI:1:9)

After she was sent home, Mia was bedridden for several weeks, and when her husband went to work she was all alone. During that period, she was severely depressed: ‘‘I thought it was the end of my life’’ (MI:1:9). Mia gradually gained strength through various alternative treatments such as myotherapy, and by the time she was well enough to work parttime as a university lecturer she decided to return to graduate school to do a doctorate. She was anxious about her health, but she decided to do what she could to achieve her goal. Doctoral studies weren’t easy, but what was harder for her was pressure from her husband to stay well in the process: He said he would divorce me next time I hurt my back. I don’t know how serious he was, but I felt indebted to him. [Because] I caused a lot of trouble by being hospitalized, and he took very good care of me even after I came home. I know he’s not being mean – he has his life, and he didn’t get married to look after me. So I thought I really can’t make this happen again. . . . And so I decided not to study in his presence. And even when I was in pain, I wouldn’t mention it in front of him. (MI:1:13)

Mia said it was extremely hard not to express her pain, but she was successful, and as a result her husband didn’t have the slightest clue of what was really going on. The invisibility of her condition and her willpower enabled her to do so, even though remaining silent was strenuous on her. She explained her determination as follows: He comes from a complex family, so he wanted a happy home. . . . And I understand that really well because his mother was often unwell, and apparently she would always say, ‘‘I’m going to die, die, die soon.’’ He grew up constantly listening to her complaining about pain, so when he hears other people complain about pain, it seems to hurt him too. That’s why he doesn’t want to hear about it, and I understand. (MI:2:14)

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Mia’s love and care for her husband also seem to be rooted in her childhood experience. Mia’s mother passed away from cancer rather suddenly when Mia was fourteen, her father remarried, and as a result her life became quite unsettled. Mia stated that she became an edgy and unhappy person as a teenager. But then she met her husband in college, and he ‘‘saved’’ her from her unhappiness. He was the most important person in her life, and she thought: ‘‘I have to be healthy so that he won’t be unhappy’’ (MI:2:24). Not expressing her pain to her husband was extremely di‰cult and hard on her as her su¤ering wasn’t recognized even in the worst moments of pain. Mia mentioned that she somehow coped by expressing her pain on occasion to her sister and her graduate school peers. About a year after Mia enrolled in the doctoral program, she experienced extreme back pain again: It started suddenly when I was in the pool. And he [my husband] became upset, saying things like ‘‘I really cautioned you, but you hurt yourself!’’ But he did take care of me. I was really down because I had hurt myself again. . . I was in bed for about two weeks. . . . I was really down and fed up. I wasn’t motivated to do anything. I think I was really depressed at that time. . . . I was just so sad, so sad, so sad, and I would just cry when I was alone. (MI:1:25–26)

As Mia’s condition improved, she went back to controlling her lifestyle even more carefully and not expressing or showing any signs of pain to her husband. It was like walking on a tightrope, but the situation improved somewhat when she was prescribed a painkiller that e¤ectively numbed the pain. It made a big di¤erence in terms of her anxiety: ‘‘It’s like a lucky charm. With it, I can think ‘I’m going to be okay once I take it’ ’’ (MI:1:19). With the help of the painkiller, Mia thought she could manage her situation, but toward the end of her doctoral studies she began to feel sharp pain in her wrist and noticed swelling in her fingers. She went to a local orthopedist and was diagnosed with RA. Mia then took the test results to a friend’s husband – an orthopedist specializing in RA – as the reliability of the test was low, but the diagnosis was confirmed through other tests: The doctor was surprised, and so was I. I thought ‘‘Oh, what am I going to do!?’’ And there was pain in my hand. My left fingers hurt when they were touched, and they didn’t bend, really. And I have a cousin who has severe RA. . . . She can’t walk on her own and she’s in a wheelchair. She can’t hold anything. . . . I saw that happen to her, and so I was horrified thinking that I’m going to become just like her. (M1:1:3)

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Mia followed up by saying, ‘‘I think I became extra sensitive. . . . The pain was only in my wrist and my left index finger. The rest was all fear’’ (MI:1:3). Mia went through a period of panic and fear, during which she made various life-style adjustments such as shortening her dissertation and resting more often as she was told to avoid fatigue. But Mia never questioned or wondered why she got sick, and began her RA treatment as directed by her doctor. Perhaps because the orthopedist treated her condition aggressively, and because Mia did her best to follow his advice, her RA symptoms were mild. Mia’s panic about getting severe RA receded as she noticed that the symptoms weren’t getting worse – the pain in her wrist even began to fade. Mia was very grateful that the orthopedist understood her and her lifestyle, as his wife was Mia’s doctoral classmate and friend. Unlike Shiori’s FM specialist, he provided her with explanations, and he was someone whom Mia could communicate with and open negotiations about her conditions. An added benefit in seeing him was that she could consult him about her back without her husband knowing. Although mild RA can potentially be cured, Mia felt she could live with the disease: ‘‘As long as I’m in this state, it doesn’t a¤ect me that much’’ (MI:1:25). She stated that she considers herself to be a happy and privileged individual despite her conditions: ‘‘I’m happily living with my husband, I’m doing what I want; and even with RA, it doesn’t a¤ect me that much, and I can control my backache with medication’’ (MI:1:33). But while saying that, she also admitted that she lives in constant fear: ‘‘With RA it’s the fear of what’s going to happen to me; and with the herniated disk, it’s the fear of reverting back to that [worst] state, because I’ve already experienced that’’ (MI:1:7). 6. Discussion 6.1. Coherence of the stories Viewed from a comparative perspective, one of the biggest di¤erences between the women’s stories concerned their internal coherence. From the beginning of our interviews, Shiori had a coherent story to tell, starting with the onset of her illnesses and ending with a statement of their meaning in the larger scheme of her life. On the other hand, Mia’s accounts were more scattered and less coherent. She emphasized that she had the ailments under control, and she presented herself as a happy and privileged individual. However, at the same time, throughout the inter-

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views and some of the personal talks we had, as well as emails, she would frequently mention that she lived in constant fear. Thus, her accounts were often contradictory. Perhaps the fact that she had two stories to tell – one for the herniated disk and another for RA – made it more di‰cult to construct a single narrative. There are other possible factors such as whether she is a good storyteller and how the interviews were conducted. However, what is worth exploring here is how the availability of a dominant biomedical discourse may have a¤ected the two women’s narratives. CFS and FM are relatively ‘‘new’’ illnesses: they have been discovered fairly recently, relatively few medical practitioners specialize in them (especially in Japan), and their causes, treatments, and concrete diagnostic criteria remain unknown (Nishioka 2004). Thus, it took a long time and immense e¤ort on Shiori’s part to get a diagnosis. Even with the diagnosis, there was no su‰cient treatment. The symptoms were complex, various, and nonspecific, which made comprehending the nature of the illnesses, let alone their treatments, a huge challenge (Centers for Disease Control and Prevention 2006; Sisk 2007). Shiori was often distressed and confused when others (including friends, family, and medical practitioners) suggested that it was all in her head and told her to ‘‘snap out of it’’ (SI:1:34). Her experiences were not properly acknowledged as ‘‘truth’’ by those around her, and this even led her to doubt herself and the very pain she was experiencing. Even after the diagnosis, and furthermore, her improved health, because the illnesses were unknown and inexplicable in terms of biomedical discourse, she had to continue making an e¤ort to construct meaning out from her seemingly bizarre experiences – such as debilitating fatigue and piercing pain without known causes. Because there was no readily available ‘‘common language,’’ or biomedical discourse, to help her understand her condition, Shiori had to use her own language to turn the sensations she was experiencing into something meaningful (Hughes and Paterson 1997; Merleau-Ponty 1962, 1968; Polkinghorne 1988). Mia, on the other hand, was automatically provided with the appropriate biomedical narratives – she didn’t have to actively construct her own narrative of her conditions the way Shiori did. Both of her conditions were ‘‘warranted’’ by medical tests, and doctors were able to treat her accordingly. Unlike Shiori, she had no cause to question whether what she was experiencing was real, nor was it necessary to construct convincing explanations of her conditions for those around her. In other words, nothing seems to have forced Mia to make her own sense of what she was going through by constructing one or more narrative accounts.

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The following by Sisk (2007:18) may capture the di¤erence between Shiori’s and Mia’s situations: Although all individuals. . . usually encounter skepticism about their invisible symptoms from others, conditions such as lupus or rheumatoid arthritis are well-established – albeit sometimes di‰cult – medical diagnoses, and the general public is aware of them as such. Often, simply informing skeptics about a medical condition is enough explanation. However, individuals with FM or CFS are not so fortunate. ‘‘Not all chronic diseases are equal. Some are more accepted than others’’ [Patricia A. Fennell].

Thus, it wasn’t just their bodies and conditions, but also the availability or lack of ready-made narratives that a¤ected the way they were positioned, and positioned themselves, in their worlds; as well as how they constructed their own narratives of their experiences (cf. Ramanathan 1997, 2010). 6.2. Construction of narratives Shiori created a sense of order and continuity in her di‰cult life through constructing narratives. As Ellis and Bochner (2000) mention, narration ‘‘make a life that sometimes seem to be falling apart come together again, by retelling and restorying the events of one’s life’’ (p. 746). Without such sense making, how she lived her life for the past 10 years could not have been justified to others as well as herself. Constructing narratives allowed her to move on forward and to construct her identity in relation to her experiences with the illnesses. However, what we say through narratives are not complete stories or ‘‘truths.’’ Narratives construct reality rather than represent it (Ellis 1997; Ellis and Bochner 2000; Plummer 2001). Through narratives, the past is given a new life (Merleau-Ponty 1964: 59), and that is how the process of constructing narratives functions as a sensemaking device. Narratives, as speech events, allow narrators to tell their stories coherently. However, that does not necessarily mean that their lives are actually coherent. As Kanno (2003) states, ‘‘more coherence and connections are worked into the life told than the life lived’’ (p. 9); and ‘‘we strive to maintain a sense of purpose and direction in our lives and to function as a whole person’’ (p. 131). Our yearning for order and coherence suggests how complex our social lives actually are. That is, the more complex our lives are, the more order and coherence we long for. That is why, Shiori, who was not provided with ready-made biomedical discourse had to depend on her own narrative construction for meaning making.

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It must be noted, however, that narratives are not individual productions (Ochs and Capps 2001; Pavlenko 2002). Ochs and Capps (2001: 2) mention that narratives are co-constructions between the narrator and the listener, and that ‘‘narrative activity becomes a tool for collaboratively reflecting upon specific situations and their place in the general scheme of life.’’ For this reason, who the audience is a¤ects the process of narrative construction (Shakespeare 1996; S. Williams 1999). Shiori mentioned that it was my presence throughout her trials and travails that enabled her to talk openly and negotiate meaning out of her situation without getting lost or emotional. As mentioned earlier, I was her friend, as well as a fellow CFS and FM patient. Shiori and I went through similar experiences around the same time, and Shiori referred to me as ‘‘someone who shared the same thing, without questioning it’’ (SI:1:35). We often referred to each other as ‘‘own little support group,’’ and depended on each other’s presence as an understanding audience. 6.3. Silence in the stories Although the two women’s situations di¤ered, one thing they had in common was that they were e¤ectively silenced. Thus, Shiori gave up communicating her su¤ering to most others as she frequently received a ‘‘that’s-in-your-head’’ response. That is, her embodied experience with her illnesses wasn’t warranted or justified because there was nothing to ‘‘prove’’ them. It came to the point that Shiori even refrained from opening up to medical practitioners until she was confident that she could trust them. Even when Shiori got the diagnosis from the Japanese FM specialist, because he did not engage in communication with her, she could not open negotiation about her condition with him. She became a quiet patient who only responded to the questions he asked. But her situation was not an exceptional case. Survey results have shown that one of the most frequent complaints that patients in Japan have toward their doctors was lack of communication. Patients were often not provided with adequate explanation regarding their illnesses and treatments (Iijima 1995). According to Iijima (1995), up until fairly recent times, patients (in Japan) were expected to trust their doctors and to do as they were told without questioning them, because medical care was based on a ‘‘benevolent act’’ that doctors ‘‘sincerely act upon what was the best for their patients’’ (p. 5, original in Japanese). Thus, (many) doctors did not find the need to explain their decisions in detail to their patients.

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As indicated in her story, Mia was able to talk to her medical providers but felt compelled to hide her pain from her husband. Not being able to express her pain to the closest person in her life was harder than anything she experienced related to her conditions. Her herniated disk was warranted biomedically, but socially, it wasn’t. Her husband understood it as her responsibility – he thought that she wouldn’t be in pain if she didn’t push herself so hard – and Mia appeared to accept and assume that responsibility too. Because of their silencing, both women lacked awareness from those around them, as well as the opportunities for them to openly negotiate their conditions through language. Lack of communication made their invisible illnesses even more invisible, as language is ‘‘the medium through which. . . [the] collective notions of disabilities and ‘able’ bodies get discoursed into place’’ (Ramanthan 2010: 3). Without proper ‘‘languaging,’’ the two women’s conditions were not legitimized, and furthermore, this a¤ected both women’s coping mechanisms (cf. Ramanathan 1997). It was a vicious cycle where the women were silenced because of lack of biomedical or social warranty, and their silencing leading to further lack of acknowledgement and perceived legitimacy of their conditions, which all together a¤ected how they coped with their physical and emotional burdens. 6.4. Invisibility One thing that may have caused the women to be silent was that their perceived illnesses weren’t fully recognized by those around them. This lack of recognition may have been due to the invisibility of their conditions (Ramanathan 2010). Mia and Shiori both mentioned that it wasn’t a pleasant experience when people said ‘‘you look well’’ at the very time they were experiencing debilitating pain. Mia, in particular, had a reputation as a genki (Japanese word for ‘‘energetic’’ and ‘‘lively’’) person who was always smiling. She said that when people commented on how energetic she was, she would think ‘‘I’m actually not like that’’ (MI:2:26) while keeping the thought to herself. It was the invisibility of her illnesses that allowed her to conceal her pain from her husband. Thus invisibility was a mixed blessing for her – it allowed Mia to keep her husband happy by hiding her pain and presenting herself as ‘‘well,’’ but refraining from expressing her pain was more di‰cult to manage than pain itself. Mia also mentioned that people with invisible ailments often go out only on ‘‘good’’ days so that others have no idea of the extent of their su¤ering. These women therefore

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struggled with pain and fear alone – without those around them fully realizing or acknowledging their su¤ering. Shiori reported in this connection that she thought life might be easier if she had conditions that were visually obvious to those around her. Mia also mentioned how it was generally a challenge for people with invisible ailments to be understood. In Shiori’s case, her illnesses were invisible not only to laypeople, but also to (most) medical practitioners. Thus, her situation was one of double invisibility, making it even harder for her pain and su¤ering to be acknowledged and warranted.

7. Conclusion The idea for this study emerged from knowing two women who had chronic illnesses – women who also happened to be hard-working, attractive, and ‘‘healthy’’ by outward appearance. Because I knew of their illnesses (perhaps, in part, because I was comparatively open about my own), I was interested in the gap between what they ‘‘appeared to be’’ and what they were experiencing and feeling – in other words, the gap between how they were perceived by others and what their bodies perceived (in a Merleau-Pontyan sense). However, as I listened to their stories, I couldn’t help noticing the impact of a dominant Western biomedical discourse on their experience and how they used language in relation to it. The contrast between the two women’s stories shed light on these points: Shiori’s story suggested how the absence of a warranting biomedical narrative marginalized her embodied perception and experience, even leading her to question their reality. Although Shiori’s condition has improved significantly, she still refers to her ailments as an ‘‘i¤y illness,’’ one that she wouldn’t ‘‘proudly talk about’’ (SI:1:34). She was aware that CFS and FM were complex illnesses that still remain largely unknown; and that even when they were known, they were often regarded as controversial by some medical practitioners as well as lay people (Sisk 2007). Mia, on the other hand, who had ‘‘well established’’ illnesses (Sisk 2007: 8; Ramanathan 2010), was automatically provided with a biomedical narrative and perhaps therefore accepted her ailments without questioning them, carrying on with the treatment Western medicine provided her. Both women also refrained from communicating their ailments for varying reasons. In Shiori’s case, she gave up using language to describe what she was going through because her accounts were dismissed when she did; this left her in further darkness and confusion about what was

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actually happening to her, leading to strong self-doubt. At that point, she didn’t (or couldn’t) yet actualize or make meaningful what her body was experiencing. Eventually, however, she was able to utilize the force of language in constructing her own narrative of experience. Although no coherent biomedical narrative has yet been provided, she has actively made her situation meaningful and coherent by emitting it through language into the realm of the ‘‘real.’’ In other words, although the illnesses were complex and unknown, she has found their place in her life-story. She constructed a story with chronological order and coherence: her encounter with the illnesses; the battle with the illnesses, both in terms of the physical symptoms and not being understood; and the gradual improvement in health through alternative medicine. Through constructing such a coherent story, she was able to make some sense and meaning out of the experiences with the illnesses that otherwise remain absurd to others, as well as to herself. Mia’s silencing was di¤erent from Shiori’s – she suppressed her desire to express her pain in front of her husband. Mia reported that this was a huge challenge and itself a painful thing to do. Not using language prevented her from fully validating her experience as she was unable to construct reality through it. This study is small and still in progress. However, the stories of the two women suggest the value of illness narratives and some of what they can shed light on, directly or indirectly. Their narratives portray the shortcomings of biomedical discourse, and show how narratives can fill in the gaps created by either/or dualisms in conceptualizing invisible ailments. Their narratives also showed the power of language and how it did or did not construct realities for these women. More specifically, the narratives showed how biomedical discourse, or the lack of it, positioned the women in certain ways. Whether such discourse was available or not was crucial for the women, particularly because their illnesses were invisible. While it was language – or biomedical discourse – that positioned the women and their bodies, it was also language – or construction of narratives – that enabled them to shift themselves from the undesired positioning (Ramanathan 2010). In relation to language, the role and the impact of the interactants or audience became salient through the stories. It was not only medical practitioners, but also family members, friends, and/or researchers, that influenced what the women could say or not say. It was shown that biomedical discourse could provide legitimacy for the ill, but depending on how those around them interacted with, reacted to, and/or responded to them, that

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legitimacy could quickly fade away. Attention needs to be paid to such interactions, to better understand how bodies get languaged, or not languaged, in certain ways. In conclusion, I would like to call for further research on languaging bodies and illnesses, as there is much to learn in terms of both the nature of language and the deep, complex meanings of embodied experience, as well as their complex relations. Such research should provide insights and be beneficial across a wide range of disciplines, such as medicine, psychology, anthropology, and applied linguistics.

8. Recommended Readings (1) Frank, A. W. 1995. The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press. In this book, Frank, himself a survivor of cancer and heart-attack, illustrates how illness narratives are embodied – that they are not just stories about the body, but told through it – and it is through telling their stories that the ill make sense of their su¤ering. In addition to explaining why illness requires stories, Frank describes di¤erent narrative types and what they tell, and the ethical imperative of illness narratives. Frank’s analysis and theorizing of the stories expand them from the particular to the social, moral, and ethical, making this book an important contribution to the sociology of illness. (2) Kleinman, A. 1988. The illness narratives: Su¤ering, healing and the human condition. New York: Basic Books. In this book, through his wealth of experience as a psychiatrist and anthropologist, Kleinman calls for the voices of the ill to be heard. This book is unique in the sense that it focuses not only on the narratives of the chronically ill, but also of medical practitioners, as well as the relationship between them. Through discussing what illness means to both parties, Kleinman seeks to bridge the gap between them, and provides a fuller account of the meaning of illness. (3) Watson-Gegeo, K. A. 2005. Journey to the ‘‘new normal’’ and beyond: Reflections on learning in a community of practice. International Journal of Qualitative Studies in Education 18(4). 399–424. This article is a compellingly written autobiographical work by an anthropologist. Watson-Gegeo discusses her embodied experience of chemical

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sensitivity and the changes in her perception and identity after a near-fatal experience and the resulting six months in a chemical sensitivity clinic. To convey her experience in a more meaningful way, Watson-Gegeo uses snippets of narratives and poetry as means of expression. Her use of di¤erent genres, along with the way she theorizes her narratives, should be insightful for those who seek alternative representations of the meaning of illness and related experiences.

Acknowledgments I would like to thank the two participants in this study for generously sharing the stories of their lives; and Dwight Atkinson, Paul McPherron, and Vaidehi Ramanathan for their thoughtful and constructive comments on earlier drafts of this chapter.

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Chapter 8 ‘‘Training your taste buds’’: The language of success in diabetes ‘‘self-e‰cacy’’ Catherine Evans Davies, Linda L. Knol, and Lori W. Turner 1. Introduction Storytelling is a universal human activity that serves a variety of important functions, ranging from socialization into the norms of a particular sociocultural group, to individual self-definition, to aesthetic expression and entertainment. It is the protean form of literature and was first studied in its written manifestations as ‘‘narrative.’’ Since the pioneering work of the sociolinguist William Labov and his collaborators (Labov and Waletzky 1967; Labov 1972), oral storytelling has attracted increasing attention in the social sciences, e.g., not only in sociolinguistics (e.g., Bamberg 1997; Norrick 2000, Thornborrow and Coates 2005), but also in anthropology (e.g., Baumann 1986; Johnstone 1990) and in psychology (e.g., Bruner 2004; Davies and Harre´ 1999). Initially the focus was on the structure of stories, identifying the nature and sequencing of the elements. More recently, the focus has shifted both to the contextual dimensions of storytelling (how cultural expectations may shape the story, how the story is ‘‘performed,’’ how interaction with the audience a¤ects the story), and to the dimensions of storytelling related to the ‘‘presentation of self ’’ (how a teller conveys the ‘‘point’’ of a story, how identity is displayed within and by means of a story, how coherence of a person’s experience is constructed by means of storytelling). If we combine the socialization function of storytelling, as demonstrated in Hamilton (1998) with on-line bone marrow transplantation narratives, with the individual dimensions that include both self-definition and the creation of coherence, then it becomes clear why storytelling could be an important tool in programs designed to foster self-e‰cacy in chronic diseases such as diabetes. Diabetes is a condition that requires monitoring and careful management. Patient education is the key, and the ideal situation is self-management guided by health professionals. The ‘‘self-e‰cacy’’

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model (Peterson et al. 2002) adopted here is oriented to empowering patients in relation to their own diet, physical activity, blood sugar monitoring, and medication. In the American South, storytelling is a respected dimension of traditional culture (Davies 2008, forthcoming). The right kind of personal experience stories, told by people whom the patients would accept as agents of socialization, would ‘‘frame’’ the diabetic condition in ways that would allow patients to cope successfully (i.e., in terms of attributions, conceptualize the illness as manageable rather than as hopeless). For example, in analyzing stories of patients dealing with the chronic condition of hypertension, Cheshire and Ziebland (2005: 32, 39) reveal how two women construct two di¤erent self-definitions, both of which are successful in allowing them to cope with their disease. Rose ‘‘displays and reinforces a positive self identity, defining herself in relation to other people with the same condition. This is one way, then, of adjusting to the necessity of living with a chronic illness.’’ Josephine, on the other hand, ‘‘adopts a detached style when relating specific events concerning her condition. In this way she maintains and reinforces the attitude . . . . ‘the real me is a kind of observer of this and so it doesn’t get to me.’ Unlike Rose, Josephine has constructed a personal identity as a well person, but nevertheless she can successfully integrate her two selves – the ‘ill person’ and the ‘real me’ – when it is necessary.’’ There seems to be a general trend both in medical schools and in public practices to move away from compartmentalization in which the doctor sees the patient only as a disease, and toward a more holistic view. The conceptualization of this project is consistent with that trend. It seeks out ‘‘best practices’’ from the clients themselves, who personalize and individualize the health messages in the context of their lives as a whole. The success stories document the clients both working collaboratively with health professionals and also claiming agency in various ways. These are the voices of peers who can help to create community with others like themselves who are coping with a chronic disease.

2. The pilot study Our pilot project has already demonstrated that such ‘‘success’’ stories can be recorded, and that they provide not only accessible and useful practical information on coping strategies, but also models of self-definition (Knol et al. 2007). The project was participatory and collaborative with the local

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community, in the state of Alabama where Type 2 diabetes is an increasing problem. Clinic health workers at a local diabetes clinic identified clients who had maintained a hemoglobin A1C of less than 6.5% for over six months, a measure of good, long-term blood sugar control. All these clients were referred to the clinic for diabetes self-management education after a recent diagnosis. The clients had received both group education and individual counseling for e¤ective management of their illness. As will be seen in the discourse analysis below, some clients had anticipated their diagnosis and some had not, and each had been following the selfmanagement program with the clinic for a di¤erent period of time. These clients were approached about participating in the study, with the understanding that they would be videotaped telling their stories, and that these videotapes would be used in research and would become part of an intervention strategy on portable video devices in doctors’ o‰ces for patients newly diagnosed with diabetes. Thus all of the volunteers knew that their audience would be peers learning how to cope with diabetes. Six clients responded, all of them white Alabamians (one woman and five men) and became the success storytellers. These people were all middle-class, and were between 50 and 60 years old. The stories were recorded in a context that included an authentic audience for such stories, i.e., a cameraman with diabetes whom the participants spoke during the filming, and the questions used to elicit the stories framed them as accounts of successful strategies for coping with various aspects of diabetes (‘‘How did you feel when you were first diagnosed with diabetes?’’ and ‘‘What are you proudest of in how you’ve managed your diabetes?’’). The first question was designed to elicit emotional reactions, followed by an account of how the person overcame negative feelings. The second question was an opportunity to provide stories about various aspects of self-management. The three researchers were all present in the room with the cameraman while the taping took place, and posed the two main questions as well as follow-up questions. The self-selection of the tellers and the framing of the stories through elicitation questions produced a set of stories addressing di¤erent aspects of diabetes care but in which the storytellers typically presented themselves in ways that should serve as useful models for others (e.g., through appropriate metaphors for the disease and their role in coping, through casting themselves as active agents rather than passive victims, through portraying health professionals in collaborative and supportive roles, through psychological stances that reinforce self-e‰cacy). The researchers were able to edit each taping session into useful segments addressing various

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aspects of self-e‰cacy; these segments are intended for use in the mp3 players in doctors’ o‰ces.

3. Discourse analysis of the stories Using discourse analysis to combine the resources of sociolinguistics, anthropology, and psychology provides a powerful tool for the understanding of stories as therapeutic interventions. Discourse analysis can identify metaphors that serve as cognitive ‘‘framing’’ devices that create coherence and structure expectations. Less obvious is the subtle and artful use of language (in terms of choice of words, selection of grammatical structures, special emphasis that is conveyed in the quotations by means of capitalization) that storytellers use to convey the ‘‘point’’ of the story and express their identity, both within the story and in the moment of telling in relation to their audience (Labov 1972; Schi¤rin 1996). The discourse analysis provides a close reading of the narratives of the six white Southerners who volunteered to be videotaped as part of the project designed to create peer narratives that could be used as part of a treatment regime for diabetes self-management. It identifies themes such as ‘‘discipline’’ of the body, examining the psychological stances revealed through pronoun use and other dimensions of the grammar (e.g., ‘‘I’m not a diabetic; I’m a person with diabetes,’’ ‘‘I’m a big experiment. . . and my meter is my best friend,’’ ‘‘I’m in total control’’), and generally trying to understand, through the discourse, how these people conceptualize and relate to their bodies as they cope with diabetes. Returning now to the Cheshire and Zieland analysis of the narratives of the two women hypertensives, we see that the discourse revealed two di¤erent but successful responses to this sort of chronic condition. In the case of Rose, we see a person who has integrated the condition into her identity, but who at the same time doesn’t spend a lot of time thinking about it. Josephine, on the other hand, refuses to define herself as other than ‘‘healthy,’’ even as she takes the daily medications that her condition requires. Cheshire and Zieland describe the way that Josephine adopts a detached style when describing particular events related to the condition, and note that ‘‘Josephine explains later in the interview that she actively distances herself from her experiences of illness, seeing them as not experienced by ‘the real me’ ’’ (p. 20). The data that we are considering in this paper concern narratives about diabetes, a chronic condition that requires self-management or adjustments

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to diet, exercise, and medication based on daily blood sugar readings. People newly diagnosed with the disease need to learn how to manage all aspects of the disease to properly maintain blood sugars in a range that is close to normal. Thus, they are actively involved in the management of their disease state and must relearn behaviors while coping with the news that they have a chronic disease. It is not simply a matter of remembering to take your daily medication. The ‘‘self-e‰cacy’’ model that we used in the study encompasses four dimensions of involvement: diet, physical activity, blood sugar monitoring, and medication. All of the six people who volunteered to provide video data clearly believed that they had something to share with others coping with diabetes, and also believed that they had been successful themselves in managing the disease. Considering the data from the six di¤erent individuals, all of whom saw themselves as successful in coping with diabetes, it appears that they can be ranged on a continuum having to do with basic psychological stance, with implications for a relation to the body, in regard to the chronic condition. At one extreme is a person who seems to be reluctantly resigned to what she experiences as an unjust fate. At the other extreme is a person with a scientific turn of mind who has taken the situation as an opportunity to use himself as a ‘‘BIG experiment,’’ which he describes as ‘‘kinda exciting.’’ We will examine the discourse from each of the six people in turn, briefly considering how psychological stance and related attitudes toward the body are expressed through the language. 3.1. Consultant 1: ‘‘I’m a diabetic’’ Consultant 1, the only woman in the group of six, knew that she had a family history of diabetes, and seems to have taken on the identity of ‘‘diabetic’’ with reluctance and resentment against an unjust fate. In describing her diagnosis she uses the passive voice three times: ‘‘I had been diagnosed as a ‘pre-diabetic’,’’ ‘‘when I was first diagnosed with diabetes,’’ and ‘‘I was diagnosed as a diabetic.’’ She also comments that ‘‘I knew that there was the possibility that I would become a diabetic.’’ The shift in the latter three examples away from the use of a prepositional phrase to refer to the disease in relation to herself (‘‘with diabetes’’) to a nominalization (‘‘a diabetic’’) is consistent with her later self-representations when describing how she interacts with people who want her to eat certain foods: ‘‘I’m a diabetic; I can’t eat it’’ and ‘‘then I go ahead and tell them that I AM a diabetic.’’

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In her story she mentions three things that cumulatively frame her condition as unjust in terms of fate: the fact that out of eleven grandchildren she was the only one who has developed diabetes, the fact that she (unlike others) was ‘‘unfortunately’’ unable to control her diabetes with exercise and diet upon first diagnosis, and the fact that she had to learn to prick her fingers when as a child she ‘‘did not like needles.’’ Such a framing creates an explanation for her characterization of the diagnosis as ‘‘depressing,’’ but it also creates a paradoxical situation in which rather than being angry at fate she can be ‘‘angry at myself,’’ repeated twice as ‘‘mad at myself ’’ because she hadn’t worked harder to forestall the full onset of the condition, given that she had been alerted to her ‘‘prediabetic’’ status much earlier in her life. Thus the negative emotion is turned against her ‘‘self,’’ which should have been in control: ‘‘I could do things that could have changed it in the past . . . and even today I look back and think that I could have done something di¤erently.’’ Her advice to others is ‘‘don’t beat up on yourself,’’ using a physical metaphor for an emotional attitude. The emotional dimension of anger is also characterized physically, as something that has to be ‘‘worked through’’ or ‘‘gotten through.’’ She uses rhetorical questions and then answers them herself, emphasizing her emotional state: ‘‘to say that I was in denial for a while? Yes. Was I angry? Yes.’’ Her resignation is captured in her characterization of diabetes and her response to it: ‘‘it’s a disease that is ah not curable and you have to live with it.’’ Rather than simply saying that she learned to prick her fingers, she comments that ‘‘I had to learn to prick my fingers,’’ suggesting e¤ort and compulsion. Even when she describes something that she is proud of, such as a system for rotating the pricking of her fingers, she concludes with the comment that ‘‘you get tired of it, I get tired of it, of having to prick my fingers every day.’’ None of the other volunteers for this study even mentioned checking blood sugar in terms of their own body parts, whereas she discusses the physicality of it: ‘‘you have to get it just the depth or you can have a big bruise mark on your finger or you bleed too much.’’ In terms of having to have her medications changed periodically she comments that ‘‘your body gets used to [it].’’ She describes her condition as a ‘‘challenge,’’ diabetes as something that needs to be ‘‘controlled.’’ In discussing how she has modified her diet, the focus is on deprivation; instead of focusing on things that she does eat, she picks out examples of what she cannot eat (‘‘this piece of cake or this piece of pie’’) and emphasizes the idea that ‘‘you learn to turn those down.’’

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When she talks about her own agency, it is strikingly in relation to becoming involved in ‘‘activities to keep you busy,’’ presumably to distract from contemplation of the disease. The image that emerges from this discourse is a person who is inhabiting a body that has the disease, is very aware of the physicality related to control of the disease, and is also resigned to accepting her fate at the same time that she has residual anger about it and diverts energy into distracting herself from awareness of it. 3.2. Consultant 2: ‘‘I have been able to lick ice cream at night’’ Consultant 2 also has a sense of injustice in relation to the universe, asking ‘‘why me?,’’ in part because he had no family history of diabetes, and also because: ‘‘I’m a guy who’s always kinda tried to take care of myself: I exercise, I watch my weight, I try to eat fairly right.’’ Thus in this case we see clearly the disciplined ‘‘self ’’ that takes care of the body. This ‘‘self ’’ also reacts with middle-aged frustration at failures of the body: ‘‘I’m goin’, you know, ‘not another thing wrong with me!’’’ The power of linguistic labels is demonstrated by this person’s description of his diagnosis by his doctor: ‘‘he’s a friend of mine and he really didn’t want to say the word di- er he didn’t want to TELL me, ‘you’re diabetic,’ and he really never did.’’ Consultant 2 uses physical metaphors to describe the e¤ect of his recognition that he had the disease. He comments that ‘‘it really hit me hard,’’ and then repeats twice that ‘‘it was a blow to me.’’ After stating that he was ‘‘basically in denial for a good while,’’ he uses humor by commenting that ‘‘it was depression medicine and Jack Daniel’s that helped me cope,’’ the humor arising out of the audience’s recognition that he had in fact drawn upon his own strong self-discipline to manage the diabetes. Consultant 2’s resignation is formulated as acceptance of ‘‘another thing that happens in life,’’ using the metaphor of ‘‘bumps in the road,’’ with implications for the jarring of the body in some way. He also describes himself as making a decision about how he would approach the situation: ‘‘it was just somethin’ that I decided that I would work and take a day at a time and see what happens.’’ Whereas before his diagnosis agency is ascribed to his glucose level that ‘‘was just sorta creepin’ up a little bit,’’ after diagnosis and acceptance of his situation the disciplined self is active in ‘‘watching’’ his diet, ‘‘keeping up with’’ his carbs, ‘‘monitoring’’ his sugar level, and ‘‘watching’’ his weight. He refers to his actions as ‘‘treating myself with diet,’’ using a verb generally reserved for doctors, and claims credit for reducing his A1C: ‘‘I brought it down and I was proud of that.’’ Weight loss is described as his having

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‘‘dropped’’ ten pounds. He also notes his agency in learning about the disease: ‘‘I did some research about it and learned that you can live with it.’’ His relationship to food is at first described in terms of challenges that he had to overcome in depriving himself of favorite foods. He says that ‘‘that’s the hardest thing for me ’cause I really do like to eat. I like a lot of foods that are just not good.’’ He comments that ‘‘I’ve always been a big fan of sweets,’’ but then a bit later in the discourse (shown below in lines 1–15) notes that he is proud of the fact that ‘‘I have also been able to lick ice cream at night,’’ using an interesting pun that we didn’t notice until we worked on the transcript of the narrative. Is the ‘‘I’’ who was a big fan of sweets the same ‘‘I’’ who has been able to overcome the desire for ice cream at night? It would seem that the latter ‘‘I’’ is operating at a meta-level, controlling the ‘‘I’’ with the physical cravings: (1) 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15.

I have also been able to lick ice cream at night// you know I was a big Blue Bell heheh ice cream guy at night you know before goin’ to bed and I mean it was just a ritual// and ah I have found other things that I can eat that I can snack on that are more protein oriented or somethin’ along that line that’s not gonna run up the blood sugar// and you know occasionally I’ll HAVE a scoop of ice cream you know you can still do that//

Consultant 2 also jocularly describes his former attitudes, i.e., ‘‘what I used to think,’’ about the ‘‘right’’ combinations of food (e.g., ‘‘you can’t have a pimento and cheese sandwich on whole wheat toast. It’s just not RIGHT’’). Toward the end of his commentary, however, he describes in detail his choice of lunch with apparent relish: ‘‘well I’ll tell you what I’ve been doin’ here lately, with all these home-grown tomatoes I’ve been getting’ at the Farmers Market, is turkey and tomato, mayonnaise, salt and pepper, and maybe a slice of cheese – sandwich, you know, a handful

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of potato chips and a Diet Coke. That’s a pretty good lunch for me.’’ Thus we see that the person who really does like to eat has managed to find a way to create an enjoyable lunch within the new constraints. Whereas this person also describes frustration and resignation in his reaction to his diagnosis, the resignation is couched in terms of his choice (‘‘I can give up some things’’) in the context of his broader motivation: ‘‘I want to live and have a quality of life that is the best that I can possibly have.’’ 3.3. Consultant 3: ‘‘you can overcome the diabetes’’ Consultant 3 was unaware of a family history of diabetes, but had been diagnosed earlier as ‘‘a borderline diabetic’’ before he was told that he was ‘‘a full-fledged diabetic’’ and sent to the diabetes clinic. This person emphasizes his own former ignorance and arrogance: ‘‘I thought that I knew more than anybody, and I didn’t.’’ He had believed that he could ‘‘control’’ his ‘‘sugar’’ simply by eating less at night, for example. In order to move to real ‘‘control’’ he had to give up his illusion of control and learn the facts. He notes: ‘‘I always thought that if you’re a diabetic you couldn’t eat sugar, but I was wrong and I learned about that.’’ His narrative is thus about a transformation of psychological stance through acceptance and learning about the disease. He is ultimately able to exert agency over his eating habits (‘‘I changed my diet completely’’), his weight (‘‘I’ve lost 50 pounds’’), his medication (‘‘since I lost the weight and since I watch what I eat as far as carbs I’m down to where I only take ONE Glyburide [a medication to help the body use its own insulin better] a day’’), his exercise (‘‘I still maintain my walking and working and anything else I want to do.’’). Agency is the basis for the humorous story that he recounts, in which he had such a high reading that he ‘‘scared her to death’’ at the clinic, ‘‘and I just walked in the door and said ‘I quit. Here’s my kit. I quit.’ and they laughed and I laughed but we worked it out.’’ The basis of the humor, of course, is that he is talking about voluntarily removing himself from a condition that he inhabits and can’t detach himself from. This person was quite explicit in his appreciation of the help and support of the clinic, referring to the people there twice as ‘‘a blessing.’’ Whereas Consultant 3 refers to himself in his original diagnosis as ‘‘a diabetic,’’ and then in his conclusion repeats that ‘‘you find out you’re a diabetic,’’ he twice detaches himself from the disease, referring to it with the use of a definite article: ‘‘the diabetes I didn’t think I could overcome,’’ and then later ‘‘you can overcome the diabetes.’’ His concluding comment,

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in fact, is the comforting message to people with diabetes that they can manage the disease ‘‘and live a normal life and never look back.’’ This last clause suggests the metaphor of a path or journey, with the diabetic diagnosis and adaptation as behind him in the past, and a ‘‘normal’’ life stretching out into the future. 3.4. Consultant 4: ‘‘I’m not a diabetic; I’m a person with diabetes.’’ Consultant 4, like Consultant 1, knew that he had a family history of diabetes, and had chosen to be in close touch with his doctor as he got older and ‘‘felt that my energy was beginning to wane somewhat.’’ Consultant 4 was quite explicit about rejecting the label ‘‘a diabetic,’’ and describing himself as ‘‘a person with diabetes.’’ The only time that he describes himself as not healthy is through a contrast with his younger self: ‘‘I’m just not the healthy lad I once was.’’ He portrays himself from the beginning as exercising agency in the situation: ‘‘I began then to think that I needed to get on the program so that I might be able to get this under control.’’ In fact, consultant 4 uses the word ‘‘control,’’ both as noun and verb, 8 times in his commentary, culminating in the pronouncement that: ‘‘it just became necessary that I just either control IT or to a degree it controls ME.’’ Clearly the situation is conceptualized as a struggle between the self (in the form of will) and the disease. He also uses the word ‘‘discipline’’ 5 times in his discourse, along with other indications of agency such as ‘‘do some close monitoring,’’ and ‘‘keep a watch on it.’’ A physical metaphor is also used to express control: ‘‘take grips with the health complications of diabetes.’’ The rational part of the ‘‘self ’’ is also invoked, in that he talks about ‘‘thinking it through’’ so that he doesn’t become depressed: ‘‘I says uh now I believe I’ll be able to think this through and not going to be able to become depressed or emotionally disturbed about it.’’ Consultant 4 is also quite aware of di¤erent physical dimensions of his body, referring to ‘‘the glucose level that’s in your bloodstream,’’ to tastebuds, and to the pancreas. He also understands the purpose of exercising: ‘‘to increase the metabolic rate of your body so that it will be able to distribute . . . burn and distribute the energy to all of the various systems of your body.’’ Consultant 4’s discourse reveals a focus on disciplining the body, with e¤ects on the part of the self that craves certain foods. Rather than focusing on self-denial, he emphasizes the idea that you can ‘‘train your tastebuds’’: ‘‘you have certain foods that you’re going to have a strong interest in, and yet through this discipline factor that I

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mentioned you can gradually change your taste ah desires.’’ Thus changing one’s taste desires shifts the focus from deprivation and self-denial to a new form of self-created choice and thus agency. Even when he admits that one of his ‘‘weaknesses’’ is chocolate cake, he immediately shifts to a discussion of how ‘‘the nutrition industry has done a great job in providing these lower sugar items such as Splenda and Nutrasweet.’’ In fact, he even uses grammar to hedge acknowledging a craving, using both the subjunctive and a conditional: ‘‘if I had a tendency to crave something, it would be the chocolate desserts.’’ Consultant 4 is also able to recognize and take advantage of certain contextual factors from his background: ‘‘I’m a Southern boy and I really grew up, you know, enjoying my vegetables and so that was a real plus as far as being able to adapt to the program.’’ Further, Consultant 4 conceptualizes motivation as part of a system of discipline: exercising distributes the energy throughout the day to reduce cravings for undesirable foods, and also keeps the energy level up to allow him to go about his daily activities and keep his spirits up. Further, it leads to measurable improvement that can then serve as further motivation. Consistent with his emphasis on the discipline of the body as a system, he speaks of ‘‘maintaining a balance,’’ and of staying within the ‘‘parameters.’’ Consultant 4 rejects the label ‘‘diabetic,’’ and is the first in our series so far to begin to conceptualize his situation, and the lifestyle adjustments that it has occasioned, in a positive way: ‘‘it’s caused me to have a higher level . . . enjoy a higher level of energy and health.’’ 3.5. Consultant 5: ‘‘Eating is one of the favorite things that I do.’’ Consultant 5’s doctor was ‘‘amazed’’ when he discovered that his patient ‘‘had diabetes,’’ because there was no family history and no prior indication over twenty years. Consultant 5 actually reported the diagnosis, through quoted speech of his doctor, as coming from the patient himself through the reporting of his symptoms: ‘‘it sounds like you’re trying to tell me you have diabetes.’’ Consultant 5 uses the term ‘‘diabetics’’ in referring to others, but never used the nominalization about himself. He comments that a personal trainer ‘‘was fascinated that I had diabetes.’’ Thus it would appear that Consultant 5 is not identifying with the disease, but rather defining it as something that he ‘‘has.’’ In fact, he describes himself twice during his commentary as having ‘‘been basically healthy for 58 years.’’

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In terms of his emotional state, he begins with ‘‘shocked,’’ which he repeats, followed by ‘‘mad,’’ and then ‘‘discouraged’’ when he assumes that he won’t be able to watch his grandchildren grow up. He recounts a bit of humor in telling his younger brother, ‘‘fifty-eight’s a lousy year; just skip it,’’ the humor arising out of the play between the voluntary and involuntary. Yet by the end of his narrative he describes himself as ‘‘happy in my ability to adjust,’’ and he attributes his ability to get past the negative feelings by ‘‘learning’’ about the disease. In the process of learning, however, he was transformed from a ‘‘laid back, easy-goin’, don’tworry-about-it type of fella’’ into what his doctor labeled as ‘‘obsessivecompulsive,’’ as he monitored his own body with his new tools. With relation to counting carbs and calculating how many carbs he could eat, ‘‘and how that relates to the insulin and your body’s ability to deal with it . . . ahm it was an amazing thing.’’ At this point, however, he came up against his own perfectionism as he tried to control the system: ‘‘your body, even if you have a perfectly healthy pancreas, is not perfect.’’ With the new sense of control that he had with the new tools, he seemed to want to improve his own body’s functioning toward an illusory perfection. In keeping with these tendencies, he describes himself as having been a ‘‘sweet tea addict.’’ He says that he ‘‘just didn’t think I could give it up,’’ and yet after learning about how his body worked he was able to substitute diet colas. Emotional intensity is also expressed in the verbs Consultant 5 uses to describe his relationship to food: ‘‘eating is one of the favorite things that I do,’’ ‘‘my wife makes the world’s best pecan pie,’’ ‘‘I love vanilla ice cream,’’ ‘‘I’m a dedicated carnivore: I love red meat.’’ In the case of the meat, of course, he has realized that he has no restrictions apart from considerations of heart health, and in the case of the ice cream: ‘‘I eat ice cream almost every night. There’s a low-carb ice cream that tastes just almost as good as the regular ice cream. I can’t tell the di¤erence with chocolate sauce.’’ Consultant 5 exercises control over his diet, but without seeming to seriously deprive himself. In fact, he describes himself, as noted above, as ‘‘happy in my ability to adjust.’’ The picture that emerges with Consultant 5 is the self becoming fascinated with the workings of the body through access to new knowledge and tools in relation to diabetes. Consultant 5 closes with a sentiment reminiscent of consultant 4, reflecting the silver lining of the situation. He says that it (meaning diabetes) isn’t something that he would wish on anybody, but ‘‘in the long run I think that I will be healthier as I grow older because I have changed my eating habits and changed my weight and been able to do those things.’’

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3.6. Consultant 6: ‘‘I’m in total control.’’ Consultant 6, at the other end of the continuum, seems to have been able to transform an anticipated chronic disease into an experience with many positive dimensions, even finding a paradoxical form of freedom within its constraints. Like Consultants 1 and 4, Consultant 6 knew about his family history of diabetes. Unlike Consultant 1, he never refers to himself or anyone else as ‘‘a diabetic,’’ using instead ‘‘diabetic’’ as an adjective (‘‘[many in family] are all diabetic,’’ ‘‘when I did find out that I was diabetic,’’ ‘‘family members who were diabetic,’’ ‘‘a diabetic learning center,’’ or naming the disease as something that one can learn about and can control (‘‘with as many family members as I HAD with diabetes,’’ ‘‘knowing a little bit more about diabetes NOW than what I did THEN,’’ ‘‘thing that you need to do to control diabetes,’’ ‘‘diabetes in a way is somewhat of a very unique disease’’). Thus even though Consultant 6 doesn’t take the explicit stand of Consultant 4 (i.e., ‘‘I’m a person who has diabetes, not a diabetic.’’), his discourse suggests that he holds himself in the same relation to the disease. Consultant 6 anticipated the disease, but expressed it more explicitly than did Consultant 4 (‘‘I knew it was gonna happen one of these days’’). Like Consultant 4, Consultant 6 kept in touch with his doctor, but unlike Consultant 4, he expressed the relationship as collaborative, quoting himself as saying to his doctor, ‘‘oh, by the way, let’s check my blood sugars.’’ Even though Consultant 6 expresses some of the same regret that we saw with Consultant 1 concerning the possibility of having been able to forestall the onset of the disease (‘‘of course really knowing a little bit more about diabetes NOW than what I did THEN, I know I could have POSsibly kept it in ah abeyance or kept it from happening’’), his emotional accompaniment is much less intensely expressed: ‘‘I was really kinda aggravated with myself,’’ ‘‘so I was a little bit aggravated with myself,’’ ‘‘I was more disappointed’’). Instead of directing anger at himself, he comments that the first phone call he made was to his sister, to encourage her to get tested and get her lifestyle in order ‘‘so maybe that’ll benefit HER in years to come.’’ On the other hand, he described the situation when he was first diagnosed as ‘‘earth-shaking from the standpoint of well what do you do now?’’ Thus he seems to respond to the news with an essentially instrumental orientation, knowing some of the changes already because of having observed family members with diabetes. Consultant 6 talks about each of the four components of self-e‰cacy, and even though he doesn’t minimize the

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di‰culties he faced, he finds positive dimensions of the experience. In relation to diet, he comments that ‘‘I guess I was like most people. I ate anything I wanted when I wanted, as much as I wanted, so just the big thing about food was a big part of the lifestyle change.’’ He specifically says that ‘‘overcoming change in food was a big thing,’’ using the verb ‘‘overcome.’’ Yet immediately he focuses on what he calls ‘‘a good side of that,’’ because he notes that ‘‘I love vegetables.’’ He then links his change in eating habits to a dramatic drop in his blood sugars, which he describes as ‘‘kinda exciting.’’ Consultant 6 then builds on an existing characteristic of his (‘‘my wife says that I always had to have a hobby’’) and pursues ‘‘educating myself ’’ about diabetes with the same intensity, through the internet, books, talking with people, attending the diabetes clinic classes, etc. He also comments that ‘‘it has made shopping kind of an experience’’ because he reads food labels. He doesn’t, however, frame this practice as a burden, but rather as something pleasurable or interesting: rather than saying something like ‘‘I have to read all the food labels,’’ he says ‘‘I get to read all the food labels.’’ He frames the fact that he has to be more selective about the smaller quantity of food that he eats as ‘‘I’m kind of a food gourmet now,’’ noting that he eats for quality, ‘‘particularly from nutritional value.’’ The verb ‘‘love’’ appears again in relation to food, directed both toward broad categories of ‘‘fruit’’ and ‘‘bread,’’ but also toward the specific adaptations that he has devised to match his dietary requirements: ‘‘I love key limes now,’’ ‘‘so I get to eat those (ethnic crackerbreads) which I love anyway,’’ ‘‘I love oatmeal . . . so if I want oatmeal it’s either got to be for lunch or for dinner at night.’’ Consultant 5 was the only other person who actually used the verb ‘‘love’’ in relation to food, but it was only in relation to the forbidden food. Even when Consultant 6 mentions truly dangerous foods (‘‘now don’t get me started about my wife’s famous caramel cake or going to Krispy Kreme’’), he immediately shifts to an adaptation that he’s pleased about and can work into his diet occasionally: ‘‘but you know Krispy Kreme’s got a whole-wheat doughnut these days, nineteen grams.’’ Consultant 6 is able to comment, as he concludes his discussion of his dietary changes, ‘‘so I’m kinda happy in some regards.’’ All of this, however, is framed in terms of ‘‘controlling diabetes,’’ and this verb recurs in relation to the next topic that Consultant 6 takes up, exercise. In his case he got a lot of exercise with his job, but had to build more in, something he describes as ‘‘a big commitment.’’ Yet the verb ‘‘love’’ appears again immediately in framing the way that he

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meets the challenge: ‘‘I love to walk,’’ ‘‘I love to get up early on Saturday mornings . . . and I’ll strike out and go for a walk.’’ After briefly mentioning daily medication, Consultant 6 shifts to a discussion of the final component of the self-e‰cacy model exemplified by the monitoring of blood sugar. Consultant 6 actually anthropomorphizes his meter: ‘‘my meter has become my best friend.’’ He explains why by noting ‘‘because with that I can see what my body’s doing in terms of the food I eat or the exercise I get.’’ He seems to have a positive relation to the external machine that provides him with information about his own body: ‘‘using my meter to eat this to find out what it did to me I may be able to include that in my diet plan.’’ Thus the food is conceptualized as ‘‘doing things to me’’ that can be understood using the meter. It seems that the meter, the best friend, allows the ‘‘self ’’ who is reading the meter access to scientific information about the body that the conscious self has only indirect access to (i.e., through ‘‘feeling bad’’ if the blood sugar goes too low or high). Consultant 6, who refers fondly to a seventh-grade science teacher who encouraged him to never stop asking why, now can conceptualize himself in relation to the scientific method: ‘‘so I’ve been able to use myself as a guinea pig with my meter,’’ ‘‘I’m a BIG experiment.’’ Thus the scientific observer ‘‘self ’’ is able to use the meter to treat the body as an experimental animal, as part of the scientific pursuit of knowledge. Consultant 6 doesn’t refer to himself as ‘‘a diabetic,’’ but he does refer to himself as ‘‘a guinea pig,’’ and as ‘‘an experiment.’’ We see a continuation of his agency in relation to the doctor at the beginning of his narrative when he comments that ‘‘I don’t have to go to the doctor’s o‰ce; I can find out what foods are doing.’’ Consultant 6 links this to incentive, as Consultant 4 also did: the meter demonstrates the long-lasting benefits of exercise in terms of blood sugar. Consultant 6 ends with a paradoxical statement about diabetes and control: ‘‘so diabetes is in a way somewhat of a unique disease in that the person who has it is in more control of the disease than is the doctor.’’ Consultant 6 has gone from a collaborative role with the doctor to actually claiming greater power than the doctor. He concludes that ‘‘I really feel like in a large way I’m in total control of what this disease or how it progresses or how it stays under control.’’ Using ‘‘control’’ as a noun, with the modifier ‘‘total’’ (also, of course, modified by ‘‘in a large way’’) seems to be a stronger statement of agency than simply using ‘‘control’’ as a verb. ‘‘To be in total control of something’’ suggests oversight of a complex system rather than simply influence over one element, which is exactly what the management of the disease requires. The ‘‘I’’

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who is here the scientist self stands above the disease and controls it with the four elements of self-e‰cacy. Consultant 6 seems to have reframed an inherently negative and constraining bodily condition as one in which he can find interest and assume ‘‘total control,’’ with the paradoxical implications of freedom that such a definition entails.

4. Conclusion In examining the discourse of self-selected successful people coping with diabetes, we find a wide range of orientations of the ‘‘self ’’ to the body. The consultants’ stories have been discussed in terms of a continuum of emotional stance, from resentful resignation to the positive feelings associated with a sense of control of one’s health. According to literature regarding how people change behaviors, the continuum illustrates increasing self-e‰cacy toward the four behaviors that help manage the disease state. Consultants 1–3 are in the action stage, i.e., they are still trying on new behaviors to see how they fit within their lifestyle and making adjustments. A person with diabetes needs to develop self-e‰cacy for all four behaviors and may show greater achievement in some areas than in others. For example, Consultant 1 is still having di‰culty with one aspect of her care: blood sugar monitoring, and Consultant 2, if he continues, will eventually have developed a set of individualized daily behaviors to help him manage his disease. Consultants 4–6 are in the maintenance stage. They have learned to solve problems associated with the illness and can identify social and environmental supports needed to manage a chronic illness. Consultant 1 is the only one who defines herself as ‘‘a diabetic.’’ Her discourse reveals a person who is inhabiting a body that has the disease with which she identifies, whose aversion to needles has made her very aware of the physicality related to control of the disease, and who is coping successfully in a resigned but also resentful way. Her agency is oriented to her coping strategies, but also to distractions from her condition in the form of ‘‘activities.’’ Whereas Consultant 2 also describes frustration and resignation in his reaction to his diagnosis, the resignation is couched in terms of his choice (‘‘I can give up some things’’) in the context of his broader motivation: ‘‘I want to live and have a quality of life that is the best that I can possibly have.’’ Thus his agency marshals the discipline about his body that he had already established as part of his ‘‘self,’’ in the service of a longer-term goal. Consultant 3, who joked

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about ‘‘quitting,’’ enlisted his agency to overcome his own ignorance and arrogance to learn enough to create a successful feedback loop in his management strategies that supported his motivation. The only consultant to use the word ‘‘normal,’’ Consultant 3 concludes with a comforting message to the audience of people diagnosed with diabetes that they can overcome the disease ‘‘and live a normal life and never look back.’’ This last clause suggests the metaphor of a path or journey, with the diabetic diagnosis and adaptation as behind him in the past, and a ‘‘normal’’ life stretching out into the future. Consultant 4 emphasizes not only the discipline of the body as a system, speaking of ‘‘maintaining a balance,’’ and of staying within the ‘‘parameters,’’ he also conceptualizes the discipline of the body as a way to train one’s taste. Thus, the ‘‘cravings’’ that might be associated with a di¤erent dimension of the ‘‘self ’’ are not suppressed, but rather reshaped through bodily practice. Consultant 4 rejects the label ‘‘diabetic,’’ and is the first in our series so far to begin to conceptualize his situation, and the lifestyle adjustments that it has occasioned, in a positive way: ‘‘it’s caused me to have a higher level . . . enjoy a higher level of energy and health.’’ Consultant 5’s discourse presents us with the self becoming fascinated with the workings of the body through access to new knowledge and tools in relation to diabetes. Consultant 5 seems to have come to a conclusion similar to that of Consultant 4, choosing to look on the bright side of the situation. He notes that the disease isn’t something that he would wish on anybody, but ‘‘in the long run I think that I will be healthier as I grow older because I have changed my eating habits and changed my weight and been able to do those things.’’ At the other end of the emotional continuum, Consultant 6 seems to have reframed an inherently negative and constraining bodily condition as one in which he can find interest and assume ‘‘total control,’’ with the paradoxical implications of freedom that such a definition entails. The consultants were self-selected on the basis of their success, i.e., their ‘‘self-e‰cacy’’ in managing diabetes. It is important to keep in mind that there are many people diagnosed with diabetes who cannot change their behavior to manage their blood sugar. Although some of our consultants refer indirectly to the grim consequences of the untreated progression of the disease, no one mentions anything about blindness, amputations, or kidney/heart conditions overtly. It seems clear, however, that the perceived seriousness of the situation served as an important motivator. The success stories illustrate individual adventures through the stages of the Stages of Change Model (Prochaska et al. 1994), from not contemplating change, to considering change, to trying on new behaviors and adapting

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them to their lifestyles, to finally adopting a set of behaviors that they can live with while managing their disease. All seem to be aware, to some degree, of their own ironic situation: that as they’ve been forced to learn about their bodies and the disease, they have responded to the necessity to make lifestyle changes – changes that may possibly allow them to lead longer and relatively healthier lives. For all of our consultants, the ability to meet the challenge brought a great sense of self-worth, along with the confidence to face the inevitable changes that will accompany the progression of the disease. The increase of Type-2 diabetes related to obesity is a significant public health challenge in the United States. We believe that the educational materials that could be developed from these success stories could contribute significantly to solutions that are patient-centered (Knol et al. 2008), and raise doctors’ awareness of the importance of individualized agency in achieving self-e‰cacy. These individual voices carry the ‘‘o‰cial’’ health messages that need to be disseminated to the public, but they personalize the messages in an engaging way that o¤ers both successful models to motivate newly diagnosed patients and also specific details of individualized ‘‘best practices.’’ Thus each person has written his or her own story in relation to the unique challenge presented by the diagnosis. 5. Recommended readings (1) Glanz, K., B. Rimer and K. Viswanath (eds.). 2008. Health behavior and health education: Theory, research and practice, 4th edition. San Francisco: Wiley. The edited volume describes the need for behavior change, the important developments in theory and practice, and strategies for applying behaviors theories, including the Transtheoretical Model. This graduate level text provides the essential conceptual underpinnings for well-crafted research, e¤ective practice, and public policy regarding health issues. (2) Hayden, J. 2009. Introduction to health behavior theory. Sudbury, MA: Jones and Bartlett Publishers. This introduction provides an easy-to-understand, engaging introduction to several health behavior theories including the Transtheoretical Model. This book explains basics of theory, how theories are developed, and factors that influence health behaviors. Multiple examples are used to demonstrate how the theory is used in practice.

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References Bamberg, M. (ed.) 1997 Oral versions of personal experience: Three decades of narrative analysis [Special issue]. Journal of Narrative and Life History 7. 1–415. Baumann, R. 1986 Story, performance and event: Contextual studies of oral narrative. Cambridge: Cambridge University Press. Bruner, J. 2004 Life as narrative. Social Research 71(3). 691–710. Cheshire, J. and S. Ziebland 2005 Narrative as a resource in accounts of the experience of illness. In J. Thornborrow and J. Coates (eds.), The sociolinguistics of narrative, 17–40. Amsterdam: Benjamins. Davies, C. E. 2008 ‘‘We digress’’: Kathryn Tucker Windham and Southern storytelling style. Storytelling, Self, Society: An Interdisciplinary Journal of Storytelling Studies 4(3). 167–184. Davies, C. E. i.p. Southern storytelling: Historical and contemporary perspectives. In M. Picone and C. E. Davies (eds.), Language variety in the South: Historical and contemporary perspectives. Tuscaloosa: University of Alabama Press. Davies, B. and R. Harre´ 1999 Positioning: The discursive production of selves. Journal of the Theory of Social Behavior 20(1). 43–63. Hamilton, H. 1998 Reported speech and survivor identity in on-line bone marrow transplantation narratives. Journal of Sociolinguistics 2. 53–67. Helm, J. (ed.) 1967 Essays in the verbal and visual arts. Seattle, WA: University of Washington Press. Johnstone, B. 1990 Stories, community, and place: Narratives from middle America. Bloomington: Indiana University Press. Knol, L. L., C. E. Davies and L. W. Turner 2007 Pilot Study to Test Success Storytelling as an Intervention for Diabetes in the Primary Care Setting. Funded by the Southern Living Research Fund of the College of Human Environmental Sciences, the University of Alabama. Knol, L. L., C. E. Davies and L. W. Turner 2008 Success storytelling as an intervention for diabetes: Curriculum development. Paper presented at the Society for Nutrition Education 41st Annual Conference, Atlanta, GA.

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Labov, W. 1972

The transformation of experience in narrative syntax. In Language in the inner city: Studies in the black English vernacular, 354–396. Philadelphia, PA: University of Pennsylvania Press. Labov, W. and J. Waletzky 1967 Narrative analysis: Oral versions of personal experience. In J. Helm (ed.), Essays in the verbal and visual arts, 12–44. Seattle, WA: University of Washington Press. Norrick, N. R. 2000 Conversational narrative. Amsterdam: Benjamins. Peterson, K. A. and A. Hughes 2002 Readiness to change and clinical success in a diabetes educational program, Journal of the American Board of Family Practice 15. 266–271. Picone, M. and C. E. Davies (eds.) i.p. Language variety in the South: Historical and contemporary perspectives. Tuscaloosa: University of Alabama Press. Prochaska J., J. Norcross and C. DiClemente 1994 Changing for good. New York: HarperCollins Publishers. Schi¤rin, D. 1996 Narrative as self-portrait: Sociolinguistic constructions of identity. Language in Society 25. 167–203. Thornborrow, J. and J. Coates (eds.) 2005 The sociolinguistics of narrative. Amsterdam: Benjamins.

Part 4.

Bodies and body performances

Chapter 9 The discursive construction of the female body in family planning pamphlets Busi Makoni and Sinfree Makoni The contraceptive pill and injection are unique among technologies for their ability to stir up trouble: trouble between men and women, trouble between the old and the young, trouble between social conservatives and radicals, trouble of all sorts. (Kaler 2003: 1)

1. Preamble The aim of this chapter is to report on an analysis of family planning pamphlets distributed in Zimbabwe (from 1970 to 1982) as part of a campaign to promote deliberate forms of birth control through the concept of family planning. The focus is on the content and language used in the pamphlets, as this may provide significant insight into ‘‘the view of sexuality, contraception and the roles assigned by society to men and women’’ (Byrman 2001: 81). Contraceptives provide significant insight into the social construction and control of the body because even though the use of contraceptives is an individual and private exercise, its e¤ects and consequences are an issue of public concern. This chapter is therefore an exploration of the discursive construction of the body in family planning pamphlets used to educate and promote the use of various kinds of contraceptives. Even though there is growing literature on the body in applied linguistics (Ramanathan 2010) and the e¤ects of diseases such as HIV/AIDS (Higgins and Norton 2010; Jones and Norton 2010) and other conditions such as diabetes and epilepsy (Ramanathan and Makoni 2008) and Alzheimer’’s disease (de Bot and Makoni 2005; Ramanathan 1997), there is relatively little research in sociolinguistics ‘‘on the discursive construction of the female body generally, and the female reproductive system specifically’’ (Hayter 2005: 46). Using a framework based on Fairclough’s (1989) Critical Discourse Analysis (CDA) analysis, we explore how the female body is discursively

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constructed in family planning pamphlets. Two multilingual pamphlets were analyzed to determine how language and images are semantically integrated to form multi-semiotic texts in discussion of contraceptives and control of the female body. The analysis revealed three discursive elements related to contraceptive education and promotion. First is reproductive anatomy, which is described mainly in a very archaic language characterized by the use of metaphors of various kinds. The second discursive element relates to reproductive physiology that is described using a form of language in Shona used for expressing respect. An instructive description of the anatomy and physiology of the sex organs is conducted using a repertoire of descriptive terms drawn from the Shona language (a language spoken largely in southern Africa), all of which suggest the vulnerability of the female reproductive system. Third is education on the functioning of contraceptives, and the language used portrays the female body as highly vulnerable and at risk and therefore in need of protection. This aspect was described by the use of rhetorical strategies such as metaphors and imagery drawn from African languages. This approach seems linked to ensuring women’s future contraceptive use. The discourse employed in the pamphlets suggests that the female body, especially its reproductive system, is highly vulnerable and therefore in need of protection at all times. The discursive construction of the female body as vulnerable is also reflected through the pictorial imagery of a road where caution and restraint have to be exercised at all times (Hunt 1999; Thomas 2007). The use of western modes of contraception has been a ‘‘hot potato’’ since its introduction during the colonial period in Africa. Western modes of contraception, however, were introduced in a context where other forms of contraception were already in use, as Africans did practise deliberate forms of birth control which di¤ered significantly from western modes of birth control. In this chapter contraceptives are used as prisms through which to analyze the social construction of the body, in particular the female body, and the intersection of socio-cultural history and dynamics of the body with colonial and political life, and colonial and nationalistic discourses in Zimbabwe. The ‘‘pill’’ provides significant insights into how biomedicine and colonialism have co-evolved (Bala 2009). In fact, regulating sexuality was one of the principal objectives of colonial institutions (Foucault 1980). The e¤ects of ‘‘bio-power’’ have been a source of controversy (Thomas 2007), with some Africanists arguing that bio-power did not have as much penetration power as may have been imagined. In this chapter, however, the argument is that bio-power has deep penetration

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power because its e¤ects could be felt in African bedrooms during debates about the desirability of the use of contraceptives between couples. Over the years there has been much research into family planning and dissemination of information related to family planning (Byrman 2001). In this chapter an attempt is made at establishing a connection between family planning and linguistic practices related to the dissemination of information on family planning to di¤erent ethnic groups. These di¤erent ethnic groups have their own culturally defined repertoire of linguistic resources used for talking about issues pertinent to birth control. Birth control is central to the body and the language used in disseminating such information gives insight into the discursive construction of the body. Also, issues about fertility and reproduction are some of the defining features of the body which, when embedded in a social context, become a site of contestation. This chapter is an analysis of the extent to which language practices in contraceptives may provide insight into language use, especially the discourse used for social reconstruction of the body. The reproductive system has been central to feminist research with regard to the body, power, and discourse (Howson 2001). Research in this area has argued that the descriptive terminology used for the female reproductive system portrays it as weak and fragile (Barrett and Harper 2001). Despite the interest shown in the female reproductive system, research on language used in the promotion of the use of contraceptives is lacking. Yet the use of contraceptives is closely related to the reproductive system in terms of pregnancy, fertility, and the female body, all of which are central to the female reproductive system. This chapter fills the gap by contributing to an understanding of contraceptive discourse within a family planning promotion and education perspective. In so doing, the chapter explores the points of intersection between gender and discourses of contraception. Using CDA as an analytic and interpretative framework, this chapter analyses pamphlets from the Family Planning Association of Rhodesia (FPAR)1 to establish discourses about the body and how these intersect with issues of culture and body politics. Conceptually, the chapter adopts a three-pronged perspective which analyzes the complementary and sometimes highly conflicting perspectives on the body from African studies, sociolinguistics, and the politics of body in gender studies. To a limited 1. Note that the country now named Zimbabwe used to be called Rhodesia and the period under analysis falls under the phase when the country was still called Rhodesia.

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extent, the chapter reflects the relationship between the body and political ideology in Africa. In the analysis of the family planning pamphlets the focus is on the discourses on reproduction and the body. The focus in the analysis is on how language is deployed in promoting the use of contraceptives and reinforced by visuals and what this reflects about how the body is discursively constructed. In the light of the above this chapter seeks to address the following questions: (i) What can we learn through an analysis of discourses about contraceptives in relation to the social, linguistic and political construction of the body? (ii) What does the analysis of the pamphlets used by family planning campaigns show about the discursive construction of the body and representations of sexuality in Africa? The chapter begins with a brief background about the origins and development of family planning and the use of contraceptives in Zimbabwe. This section establishes why the use of contraception is so controversial in Zimbabwe and possibly in other African countries. This section further provides a feasible explanation of what the conflict over contraceptives tells us about the various ways in which the body is discursively constructed and controlled. In other words, the background section focuses on the political tensions arising from the introduction of ‘‘modern’’ contraceptives as well as the politicisation of the female body. The chapter then proceeds to a description of the methodology used in analysing the pamphlets. The last part deals with a discussion of the findings and what these reflect in terms of the discursive construction of the body.

2. Background: Origins and development of family planning The FPAR was a non-governmental organization (NGO) originally set up to address the reproductive concerns of white women but later changed its name to the Zimbabwean Family Planning Association after Zimbabwe got its independence from the government of Ian Smith. Relatively early in its career, however, it was expanded to include Africans, particularly African women. The genesis of the FPAR is, by and large, a product of a series of visits by a representative of the US-funded Pathfinder Fund, Edith Gates. Her main commitment was ‘‘to spread the gospel of birth

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control to all who would listen, black and white’’ (West 1994: 452). The role of the Pathfinder Fund in Rhodesia reflected the complex interconnectedness between globalisation, Rhodesian local politics, reproduction and fertility (Thomas 2007; Hunt 1999). Local Rhodesian politics was highly racialized and divisive whereas the Pathfinder Fund was focused on birth control methods irrespective of race. At an international level, the Pathfinder Fund was one of the major sources of funding for the FPAR. The impact of the Pathfinder Fund and the FPAR occurred in a context in which issues about sexuality had been one of the major concerns of British colonialism. This concern is reflected in the domesticity ideology espoused in courses such as hygiene, sewing, etc. (Summers 2002), which were taught to all African females of school age. The Rhodesian government was a major ‘‘local’’ source of funding for the FPAR although, for various reasons, it preferred to keep its participation in family planning matters at ‘‘arm’s length.’’ The Rhodesian government distanced itself from family planning activities because its philosophy of population control in order to avert a ‘‘national catastrophe’’ was contested by a lot of other stakeholders, especially African men and African nationalists. All these di¤erent stakeholders had ideas about how fertility and the female body in particular had to be controlled and protected either from excessive procreation or from interference with procreation. Fears of an impending national catastrophe by the Rhodesian government were at times articulated in highly apocalyptic discourses, as the following remark by Esther Sapire reflects: For many years there has been an ostrich-like attitude and an ominous silence about the population problem, but recently demographers, economists, world organizations and responsible governments have been uttering dire warnings about its consequences . . . the problems are vast and urgent and to quote Dr Roger Bernard of the Pathfinder Boston, who visited us recently after going to India ‘‘In India the time has run out, but in Rhodesia you have five minutes more!’’ (Sapire 1971: 105).

These discourses were sharpened towards the end of the 1970s and coincided with the military confrontation between African nationalists and the white regime. Discourses reflecting fear of an impending national catastrophe were expressed by Peter Dodds, the third director of the FPAR, when he went to the extent of proposing that hormonal contraceptives should be available to African women without prescription or medical supervision because of the urgent need to control African population growth (Dodds 1978: 160). In fact, the FPAR annual report states that ‘‘sterilization be

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freely and conveniently available as a method of contraception to competent adults’’ as a recommendation to curb a possible population explosion (FPAR Annual Report and Accounts 1977–1978, no pagination). The political fears of an impending population explosion and its challenges to African hegemony were justified through a series of local and regional scientific journals such as the Rhodesian Journal of Economics, the Rhodesian Science News, and the South African Medical Journal. Scientific knowledge about the female body and its relationship with economic issues was therefore mobilized to serve family planning objectives. Until late into the 1970s, family planning only targeted African women and thus portrayed it as an exclusively female enterprise. African men were antagonistic to the use of modern contraceptives because from a male perspective family planning was feminized; after all a majority of the distributors of contraceptives were women. Most of the distributors came from the communities they served, and sometimes contraceptives were sold by women going from door to door. It is conceivable that the feminization of family planning and men’s exclusion from most of its operations intensified their antagonism. In a highly patriarchal society, such antagonism was based on fear of being marginalized. Resistance to ‘‘modern’’ contraceptives is also evident in the negative portrayal of the distributors of contraceptives. In nationalist discourses the distributors were referred to pejoratively as ‘‘saboteurs’’ or ‘‘baby killers.’’ Politically, the distributors were perceived to be complicit with white rule. The relationship between the distributors and white rule was more complicated than that, however, because there were ‘‘ambiguous lines that divided engagement from appropriation, deflection from denial, and desire from discipline, [which] confounded the colonial encounter’’ (Cooper and Stoler 1997: 6). The question that arises, however, is to what extent the FPAR was successful in its mission. If the FPAR is assessed against the number of ‘‘contraceptive acceptors,’’ then it succeeded in its enterprise, but if its objective was to propose methods of contraception which superseded traditional methods, then it was only partially successful. In the period from 1970 to 1980, the FPAR reported an increase in women who visited clinics for family planning in August from 9,000 in 1972 to 46,000 in 1978. By 1979, 14 percent of married women between the ages of 15 and 44 were reported to be using ‘‘modern contraceptives,’’ a proportion extremely high compared with most sub-Saharan African countries (Kaler 2000). Interestingly enough, the 1977–1978 FPAR annual report also records a substantial increase in the use of condoms as contraceptives. Condoms

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were also made available to ‘‘virtually all urban beer halls in the country’’ (FPAR 1977–1978, no pagination). Since most Africans socialized at beer halls, farm stores, and European owned stores it was therefore strategic to make the condoms readily accessible in such places. Because about 10 percent of the African population worked in European farms, farm stores and beer halls became important sites for the distribution of condoms. There is no evidence, however, that an increase in the number of sites necessarily resulted in an increase in the use of condoms by African men. Even though it has been shown that men do have knowledge of contraception they do not necessarily utilize that knowledge (Tularog, Deressa, Ali and Daven 2006). The FPAR disseminated its message through a number of di¤erent but closely related avenues such as films, radio programmes, distributed pamphlets, and direct contact between the FPAR nurses and educators and the communities which they served. Important FPAR films that were shown were entitled: Family talks about sex, His Responsibility, and Life before birth. The films were shown in mobile vans to maximize their distribution and extend their reach in ‘‘big’’ and ‘‘small’’ cities alike. The campaigns of the FPAR were part of colonial coercive strategies consolidated through films and included a wide distribution of pamphlets celebrating the use of contraceptives and warning against the disadvantages of ‘‘big’’ families. Politically, family planning was an important enterprise because controlling sexuality and reproduction was an integral part of institutional regulation of ‘‘African sexuality,’’ (Thomas 2003: 8). It was argued that the ‘‘moral perversion’’ (Jeater 1993) of Africans was apparent in the presence of polygamy, child marriage, and domesticity (Comaro¤ and Roberts 1977). Family planning projects, particularly, the easy availability of condoms, reflected white men’s fears of black men’s sexuality. White men feared the development of sexual relations between white women and African men or the so-called ‘‘black Peril’’ (Kennedy 1987; van Onselen 1982). White women sought to retain control over their own reproductive systems while, at the same time, in their sexual encounters with African male houseboys, sought to control the sexuality of the houseboys by encouraging them to use condoms. Euro-American anxiety was obviously not restricted to Rhodesia as similar experiences have been reported in countries such as Kenya (Thomas 2003) and Uganda. Even though one of the recurring concerns in most African colonies was the desire to control the African body, the project was motivated by di¤erent reasons. For example, in Uganda, the family planning objective was to increase the number of African births so as to meet anticipated

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increased demands for labor. In order to increase population growth and fertility, Ugandan family planning launched vigorous anti-syphilis campaigns because it decreased chances of female fertility which, in turn, reduced labour. In Rhodesia the strategy was exactly the opposite. The objective was to facilitate population control. On commercial farms, white farmers were strongly in favor of the use of contraceptives by African women in order to maximize their profits and increase the utility of their labor. White farmers were averse to pregnancies because repeated births limited the time female workers would spend working on the farms. White farms were a ‘‘total institution’’ (Go¤man 1961) which controlled both male and female bodies. The coercive power of white farmers was intensified by the fact that most farm workers were not indigenous Zimbabweans. They were part of migrant labour from neighbouring countries such as Zambia, Malawi and Mozambique. This created space which rendered them vulnerable to exploitation and easy manipulation. Nonetheless, Zimbabwean nationalists, like all other male-dominated nationalist movements, were strongly patriarchal and therefore felt the need to control female bodies on grounds of cultural practices. They vehemently objected to the use of contraceptives, and some of the family planning facilities became targets of military attacks. Nationalists treated family planning as part of ‘‘a conspiracy to control the black population,’’ ‘‘a form of genocide, uncalled for population control’’ (West 1994: 447). The objection to family planning was framed in discourses such as ‘‘de-stocking.’’ De-stocking was a strategy used to limit the number of cattle for each household in order to prevent overgrazing. Africans viewed de-stocking as a ploy to control their accumulation of wealth since cattle were an important index of wealth and social status. De-stocking was extremely unpopular in African communities and was used as a prism through which to frame the activities of the FPAR. Although African nationalists were opposed to family planning, there was tension between family planning announcements and practice, topdown and ground level. Whereas African nationalists strongly opposed any form of population control, young women who became pregnant were confined to isolated camps as a form of punishment, called Osibisa (Lyons 2004; Nhongo-Simbanegavi 2000). During the liberation war pregnant female guerrillas were referred to as ‘‘prostitutes.’’ This was a surprisingly negative characterization of femininity among nationalists who strongly supported female fertility and were strong advocates for African cultural practices. African cultural practices view pregnancy as a celebration of femininity. Yet the treatment women combatants received

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was incompatible with the rhetoric of a return to African cultural practices. It was also incompatible with the ‘‘newly’’ developed mantra of gender equality. What it shows, however, is that male nationalist leaders were able to take sexual liberties, and yet they made di¤erent rules for women. During the liberation war, ‘‘in sexual matters one moral law . . . applied to men and another to women’’ (Byrman 2001: 93). Discourses on family planning and the use of contraceptives suggest that African liberation fighters, on the one hand, constructed a socialist politics from the material experience of the female body in sex and motherhood. This politics was rooted in concerns about the plight of workingclass women and shaped by contemporary ideas of modernity, sexuality, and feminism. The interest in the female body, sexuality, and politics led nationalists into controlling and pursuing what appear to be conflicting discourses suggesting a tension between the materiality of the body and its discursive meaning. It is therefore not surprising that the use of contraceptives meant di¤erent things to di¤erent people of di¤erent genders. As already established, some men and, in particular, African nationalists, regarded the use of contraceptives as a form of ‘‘genocide.’’ In spite of the di¤erent objectives of Rhodesian whites and Zimbabwean nationalists, both camps seem to have had similar approaches towards the body, especially the female body. They regarded the female body not as a physical entity but as a social entity which they aimed to regulate. African female voices were excluded and silenced in o‰cial discourses even though issues pertinent to family planning directly a¤ected them. Prior to the introduction of western forms of contraceptives, African women used other birth control methods such as coitus interruptus and in order to space their children e¤ectively they practised abstinence for two years after childbirth. This was made possible because most of the males (i.e., husbands) were working in urban areas or had been taken to neighboring South Africa to work in the mines as migrant labour. The birth control procedures were variously referred to as Kuronga mhuri kwechiShona kwekarekare (‘old Shona methods of arranging the family’) or kuzvibata (‘holding oneself ’). There were birth control methods which were primarily dependent on men such as kurasira panze (‘throwing outside’), which in western terminology would be equivalent to the withdrawal method. Others were female in orientation such as the practice of jumping over some shrubs to seal or open the womb. The new contraceptives did not replace traditional methods, but were integrated into the pre-existing contraceptive frameworks, producing a type of hybridization. What this shows is that there was a repertoire of terms used to describe the

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reproductive system as well as an established lexicon to describe traditional forms of contraception, which were then transposed and used in describing ‘‘new’’ forms of contraception. Discourses of family planning drew upon pre-existing discourses and subsequently redeployed them in new contexts. The use of traditional methods of birth control was partially dependent upon the advice of older female members of the community. Knowledge about these birth control methods is imparted to the males and females alike during rites of passage ceremonies such as ‘‘virginity testing’’ or circumcision for males. Nevertheless, understanding the use of both traditional and modern forms of birth control has to be viewed through the lens of the social networks in which the individuals were embedded. For instance, the collection of the ‘‘pill’’ might be made by friends, acquaintances, and other associates so as to evade the attention of husbands who were often against the use of western forms of birth control. The myth was that western forms of birth control, including the pill, a¤ected male virility. There was, however, one major di¤erence between the ‘‘traditional’’ and ‘‘modern’’ forms of birth control, a di¤erence based on the political dynamics of the body and who had control over it. The ‘‘pill’’ as a form of modern ‘‘contraceptive technology’’ (Wilder 2004: 822) was infused with multiple and variable and sometimes conflicting meanings. As Kaler (2003) notes, the plasticity of the meaning of the pill created acute social division and tension between the old and the young, wives and husbands, daughters-in-law and mothers-in-law, nationalists and colonial governments, depending on the social role which they performed (Kaler 2009; West 1994). Although at face value acrimony occurred over whether women should use contraceptives, at a more philosophical level the discord was part of a complex power struggle over who controlled the female body, the nature of femininity and the social and political significance of that control between men and women, the white regime and African nationalists, men and women, and indeed amongst women themselves. Even though both African women and the colonial regime supported the use of contraceptives they were motivated by di¤erent reasons. For the colonial regime the objective was to control the increase of African population as a group, whereas African women were using contraceptives to consolidate control over their own bodies. The orientation of women towards contraceptives varied, however, depending upon the social roles that they played. In some situations the same women may have been willing to use contraceptives when they were spouses, whereas they may have strongly objected to the use of contraceptives when they were socially

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identified as sisters-in-law or mothers-in-law, a category of powerful women who wielded considerable power and influenced decisions in the clan. As sisters-in-law or mothers-in-law, women focused on the interest of the clan rather than individual interests. Since the clan has to ‘‘grow,’’ contraceptive use was anathema and therefore had to be discouraged at all costs. Women were therefore not a homogeneous group. Similarly, men were not a monolithic category in their reactions to the use of modern contraceptives. Notably, the cooperation between whites and African women over the use of the ‘‘pill’’ destabilized the balance of reproductive power in their families. Men faced a challenge to their authority not only from women but from a white colonial apparatus; the ‘‘pill.’’ The clinic, and all that it embodied, represented the degree to which colonialism now had an impact on the privacy of Africans even in their most intimate lives (Kaler 2000). White colonial infiltration of the bedroom should be read as part of a wider project of shaping African domesticity, the fact that women were, on the one hand, subverting patriarchal hierarchy, while, on the other hand, reinforcing patriarchy reflects deep seated contradictions within each social body. After all, social construction has long established that the body is not just a biological entity but rather that perceptions about the body are socially constructed (Hancock et al. 2000). In this regard, ‘‘discourse socially constructs the body’’ (Hayter 2005: 47) in specific ways ‘‘that reflect the dominant discourse of the time’’ (Hayter ibid.). The discourse is value-laden, and it reflects power and influence (Armstrong 1993, 1998; Williams and Bendelow 1998). Although Zimbabwean nationalists were initially vehemently opposed to the African ‘‘baby boom,’’ they subsequently shifted to control population growth. The population control policy of the Zimbabwean government was expressed in terms of child spacing and not through the ‘‘foreign’’ discourses of family planning. The discourse of child spacing was not intended to limit the growth of the African population but to encourage the spacing of children. The Zimbabwean government preferred the rhetoric of ‘‘child spacing’’ because the discourses of family planning had negative connotations, so there has been a change in the rhetoric from that of the Rhodesian government: There is, however, one respect in which the policy has shown remarkable consistency: namely, in the role expected of women in family planning. African women, though having little say in the male dominated circles where such decisions have been made, albeit they were expected dutifully and unquestionably to accept the prevailing nationalist position on family planning. (West 1994: 470)

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Although the Zimbabwean government reversed its position from antito pro-natal and the frame was written largely by men, there is significant awareness that it is an illusion to conceive decisions about family planning as individualistic, homo economicus, and that the idea of ‘‘economic planning and indeed political planning are independent and separate sets of processes and problems’’ (Freireman undated: 1). Nonetheless, Zimbabwe was not the only African country that had family planning policies. For instance, countries such as Ghana, Tunisia, and Kenya have very explicit family planning policies. In fact, more recently, attempts in Rwanda to limit family size to three have been resisted as families seek to become bigger to compensate for lives lost during the genocide. Another important aspect related to the challenges of family planning is its failure to take cognisance of the di¤erent types of sexual intercourse and their cultural meanings. Given the paucity of written records, however, an understanding of traditional beliefs and practices related to deliberate birth control might be complicated. The cultural meanings can be established through a combination of both oral and written records. Family planning is therefore a socio-historical exercise, and a framing of body terms has to be sensitive to such socio-historical traditions. 3. Methodology The methodology used in analyzing the family planning pamphlets is drawn largely from the work by Fairclough (1989) and multimodality. The pamphlets are analyzed as multimodal texts using the meaningmaking features specific to the relevant semiotic system, the text and the accompanying graphics (i.e., the visuals) that complement the text-image as part of meaning-making. Analyzing the text without taking into consideration the accompanying images would be inadequate: as Kress points out, it ‘‘is now impossible to make sense of texts, even of their linguistic parts alone without having a clear idea of what these features might be contributing to the meaning of the text’’ (2000: 337). This approach is particularly suited for the analysis of such promotional material as pamphlets because these are multi-semiotic. They integrate language and images into a semantic unit. The analysis makes it possible to investigate the ‘‘linguistic and visual forms of semiosis in order to determine how metaphorical constructions of meaning (i.e., semiotic metaphors or ideational meanings) are deployed across the linguistic and visual modes of communication’’ (O’Halloran 2008: 444).

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4. Findings The content of pamphlets on contraceptives emphasizes the vulnerable state of the female body and the need for it to be protected. In figure 1, the upside-down triangle is a visual metaphor in which an implied comparison is made between a road sign and the reproductive system. The upside-down triangle is reminiscent of a ‘‘give way’’ road sign in Zimbabwe. The sign is a signal to drivers that caution should be the watchword on that part of the road. Pictures of di¤erent forms of contraceptives are included inside the ‘‘yield’’ sign and the implied meaning between text and image seems to be that the reproductive system is at risk and contraceptives are precautionary measures. The imagery invoked is that of a road and the metaphorical message of safety and protection, control and caution, with reference to the reproductive system is conveyed through the image in its totality. The upside-down triangle with pictures of various types of contraceptives creates a composite image (Smith, Moriarty, Barbatsis and Kenney 2005), suggesting that because of the risk and vulnerability of the female reproductive system, caution has to be exercised in the use of the products inside the upside-down triangle. The analogical juxtaposition of graphics provides pictorial metaphors, all of which revolve around a discourse of restraint, control and vulnerability. In figure 2, which is the second page of the same pamphlet, the focus is on education about the functioning of the ‘‘pill’’. The graphics show three packets of di¤erent types of pills. To put the graphics into context the text (extract [1]) above the graphics states that the pill is a female-oriented type of contraceptive which can be used by women for a long period of time without any side-e¤ects: Extract (1) Mapirisi inzira yemadzimai yokuronga mhuri yokushandisa kwenguiva pfupi. (‘Pills are a way for women to arrange the family and they are used over a period of time.’) The road metaphor, i.e., nzira, runs through all the pamphlets in order to continue the discourse of vulnerability, caution, and restraint. The e‰cacy of the pill is explained by the repeated use of the word dzivirira (‘close, stop, restrain,’ etc.). The word is used in a metaphorical sense. In this context it is used to underscore the notion of maintaining protection and the implied emphasis is on ‘‘the role of contraception in protecting

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Figure 1.

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Figure 2.

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the body’’ (Hayter 2005: 49). The body is therefore discursively constructed as highly vulnerable, and the language used in the text seems to suggest that women have no control over their bodies but that contraceptives do have the power to control the female body. For example, in extract (2) the pill provides women with periods of rest and good health: Extract (2) Mapirisi anobatsira madzimai kutivazorore vasati vaita pamwe pamuviri kuitira kutivave nehutano hwakakwana. (‘Pills help women so that they rest before making another baby so that they can have good health.’) Implicit in the above extract is the claim that the woman is no longer in control of her body as she needs the pill to allow her to rest; and failure to maintain the pill regimen places the female body in a vulnerable state. The terms discursively construct the reproductive system as vulnerable to pregnancy and therefore in need of protection for reasons related to women’s health and the couple’s economic well-being, hence: Extract (3) Anobatsira mhuri kuti ive neupenyu hurinani. (‘They help the family to have a better quality of life.’) There are discernible protocols in explaining how contraceptives work. The first relates to body education in which a specific discursive technique is adopted in discussing the functioning, and e‰cacy (or lack thereof ) in contraceptive use. In this technique both anatomical and physiological discourse are used in combination with a discourse reflective of ‘‘control, restraint, vulnerability and protection’’ (Hayter 2005: 49). In extract (4), for instance, in the description of the function of the pill, the discourse of restraint is evident in the explanation regarding the importance of keeping to a contraceptive regimen: Extract (4) Mapiritsi inzira yokuronga mhuri inoshandiswa nemadzimai mazhinji. Anemushonga unodzivirira zai raamai kuti risaita mwana. (‘Pills are a way to arrange the family used by most women. They have medicine that protects the woman’s egg from making a baby.’) In extract (5) below, a discourse of restraint and extreme caution is used in describing the need to adhere to a specific contraceptive regimen.

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If the strict regimen is not followed, then the body is placed at risk, which underscores the vulnerability of the female reproductive system to pregnancy. The role of the pill is to dzivirira (‘stop, restrain’) the release of an egg, which again is an emphasis on the discourse of protecting the female body: Extract (5) Anonwiwa zuva roga roga panguuva imwecheteyo kuti ashande zvakanaka. Kana akanwiwa zvakanaka mazuva ose, mapirisi inzira inoshanda zvikuru kudzivirira pamuviri. (‘They are taken every day at the same time for them to work well. If taken properly daily, pills are a way (i.e., method) that works very well to prevent pregnancy.’) In the above extract the description of the adherence to a contraceptive regimen suggests that the female reproductive system needs a regulatory mechanism and the contraceptive provides such a mechanism. Failure to follow this regimen leads to a breakdown; hence the emphasis on the metaphor of caution because of the vulnerability of the female reproductive system and, ipso facto, the female body. In figure 3, the first picture in the pamphlet is a woman taking a pill from a cup. She is also wearing a head turban, which is traditional headgear for married women. The drawing is reinforced by a text made up of three paragraphs. The text explains that the pill prevents pregnancy by ‘‘restraining’’ the woman’s egg. Notably, the woman who takes the pill is referred to as amai (‘mother’, even if there is no biological relationship between the individuals) with the accompanying turban underscoring her marital status. In Shona this is a formal and respectful way of addressing a married woman or a senior woman in the community who also happens to be married. By using terms such as amai, the FPAR was appropriating traditional status terms and using them in a new format for a di¤erent type of discourse in which the status of amai is enhanced whereas that of baba (‘father’) is not. This means the family planning campaigns have a strong impact on gender relations within Shona communities because amai unlike baba is not treated as a source of knowledge. Through the use of terms such as amai as the source of advice ‘‘interpersonal relationships’’ of respect are fostered. The text and the graphic suggest, however, that the FPAR focused on married women at the exclusion of unmarried women who might have been divorced or widowed and yet sexually active as well. In figure 4 the graphic shows a nurse pointing to the di¤erent types of contraceptives.

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Figure 3.

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Figure 4.

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The graphic showing a man and a woman suggests a changed outlook on contraception. As has been pointed out, initially African men did not want their wives to use contraceptives. The inclusion of an African man in the graphic perhaps reflects a shift in ideology in that birth control now included men and was no longer restricted to African women only, which, essentially, is a contrast in that in the early phases of family planning men were excluded from direct engagement and were treated as antagonists who at times had to be deceived. Since family planning had in the early phases of its inception been feminized, the presence of a male figure in the drawings marks a shift in family planning to include both genders (Kim, Marangwanda and Kols 1996; Byrman 2001). It appears that this particular pamphlet and the accompanying text are directed towards couples for purposes of birth control. As Byrman (2001: 92) states, it is conceivable that owing to ‘‘the condemnatory attitude of society to premarital and extramarital relationships’’ unmarried individuals engaged in sexual relationships are left out. In this regard, family planning, especially the use of contraceptives, is used as a means to shape reproductive behavior, sexuality, and what constitutes an ideal family life. Terminology of protection and risk is used repeatedly in the pamphlets. The notion of ‘‘cover’’ is also used repeatedly in explaining the function of the diaphragm. The cervix needs to be ‘‘covered’’ and hence the diaphragm is described as inodzivirira muromo wechibereko (‘closing the mouth of the womb’). The socially and culturally constructed ideology of masculinity and femininity emerges, however, in the language used to describe the male and female reproductive anatomy. Sperm is referred to as mbeu yababa (‘father’s seeds’) although mbeu yemurume (‘male seeds’) would also have been appropriate. The expression carries connotations of respect. If this expression is juxtaposed with zai ramai (‘mother’s egg’), however, it is possible that the intended meaning is that procreation occurs within marriage and therefore the terms used are for couples rather than women or men in general. Nonetheless, there is also a possibility that the use of mbeu yababa is contrasted with the female reproductive organs to indicate a di¤erentiation between the sexes. A woman’s ovaries are termed basikiti (‘basket’), suggesting permeability or porosity. The text also utilizes di¤erences in the status or position of men and women in society. All the vital male reproductive organs are described as belonging to the father; for example, mbeu yababa (‘father’s sperm’), nhengo yababa (‘father’s penis’), mabhora ababa (‘father’s balls’), etc. whereas the female organs are described using a container metaphor.

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Terminology used in the discourse related to the discursive construction of women’s bodies is value-laden. This is something that has also been observed by other researchers in this area (Laquer 1987; Weeks 1989; Hawkes 1996; Shorter 1997). The prevailing metaphors used in constructing the female body discursively revolve around vulnerability and unpredictability.

5. Discussion and concluding comments The main focus of this chapter is the discursive construction of the female body through contraceptive education contained in pamphlets from the Zimbabwe Family Planning Association. The pamphlets were produced during the period 1970 to 1982. In the pamphlets, the female reproductive system is discursively constructed ‘‘as vulnerable to pregnancy and requiring contraceptive protection’’ (Hayter 2005: 46). This chapter sought to explore the discursive strategies used in disseminating information and the manner in which the body is discursively constructed. The findings suggest that discourses used in the pamphlets are similar to discourses that have been used in medical discourse to describe the female reproductive system. The template of depiction of the usage of contraceptives is similar to that used in other parts of the world, notably the UK (Hayter 2005). This creates the impression that the Zimbabwean pamphlets are a localization of a British, perhaps even western, template. In the pamphlets the female reproductive system is discursively constructed as weak and vulnerable. This discourse is part of an awareness-raising strategy so that women are knowledgeable about the health risks of frequent pregnancy and the economic benefits of having fewer children. This strategy is commonly used in other medical discourse educating individuals about health practices. Martin (1989) and Laws (1990) point out that in medical discourse the female body is discursively constructed as breaking down and degenerating. The terminology and discourse used to describe the reproductive organs do not underscore a degenerating body or failing system but rather a ‘‘fully functioning machine liable to produce if not kept in check’’ (Hayter 2005: 51). The purpose of the pamphlet is to provide women with knowledge about family planning, but also to motivate them to ‘‘self-care’’ and to continue the use of contraceptives; hence the language used emphasizes the requirement for protection. In the pamphlets, risk discourse is used to underscore the notion of the susceptibility to illness of the female

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body if it is subjected to frequent pregnancies. The notion of risk, however, has been used in medical discourse and plays a key role in encouraging individuals to care for themselves (Lupton 1997; Nettleton 1997). The rationale in using risk discourse is that ‘‘risk and its reduction or management’’ (Hayter 2005: 52) are central to self-care, and in the case of contraception this would be in the form of continued and e¤ective use of contraceptives. In the pamphlets the concept of reproductive vulnerability is discursively constructed in order to educate women about their bodies and in the use of contraceptives. Central to body education is a process of ‘‘facilitating e¤ective contraceptive use’’ (Hayter 2005: 52). Another discourse that emerges from the pamphlets relates to di¤erences in describing the male and female reproductive organs. For instance, whereas the female reproductive system is described in commonly used stereotypical terms associated with females being weak and in need of protection, the male reproductive system is described by metaphors associated with strength and virility (Martin 1991). Family planning pamphlets are likely to be e¤ective because they are distributed in tandem with those which address issues about women’s rights, HIV/AIDS, and other contagious disease. The pamphlets are distributed both publicly and in schools as part of health education in the school curriculum in both elementary and high schools. The co-depiction of contraception with chronic conditions depicts the former (contraception) as a risky enterprise, rather than an integral aspect of women. The co-presence of text and visuals in the pamphlets enhances its reader friendliness even to women with relatively limited formal literacy and who are likely to concentrate on the visuals more than the text. In spite of the e¤ectiveness of the co-depiction of text and visuals, the philosophy in family planning and women’s rights is that the individual has ultimate control over their individual body. This, however, runs contrary to an Afrocentric philosophy in which the community has ultimate responsibility over the female body, as exemplified in the case of the Shone, the Ngwa-Igbo, and the Ubang in Nigeria. The di¤erences in the status and role of the individual in family planning and African discourses militate against the e¤ectiveness of family planning campaigns. Family planning may have to propose new types of discourses which establish a dialogical relationship between individual and community responsibilities towards contraception and health upkeep rather than the individuated discourses underpinning the family planning pamphlets and other health campaigns (Airhihenbuwa 2000) currently constructed in Africa.

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The tension between the individual and the community in family planning reflects the degree to which modern health campaigns have to be sensitive to cultural practices. This is not to suggest that all types of cultural practices should be retained irrespective of their potential adverse e¤ects. In other words, family planning campaigns can be used to challenge some aspects of Zimbabwean cultural practices. The extent to which family planning campaigns can be used to challenge some cultural practices has to be subject to extreme caution because the campaigns may be construed as covert political campaigns, opposing the government via the female body, so to speak. In order for the family planning campaigns to be more readily accessible to the young and have a sense of credibility, it may be necessary to write them in urban vernaculars rather than standardized African languages which are rarely used by the young.

6. Recommended reading (1) Thomas, L. 2007. Women, reproduction and the state in Kenya. University of Berkeley, CA: University of California Press. The main theme of the book is women’s bodies, particularly female genital cutting, pre-marital pregnancy, abortion, and other practices. The book demonstrates the various ways in which the body and reproductive health shaped and shifted owing to the impact of colonialism. (2) Hunt, R. 1999. A colonial lexicon: of birth ritual, medicalization, and mobility in the Congo. Durham, NC: Duke University Press. This book is an important contribution to the development of an understanding of the historiography of medical practice, missionary activities, gender and social class in Congo. The book traces the history of childbirth medicalization and movement from pro-natalism to post-colonialism. Medical knowledge constituted a site of conflict between colonisers and colonized. References Airhihenbuwa, C. 2000 A critical assessment of theories/models used in Health Communication for HIV/AIDS. Journal of Health Communication 5. 5– 15.

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Armstrong, D. 1993 Armstrong, D. 1998 Bala, P. 2009

Public health spaces and the fabrication of identity. Sociology 27. 340–393. Bodies of knowledge/knowledge of bodies. In C. Jones and R. Porter (eds.), Reassessing Foucault, 17–27. London: Routledge.

Biomedicine as a contested site: some revelations in imperial contexts. Lanham, MD, Boulder, CO, New York: Rowan & Littlefield. Barrett, G. and R. Harper 2001 Health professionals’ attitudes to the deregulation of emergency contraception (or the problem of female sexuality). Journal of Sociology of Health and Illness 22(2). 197–216. Byrman, G. 2001 From marital precautions to love power: Gender construction in Swedish contraceptive brochures. Nordic Journal of Women’s Studies 9(2). 89–97. Comaro¤, J. L. and S. Roberts 1977 Marriage and extra-marital sexuality: the dialectics of legal change among the Kgatla. Journal of African Law 21(1), 97–123. Cooper, F. and A. L. Stoler 1997 Between metropole and colony: Rethinking a research agenda. In F. Cooper and A. L. Stoler (eds.), Tensions of empire: Colonial cultures in a bourgeois world, 1–58. Berkeley, CA et al.: University of California Press. Cooper, F. and A. L. Stoler (eds.) 1997 Tensions of empire: Colonial cultures in a bourgeois world. Berkeley, CA, Los Angeles & London: University of California Press. de Bot, K. and S. Makoni 2005 Language and aging in multilingual contexts. Multilingual Matters: Clevedon. Dodds, P. 1978 The community and family planning. Rhodesia Science News 12(3). 160–162. Fairclough, N. 1989 Language and power. London: Longman. Foucault, M. 1980 The history of sexuality. Vol. 1: An introduction (transl. by R. Hurley). New York: Vintage Books. Gallagher, C. and T. Laquer (eds.) 1987 The making of modern body: Sexuality and society in the nineteenth century. Berkeley, CA: University of California Press. Go¤man, E. 1961 Asylums: Essays on the social situation of mental patients and other Inmates. Doubleday: New York.

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Hancock, P., B. Hughes, E. Jagger, K. Patterson, R. Russell, E. Tulle-Winton and M. Tyler 2000 The body, culture and society: An introduction. Open University Press: Buckingham. Hawkes, G. 1996 A sociology of sex and sexuality. Open University Press: Buckingham. Hayter, M. 2005 The social construction of ‘‘reproductive vulnerability’’ in family planning Clinic. Journal of Advanced Nursing 51(1). 46–54. Higgins, C. and B. Norton (eds.) 2010 Language and HIV/AIDS. Clevedon: Multilingual Matters. Howson, A. 2001 Embodied obligation: The female body and health surveillance. In S. Nettleton and J. Watson (eds.), The body in everyday life, 218–240. London: Routledge. Hunt, N. 1999 A colonial lexicon: Of birth ritual, medicalization, and mobility in the Congo (body, commodity, text). Durham, NC & London: Duke University Press. Jeater, D. 1993 Moral perversion and power: The construction of moral discourse in southern Rhodesia. Clarendon: Oxford University Press. Jones, S. and B. Norton 2010 Uganda’s ABC program on HIV/AIDS prevention: A discursive site of struggle. In C. Higgins and B. Norton (eds.), Language and HIV/AIDS, 155–177. Clevedon: Multilingual Matters. Jones, C. and R. Porter (eds.) 1998 Reassessing Foucault. London: Routledge. Kaler, A. 2000 ‘‘Who has told you to do this thing?’’ Toward a feminist interpretation of contraceptive di¤usion in Rhodesia, 1970–1980. Journal of Women in Culture and Society 25(3). 678–708. Kaler, A. 2003 Running after pills: Politics, gender, and contraception in colonial Zimbabwe. Portsmouth, NH: Heinemann. Kennedy, D. 1987 Islands of white: Settler society and culture in Kenya and Southern Rhodesia, 1890–1939. Durham, NC: Duke University Press. Kim Y. M., C. Marangwanda and A. Kols 1996 Involving men in family planning: The Zimbabwe male motivation and family method expansion project, 1993–1994 (IEC Field Report Series, No. 3). Baltimore, MD: John Hopkins Centre for Communication.

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Lyons, T. 2004 Martin, E. 1989 Martin, E. 1991

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Multimodality: Challenges to thinking about language. TESOL Quarterly 34. 337–340. Orgasm, generation, and the politics of reproductive biology. In C. Gallagher and T. Laquer (eds.), The making of modern body: Sexuality and society in the nineteenth century, 1–41. Berkeley, CA: University of California Press. Issues of blood: The politics of menstruation. London: Macmillan. Foucault and the medicalization critique. In A. Petersen and R. Bunton (eds.), Foucault, health and medicine, 94–112. Milton Keynes: Routledge. Guns and guerilla girls: Women in the Zimbabwean Liberation Struggle. Trenton: World Press. The woman in the body. Milton Keynes: Open University Press. The egg and the sperm: How science has constructed a romance based upon stereotypical male-female roles. Journal of Women in Culture and Society 16(3). 485–501.

Governing the risky self: how to become healthy, wealthy and wise. In A. Petersen and R. Bunton (eds.), Foucault, health and medicine, 207–222. Milton Keynes: Routledge. Nettleton, S. and J. Watson (eds.) 2001 The body in everyday life. London: Routledge. Nhongo-Simbanegavi, J. 2000 For better or worse: Women and ZANLA in Zimbabwe’s liberation struggle. Harare: Weaver Press. O’Halloran, K. L. 2008 Systemic functional-multimodal discourse analysis (SF-MDA): Constructing ideational meaning using language and visual imagery. Visual Communication 7(4). 443–475. Petersen, A. and R. Bunton (eds.) 1997 Foucault, health and medicine. Milton Keynes: Routledge. Ramanathan, V. 1997 Alzheimer discourse: Some sociolinguistic dimensions. Mahwah, NJ: Lawrence Erlbaum. Ramanathan, V. 2010 Bodies and language: ailments, health, disabilities. New York: Multilingual Matters.

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Ramanathan, V. and S. Makoni 2008 Bringing the body back in body narratives: The mislanguaging of bodies in biomedical, societal, and poststructuralist discourses on diabetes and epilepsy. Critical Inquiry in Language Studies 4(4). 283–306. Sapire, K. E. 1971 Family planning. Rhodesia Science News 5(4). 104–108. Shorter, E. 1997 Women’s bodies: A social history of women’s encounter with health, ill-health and medicine. New Brunswick, NJ: Transaction Publishers. Smith, K. L., S. Moriarty, G. Barbatsis and K. Kenney (eds.) 2005 Handbook of visual communication: Theory Method and Media. New Jersey: Lawrence Erlbaum Associates. Summers, C. 2002 Colonial lessons: Africans’ education in Southern Rhodesia, 1918– 1940. Portsmouth, NH: Heinemann. Thomas, L. 2003 Politics of the world: Women, reproduction, and the State in Kenya. Berkeley, CA: University of California Press. Thomas, L. 2007 Politics of the womb, reproduction and the state in Kenya. Berkeley, CA: University of California Press. Tularog, T., W. Deressa, A. Ali and G. Daven 2006 The role of men in contraceptives use and fertility preference in Hossana Town. Ethiopian Journal of Health Development 20(3). 152–159. Van Onselen, C. 1982 The witches of suburbia: Domestic service on the Witwatersrand, 1890–1914 (vol. 2). London: Longman. Weeks, J. 1989 Sex, politics and society: The regulation of sexuality since 1800. London: Longman. West, M. 1994 Nationalism, race, and Gender: the politics of family planning. The Society of the Social History of Medicine 7(3). 447–471. Wilder, E. I. 2004 Review of the book Running after pills: Politics, gender, and contraception in Colonial Zimbabwe. American Journal of Sociology 110(3). 822–823. Williams, S. J. and G. A. Bendelow 1998 The lived body: Sociological themes, embodied issues. London: Routledge.

Chapter 10 Blood talk: A discursive perspective on transcultural identity and mental health Matthew T. Prior So . . . inside my roots . . . I still have a Chinese root . . . but . . . I grew up in Vietnam. That makes big di¤erence there. Even . . . so . . . it doesn’t mean you grow up you can be Vietnamese. ’Cuz your blood is not. — ‘‘John’’ (immigrant from Vietnam)

1. Introduction In this chapter, I explore the role of language and blood in negotiating transcultural1 identity and mental health. My purpose is to bring closer attention to the ways in which individuals caught up in identity struggles make visible their social worlds and sense-making processes as they wrestle with conflicting a‰liations and ideologies. Viewing ethnographic interviews as a discursive space for engaging with these dilemmas (Billig et al. 1988; Taylor 2003), I focus my discussion on a two-year case study with an adult immigrant man from Vietnam living in the United States. I examine how he draws upon talk of conflict and belonging as topic, dilemma, and resource in the bid to construct a coherent and cohesive self. Specific attention is given to his representation of struggles with ethnicity (e.g., ‘‘Asian,’’ ‘‘Chinese,’’ ‘‘Vietnamese’’) and sexual orientation (e.g., ‘‘straight,’’ ‘‘gay’’), and his ongoing work to resolve these tensions. Problematizing assumptions surrounding transcultural identity and the 1. I prefer the term ‘‘transcultural’’ (cf. Castles and Miller 2003; Ortiz 1940, as cited in Allatson 2002) over ‘‘transnational,’’ as the latter maintains a reliance on identity tied to nation/state while the former o¤ers a broader consideration of ‘‘trans’’ (-national, -cultural, -ethnic, -gendered, etc.) a‰liations – taking into account the potential tensions among them.

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body, analysis demonstrates that amidst identity fragmentation, it is Chinese blood and ancestry that this speaker draws on to create a symbolic and physical link to stability and belonging. Finally, I discuss the potential implications of a discursive approach to identity work and sense making for an understanding of transcultural belonging and mental health. In the following sections, I first provide a theoretical overview to immigration, mental health, identity, and the discursive constructionist framework employed here. I then examine talk of identity conflict by this speaker to see: (a) his representation of dilemmas surrounding identity and belonging, and (b) the rhetorical and sense-making strategies he makes use of to create resolution.

2. Theoretical frameworks 2.1. Immigration, mental health, and ethnic identity Previous research has demonstrated that displacement and immigration are not simply physical or economic, they are also closely linked to mental health and social well-being (Berry 2001; Foner 2001; Mahalingam 2006; Portes and Rumbaut 1996). Among the various factors influencing the psychological health of immigrants, researchers have shown a positive ethnic identity to be particularly significant (Phinney, Horenczy, Liebkind and Vedder 2001; Tewari and Alvarez 2008). Moreover, evidence suggests that ‘‘[t]he importance of ethnic identity as a factor in well-being becomes stronger with longer residence in the country of settlement’’ (Lansford, Deater-Deckard and Bornstein 2007: 59). As a consequence, there are important implications for the ways in which people view themselves and how society in turn views them – particularly over the long-term and in relation to their networks of identification and a‰liation (Barker 2003; Phinney et al. 2001; Tewari and Alvarez 2008). As Verkuyten (2005) points out, ‘‘categories structure everyday life, give a sense of being and belonging, and provide a point of reference’’ (p. 180). In sum, the processes by which individuals locate and identify themselves and others are important components of ongoing mental health work. However, as I will discuss, for some transculturals, the process of self-identification can itself be a site of trouble, due to multiple and even competing categories and their associated social evaluations.

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2.2. Hybrid identities Following the ‘‘postmodern turn’’ across the social sciences (Delamont and Atkinson 2004), a number of applied linguists and L2 (second language) researchers (e.g., Block 2007; Gutie´rrez, Baquedano-Lopez and Tejeda 1999; Menard-Warwick 2009; Pavlenko and Blackledge 2004) have taken up the discourse of hybridity (Bhabha 1990) and its rejection of essentialist conceptualizations of identity as immutable and predetermined by biology, culture, and national origin. Much of this sociallygrounded and critically-oriented work has drawn attention to immigrant, minority, and gendered identities, and has focused on the instability and plurality of self and the potential for resistance and empowerment. An important contribution such research has made is the shift of focus on ultimate linguistic attainment and successful acculturation to the recognition of multi-lingual and multi-cultural individuals and their multi-directional trajectories and ongoing processes of identity (re)negotiation. Despite the widespread rejection of essentialism and celebration of the positive and emancipatory potential of hybrid identities,2 there is growing recognition that, at least for some, multiple and even contradictory a‰liations may lead to conflict and challenges to self-presentation and positive self-conceptualization (Docker and Fischer 2000; Verkuyten 2005). Moreover, labeling everything as fluid and multiple runs the reductionist risk of also ignoring the stability and situatedness of self and experience. According to During (2005), ‘‘the concept of hybridity . . . seems to be making a theoretical and utopian rather than a practical point’’ (p. 152). Seeking a more practical application of the concept, Kraidy (2005; see also Nederveen Pieterse 2009: vi) argues, ‘‘It is therefore imperative to situate every analysis of hybridity in a specific context where the conditions that shape hybridities are addressed.’’ Yet, amidst the academic critiques of identity in the postmodern era, often left unexamined are the context-specific ways in which transcultural individuals themselves go about organizing and making sense of identity – that is, how they make identities visible, accountable, understandable, and

2. As Yamaguchi (2005) points out, perhaps identities (plural) rather than identity (singular) is a more useful term, due to the situated and dynamic nature of self-construction. Anthias (2002), however, argues against the use of the term ‘‘identity’’ because it implies something owned by the individual, rather than a relational process. In using the term ‘‘identity’’ in this paper, I am referring to the dynamic relationship between Self and Other.

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resolvable (or not). It is this situated sense making of identity and belonging that is explored throughout this chapter. 2.3. A discursive constructionist framework To engage with mental health and the ways in which identity dilemmas and solutions are represented and negotiated in discourse, I take a discursive constructionist approach (cf. Potter and Hepburn 2008; Sparkes and Smith 2008) informed by conversation analytic (CA) work on accounts (Buttny 1993, 2004; Drew 1998; Sacks 1992; Woo‰tt 1992) and discourse analytic work on ideological dilemmas (Billig et al. 1988; Billig 2005; Speer 2005), and identity (Benwell and Stokoe 2006; Meinhof and Galasinksi 2005; Spickard and Burroughs 2000). By accounts, I am referring to the ways in which speakers describe or justify their responses to problematic events (cf. Buttny 2003). This requires both a commitment to an analysis grounded in sequence and structure in the data as well as a consideration of potential extra-discursive links. Before continuing, a few words of clarification are in order. First, when I use the terms ‘‘mental’’ and ‘‘psychological,’’ no claims are being made in support or rejection of internal or individual processes. Neither am I attempting to triangulate or otherwise determine the veracity of talk. Rather, I am interested in the ways in which speakers represent or talk about such things (i.e., psychological matters as ‘‘ways of talking’’; Edwards 1999). An advantage of a discursive constructionist approach is that it encourages a healthy skepticism toward our taken-for-granted understandings of identity, mental health, the body, or even the world. By examining how speakers represent aspects of their social worlds as dilemmatic, stable, multiple, etc., we can better understand how sense making is done at the level of practical engagement rather than theory or presumption. As Taylor (2003: 196) discusses, it is not simply the case that stability is a given: This is because it can be argued that unity and orderliness are created or achieved precisely by overcoming flux, variability and incoherence. In other words, unity is not integral in the sense of being ‘given’ or existing prior to the talk but is produced in and through lived experience and practices, including talk, and this is an ongoing task.

Thus, the processes of mental health here are treated as this ‘‘ongoing task’’ of creating order.

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Finally, as Billig (2001) points out, by examining ‘‘patterns of discussion and argument’’ (p. 220), the analyst can examine what issues are being raised or challenged as well as how certain ideologies and stances are made to be commonsense or (un)challengeable. In the following analysis, I seek to unpack these ideologies and sense making work. 3. Data and analysis The data extracts presented in this chapter come from a longitudinal ethnographic and narrative-based study with working-class immigrant men from Cambodia and Vietnam in the US and Canada. The focus of the case study presented here is ‘‘John,’’3 a former refugee to the US from Vietnam. John and I first met in Hawai’i through mutual acquaintances three months before the start of this research in 2003. As we became acquainted and I discussed my interest in interviewing immigrants about their experiences with language, immigration, and life in the US, he agreed and expressed a desire to have them documented for himself and others. Data consist mainly of informal ethnographic interviews in L2 English4 covering topics such as immigration, language learning, work, hobbies, culture, family, and social participation and belonging. I began the interviews by asking John about his experiences learning English and coming to and living in the US and Hawai’i. Recognizing interviews as co- constructed events and sites of data generation rather than data collection (Byrne 2004; Given 2008), I made an e¤ort to allow John the freedom to direct the interview to topics that he represented as significant to an understanding of him and his experiences. At the same time, approaching interviews as active conversational encounters (Holstein and Gubrium 2004; Potter and Wetherell 1987), I actively participated by following up on his talk about identity conflict and at times even challenged his claims to better make visible his accounting practices and ideological dilemmas. I conducted 8 hours of audiorecorded interviews with John over a period of three months in 2003 and carried out follow-up interviews in 2004. Many of our meetings were also informal conversations in the context of socializing, outdoor activities, and mealtimes. Additional observations and notes of John in other social interactions supplemented the recorded data. 3. Pseudonym. 4. Although John’s talk is in L2 English, I am not focusing here on matters of linguistic development or competence.

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John described how he and his family escaped from South Vietnam to the Philippines in 1978 as ‘‘boat people’’ after Vietnam fell to communist rule in 1975. After two years in a refugee camp, he and his family, with the aid of relatives and church sponsors, were able to immigrate to southern California when John was a teenager. Shortly after graduating from senior high school, he enrolled in a trade school to become a hairstylist, and in 1988 he made the decision to move alone to Hawai’i, where he found employment in a small hair salon catering to local residents. John described himself as a second-generation ‘‘Chinese born in Vietnam.’’ He stated that his native languages are Vietnamese and Teochew (a southern Chinese dialect), and laid claim to basic proficiency in conversational Mandarin and Cantonese, although I have observed his Chinesespeaking friends challenge his ability with the latter two languages. Despite marked English pronunciation and morphosyntactic constructions, John reported having no trouble with everyday communication in English. Observing his interactions, he appears to have a very high communicative competency – in part, I believe, due to his successful use of repair strategies and skill in selecting, shifting, and maintaining topics of conversation. In particular, John displays a remarkable facility with the subtleties of American humor and is well known among his friends for his jokes, puns, and playful wit. At the time of the interviews, John was living with his American partner of three years, a local man he met through a network of friends and acquaintances. Although John was open to most of his friends about his sexual identity, and participated in many social events and activities in the ‘‘gay’’5 community, he stated that he actively worked to hide his sexuality from his family, boss, landlord, clients, and casual acquaintances, and expressed crippling fears of being discovered. It is these fears and dilemmas that inform this study. Through an analysis of selected data extracts6 from our early interactions, I first focus attention on the ways in which John constructs identity and belonging as conflicted. I then examine the work that he engages in to create cohesion and stability. 5. It is important to note that while John at times identifies himself as ‘‘gay,’’ he made a distinction, on the one hand, between a pre-gay self (before coming to the US) linked to same-sex desire, but without the label ‘‘gay,’’ and on the other, a post-immigration gay self tied to Western notions of gay culture and community. 6. Transcription procedures were based on CA conventions (Atkinson and Heritage 1984).

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4. Dilemmas of belonging Is it possible for one person to be (or even claim to be) Chinese, Vietnamese, American, immigrant, refugee, gay, straight, partnered, and single ? These are just some of the labels that John alternatively uses, accepts, and denies in his interactions with others. Although a view of identity as hybrid and contingent allows for co-existing a‰liations (e.g., spouse and daughter, student and teacher), less certain is how to consider seemingly mutuallyexclusive binaries7 such as gay–straight, single–partnered, and even gay– Asian (cf. Sullivan and Jackson 2001; Zastrow and Kirst-Ashman 2010). ‘‘I’ll be another person’’ John, discussing his ongoing struggles to fit into various communities (e.g., American, Vietnamese, Asian, Local), made dilemmas linked to ethnicity, sexuality, masculinity, and cultural expectations central to his talk. Faced with the incompatibility between sexual orientation and cultural values, one way that John represents how he deals with identity conflict is by compartmentalizing or constructing his identity according to the context and interactants. For example, he reported that with his family he would be ‘‘straight,’’ and ‘‘single,’’ and in another context, ‘‘gay’’ and ‘‘partnered.’’ In the following extract, John and I discuss these contextspecific performances and his concerns regarding family and sexuality: (1) 01 02 03 04 05 06 07 08 09 10 11 12

M: do you [change for people? J: [( ) yeah¼ M: ¼like to your family, J: YEAH ( ) yeah like ( ) if I’m around family (.) you understand? (0.5) M: you’re what? J: I’ll be di¤- I’ll be one person. if I’m around another group (.) I’ll be another person. M: so, with your family you ar::e, (.) J: strictly stra[ight M: [straight

7. This is not to claim that these binaries are necessarily incompatible. For critiques of such binaries, see Duggan (1998), Williams-Leo´n and Nakashima (2001).

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13 (1.7) 14 J: uh[: 15 M: [single 16 J: single 17 (3.0) 18 J: and (1.0) nice person. 19 M: okay 20 (0.9) 21 J: and no gay. 22 (0.9) 23 M: okay 24 (1.0) 25 J: >but now-< (1.0) but (4.3) y:es.

My question in line 1 (‘‘Do you change for people?’’) represents John’s identity work as a general interactional strategy contingent on the expectations of others, and John confirms this understanding (line 3). Narrowing the scope of this identity work, I then bring up family as a specific example and he gives an emphatic agreement (line 5) and begins to explain how he must act around them. When I indicate trouble understanding or hearing what he said (line 7), John shifts his account from how he is with family back to a description of a more general level of identity work (lines 8–9). He describes this work not simply as ‘‘changing’’ for others but as becoming a di¤erent person (lines 8–9). Thus, he represents himself not as one person with multiple identities, but as someone fragmented into separate selves. He also brings up this singular identity performance in contrast with a group (‘‘If I’m around another group (.) I’ll be another person’’). In other words, within his description he is locating himself on the periphery – as an individual outside of and subject to a group, rather than part of it. As I pursue the topic of how he is with his family, John collaboratively completes my sentence, describing himself in that context as ‘‘strictly straight’’ and ‘‘single’’ (taking up my prompt in line 15). After a substantial three-second pause, he adds ‘‘and (1.0) nice person’’ (line 18), completing his description with a three-part list (Je¤erson 1990). A feature of a three-part list is to rhetorically tie the three items to a greater whole. Thus, ‘‘strictly straight’’ and ‘‘single’’ are not simply parts of his identity with his family, they represent that identity. A possible inference that can be made from his talk here is that a gay identity would be negative or not

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nice. After my acknowledgement of his response (line 19), John then adds ‘‘and no gay’’ (line 21), making it clear that his presentation of self with family precludes any associations with being gay. Moreover, his claims in this segment are made without any hesitations or qualifications: they are categorical assertions (e.g., ‘‘strictly straight,’’ ‘‘no gay’’) – again indicating the fragmentation of self into two parts: a straight, single, and nice self versus a gay self. Line 25 (‘‘>but now-well, at least I 06 want< people think I am. £

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M: oh:¼ J: ¼cu[z M: [why? (1.0) J: I guess because (.) I work (like) a-among the straight community? M:  uhuh J:  so, (.) I guess (.) so (.) like (.) so to me I’m like a sailboat? (.) I sail wherever that (.) the wind blow me to? (0.7) M: mhm (1.8) J: so if the wind blow me a gay direction, >I can go to  gay . but if it blow me to a straight direction<  I can go straight direction .  M: hm J: so (.) I can yeah (.) go to (.) yeah (.) basically (.) I split myself in pieces. (0.7) M: UH: (.) and how does that feel? (1.4) J: it not good sometime bu:t, (2.0) like I say (0.8) I have to live with all these lie and it- (.) it feel (.) not too good. (1.3) but then, (.) hopefully it not be continue going  but- (.) I- (.) HOPEfully it not continue going but I don’t know when [(.) i]t¼ M: [oh: ] J: ¼could stop (.) unless I tell (.) come out (.) and tell everybody. I still don’t have the nerve

Summarizing his presentation of self at work, John describes himself as ‘‘a good worker,’’ ‘‘John,’’ and ‘‘straight’’ (lines 2–3) – producing another three-part list in response to my question. My laughter in line 4 and request for confirmation (‘‘Really?’’) playfully challenges the truthfulness of John’s statement by drawing on our previously established understandings of John’s sexual orientation. My challenge and John’s subsequent laughter and hedges (‘‘yeah (.) well-’’) (5) indicate that both of us are orienting to something in his claim as problematic. At this point in his talk, John does not go so far as to state he was intentionally deceiving his boss and clients; rather, he indicates that he carefully presents himself at work in such a way that a ‘‘default’’ socially normative identity (i.e., straight) is not violated (‘‘at least I want people to think I am’’) (lines 5–6).

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A curious aspect of our exchange in extract (2) is that of the three assertions John made (‘‘I’m a good worker,’’ ‘‘I’m John,’’ and ‘‘I’m straight’’), both of us focus on sexual orientation rather than on John’s work performance (possible, since he is often playfully teased by friends for being sleepy and somewhat lazy) or even his name (also possible, since he uses an Americanized nickname at work rather than his given Vietnamese name). My challenge (line 4) is sequentially located immediately after John says, ‘‘I’m straight’’ (lines 2) and is initiated by my laugher. The mutual focus on sexual orientation, though not explicitly stated, is confirmed in John’s subsequent response in line 11 as he justifies his deception, basing it on the desire to fit in the norms and expectations of the straight community. At least in relation to family and work, John expresses a desire for people to see him as straight, and works to maintain these appearances. However, such identity compartmentalization is not without consequences. While John is adept at constructing and mediating multiple identities in various contexts, he often makes mention of the emotional and mental stress he feels from continuously lying to others. Representing his sense of self as ‘‘split,’’ he often expresses a lack of control and frustration over the power that others have in directing his identity. In lines 13–14, John invokes a ‘‘sailboat’’ metaphor, depicting himself as other- rather than self-directed. By characterizing others and circumstances as the blowing wind, and himself as the powerless sailboat dependent on the wishes of others, he is able to give an account of his deceptive performances as socially and relationally driven, rather than arising from internal or selfdriven motivations. In terms of discursive sense making, it is not just the content of his talk that is also of interest, but also how it is produced. In lines 21–22, John produces this utterance as a thought in progress – indicated by his incomplete utterances and self-confirmations (‘‘I can yeah (.) go to (.) yeah’’) and then the result of the sense-making: ‘‘basically (.) I split myself in pieces.’’ As a result of John’s stated lack of self-directedness, he portrays conflict as the outcome, painting a picture of a fractured and plural self. Although John presents the act of ‘‘coming out’’ (line 31) as a candidate solution for resolving this confict, he reports being unsure when he could ever be able to do that. Drawing upon metaphors such as ‘‘sailboat,’’ ‘‘splitting in pieces,’’ ‘‘I sail wherever,’’ and ‘‘wind blow me,’’ John (re)constructs and performs the action and movement in his life, but it is all other-directed and without stability.

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Of course, this struggle is not produced in a vacuum. I am also contributing to the shaping of his talk. In line 24, by asking John to tell me how this feels, I am treating his identity conflict as emotional and requiring an emotional response. After I ask him about his feelings toward this situation, he then goes on to describe these ‘‘not good’’ (line 26) feelings as a direct result of being forced to live with all these lies. The segment from lines 26–32 shows the ‘‘psychological’’ work he is doing to describe and make sense of this conflict. His utterance ‘‘like I say. . .’’ suggests this is represented thought (Couper-Kuhlen 2007) – as an example of the kind of thing he tells himself when faced with these dilemmas – showing that this struggle and sense making is ongoing. Although in extract (1) he indicated a dilemma but abandoned its resolution (‘‘>but now-< (1.0) but (4.3) y:es’’), in this segment he pursues and even o¤ers up a possible, but reluctant solution (i.e., coming out). Again, through his restarts, pauses, and the contrast marker ‘‘but,’’ he portrays his response to these identity struggles: rather than just accepting them, he comes up against them in the search for resolution. In lines 27–29, he expresses his hopefulness that the cycle will not continue, but there it is presented as an abstract wish, rather than something achievable. Then, he o¤ers up a potential solution: to ‘‘come out’’ and tell everybody (31). The responsibility for making the change is now shifted onto himself – showing that if there is to be change, he must be the one to initiate it. However, this is also shown to be emotion-laden and frightening as it requires not just honesty but the ability to overcome fear (‘‘I still don’t have the nerve’’). Although hopeful, he represents that change as presently unlikely.

5. Blood and belonging Based on the discussion so far of John’s talk of his dilemmas surrounding sexuality and ethnicity, one might be led to assume that John experiences a ‘‘schizophrenic’’ sense of self and belonging in which he lives in constant fear of discovery as he juggles his multiple identities for others. As shown, one way that he deals with this conflict is by compartmentalizing identity as context- and audience-specific performances. However, for the individual carrying out these compartmentalized identity performances, there may be a sense of inauthenticity or ‘‘faking it.’’ Indeed, as shown in his data extracts, John describes his identity performances as ‘‘lying’’ to others and denying his true self, and admits it is taking a psychological toll on his wellbeing.

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‘‘I always say I’m Chinese’’ So, does John simply compartmentalize himself while juggling his various identities? Is he just a sailboat floating to and fro at the whims of others? Is there no room for him to be active (rather than reactive)? Based on an analysis of John’s interviews and social interactions, another strategy I have found that he uses to anchor himself amidst conflict around ethnicity and sexuality is by latching on to and constructing a stable (and essentialist) Chinese identity based on blood. In the following extracts we begin to work together to unpack some of John’s ideological work regarding his Chinese-ness: (3) 01 02 03 04 05 06 07 08 09 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27

J: M: J: M: J:

M:

J: M: J: M: J: M: J: M: J:

M: J:

to me I always say I’m Chinese. because you’re chinese? because (.) that’s where my parents originally from. uhuh and we- (.) I think we have a lot of (.) Chinese blood (I always) (.) even though (2.0) my heart always toward Vietnam cuz that’s where I grew up. (1.7) but (.) I always identify myself as a Chinese. (1.0) so: if I said (.) to you, (.) ‘‘are you Vietnamese?’’ (.) what would you say? (2.0) I would say ‘‘no. I’m- (.) I’m born in Vietnam, but doesn’t make me I’m Vietnamese.’’ oh (.) so if I said ‘‘are you Chinese?’’ yeah. yeah (.) so you speak Chinese? I do. you speak Mandarin? a little bit (.) a little bit Cantonese¼ ¼uhuh a little bit of (.) my own dialect which is (.) I don’t know. so man- (.) nobody heard about Chu Chow? ((Teochew)) (.) have you heard of Chow Chow or (.) Fukien ((41.0 discussion about Fukien and related languages)) but which is your strongest language? Vietnamese.

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28 M: Vietnamese? but you identify s- (.) more strongly to Chinese ¼ 29 J: ¼mhm¼ 30 M: ¼culture. 31 J: mhm 32 M: even though stronger language is Vietnamese. 33 J: right (.) cuz (.) culture is Chinese.

It is one thing to make a claim of being Chinese, but it is another to have that claim legitimated. John goes through some interesting discursive work to demonstrate this identity claim as authentic. First, in line 1 he begins with an extreme case formulation (Pomerantz 1986) (‘‘I always say I’m Chinese’’) that insists on the consistency of his Chinese claims. After linking his claims to his parents’ birthplace (China), he attends to a possible challenge (lines 5–8) by making it clear that he is not rejecting Vietnam (‘‘my heart always toward Vietnam’’). In other words, he is creating a distinction between the emotional and the material (i.e., Vietnam is ‘‘home,’’ but China is the ‘‘roots’’). Establishing identity claims based on blood, he makes a Chinese identity as the only possible choice. Again, he repeats that he ‘‘always’’ identifies himself as Chinese (lines 7–8). As conversation continues, despite my overt attempts to link ethnicity with place of birth (line 10) and language ability (lines 17, 19 and 26), John rejects these as determining factors. According to John’s representation, ethnic identity is dependent on self-identification, ancestry/blood, and cultural traditions, not on mother tongue or language proficiency. This goes against Lim’s (1996: 173) claim that ‘‘the capacity to speak the mother tongue with competence is important in our construction of an Asian American immigrant.’’ It also contradicts Masequesmay’s (2003) study of lesbian and bisexual Vietnamese women that found proficiency in one’s heritage language to be a necessary and ‘‘symbolic act of liberation,’’ which allows queer Vietnamese to validate and construct both an ethnic and queer identity (Masequesmay 2003). Liebkind (1999), however, finds no contradiction between ethnic identity and lack of language ability. She asserts that while language can be an important factor of ethnic identity, it need not be the most significant one. ‘‘You have to have Chinese blood’’ Throughout the interviews and his observed social interactions, John continually emphasizes his Chineseness over his identity as Vietnamese. Extract

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(4) best sums up John’s claim of identity tied to ancestry and culture, not dependent on birthplace or language skills, and shows us the rhetorical work involved in carrying this out. To better understand John’s view of his Chinese identity, I asked him to explicitly state what makes him Chinese. Once again, he reiterated the importance of blood and culture, not language, as determiners of ethnicity: (4) 01 M: so, what makes somebody Chinese¼is it (.) they speak the 02 language, or is it just (.) culture? (.) or (1.4) what do you think? 03 J: UH: (1.6) to me have to do some blood. because we got- we 04 have a blood line. we got a Chinese ¼ 05 M: ¼> so [you have to have Chinese blood.< 06 J: [  blood  07 yeah. (.) because (1.7) w-well (.) I-I-I didn’t study quite a lot, but 08 as far as I concerned was cuz Chinese was conquered Vietnam 09 many many years, so (.) a lot of Vietnamese cultures were almos’ 10 (.) created by the Chinese. 11 M: oh, so there’s influence? 12 J: so influence (.) yeah. a lot of influence. When I bring up the topic of the defining characteristics of a generic ‘‘Chinese’’ identity (line 1) and o¤er language and culture as potential candidates, John does not take them up and instead again invokes blood as the main determiner (lines 3–4). However, he attends to the scope of the claim by using the pronoun ‘‘we’’ to indicate that this claim does not simply extend to him but also applies to others with Chinese blood. By claiming Chinese identity based on the simple fact of lineage, he rhetorically defends himself from any challenges. Moreover, he even heads o¤ any potential claims against the ‘‘purity’’ of that lineage by stating that being Chinese is tied to having ‘‘some’’ blood. An interesting aspect of lines 7–10 is that John switches from a group identification based on blood to an individual self-identification based on sociohistorical influences. These claims are treated as more rhetorically ‘‘brittle’’ as evidenced by their tentative and qualified production (e.g., pauses and hesitations). However, whether one is Chinese based on blood or culture, both are focusing on the authenticity, rootedness, and ‘‘essence’’ of the claims.

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‘‘I guess they just di¤erent from us’’ The previous extracts show that John constructs a Chinese identity in contrast with Vietnamese. He claims he is Chinese, not Vietnamese (or even American, as he insists on other occasions). At the same time, despite John’s e¤orts to maintain that he is ‘‘Chinese born in Vietnam,’’ I observed that he is labeled and treated as Vietnamese by Vietnamese-speaking and local friends, and many are surprised by and even challenge his claims that he is Chinese. As one of his Vietnamese friends remarked, ‘‘You were born in Vietnam. You grew up there. You speak Vietnamese. How can you say you are not Vietnamese?’’ (from field notes). Despite challenges to his claims based on ancestry and language, John nevertheless continues to insist that he is Chinese. However, this does not mean that he simply ignores potential challenges. To defend his claims, he maintains his focus on blood but recategorizes himself as a particular kind of overseas Chinese. In Extract 5, John becomes hearably excited and animated when talking about his Chinese ‘‘roots,’’ but then he goes on to make a distinction between di¤erent kinds of Chinese identities: (5) 01 J: Chinese ((people)) no problem, becau’ I know it’s like hit my root 02 (.) like (.) >‘‘OH Chinese. OH (.) me too.’’< 03 M: mm (.) okay 04 J: so, (.) I just like welcome them. I don’t know (.) even (.) so 05 maybe we- we (.) can’t do the conversation (.) because uh (.) s::: 06 (.) I’m not really fluent in ( ) fluently in Chinese so (.) I 07 can’t communicate with them (but jus’) ( ). an’ an’ I know that 08 because we- (.) even I- (.) I identify myself as Chinese, but (.) 09 like to Chinese people from (.) China or (.) Hong Kong or (1.8) I 10 guess: they just different (.) from us. so (1.8) I don’t know. Speaking about his close feeling toward Chinese people, John constructs the closeness of his relationship with Chinese by claiming ‘‘no problem’’ (line 1), linking them to his roots, and ‘‘welcoming’’ (line 4) them. This initially establishes the grounds for his assertions that he is Chinese. However, as he continues, the dilemmatic aspects of his claims start to come out. Finally addressing the matter of language ability, he hesitantly admits to a possible di‰culty and even inability to communicate with Chinese due to his lack of language fluency (lines 5–7). He also displays his awareness that his Chinese identity could be challenged (lines 7–8) based on language.

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Although his admission regarding language appears to unravel his previous claims to an authentic Chinese identity, he gets around this by redefining the definition of Chinese. Although John began by aligning himself with Chinese, he now distances himself from mainland and Hong Kong Chinese by constructing a third group that potentially includes Chinese from Vietnam or the Chinese diaspora (lines 9–10). An interesting feature of his description is not that he is di¤erent from the mainland or Hong Kong Chinese; rather, they are di¤erent from the group to which he belongs: ‘‘I guess: they just di¤erent (.) from us.’’ This rhetorical move allows John to continue to anchor his claims that he is Chinese. As John’s talk shows, even though individuals may have multiple identity claims from which to choose (or be assigned), they may also work to maintain a particular identity claim across time. 6. Conclusion In this chapter, I applied a discursive constructionist approach to the investigation of transcultural mental health, well-being, and social belonging. I discussed how John, an immigrant man from Vietnam, talks about his struggles with ethnicity and sexual identity and displays his work to resolve these tensions. One strategy he uses to resolve identity conflict is by compartmentalizing identity – but as he describes, this strategy may lead to identify fragmentation, other-directedness, and even a dishonest performance of self. A personally less problematic and more cohesive strategy he employs is to draw on Chinese blood and ancestry as a symbolic and physical link to stability and belonging. Although John treats social expectations and ideologies surrounding family, marriage, sexuality, and ethnicity as problematic, he unquestioningly accepts his Chinese-ness, and even works to protect this identity when challenged. Much that has been written about blood in recent years has been negative, locating it between ideologies of racial purity and threats of contagion (e.g., HIV/AIDs and fears of disease and death, ethnic cleansing, ethnic-nationalism). However, the findings of this study suggest that blood may also be, at least for some transculturals, essential in resolving identity conflict by allowing the creation and maintenance of positive ethnic identification – as discussed earlier, an important part of mental health and well-being. These findings problematize both hybrid and essentialist views of self and the body by showing that identities and the ideologies surrounding them are self-contradictory and unstable as well as cohesive and stabilizing.

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Beiser and Hyman (1997) in their study of Southeast Asian refugees in Canada, suggest that Chinese refugees (e.g., ethnic Chinese from Vietnam) have mental health advantages over other groups because for generations, they were minorities in other countries whereas the Vietnamese and Laotians, for example, were members of the dominant culture. Also, as I have shown, for John, ethnic identity is given greater importance and recognition than his identity based on sexual orientation. In his search for a cohesive self, it may be that his Chinese ethnic identity a¤ords him an anchor by which to mediate all his other identities. It may be easier for him to focus on his Chineseness rather than gayness, because both he and society will allow his ethnic identity to be validated. Furthermore, communities built on same sex desire di¤er from ethnic communities in that there is no homeland that can validate their group identity (Cant 1997). Ethnic identity can be tied to blood and present or historic country of origin; an identity built upon same-sex desire has no such claimable birthplace. Thus, for immigrants such as John, it may be that to create a sense of an integrated and valid self, it becomes necessary to focus on ethnicity, rather than sexuality. The stance taken here is that these ideologies and discourses are not just ‘‘out there’’ in the social ether, they are made visible through conversation and the processes of sense making with and for others. This is not, of course, to make the untenable claim that mental health, identity, or identity are only discursive and that there is no structure or materiality to our social worlds. Although John’s blood claims, for example, are discursive, they are nonetheless bound in the corporeal – they are most certainly as much of the body as much as they are of language. Social constructionists have been criticized as ‘‘relativist’’ and ‘‘morally vacuous’’ (cf. Speer 2005) for failing to consider the extra-discursive aspects of social life and experience. Longhurst (2001) also points out social constructionism’s focus on ‘‘social messages’’ at the ‘‘exclusion of the material body’’ (p. 23). However, I argue that materiality does not engender meaning in itself. That is, what counts as real and what that reality means is first and foremost a concern for social members themselves, and cannot be separated from the contexts in which people live (Potter 1996; Speer 2005). By treating identity, mental health, and the body as interactional topics and resources rather than predetermined objects, we can gain a fresh perspective on how social members use language to go about creating a stable and coherent sense of self in the face of dislocation.

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7. Recommended readings (1) Baynham, M., and De Fina, A. 2005. Dislocations/relocations: Narratives of displacement. Northampton, MA: St. Jerome Publishing. This edited volume applies narrative and discourse analysis to the topic of global migration and displacement. Through the analysis of stories dealing with disruption and relocation both within and across borders, it shows how diverse groups of migrants, refugees, and ethnic minorities locate themselves in time and space as well as how they are located by others. Discussion is organized in three interconnected sections dealing with 1) orientation to social worlds, 2) displacement and spatialization practices and 3) institutional placement/displacement. This volume takes a decidedly political stance by seeking to give voice to ignored or silenced experiences while linking the microanalytic level to macro transnational flows. It looks at the ways in which language both positions and constrains individuals and groups caught up in the processes of displacement as well as how speakers contest and resist such positionings. (2) Coupland, J. and R. Gwyn. 2003. Discourse, the body, and identity. Houndmills, Basingstoke & New York: Palgrave Macmillan. Bringing together a diverse group of researchers across the social sciences, this volume explores the body as an ideological and semiotic resource. Rather than treating ‘‘the body as discourse,’’ these studies focus on ‘‘discourses of the body.’’ Discourses discussed here include aging, cancer, ab(normality), crime, disability, embodiment, nudity, and flirting. The eleven chapters are organized along three broad themes: the body as an interactional resource; ideological representations of the body; and the body, pathology, and constructions of selfhood. Although discourse is a central theme throughout these studies, multimodal approaches that engage with the body across a range of contexts, including media, interviews, film, narratives, and biographies are particularly highlighted. This volume goes a long way toward unpacking the notion of embodiment while situating it as an interdisciplinary venture worthy of further exploration. (3) Meinhof, U. H. and D. Galsinkski. 2005. The language of belonging. New York: Palgrave Macmillan. This volume examines the role of identity and identification in creating belonging and unbelonging for transgenerational families located at the borders of Poland and Germany. Drawing on ethnography, discourse

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analysis, and narrative, it o¤ers an empirical analysis of the ways in which cultural identity is negotiated through talk as well as how it is constrained by context. Rejecting notions of static ethnicity (e.g., Germanness, Polishness), and digging deep into the socio-political context of place and time, it explores the ways in which who we are becomes entangled with where and when we are. Particularly innovative is the researchers’ use of photographic history to elicit talk of identity, place, and belonging. This volume demonstrates in careful detail that the construction of sameness and di¤erence are powerful tools for both creating and dividing community.

References Al-Issa, I. and M. Tousignant (eds.) 1997 Ethnicity, immigration, and psychopathology. New York: Plenum Press. Allatson, P. 2002 Latino dreams: Transcultural tra‰c and the U.S. national imaginary. New York: Rodopi Press. Anthias, F. and C. Lloyd 2002 Rethinking anti-racism: From theory to practice. New York: Routledge. Atkinson, J. M. and J. Heritage (eds.) 1984 Structures of social action: Studies in conversation analysis. New York: Cambridge University Press. Barker, D. 2003 Identity and psychopathology. In D. Ndegwa and D. Olajide (eds.), Main issues in mental health and race, 65–87. Burlington, VT: Ashgate. Beiser, M. and I. Hyman 1997 Southeast Asian refugees in Canada. In I. Al-Issa and M. Tousignant (eds.), Ethnicity, immigration, and psychopathology, 35–56. New York: Plenum Press. Benwell, B. and E. Stokoe 2006 Discourse and identity. Edinburgh: Edinburgh University Press. Berry, J. W. 2001 A psychology of immigration. Journal of Social Sciences 57. 615–631. Bhabha, H. K. 1994 The location of culture. London: Routledge. Billig, M. 2001 Discursive, rhetorical and ideological messages. In M. Wetherell, S. Taylor and S. J. Yates (eds.), Discourse theory and practice: A reader, 210–221. Thousand Oaks: Sage.

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Billig, M., S. Condor, D. Edwards, M. Gane, D. Middleton and A. Radley 1988 Ideological dilemmas: A social psychology of everyday thinking. Newbury Park, CA: Sage. Block, D. 2007 Second language identities. New York: Continuum. Buttny, R. 1993 Social accountability in communication. Newbury Park: Sage. Buttny, R. 2004 Talking problems: Studies of discursive construction. Albany: SUNY. Byrne, B. 2004 Qualitative interviewing. In C. Seale (ed.), Researching society and culture, 179–192. Thousand Oaks, CA: Sage. Cant, B. (ed.) 1997 Invented identities?: Lesbian and gays talk about migration. London: Cassel. Castles, S. and M. J. Miller 2003 The age of migration: International population movements in the modern world. New York: The Guilford Press. Couper-Kuhlen, E. 2007 Assessing and accounting. In E. Holt and R. Clift (eds.), Reporting talk: Reported speech in interaction, 81–119. New York: Cambridge University Press. Delamont, S. and P. Atkinson 2004 Qualitative research and the postmodern turn. In M. A. Hardy and A. Bryman (eds.), Handbook of data analysis, 667–681. Thousand Oaks, CA: Sage. Docker, J. and G. Fischer 2000 Race, colour, and identity in Australia and New Zealand. Sydney: University of New South Wales Press. Drew, P. 1998 Complaints about transgressions and misconduct. Research on Language and Social Interaction. 31(3/4). 295–325. Duggan, L. 1998 Queering the state. In P. M. Nardi and B. E. Schneider (eds.), Social perspectives in lesbian and gay studies: A reader, 564–572. New York: Routledge. During, S. 2005 Cultural studies: A critical introduction. New York: Routledge. Edwards, D. 1999 Emotion discourse. Culture and Psychology 5(3). 271–291. Fishman, J. (ed.) 1999 Handbook of language and ethnic identity. Oxford: Oxford University Press.

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The Sage encyclopedia of qualitative research methods. Thousand Oaks, CA: Sage. Gutie´rrez, K. D., P. Baquedano-Lopez and C. Tejeda 1999 Rethinking diversity: Hybridity and hybrid language practices in the third space. Mind, Culture, and Activity 6(4). 286–303. Hardy, M. A. and A. Bryman (eds.) 2004 Handbook of data analysis, 667–681. Thousand Oaks, CA: Sage. Holstein, J. and J. Gubrium 2004 The active interview. In D. Silverman (ed.), Qualitative research: Theory, method and practice, 140–161. Thousand Oaks, CA: Sage. Holstein, J. A. and J. F. Gubrium (eds.) 2008 Handbook of constructionist research. New York: Guildford. Holt E. and R. Clift (eds.) 2007 Reporting talk: Reported speech in interaction. New York: Cambridge University Press. Je¤erson, G. 1990 List construction as a task and resource. In G. Psathas (ed.), Interaction competence, 63–92. Washington, DC: University Press of America. Kraidy, M. 2005 Hybridity, or the cultural logic of globalization. Philadelphia: Temple University Press. Lansford, J. E., K. D. Deater-Deckard and M. H. Bornstein 2007 Immigrant families in contemporary society. New York: Guilford Press. Liebkind, K. 1999 Social psychology. In J. Fishman (ed.), Handbook of language and ethnic identity, 140–151. Oxford: Oxford University Press. Lim, L. L. 1996 The gay erotics of my stuttering mother tongue. Amerasia Journal 22(1), 172–177. Longhurst, R. 2001 Geography and the body: Exploring fluid boundaries. New York: Routledge. Mahalingam, R. 2006 Cultural psychology of immigrants. Mahwah, N.J.: Lawrence Erlbaum. Masequesmay, G. 2003 Emergence of queer Vietnamese America. Amerasia Journal 29(1). 117–134.

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Meinhof, U. H. and D. Galasinski 2005 The language of belonging. New York: Palgrave Macmillan. Menard-Warwick, J. 2009 Gendered identities and immigrant language learning. Bu¤alo, NY: Multilingual Matters. Nardi, P. M. and B. E. Schneider (eds.) 1998 Social perspectives in lesbian and gay studies: A reader. New York: Routledge. Ndegwa, D. and D. Olajide (eds.) 2003 Main issues in mental health and race. Burlington, VT: Ashgate. Nederveen Pieterse, J. 2009 Globalization and culture: Global me´lange (2nd ed.). Lanham, MD: Rowman & Littlefield. Pavlenko, A. and A. Blackledge 2004 Negotiation of identities in multilingual contexts. Bu¤alo: Multilingual Matters. Phinney, J. S., G. Horenczyk, K. Liebkind and P. Vedder 2001 Ethnic identity, immigration, and well-being: An interaction perspective. Journal of Social Issues 57(3). 493–510. Pomerantz, A. 1986 Extreme-case formulations: A way of legitimizing claims, Human Studies 9(2/3). 219–229. Portes, A. and R. G. Rumbaut 1996 Immigrant America: A portrait. Berkeley, CA: University of California Press. Potter, J. and A. Hepburn 2008 Discursive constructionism. In J. A. Holstein and J. F. Gubrium (eds.), Handbook of constructionist research, 275–294. New York: Guildford. Potter, J. and M. Wetherell 1987 Discourse and social psychology: Beyond attitudes and behaviour. Thousand Oaks, CA: Sage. Potter, J. 1996 Representing reality: Discourse, rhetoric and social construction. Thousand Oaks, CA: Sage. Psathas, G. (ed.) 1990 Interaction competence. Washington, DC: University Press of America. Sacks, H. and G. Je¤erson 1992 Lectures on conversation. Cambridge, MA: Blackwell. Seale, C. (ed.) 2004 Researching society and culture. Thousand Oaks, CA: Sage. Silverman, D. (ed.) 2004 Qualitative research: Theory, method and practice. Thousand Oaks, CA: Sage.

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Chapter 11 Body act: Contemporary Chinese body performance, critical narrative, and somatic writing Fei Shi The performance genre of body art in the West (1960s–2000s) has been discussed both by western feminist theorists and art critics interested in the issues of sight, space, body, language, and the interplay among them. This chapter stands at the intersections of theoretical discourses about body performance; the contemporary Chinese body performance as the eastern counterpart in the global context; and the ways in which performances are talked about, written, documented, and critiqued. Thus the writer focuses on the multi-directional tra‰c of body and language through the analysis of examples of contemporary Chinese body performances as engaged yet transgressive utterances about gender and sexual normalcy; the public, social, and political languaging of these performances; and the idea of somatic writing as the alternative embodied practice and linguistic strategy to capture the evasive, the illicit, and the erotic in these performances. From Cui Xiuwen’s scandalous video installation Lady’s of the female bathroom in Tianshang Renjian Hotel to Ma Liuming’s iconic androgynous walk on the Great Wall, contemporary Chinese visual artists have challenged the limits and borders of body as art in radical ways. Their work can be situated among various avant-garde visual artists who make, present, or dialogue with their work theatrically at the turn of the 21st century. Their innovative theatrical engagement with visual art that departs from traditional theater performance and art-making call for new theorizations and a re-mapping of the field of contemporary Chinese performances and their extremely important political callings for social transformation. Concerning the issues of gender, sexuality, and the process of art making, I will use their body performances along with Chinese public narratives and artists’ self-narratives as exemplary instances of how body performances negotiate with social theatrics in the continual placing and replacing of bodies and the creative spectatorship that constantly shifts with positionalities and perspectivalism that defy normative languaging of visual

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art in contemporary China. Then I will discuss meta-critically the politics of performance criticism and alternative ways of relating language to body performance through somatic writing. The analyses are grounded in a cluster of relevant discourses and critical theories on the relationship between body and language from performance studies and cultural studies perspectives, including art criticism by such critics as Amelia Jones and Rebecca Schneider, feminist theories on body and embodiment, and interculturalism and transnationality. In contemporary China, feminist art has been liberated from female painting in the post-socialist era, and gender hierarchy and norms have been more profoundly discussed in performative events. Pressed by the post-socialist political conditions, market economy, the influence of western art in the era of late capitalism, and the Confucian-Taoist tradition, Chinese artists have embarked on an experimental journey, attempting to articulate a newness of their complicated lived experiences. The socio-political context of contemporary China and the censorship employed by the Chinese government and society make Chinese contemporary art a particularly apt site for political utterance and action. In order to voice their political opinions and social criticism, these artists have to engage with the dominant political ideology and social discourses in risky yet smart ways, so that their work can survive censorship, yet at the same time, does not lose its critical and political strength. Thus Amelia Jones’ concept of ‘‘intersubjectivity’’ (the relationship among the artists, performers, and spectators as subjects in the process of art making and art appreciation/languaging) and Rebecca Schneider’s idea of ‘‘explicit body’’ are extremely helpful in delineating how these contemporary Chinese visual artists engage spectators and arouse in them a¤ective political feelings to disrupt the surface meanings and conventional ideological readings of their works of art. As a matter of fact, these body performances are artistic and critical responses to their western counterparts, which Jones and Schneider have talked about widely in their scholarly work in Euro-American contexts. Thus departing from Jones’ and Schneider’s ideas of how body art can throw into question our entrenched ways of perceptions, art-making, and the critical languaging of art, I will discuss the specific ways in which Cui Xiuwen’s Lady’s and Mai Liuming’s Fen-Maliuming Walks the Great Wall transgress not only the ideology of dominant political regime, but also dominant ways of seeing as practiced in conventional visual art. More importantly, I will illuminate how Chinese contemporary visual artists e¤ectively participate in the transnational conversation on body art and negotiate with the global political economy in making art.

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1. Critical backgrounds and the new languaging of body art The performance genre of body art has aroused heated theoretical discussion in the disciplines of art history and performance studies. Theoretical works by Amelia Jones and Rebecca Schneider with their feminist and Marxist critiques convincingly mapped out the political and social significances of body performance, this particular art genre in the west (1960s– 2000s), and the ways in which these performances are written, documented, and executed. In Body art: Performing the subject and Performing the body/ Performing the text, Jones explores body art (the art that uses the artists’ bodies as the basic material and means of their artwork) to initiate a critique on ‘‘disinterestedness’’ that is deeply embedded in previous art history criticism and introduces the idea of ‘‘intersubjectivity’’ in addressing the new art form that demands the spectator’s active sights and languaging to constitute the meaning of artwork. The meaning of artwork is no longer ontologically coherent or incoherent in itself. But on the contrary, the meanings of these artworks totally depend on the interactions and mutual constructions of desires and desiring on both sides. Though she prefers to call these performative acts ‘‘body arts’’ instead of body performance, we cannot deny that these artworks already surpass the traditional forms, aesthetic choices, media, and modes of productions of visual art. Their theatrical settings, epistemological reliance on spectatorship, and the ruthless demand of the spectator’s performative reaction unquestionably qualify these acts as performances. Jones’ critical agenda is geared towards the philosophical interrogation of the discipline of art history from within, and she does not attempt to extend her discussions into the discipline of theater and performance studies. Her focus is rather on the critique of the disinterestedness of art history criticism and how intersubjectivity and radical political implications of art will fundamentally shift the disciplinary epistemology of art history and its languaging. She argues that ‘‘By surfacing the e¤ects of the body as an integral component (a material enactment) of the self, the body artist strategically unveils the dynamic through which the artistic body is occluded (to ensure its phallic privilege) in conventional art history and criticism. By exaggeratedly performing the sexual, gender, ethnic, or other particularities of this body/ self, the feminist or otherwise nonnormative body artist even more aggressively explodes the myths of disinterestedness and universality that authorize these conventional modes of evaluation’’ (Jones 1998: 5). Jones’ feminist concern with the body as the useful critical lens and potential site for critiquing and destabilizing the universalism and dis-

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interestedness of critical languaging, which cooperates fundamentally with the masculinist construct of the real, the objective truth, and the Cartesian body–mind split, reveals the partiality and contingency of the body and the intersubjective mode of art creation and reception. This powerful political critique of art also relates her to the feminist political tradition in its consistent concern with the body, as the fluid object of observation, or the subjective site of self-realization and self-construction, or the significant realm of political expression and liberation. Jones argues that disinterestedness and universality ‘‘continue to be structural to evaluations of contemporary art, which – even as they claim ‘post’-modernity – tend to reiterate these Enlightenment-based assumptions of modernist criticism, even as they replace notions of ‘aesthetic’ value with an avant-gardist conception of ‘political’ value or e‰cacy’’ (Jones 1998: 39) What we discover here is her crucial interest in the performative as the deconstructive gesture towards knowledge production. This deployment of the performative not only points to the interactive and self-reflexive aspects of artwork, but also suggests a correspondingly responsive and self-reflexive mode of art criticism/languaging that understands its own textuality, framing, staging, and dynamic relationship with the so-called art object, or the object of knowledge. Thus the idea of object is continuously challenged and what remains is a reflexive/performative gesture of critical intervention. The definitive borders between subject and object, theory and practice, performer and spectator are thus irrevocably challenged. Chinese body performances from the 1990s to the 2000s obviously respond in a peculiar form of transnational borrowing to these performances that Jones lucidly theorizes. They also resonate with their western counterparts in their radical criticisms of social inequality and exploitation through highly interactive and a¤ective spectatorship. These contemporary Chinese body performances, exemplary of Cui and Ma’s work, like those of the West (Carolee Schneemann, Vito Acconci, Marina Abramovic and Ulay, Hannah Wilke, Lyle Ashton Harris, Orlan, Bob Flanagan, etc.) deliberately solicit and expose the desires of the spectator and the critics, and demand an intersubjective attachment: the unfolding of conduits and contours of mutual desires and desiring in the passage of time and the construction of space. The artwork requires a more self-reflexive mode of art critique that admits the performance artist’s ability to solicit and make tangible and inevitable the spectator’s plethora of desires. They also compel a creative reception of art within the spectators’ consciousness that a self-recognition and spectatorial performance of such mutual exchanges of desires are indispensable. Thus these body performances urge the spectators to call

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into question the politics of performance and the medium that facilitates the exchanges of interpretations. Aligning with Marxist theory, Rebecca Schneider in The explicit body in performance interrogates the ‘‘emblematic female body’’ as always represented as the lost and the insatiable object for capitalist consumption and desires. She is more concerned with the explicitness and illicitness of the body performance and how the visceral and the literal collide and disrupt the ‘‘Symbolic Orders’’ and normative logic of representation (Schneider 1997: 3). To render literal for Schneider is to interrogate, expose, and reshu¿e the representational structure and the hidden fetishistic desires that are embedded in the Symbolic Order. She proposes . . . to interrogate the notion that relations between sign and signified are fundamentally arbitrary. Denying the arbitrary, a notion at the very base of modernist and capitalist sensibilities of abstraction and meaning, invites a kind of hysteria, or a psychosis of the overly real – a psychosis historically linked to women. (Schneider 1997: 6)

Thus for her, the explicit body performances collapse the gap between the signifier and the signified. The finite, direct, literal, explicit, satiate, abruptly erotic bodies in these performances intend to disrupt the capitalist mythology of the play of insatiable desires. The erotic body in these performances intrudes into the circles and the recycling of the commodified desires, which always appear lost and forever unfulfilling and tempting. These performances slap directly at the face of this capitalistic logic/mechanism of the production and reproduction of desires by o¤ering the most literal and sexual. Thus she argues, ‘‘Indeed, rendered literal, symbolic constructs can become volatile, and full of critical potential’’ (Schneider 1997: 7). Schneider also terms this disruptive gesture of the body performance as a ‘‘binary explosion’’ which ‘‘is manipulated with political purpose in contemporary feminist performative interrogations of social symbolic constructs made explicit across literal bodies’’ (Schneider 1997: 14). This embodied performativity calls attention to the recognition of the politics of representation on two levels: first, the literal body produces the fantasy of total collapse between the representational and the original; and second, the literal body in the body performance is always a representation/ reenactment/appropriation of social theatrics – the representation of the female body in late capitalist society – and the literal body in body performance is always ‘‘ghosted by the paradoxical historical inscription of that very appellation as always relative to representation’’ (Schneider 1997: 23).

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Whether to challenge the traditional and seemingly objective languaging of visual art or to call for the literal that disrupts the symbolic order of language and visual representation, what connects Schneider and Jones deeply is the theoretical interest in body as performance and embodied performativity. Schneider suggests, . . . performance implies always an audience/performer or ritual participant relationship – a reciprocity, a practice in the constructions of cultural reality relative to its e¤ects. As such the study of performance and the trope of performativity have become integral to a cultural critical analysis which wants to explore the dynamic two-way street, the ‘‘space-between’’ self and others, subjects and objects, masters and slaves, or any system of social signification. (Schneider 1997: 22)

Thus her understanding of performativity, grounded in the inter-communication and interaction between the artists and spectators, or intersubjectivity (using Jones’ term), pertains to the ongoing moment and space of body installations (both the performer’s body and the spectator’s body), a mutual reading of material registers and returning gazes, and mutual reconfigurations of the meanings of the bodies on both sides. 2. Six minutes’ bodywork: Cui Xiuwen Schneider’s theorization on the literal body and the dynamics between high art and low art, body performance and pornography is useful to think through Cui Xuiwen’s Lady’s – a six-minute video recording of sex workers’ activities in the female bathroom of a famous Beijing hotel. Schneider suggests ‘‘works at the boundaries of porn and art raised, anew, old questions about the social functions masked by the implicit ‘high’ of fundable art and ‘low’ of porn, questions which simultaneously interrogated the social functions of sexual economies, such as gender’’ (Schneider 1997: 13). Though Cui’s video installation is not a conscious exploitation of sex workers and the video is a cutting-edge documentary of bathroom activities, the explicit female bodies in this video and the artist’s deliberate re-arrangement of the female body activities through the editing of the video entice a set of questions concerning the relationship between high art and low art, the strategy to negotiate the transnational art market, and socialist/post-socialist ideologies in contemporary China. The question concerning Cui’s work and Schneider’s theory is as follows: Why is Cui funded as high art and why does her art sell in the

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high art market both domestically and internationally? Cui seems to conduct a risky negotiation within the national discourses of the illicitness of sex workers within the realm of dominant ideology and o‰cial languages, but at the same time transgresses the normative languaging of such issues through an artful display and international exhibition. Transnationally, the explicit body causes shocking e¤ects and heated responses in the international art market, because it not only entertains the world art market with Chineseness as the sexualized other, but also connects deeply with a legitimate or familiar bodily transgressiveness in western body performance. Just as Cheng Meiling argues, ‘‘a number of artists who work in contemporary art genres have benefited from China’s rapid move toward globalization and become international art stars . . . Their example illustrates what many Chinese art critics have perceived as the postcolonial condition of the country’s contemporary art’’ (Cheng 2005: 59), or as Jane Chin Davidson argues in the case of Ma Liuming, ‘‘[t]he selection of Fen-Maliuming for exhibition at the 1999 Venice Biennale reveals a significant shift in the evolution of global exhibitions and world’s fairs . . . The exhibitionary order of fairs and world expositions survives today in the most openly politicized and globalized venue for showing contemporary art’’ (Harris 2007: 183). Domestically, Cui exposes social problems in the legitimate representational format – arrangement of the video as the genre of an exposure documentary – to avoid censorship and to gain certain approval from the dominant socialist ideology, but simultaneously subverts it by soliciting performances of active languaging from the spectators through the bodily literalness in the video and by exposing the very constructiveness of the documentary. Working girls, mirror, camera, artist, spectators under different situations; gender, class, ethnicity, city–rural, culture, mobility in total intersections: the interplay of these di¤erent elements though the video installation and the controversy around the female body and her illicit excess – excess not only in the sense of legality, but also in the sense of subverting traditional representational strategy – suggests the complexity of Cui’s artful strategies. This political gesture of displaying and eliciting excess marks Cui’s performative strategy of making art in the post-socialist glocal China. In 2001, Cui Xuwen presented her video/installation Lady’s at the Guangzhou Triennial Art Exhibition. Heated discussions ensued and a lawsuit also followed. An art teacher in Guangzhou Fine Art Academy filed a suit against the artists Cui Xiuwen and Zhanghuan for ‘‘illicit

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eroticism that a¤ects the spectator’s psychological health.’’1 Yet beyond the various reasons for the lawsuit itself, what I am most concerned with is the illicit quality of the video installation that disturbs the routine spectatorship and the very excess of artistic gesture that challenges the appreciative languaging which tends to accommodate, but always fails to do so in contemporary Chinese visual art. In Chinese history, sex, and politics are always coupled together in various interesting conspiracies. It is quite a common phenomenon that women acted as key facilitators for political transactions and social objects who were used to assist men to achieve their political ambitions in historical novels and their legendary social settings: Xishi, Diaochan, Wang Zhaojun, just to name a few. Yet a female artist appears here who comments upon the political economy of the female body and also on the male perception that complicitly installs such an economy. By videotaping the sex workers in the bathroom of the most famous night club Tianshang Renjian hotel in a country that still claims communism as its o‰cial ideology and prostitution as absolutely illegal, a female artist not only obtains access to the immediate power play of sex, but also acquires through art the discursive social power that reverses the political economy of this site that demands an extraordinary new sheaf of sights: the interplay of male gaze, female self-perception, and voyeurism. In this video installation, the contrast between the sex workers’ indifference towards the camera/the videotaping artist and their competitive passion towards the mirror disturbs our understanding of the bodies that are merely sex labor. Who and what are we looking at? The female bodies on-site in the night club, or the bodies through Cui’s lenses, or the bodies in the reflection of the mirror that are constantly in negotiation with their own satisfactory coherence, or the bodies that hide behind the endless movements of dressing, undressing, fitting the bras, hiding the money, making phone calls, and rolling of the pink toilet paper, or the bodies that labor, desire, and power converge upon and mediate through? The mirror almost reflects back the shadow of our own phallic-centered spectatorship that is constantly in a perceptional drift, a resistance to what can be easily boiled down to a social problem. Thus the latent performative structure of this video, with its intricate installations unfolded, is an improvisational drama that the participants or witness of this bodywork (body-at-work), are compelled to tolerate. The aesthetics of peeping oblige 1. Translated by the author, see http://arts.tom.com/Archive/1003/2003/7/85153.html

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the spectators as well as the artist herself to reconsider what constitutes our own subjectivities in Chinese society and the ambiguity and impossibility of insisting upon our own ethics that are facilitated by our visual improvisation of the simulacrums of the female bodies. Who is watching? The artist, the spectators, the sex-workers, or the prudent cleaning lady standing by? The complex sights and spectatorships intertwine in the communal voyeurism. The audiences’ meta-performative realization of this participatory peeping dislocates the gaze and calls into question the direction of the spectatorship itself. The power of voyeurism in Cui’s video installation opens up the possibilities of reconsidering gender as merely fixative and politically one-dimensional. Just as eavesdropping as the alternative way of hearing, peeping accentuates a reflexive way of sight that demands attentive rearrangement of social theatrics which are loaded upon and acted through the gendered bodies. The interplay of the multiple material registers of the illicit body and the private social space in Lady’s compels an urgent reflection upon a series of social and political problems in current China: the subjectivity of sex workers, social stratification and inequality, political conspiracy, the emerging consumer-citizenship, confusion of the private and the public in the social domain, and the gender discourses that underwrite these various issues. Di¤erent from Zheng Tiantian’s anthropological research on the condition of sex workers in China and their subjectivities (Zheng 2008), Cui Xiuwen captures a specific site whose ambivalent quality of hiding and display, openness and secret calls for scrupulous political attention to the nuances of gender play that is capable of reversing a general monotonic social attitude towards sex workers. Lady’s is an interesting allegory of this political attitude, whose functional logic exactly builds upon what has to be strictly expelled, deliberately ignored, simplistically dismissed, and strategically concealed in the dominant political ideology in the time of market economy and consumerism. Through this video installation, the discrepancy between the most rigorous social taboo against prostitution and the existence of such body-business sites in China not only calls into question the dominant political attitude of the government that tries to manipulate the representations of social issues through strategic hiding and displaying, but also necessitates an examination of the intersectionality of gender, class, and consumerism in the Chinese sociopolitical context. When inviting the spectators to generate their own critiques of the social problems and the political regime itself, Cui constantly negotiates with the borders of censorship and various issues that may cause any

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political over-attention from the government, through her artistic manipulation of the camera and thematic editing of the cinematography. The artistic process of making the video becomes a political gesture itself. This artful negotiation with the touchy borders of the political regime and the simultaneous calling into question this very negotiation for the spectators almost become a hallmark of contemporary Chinese artists. This artistic gesture of negotiation is partly revealed through how the artist herself narrates and justifies her project. As Cui later recounted in an interview concerning the legal issues of representing the explicit bodies in Lady’s, I think that there are certain standards to define what is erotic or obscene legally, and of course di¤erent people will hold di¤erent psychological responses. The only di¤erence is the method or the approach, yet everyone is accounting for [his/her] own problem after all. What we need to find is an object and a medium. I try to solve my problems, or problems that are commonly shared by women. (quoted in ‘‘Interview with Fu Xiaorong’’, 2003)

This critical narrative is obviously a defense against the previous legal charge. But more importantly in this critical self-narrative, Cui maintains a quiet detachment from the controversial subject matter that she is dealing with, yet is well aware of the tension between the transgressivity of her work and the political and legal borders that she both works within and secretly exposes. Cui’s technique of navigating the ideological representational to attain a more in-depth visibility of women’s lives becomes more distinct and tangible if we look at another narrative of a spectator with a career in the police force for forty-five years. In the essay ‘‘To discern the right and wrong in Lady’s,’’ this spectator defends Cui’s project as legally legitimate and morally impeccable, because [d]uring the six minutes’ screening, there are only single gender (female) activities and there totally appears no activity between two sexes . . . all the female sex workers who appear at the same time have already finished the transaction, and they come to the lady’s room for necessary cleaning . . . and we cannot confuse the activities inside the lady’s room and those outside.2

2. Translated by the author, see http://arts.tom.com/Archive/1003/2003/7/1010868. html

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Despite the problematic language he uses to defend Cui, he continues to argue that the video installation is consistent and coherent with the communist morality and Maoist ideology of art creation because of its ruthless exposure of the dark side of the society. He even cites Mao’s 1942 Yan’an talk – the foundational text for literary creation under the tenet of communist and proletariat ideology – to further defend the legitimacy of Cui’s work. Through these particular opposing narratives from spectators and Cui’s own artful languaging of her own work, we can discern Cui’s ability to impeccably present the illicit bodies in the installation within social moral normalcy on the surface and the deep down complexity of gender relationships that evade or trespass such an o‰cial reading of her work, particular because the sex workers are claiming their social agency and subjectivity in Lady’s through their constant callings with the people outside the lady’s room in the larger social and political sphere. This tension between working within the party lines and subverting the normative political reading also manifests in di¤erent critical narratives that surround this artwork. Noted art critic Zhu Qi argues in the article ‘‘The attic of language: Eight cases of female avant-garde art’’ that Cui Xiuwen’s video Lady’s is a representative work of social expose´ in the late 1990s. It utilizes the cinematographic style of mock-documentary to publicize the feminine gaze in a night club and reveals the site of self-dressing in a particular gendered space – the bathroom for young women in sexual transaction in a metropolis – during a transitioning period of Chinese society. (Zhu n.d.)

This critical assessment adequately, yet somehow securely, addresses the artwork in service of its orthodox function of exposing the darkness of society, and of course the ‘‘transitioning’’ quality of this phenomenon suggests this social problem as transient and historically specific. The critical language, on the one hand, secures the meaning of this artwork by providing a legitimate explanation of the artwork within the confines of dominant political ideology; yet, on the other hand it eclipses the possibilities of ambiguous and transgressive utterances and achieves the e¤ect that the artwork actually compels. In comparison to this strand of critical language, Cui’s own narrative seems to emphasize the political uncertainty and intersubjective contingency of her work, accentuated by a seductive and tantalizing tone in her linguistic ambiguity:

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The tickets for the ladies are only the quasi-pass, yet the real permit is the ‘‘mirror’’ of the bathroom. When the ladies fix their own looks in front of the mirror, their attentive air is as devout as religion. They spend much more time and appear much more frequently in front of the mirror than ordinary people. They will suddenly pull up their skirts when approaching the mirror, take a look and put them down, or put their hands inside their bras to adjust their breasts, or touch their own faces, or fix the hair, or the make-up, or subconsciously feel between the legs with their hands, or change their underwear, or twist their bodies to the rhythmic music outside, or pinch the extra flesh in the waist, or turn around to see their backs, or mechanically walk back and forth in front of the mirror, or go into the booth. Some ladies use toilet with booth door open so that they appear in front of the mirror, or count their money. All this happens to her, expressionless, without the acknowledgement of the existences of others. But everything feels palpably like an impending war, and the dancing floor outside is most likely the battlefield. (Cui 2007: ¶1)

No ideological commentaries, no extended justifications. Cui’s own direct description of her work seems charged with a seductive somatic energy through most minute details of the ladies’ movements and bodily positions in front of the mirror. The language seems on the surface objective, but actually invites multiple responses from the readers through its openness. Rather than placing meanings on bodies, the artist seems to use most literal and somatic descriptions and even poetic juxtapositions to both invite and problematize any ideological positions. Female stories are told beyond what is merely tameable under the umbrella of conventional ideological interpellations in socialist-feminist discourses. Furthermore, the slippery position of actual body performance as well as the artist’s performance embodied in her own writing suggests the impossibility or limitation for any one discourse to fully language the body. The intimate female experiences in Lady’s releases a question domain for fruitful discussions of a new culture politics of gender. What are the fears, joys, angers, frustrations, satisfactions, desires, politics on-site when these ladies manipulate their customers, flirt with their lovers, compete with their rivals for survival, share their sisterhood, connect with their family, complain about betrayals, and struggle for their migrations to the city? The female bodies, which are overloaded with power, desire, and labor in Lady’s seem to oblige a new spectatorship that reverses the conventional way of seeing and languaging an art object. The sights from di¤erent subjects (the female sex workers, the artist, the spectators; you, me, and them) are reflected back to their own bodies that are constantly in the urgent need of

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gendering, sexualizing, and performing. The site is exactly this clandestine convergence of the sights that reflexively refer back to the skin/performance of the body that commands new critical inquiries and new languages of negotiation. The performance itself together with critical narratives forms multiple dynamic and dialectic relationships that continue to intersubjectively define or reconstitute what body art possibly means in its social and political contexts. This active and necessary tension between performance and reception, or art and language, continues to propel what body art can do to dismantle traditional forms of objective art. As Peter Brooks (1993: 7) rather elegantly puts in his literary criticism, . . . body furnishes the building blocks of symbolization, and eventually of language itself, which then takes us away from the body, but always in a tension that reminds us that mind and language need to recover the body, as an otherness that is somehow primary to their very definition. Psychoanalysis presents a shuttling between real and phantasized bodies which very much defines my own understanding of the body as at once a cultural construct and its other, something outside of language that language struggles to mark and to be embodied in.

This duo-tra‰cking of body and language, or the semiotization of body and somatization of language, challenges us to rethink this pair beyond binary opposition. Body performance thus provides us with the wonderful opportunity to not only consider body as a medium of language, but also to understand the convergence of language and body in a constant evolving process of meaning construction and political negotiation.

3. Writing the gendered body: Ma Liuming The exhaustive e¤orts to create new meanings through bodies as new artistic languages take place not only in the artful shift among the bodies of the artwork, the artists, the spectators, and the critics; but also in the very ambiguous merging or questioning of the placing that separates these bodies. The constant shifting of space, body, and perception and their interplay become important critical apparatus to engage with the strategic political and artistic expressions of these contemporary Chinese visual artists and their remaking of what was imbedded within and situated beyond the modes of production and perception of previous Chinese performance arts. The body as the object, means, media, and subject of

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performance art has been continually pushed for more articulations as well as strategic hidings. The Chinese visual artist Ma Liuming has invested all his artistic creation in a fictive character ‘‘Fen  Maliuming,’’ who always appears in various art media, such as painting, video installation, behavior art, or body sculpture as androgynous and gender-confused. Linguistically, the Chinese character ‘‘fen’’ (芬), which he adds upon his own name, literally means fragrance and usually indicates a feminine name. Obviously the naming strategy suggests a thematic gender-crossing in Ma’s visual arts. This gesture obviously calls our attention to the gender dynamics within the seemingly gender neutral language of Chinese. Yet on the other hand, the character fen (芬) has the same pronunciation as the character (分) which means separation or to separate. Therefore through the linguistic inscription of the morphological ant ithesis of the cultural masculine and feminine and further confusion of the border that divides, Ma questions the cultural construction of gender as fundamentally a binary division and thus accentuates the site of the ambiguous feminine male body, which evokes provocatively circulation of Yin and Yang. Ma’s artistic gesture of searching for the cultural root of this gender border is enacted in a sequence of his behavior art and body installations, especially in his ‘‘Fen-Ma Liuming Walks the Great Wall’’ in the summer of 1998. The Great Wall, the grandiose symbol of Chinese culture, is fundamentally a divisional artifact that decides or di¤erentiates ethnically and geo-politically what is inside (内) and what is outside (外), what is culturally defined as the Han center and what is the ethnic other; what is home and what is wilderness. Ma’s body on the very cultural border reminds us that the foundation of the Han-centered Chinese culture solidification relies on the imbrications of ethnic and gendered others. Gao Minglu convincingly argues, ‘‘The wall is a signifier. Its signified remains open. This openness is what permits it to be reread as an open space where dialogue between historical memory and personal experience can be met’’ (Gao 2004: 785) Thus in this case, the grander cultural border where the body travels coincides with the gender border that is inscribed on the body – the making up of the feminine face and the male body. Yet the border is not a definitive line that divides two equivalent counterparts. Ma’s biological male body does not accord with the standard masculine body that we expect. The artist seems to suggest that a cultural femininity is already inscribed on the body in daily life, on the biological body, and the making up of the face is a re-articulation of that cultural femininity

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that further defies any assumptions of a natural gender body. This accentuation of the gender performativity on the skin of Fen Ma Liuming’s face and its corresponsive linguistic naming strategy o¤ers a critique of gender fixation – the fixation of gender performance and the fixation of gender opposition. The confusion of Fen Ma Liuming’s genders is manifested through the bodily action of continuous walking on the border without any attempt at returning to the previous gender belonging. This is the poetics of body in transformation and constant re-writing: an inevitable decision to walk on the border of ‘‘fen’’ and an endless quest for belonging. The whole videotaping of Ma’s walking on the Great Wall is a series of camera angles capturing the di¤erent bodily postures, resulting from continuous negotiations with the di¤erent textualities of the border. The body wanders on the edge of the border without any hint of returning, just as Halberstam (1998: 164) argues: Queer hybridity is far from the ludic and giddy mixing that Prosser imagines and more of a recognition of the dangers of investing in comforting but tendentious notions of home. Some bodies are never at home, some bodies cannot simply cross from A to B, some bodies recognize and live with the inherent instability of identity.

Thus the walking body on the Great Wall defies the very opposition that marks the comfort zone of homes on either side and questions the possibility of returning without breaking down the wall/border itself. The poetics of Ma’s traveling body against the background of the Great Wall provides us with fruitful questions that help us to think through diverse gender under-representations in Chinese history and gender in-visibilities in current Chinese society. The artful gesture of Ma’s walking on the wall suggests a reconsideration of body that deviates from the o‰cial ideological discourses of what is domestic and what is foreign. Walking on the edge and balancing on the edge, the physical walking of Fen Ma Liuming on the Great Wall as a constant negotiation with the uneven surface requires a bodily flexibility and endurance. The ordeal of simple repetitive movements of walking and the continuous shifts of the body in order to balance on the edges manifest a revealing metaphor of the existential state of the Chinese avant-garde artists at that very historical moment: a negotiation with the monotonous life in the postTiananmen political climate and its underlying dangers and fears. The scratching of the body provides a refreshing experience of being alive in everyday life. The endurance functions as the survival strategy that is

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always part of being Chinese in di¤erent political climates. In the video of the walking, local peasants and travelers pass by silently. The juxtaposition of the travelers and their peaceful mentalities in accepting each other’s radically di¤erent bodies seem to intensify the value of endurance that constitutes an important part of the morality of the grass-roots Chinese. Yet is endurance the best strategy to survive or does this tradition of endurance cause the very political conditions that demand more endurance? The artistic tone is somehow pessimistic. That pessimism shows in another body installation, ‘‘Fen-Maliuming’s Lunch I’’ in 1994, where the cyclically self-consuming body gradually su¤ocates and diminishes. The fictive gender performance ends in the final image of a fleshless fish in a glass tank. The image of Fen Ma’s walking body on the wall resembles that of a traditional Chinese calligraphic scroll – a continuous stroke of writing that seeps through white paper. The body frequently merges with and reappears from the endless continuity of the wall. The blanks in the visual image assist an endless silence that surrounds the body. Yet the body, resembling a fictive cultural ghost that is recast into the moment, questions the fixative continuity of this culture and provokes its momentary rift. Spacing and distancing, the shifting sights of the camera bring us onto a journey of time, a quest for history, a meditation on a pause, and a body as the brush in the moment of writing. The walk on the Great Wall also re-theatricalizes a historical aesthetics that is deeply embedded in Chinese literati tradition – writing. The framing of the video reminds us of the traditional Chinese ink scroll in its interplay of presence of the body, the wall, the vast void and blankness of the sky, and the constant merging between the body and the empty surrounding. It is the diaphanous void, emptiness, nothingness, the intermediate state between existence and non-existence, the present absence, ‘‘xuwu’’ (虚无). This blankness counterbalances the presences of Ma’s ambiguously gendered body, which constantly jumps out and then secretly merges with the trails and mountains. This continuous and tenacious writing signifies the enduring e¤ort in a rigid political re´gime (especially considering the post-1989 cultural and intellectual scene in China), as well as the Taoist retreat into an ultimate appreciation of art and poetic writing instead of running the risk of articulating the enmeshment of epistemes. It is a political alternative as well as a philosophical choice. The framing of absent/presence of the body in merging with nature manifests a political choice of peripatetic resistance instead of an overt articulation of political repression. By using peripatetic resistance, I am not referring literally in the Aristotelian sense, but more in the context of Taoist spirituality and the practice, epitomized in the life practice of Chinese

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literati, including poetry, painting, walking, drinking, drug using, and most importantly writing, in 4th–7th century China. Among them Tao Yuanming, the famous writer of Taohua Yuan Ji (Peach Blossom Source), and Zulin Qixian (the seven virtuous literati in the bamboo forest) retreating into the natural environment, tried of secular politics, practiced calligraphic writing every day. The walking on the Great Wall, the moment of interchangeability between the presence and absence of body, and the presence of body and nature, reminds us of the Derridean di¤e´rance/trace, the primordial space: chora, and a self undetached from the nature. The image of the walking evokes the historical iconicity of those legendary Taoist literati, depicted in Shishuo Xinyu (a collections of the stories of intellectuals in Weijin period 4th to 6th century), but also the performative re-interpretation of these legends. I am not arguing that Ma as the experimental artist identifies linearly and straightforwardly with this Taoist tradition or classical Chinese literati, or that these artists replace the traditional literati in the new political situation. But I would point out that Ma’s redeployment of a behavioral tradition and a cultural practice of writing with the body enables a suggestive resistance to dominant ideology and political regime with its most nuanced but recognizable cultural iconicity. And this performative redeployment interestingly suggests a familiar political and aesthetic choice by Chinese intellectuals in similar eras of political and social coercion and transformation. If Cui Xiuwen compels us to think through the relationship between body and narrative in intersubjective ways, what Ma Liuming does in his body performance really challenges us to think about this new relationship of body and writing. If language or the languaing about body can be considered as the external oral or written apparatus that intends to grapple with body through intricate and ambiguous political negotiations, Ma’s body performance resituates language within body – body as the ultimate site, medium, and content where language and writing are happening. In an interview about his first behavioral art project for the western body artists, Gilbert and George, Ma narrates his own artistic process: I could not sleep for the previous night, and had been thinking about what to show them. Because of my dissatisfaction with my own paintings, I just did not find the expressions. Later I thought about behavioral art. It was something that formed in my unconsciousness from my experiences in college, very vague, but fit for direct emotional expressions. Then I did it when they came. I hid blood-like red paint in the ceiling, poked it open with my finger and it flowed down. Later it was called ‘‘A Dialogue with Gilbert and George.’’ (quoted in ‘‘VIP Living Room Series for Art Warehouse: Ma Liuming’’, 2009)

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The vague language about this spontaneous encounter and the presence of the bodily action suggests the di‰culty for language to capture the body performance. Sarah Ahmed argues that ‘‘The encounter is hence lived and written, but it fails to be an event, or even a text, that is simply in the present. The encounter is already recalled and relived in the metonymic slide between di¤erent encounters’’ (Horner 2000: 87); the attempt for language to recall a past happening already points to its paradoxical limit. The languaging of body is thus an impossible task. Writing or speaking about body engages with di¤erent rhetorical strategies and ideological stances that intend to assimilate and arrest body. Ma’s recalling of his own body performance in his narrative poses some important questions concerning language and body. How do we linguistically capture a past event whose ultimate value resided in its happening and presence? How and where do the text and body meet? How do di¤erent layers of textualites encounter and how do we account for the dynamics of complicated inter-readings and inter-recognitions? Most importantly, if it is not the only key to these answers, the languaging of body necessitates recognition of one’s own body in motion and the present moment of the body that is not solely being written, but that actively writes. This intricate multidirectional embodied languaging of body is what I call ‘‘somatic writing.’’ This particular writing strategy has been discussed by various critics who carry out this critical conversation about language and body in performance studies. Peggy Phelan (1993: 150) argues that . . . in moving from the grammar of the words to the grammar of the body, one moves from the realm of metaphor to the realm of metonymy. For performance art itself however, the referent is always the agonizingly relevant body of the performer. Metaphor secures a vertical hierarchy of value and is reproductive, it works by erasing dissimilarity and negating di¤erence; it turns two to one. Metonymy is additive and associative; it works to secure a horizontal axis of contiguity and displacement.

Aligning with Phelan’s proposal, somatic writing for me compromises its own limit. Somatic writing stands for itself and never tries to represent or to replicate. It approaches the evasive and captures the elusive. It also reveals the moment of slippage, displacement, and disappearance and loss, just like Susan Leigh Foster’s notion of ‘‘interdisciplinary parlance’’ – ‘‘an authorial presence thereby exuding both physicality and motionality’’ (1995: 16).

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The idea of somatic writing also shares an a‰nity with E´criture Fe´minine. For E´criture Fe´minine, writing the body is rather an attempt to debunk the phallocentric constructions of the feminine other than to achieve a real/authentic feminine body, because the feminine body has already been so heavily constructed historically and discursively. Writing the feminine/body is impossible without discursive deconstruction and a poststructuralist engagement with the masculinist discourses about the feminine body. Thus drawing from E´criture Fe´minine, somatic writing reveals an interesting interlocking of body and discourse – the biological materiality of body at particular historical moments and the linguistic shift that is occasioned by the emphasis of this materiality of the biological body and its unique experiences. Thus writing the body has to take notice of the motions and feelings aroused by the materiality of the body and recall the inevitable displacement of the bodily sensations when writing begins. Somatic writing poses the ultimate challenge for a writer to write about body and performance. To write about body performance is to document the documents of the performance; to relive the absence of body through my own lived pleasure of reading, writing, and performing the texts again; to bring, in the presence, a loss and absence; to reinstall a body and an attempt to insert that body into the frame of the performance; to fit into and play with previous scenarios just as Jane Blocker suggests, ‘‘to engage in that labor is to be seduced by gaping holes in the text/ile of written descriptions’’ (2004: 6). Thus somatic writing installs a rhythm of the body into the process of writing as well as into the writing itself, which is constantly being inscribed.

4. Conclusion The body performances of Cui and Ma not only install unique artistic languages through body, but also solicit and compel intersubjective languaging and somatic writing about them. Their performances in some way are examples of somatic writing. The openness of their performances invites somatic writing when the critic takes writing as embodied acts. These contemporary Chinese visual artists create new spectatorships through body just as they constantly shift and recreate their relationship with the political regime, the social environment, and cultural tradition in China. The post-socialist society and market economy provide a more flexible political environment for their artistic expressions. Yet the artists have to continuously shift and develop new strategies to negotiate with the nation-state

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and the political regime. The explicit body becomes the frontier of artistic exploration and political manifestation. They illuminate multifaceted political concerns beyond the dominant ideology of the state, while inspiring embodied discussions on the intersections of gender, body, space, and performance, as well as the political languaging of urgent social problems, economic exploitations, and political inequalities in contemporary China. The human body becomes the distinct domain of their artistic languages, whereas critical narratives continuously rewrite the body and participate in its meaning construction. In their body performances, it is this impossible body that occupies simultaneously the site of tangible physicality, intersubjectivity, representation, visibility, and theatricality. The body itself becomes a radical space of political articulation through video installations, behavioral art, photography, and social performances. The body is the central subject, theme, and means for their artworks that demand new sites and sights of language – the negotiation of the social theatrics in the continual production and reproduction, configuration, and reconfiguration of the human bodies, as well as the creative spectatorship that constantly shifts with positionalities and perspectivalism. Site is thus not only the body as an artistic conduit for social transformations, but also the metaphor of the body politics that emerging desires demand articulation and new languaging; and sight is the condition of the performantivity in visual art and its expectation for unexpected audiences and social e¤ects and a¤ects.

5. Recommended readings (1) Jones, A. 1998. Body art/Performing the subject. Minneapolis: University of Minnesota Press. Jones examines the unique performance genre of body art in the western world and suggests the important idea of intersubjectivity to explore thoroughly the relationship among body, gender, art criticism, art reception, and performance. (2) Foster, S. (ed.). 1995. Corporealities: Dancing knowledge, culture and power. London & New York: Routledge. In this brilliant collection of essays on dance, scholars experiment with alternative writing styles and rhetoric gestures to talk about dance culture and meditate on the tension between language and movement.

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(3) Phelan, P. 1993. Unmarked: The politics of performance. London & New York: Routledge. A classic in the field of Performance Studies, Phelan’s Unmarked focuses on the problem of representation and examines what performance is about in di¤erent artistic genres and mediums. Acknowledgment I dedicate this chapter to Professor Gail Finney and to the editors for their invaluable comments.

References Blocker, J. 2004 Brooks, P. 1993 Cheng, M. L. 2005 Cui, X. W. 2007,

What the body cost: Desire, history, and performance. Indianapolis: University of Minnesota Press. Body work: Objects of desire in modern narrative. Cambridge & London: Harvard University Press. Violent capital: Zhu Yu on file. TDR: The Drama Review: A Journal of Performance Studies 49. 58–77.

December 23. Xi shou jian (Lady’s). Retrieved July 26, 2010 from http://hi.baidu.com/fangzhenning/blog/item/ c0e9e8077ac4ecc97a894760.html Foster, S. L. (ed.) 1995 Choreographing history. Bloomington: Indiana University Press. Gao, M. L. 2004 The Great Wall in contemporary Chinese art. Positions: East Asia Cultures Critique 12. 773–786. Halberstam. J. 1998 Female masculinity. Durham and London: Duke University Press. Harris, J. (ed.) 2007 Dead history, live art?: Spectacle, subjectivity, and subversion in visual culture since the 1960s. Liverpool: Liverpool University Press. Honer, A. and A. Keane (eds.). 2000 Body matters: Feminism, textuality, corporeality. Manchester: Manchester University Press.

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Fu Xiaodong 2003, October html interview. Retrieved July 26, 2010, from http://blog.cl2000.com/article.php?tid-197. Jones, A. 1998 Body art/performing the subject. Minneapolis: University of Minnesota Press. Ma Liuming 2009, November VIP living room series for art warehouse: Retrieved on July 26, 2010, from http://www.artcangku.com/home/news/news/ people/200911/06/73.html Phelan, P. 1993 Unmarked: The politics of performance. London & New York: Routledge. Schneider, R. 1997 The explicit body in performance. London & New York: Routledge. Zheng, T. 2008 Anti-tra‰cking campaign and karaoke bar hostesses in China. Wagadu: A Journal of Transnational Women’s and Gender Studies 5. Retrieved July 26, 2010, from http://appweb. cortland.edu/ojs/ index.php/Wagadu/issue/view/31 Zhu, Q. n.d. The attic of language: Eight cases of female avant-garde art. Retrieved July 26, 2010, from http://artlist.365ccm.com:80/ GrpTopicView_tid_¤8080810bb8625c010bd1974359004e.aspx? login=no

Chapter 12 Bodies and applied linguistics: The challenge of theory Tim McNamara The body as the site of intersection of the physical, the psychological and the cultural is the theme of the French anthropologist Marcel Mauss’s seminal paper of 1935, ‘‘Techniques of the body’’ (Mauss 1973). Mauss brings together a series of observations on cultural di¤erences in ways of swimming, digging, walking, running, marching, squatting, gaze, often as the result of observing di¤erences among groups of soldiers of di¤erent nationalities at the Western Front in World War I. This culturally determined bodily discipline he called habitus, a term which was later taken up by Pierre Bourdieu. He concludes: . . . we are everywhere faced with physio-psycho-sociological assemblages of series of actions. These actions are more or less habitual and more or less ancient in the life of the individual and the history of the society. (Mauss 1973: 85)

Although Mauss stresses that ‘‘the whole, the ensemble, is conditioned by the three elements indissolubly mixed together’’ (p. 74), he nevertheless gives primacy to the social or cultural element: The constant adaptation to a physical, mechanical or chemical aim (e.g. when we drink) is pursued in a series of assembled actions, and assembled for the individual not by himself alone but by all his education, by the whole society to which he belongs, in the place he occupies in it. (Mauss 1973: 76)

Thus he limits the extent of the individual psychological contribution, what we might loosely call ‘‘agency’’: [T]his all presupposes an enormous biological and physiological apparatus. What is the breadth of the linking psychological cog-wheel? I deliberately say cog-wheel. . . . I see psychological facts as connecting cogs and not as causes, except in moments of creation or reform. Cases of invention, of laying down principles, are rare. Cases of adaptation are an individual psychological matter. (Mauss 1973: 85)

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He even stresses that certain kinds of consciousness – for example ‘‘composure, resistance, seriousness, presence of mind, dignity, etc.’’ (p. 86) can be the result of physical training, in the form of tests of stoicism, often part of initiation rituals, and concludes: ‘‘It is thanks to society that there is the certainty of pre-prepared movements, domination of the conscious over emotion and unconsciousness’’ (p. 86). The papers in this volume in many ways resonate with this essay by Mauss, although apart from a few remarks about techniques of care for the body and techniques of the care of the abnormal, he himself does not address the area of health in detail. There is a similar emphasis on the body as a cultural site, though here it is frequently a site of conflict, and the attitude is more often critical than descriptive. While the scope for agency is similarly culturally constrained to a set of predetermined choices, there is an emphasis on the individual’s experience of the cultural construction of illness and impairment. 1. The body in discourse: medical discourse as shibboleth Mauss’s view of the central role of the social in relation to the body resonates with the social theoretical background of many of the papers: phenomenology, poststructuralism, particularly the work of Foucault, and Derrida, and feminist and queer theory. Elizabeth Grosz, in the introduction to her influential book Volatile bodies, writes as follows: . . . the body, or rather bodies, cannot be adequately understood as ahistorical, precultural or natural objects in any simple way; they are not only inscribed, marked, engraved by social pressures external to them but are the products, the direct e¤ects, of the very social constitution of nature itself. It is not simply that the body is represented in a variety of ways according to historical, social and cultural exigencies while it remains basically the same; these factors actively produce the body as a body of a determinate type. (Grosz 1994: x)

In his Birth of the clinic, Foucault (1973) proposed a cultural and historical account of the body, tracing the transformation in medicine since the end of the 18th century in which the clinical gaze constructs the body in an entirely new way. In his later work Discipline and punish (1977), Foucault emphasizes the role of the gaze in the construction of subjectivity more generally. In the design of prisons on the model of the ‘‘Panopticon’’ recommended by the British social reformer Jeremy Bentham (whose

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stu¤ed and preserved body can be seen in University College, London, which he founded), control of prisoners was achieved through surveillance from a single point. The prisoners were unable themselves to see the warder observing them, and thus were uncertain at any moment whether they were the object of the warder’s gaze. Nevertheless, the consciousness that at any time they might be being observed was su‰cient to internalize the sense of being observed even when they were not. Their subjection to the gaze of the warder in their own minds as a permanent feature established their subjectivity as prisoners, and compliance and docility of the subjects so constructed was accomplished. The goal of the system was, in Foucault’s words, ‘‘to induce in the inmate a state of conscious and permanent visibility that assures the automatic functioning of power’’ (Foucault 1977: 197). The construction of the subject in the gaze of the other becomes for Foucault the model for the construction of the subject in discourse more generally. Discourses construct the possibility of recognition of subjects; subjects come into being only insofar as they exist as recognizable positions within discourse. The subject, who does not exist prior to discourse, sees him/herself in the terms that the discourse makes possible. The construction of the medical subject in discourse is a primary concern of this volume. In the words of Ramanathan (2010: 22), 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.

The chapters in this volume give multiple examples of the construction of the subject in medical discourse, but they explore very di¤erent aspects of it. I will here focus on the way in which medical discourses create subject positions which are then available to potential subjects. The papers illustrate the power of the discourse, and both the benefits that subjection may appear to o¤er, as well as its costs. The range of medical conditions involved is wide: autism (Ramanathan, Solomon), visual impairment (Bolt), hearing impairment (Ramanathan), dementia (Davis), chronic fatigue syndrome, fibromyalgia and rheumatoid arthritis (Okada), diabetes (Davies et al.), liver disease (McPherron). A central feature of biomedical discourses of disease is the categories of disease experience that it provides. Naming, the creation of categories of experience, and hence of subjectivity, is a central aspect of the work of discourse. In Derrida’s words,

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Every culture institutes itself through the unilateral imposition of some ‘‘politics’’ of language. Mastery begins, we know, through the power of naming, of imposing and legitimating appellations. (Derrida 1998: 39)

But naming, like language in general, has the inherent ambiguity, the undecidability, of the shibboleth, ‘‘sign of belonging and threat of discrimination’’ (Derrida 2005: 27). On the one hand, it is a means of inclusion, a ‘‘password, a . . . word transmitted like . . . a handclasp, a rallying cipher, a sign of membership’’ (ibid.). On the other hand, the shibboleth is a means of violent exclusion, as in the biblical story (Judges 12: 4–6). The chapters collectively demonstrate this ambiguity. Bolt considers visual impairment, and explores the names that competing discourses provide, those available within biomedical discourse, on the one hand, and within a radical social discourse around visual impairment on the other. He thus emphasizes the power of naming, both its protective and its oppressive function, persuasively arguing that names matter, and in favor of the term ‘‘people who have visual impairments’’ over other terms ranging from ‘‘blind’’ to ‘‘visually disabled.’’ A similar issue arises in the chapter by Davies et al.: one man who is seen as being particularly e‰cacious in the self-management of his diabetes ‘‘never refers to himself or anyone else as ‘a diabetic,’ using instead ‘diabetic’ as an adjective’’ (this volume, p. 183). Okada illustrates the way in which the visibility which is provided by naming in biomedical discourse may be a crucial issue for the subject. She presents a case where the unavailability of a category label in the form of a positive diagnosis of a persistent condition involving pain, depression, and fatigue was an issue: Medical science is unable to come to grips with invisible illnesses, especially those without objective signs or measures on which to base their diagnosis. Looked at from a dualistic biomedical viewpoint, such diseases do not, in an important sense, exist, and the patient’s embodied su¤ering can only be marginalized or treated as a subjective invention. (this volume, p. 148)

The person concerned sought visibility as a potential medical subject, as only through diagnosis could she find treatment. She thus went to considerable lengths to find a label for her condition, which was finally confirmed as chronic fatigue syndrome and fibromyalgia – ‘‘something she wanted badly: ‘It felt good to know that somebody acknowledged my pain’ ’’ (Okada, this volume, p. 151). The condition of the other person whose narrative is presented in the same chapter is rheumatoid arthritis, which, in contrast, ‘‘can be diagnosed through blood tests and various

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imagining technologies, respectively, and [is] therefore medically ‘visible’ ’’ (Okada, this volume, p. 149). The chapter by Davies et al. illustrates the therapeutic potential of conformity to biomedical discourse. In this chapter, the dominant discourse (in this case about diabetes) is taken as a given, and the paper can be read as a study of the patients’ conformity to its recommendations for treatment. The six cases are presented as representing a continuum of e‰cacy in the self-management of the diabetic condition; we can alternatively see them as a continuum of ‘‘bad’’ and ‘‘good’’ subjects as constructed within this discourse, with the best subject of all becoming an expert in the discourse himself. The role of the narratives presented by the diabetic patients is to present models of biomedical subjects to those who are newly diagnosed with the condition and who are about to enter into the subjectivity of ‘‘a person with diabetes.’’ McPherron has a di¤erent analysis of naming practices, tracing the history of metaphors for discourses about transfusion of blood and subsequently transplantation of body parts, noting the shift from commodity or resource metaphors to the metaphor of the ‘‘gift.’’ He contrasts the construction of the decision to be a live organ donor as represented in dominant medical and popular media discourses with an analysis of the circumstances of his own decision to be a liver transplant donor for his seriously ill father. He finds a mixed picture in his analysis of journals and conversations within his own family: on the one hand, he finds that he had given voice to the public discourse of the gift in private exchanges within his family, while on the other the immediacy of his decision to volunteer as a donor, and the pain and complexity of the experience and its aftermath, were unaccounted for in the biomedical and public advocacy discourse. The chapter is an exquisitely painful reminder of the way in which private experience is both constructed in terms of discourse, but is also inadequately represented by it.

2. Vulnerability and abjection In a number of chapters, including those discussed above, the vulnerability of the subject constructed in the dominant biomedical discourse is stressed, and the research represents a form of resistance on behalf of or in association with the subject. The vulnerability of the subject is a central issue in the chapter by Davis, which considers repeated re-tellings of a story to visitors by an elderly woman a¤ected by dementia of the Alzheimer’s

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type (DAT). Is this behavior to be interpreted in terms of a physiological and cognitive discourse about her condition, as simple ideational perseveration, evidence of her impaired cognitive capacities? Instead, by looking at the selfhood in her performances of these stories, and by making the assumption that the communication was intentional and located in the interaction with her listeners, Davis concludes: Looking at the context in which these stories are performed, we see that she o¤ers a fuller performance when she feels that somebody is listening, and expands whenever she is rewarded by laughter from her conversation partner. Rightly or wrongly, she acts on the assumption that she is being regarded as a real person, a competent conversationalist, who still has a story or two worth sharing. (this volume, p. 96)

Davis’s study contests the erasure of the subject when her performance is interpreted in the biomedical terms (‘‘ideational perseveration’’) made available by her diagnosis. The emphasis on the co-construction of the story suggests that Conversation Analysis would be a useful methodological tool to consider the location of the performances of the stories in the specific interactional context of each re-telling, and would likely lend support to the argument Davis is making. The vulnerability revealed in these chapters extends beyond specific discourses and their labeling. Common to discourses characteristic of modernity are binaries of the normal and the abnormal (Foucault 2003). The discursive construction of the body includes abjection, ‘‘what disturbs identity, system, order. What does not respect borders, positions, rules’’ (Kristeva 1982: 4). Writers such as Ramanathan (2010) and Manderson and Stirling (2007) have dealt with the impact of mastectomy in terms of abjection. In this volume, although no writer uses this concept explicitly, the chapters by Solomon and Ramanathan deal with topics that we might reasonably think of as touching on abjection. In the chapter by Solomon, the rejection of an 11-year-old high-functioning autistic child by her schoolyard peers deals not with discursive but with literal visibility. The account is exquisitely painful, particularly as the child concerned is in fact able to achieve a kind of meta-awareness of her condition, parallel to the most ‘‘selfe‰cacious’’ of the participants in the study of management of diabetes in the chapter by Davies et al. cited earlier, to the extent that she can deliberately mimic the uncontrolled movements of her body, which is the initial target of her peers’ rejection, in a vain attempt to solicit the support of a child who has at other times been her friend and ally. The chapter is

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notable for its successful use of Conversation Analysis as supporting a view of autism as located ‘‘within the autistic individual’s social and cultural environment’’ (Solomon, this volume, p. 105). In this respect Solomon’s chapter presents an interesting rebuttal to the claim by Ramanathan (this volume, p. 59) that ‘‘social interactionist perspectives (that emphasize intentions as emergent through language or co-constructed through dialogue) have not adequately accounted for how one with a communication-related condition attempts to interact with the ‘normal’ world’’. Ramanathan’s chapter does not consider evidence of interaction directly, but secondhand, as it were, through the written narrative accounts of parents, which she calls ‘‘parent pathographies.’’ In fact, she comes to the same conclusion as Solomon about the painful situation of the children in her study, one a boy with autism, the other a child with a hearing impairment, and their parents, as they face engagement with the expectations of the ‘‘normal’’ world. She sums up the parental dilemma in the following way: ‘‘While engagements with ‘normal’ expectations will be fraught and tense, not having access to it will mean extreme alienation and marginalization for her child’’ (Ramanathan, this volume, p. 64).

3. The racialized body in medical discourse In his discussion of ‘‘the Jewish foot,’’ Gilman (1991) discusses an example of abjection in racialized medical discourse: The construction of the Jewish body in the 19th and early 20th centuries is linked to the underlying ideology of anti-Semitism, to the view that the Jew is inherently di¤erent. . . . The image of the Jewish body shifts from the rhetoric of religious anti-Judaism to the rhetoric of the pseudo-science of anti-Semitism. By the 19th century, with the establishment of the hegemony of ‘‘science’’ within European (and colonial) culture, there is no space more highly impacted with the sense of di¤erence about the body of the Jew than the public sphere of ‘‘medicine’’. (Gilman 1991: 38)

A racialized medical discourse, this time in relation to the ‘‘threat’’ perceived by the colonial rulers in pre-independence Zimbabwe of a population explosion among the colonized population, is a major theme of the chapter by Makoni and Makoni in their study of family planning texts in the period 1970 to 1980. As perhaps might be expected, such colonial discourses on the regulation of sexuality, which involved giving women

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access to contraception, was opposed by the leaders of the nationalist struggle. But this opposition was as much an expression of patriarchy as it was of a struggle for equality: Zimbabwean nationalists, like all other male-dominated nationalist movements, were strongly patriarchal and therefore felt the need to control female bodies on grounds of cultural practices. They vehemently objected to the use of contraceptives and some of the family planning facilities became targets of military attacks. (this volume, p. 200)

At another level, however, the discourses reinforced each other, in that they shared a view of women’s bodies as being appropriate targets of political control: ‘‘African female voices were excluded and silenced in o‰cial discourses even though issues pertinent to family planning directly a¤ected them’’ (Makoni and Makoni, this volume, p. 201). This is another example of the kind of erasure in discourse we have noted above, and also demonstrates how medical discourses may themselves form part of larger, here competing, political discourses. Another example of a racialized discourse of the body, although not in a medical context, is in the chapter by Prior, in which belief in the significance of ‘‘blood’’ forms a central theme: ‘‘it is Chinese blood and ancestry that this speaker draws on to create a symbolic and physical link to stability and belonging’’ (this volume, p. 222). The chapter returns us to the theme, discussed above in relation to the chapters by Davies et al. and Okada, of the ‘‘advantage’’ of recognition of the subject in terms of certain discursive categories and the risks involved when falling outside their normative structures. Here the danger resides in the multiplicity of discourses within which any subject is potentially constructed: in the case of the speaker in Prior’s study, a Vietnamese, a person of Chinese ethnicity, a homosexual, an immigrant, a refugee. In this, Prior’s chapter, like that of Makoni and Makoni, provides a further example of subjectivity as a site of competition. Prior rightly challenges the ‘‘celebration of the positive and emancipatory potential of hybrid identities’’ (this volume, p. 223). One is reminded of Derrida’s discussion of his own autobiography as a French monolingual, growing up as (in his own words) ‘‘a little black and very Arab Jew’’ (Derrida 1993: 58) in Algeria at the time of the Holocaust: To be a Franco-Maghrebian, one ‘‘like myself ’’, is not . . . a surfeit or richness of identities, attributes, or names. In the first place, it would rather betray a disorder of identity [trouble d’identite´ ]. (Derrida 1998: 14)

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But it is not clear that Prior adequately theorizes or resolves the ‘‘disorder’’ in his analysis, running close to an uncritical acceptance of the ‘‘positive’’ role of discourses of ‘‘blood.’’ The chapter by Shi illustrates the extraordinary complexity manifest in current versions of Chinese subjectivity, far from the reassuring fantasy of Prior’s subject. Shi’s paper takes us back to where we commenced this chapter, as it reflects very directly Mauss’s view of the central role of the social in relation to the body. The chapter explicitly addresses body performance in the performance art of two contemporary Chinese artists, thus illustrating the ‘‘ways in which societal and cultural forces shape body enactments and performances’’ (McPherron and Ramanathan, this volume, p. 9). 4. Conclusion: The challenge of theory The chapters in this volume collectively raise the relationship of work in applied linguistics, an applied field, to theory. Grosz (1994) is clear about the potential for research on the body to be a trigger for major theoretical challenges: Rethinking the body implies major epistemological upheavals not only for the humanities, which have tended towards idealism, but equally for the natural and social sciences, which have at least aspired to materialism. Both broad ‘‘types’’ of knowledge are implicated in and in part are responsible for prevailing understandings of bodies and are thus vulnerable to transformation and upheaval in challenges to those prevailing models. (Grosz 1994: x)

To what extent is this evidenced in the present collection? In fact, discussions of the character of applied linguistics have presented a picture of an ambiguous, but perhaps changing relationship with theory. At one end of the continuum is the position of one of the founders of the field, Pit Corder, who in an early key text was skeptical about the theoretical character of applied linguistics: Applied linguistics . . . is an activity. It is not a theoretical study. It makes use of the findings of theoretical studies. (Corder 1973: 10)

Other writers have also stressed the dependency of applied linguistics on theory, but see applied linguists playing an interpretive role, identifying theoretical relevance in practical contexts, and constantly discovering new sources of theory which are relevant to their concerns:

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Applied linguistics . . . mediates between theory and practice . . . [and] makes abstract ideas and research findings accessible and relevant to the real world. (Kaplan and Widdowson 1992: 76)

Others see scope for applied linguistics to be a place where theory is generated: [Applied linguistics is] an interdisciplinary area of inquiry in which fundamental research in language and communication can arise from and/or be integrated with dialogue outside the academy about a range of issues in which language features prominently. (Rampton 1997: 11)

There is ample theoretical situating of the research reported in the chapters here. The most obvious influence is what we may broadly call contemporary social theory, encompassing here Foucault’s theory of discourse, phenomenology, feminist and queer theory, and Derridean poststructuralism. There are specifically linguistic theories too – particularly the analysis of narrative, both spoken and written, Conversation Analysis, and various approaches to textual analysis. What is the role of theory in these chapters? We may characterize some as using theory to motivate intervention in practice – here we could include most obviously the chapter by Davies et al., with its practical applications in the management of diabetes, Solomon, with its implications for reconceptualizing the communicative capacity of autistic children, and Bolt, who is seeking to motivate or reinforce a policy intervention in the form of naming practices. Others use theory to illuminate or gain a perspective, frequently critical, on the experience of illness for su¤erers, their families and other caregivers: the clearest cases here are the chapters by McPherron, Ramanathan, Davis, Okada, and perhaps Prior, if we see his paper as addressing questions of mental health, which it does only briefly. The work of this latter group of chapters will have implications for policy and ensuing practice, but these are discussed less directly. In the remaining two chapters, by Makoni and Makoni and Shi, theory forms the basis for a critique of a body-related political issue. Applied linguistics research less frequently investigates the way in which an exploration of contexts of practice may contribute to theory, thus engaging with the challenge that Grosz outlines. The theories that we adopt can be problematized by our research, rather than simply adopted or used. This will involve exploring more critically the theories that we use (a case in point being Derrida’s lifelong critique of phenomenology, which was the subject of his first book (Derrida 1973) and was an

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important point of reference in some of his most important writings (for example, the essays in Writing and Di¤erence [Derrida 1978]). While many of the essays here are obviously fluent in theory, the discussion by Bolt towards the end of his chapter strikes me as particularly significant in this regard. He writes: ‘‘It is evident that recent debate within the disability community has been informed by Postmodern theory, but this relationship is by no means parasitic’’ (this volume, p. 7). He then goes on to discuss advances in disability theory which, he argues, have fundamental implications for social theory more generally. Whether or not we are persuaded by his particular argument about this particular case, the engagement which Bolt displays with larger questions of theory is clearly a direction in which we should be heading.

References Bennington, G. and J. Derrida (eds.) 1993 Jacques Derrida (transl. by G. Bennington). Chicago: University of Chicago Press. (Original work published in 1991) Bright, W. (ed.) 1992 International encyclopedia of linguistics, Volume I. New York & Oxford: Oxford University Press. Corder, S. P. 1973 Introducing applied linguistics. Harmondsworth: Penguin. Derrida, J. 1973 Speech and phenomena and other essays on Husserl’s theory of signs (transl. by D. B. Allison). Evanston, IL: Northwestern University Press. Derrida, J. 1978 Writing and di¤erence (transl. by A. Bass). London & New York: Routledge. (Original work published in 1967) Derrida, J. 1993 Circumfession. In G. Bennington and J. Derrida (eds.), Jacques Derrida (transl. by G. Bennington). Chicago: University of Chicago Press. (Original work published in 1991) Derrida, J. 1998 Monolingualism of the other; or, the prosthesis of origin (transl. by P. Mensah). Stanford, CA: Stanford University Press. (Original work published in 1996) Derrida, J. 2005 Sovereignties in question: The poetics of Paul Celan. (Edited by T. Dutoit and O. Pasanen). New York: Fordham University Press.

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Foucault, M. 1973

Foucault, M. 1977

Foucault, M. 2003

Gilman, S. 1991 Grosz, E. 1994

The birth of the clinic: An archeology of medical perception (transl. by A. M. Sheridan-Smith). London: Tavistock. (Original work published in 1963) Discipline and punish: The birth of the prison (transl. by A. M. Sheridan-Smith). Harmondsworth: Penguin. (Original work published in 1975) Abnormal: Lectures at the Colle`ge de France, 1974–1975 (transl. by G. Burchell). London: Verso. (Original work published in 1999) The Jew’s body. London & New York: Routledge.

Volatile bodies: Towards a corporeal feminism. Bloomington, IN: Indiana University Press. Kaplan, R. and H. Widdowson 1992 Applied linguistics. In W. Bright (ed.), International encyclopedia of linguistics, Volume I, 76–80. New York & Oxford: Oxford University Press. Kristeva, J. 1982 Powers of horror: An essay on abjection (transl. by L. S. Roudiez). New York: Columbia University Press. Manderson, L. and L. Stirling 2007 The absent breast: Speaking of the mastectomied body. Feminism and Psychology 17(1). 75–92. Mauss, M. 1973 Techniques of the body (transl. by B. Brewster). Economy and Society, 2(1). 70–88. (Original work published in 1935) Ramanathan, V. 2010 Bodies and language: Health, ailments, disabilities. Bristol: Multilingual Matters. Rampton, B. 1997 Retuning in applied linguistics. International Journal of Applied Linguistics 7(1). 3–25.

Index Abjection 272–273 Ableism 20, 26 Abnormality 16, 24–25, 239 Agency 6, 47–50, 129, 172, 177–181, 185–188, 267–268 Alabama 173 Appropriation 20–21, 198, 249

– Discursive constructionism ix, xii, 2, 9, 22, 146, 193–266, 272, 274 – Discourse analysis viii, 8, 39, 173– 174, 193, 218 – Racialized discourse 273–274 – Critical Discourse Analysis (CDA) 194–195

Belonging 81, 147, 212, 221–226, 232, 237, 239–240 Blood, notions of 222–223, 234–238, 274–275

Emotions 56, 66 Ethnic identity 222, 227, 234, 238, 241–243, 244 Ethnographic interviews 221, 225 Etymology 18, 30 Exercise 175–185

Chronic fatigue syndrome (CFS) 8, 145, 149, 151, 269–270 Chronic illnesses 145, 149, 162, 172, 186 Coherence (in stories) 79, 86, 109, 157, 159, 163, 171, 174, 252 Community 6, 13–36, 214–215, 226, 230–231, 240, 277 Control 2, 7, 25, 48, 60–63, 69, 86, 112, 153, 156–157, 231, 269, 274 Coping strategies 172, 186 Critical Theory 1, 7, 15, 19, 223, 246– 247, 275 Critical Disability Theory 4 Dementia of the Alzheimer’s type (DAT) 75–76, 86, 272 Diabetes 171–188, 269–272, 276 Diet 172, 175, 176, 177, 180, 184 Disability 3–5, 8, 10–11, 13–36, 71, 130, 134, 136, 145, 166, 239, 277 – Social model of disability 8, 15, 25– 28 Discourse – Biomedical discourses 146–147, 158 – Life world discourses 37–38 – Societal discourses xi, 40–41, 45, 50, 269

Fate 175–177 Fibromyalgia (FM) 8, 145, 149, 151, 167, 269–270 Framing 173, 174, 176, 204, 248, 260 – Reframing 166, 169 Habitus 138, 267 Herniated disk 145, 149, 154, 157– 158, 161 Hybridity 223, 242, 250, 259 Identity 223–244, 267, 272, 274 – Identity conflict 222, 225–229, 232, 237 Ideology 196–197, 212, 251–253, 264, 273 – Ableist ideology 25 – Transplant ideology 38–50 Illness narratives 145–147, 163–167 Immigrant 221–227, 234–243, 274 Intentional stance 8, 10, 76, 78, 81, 95–100 Intentionality 70–75, 97–101, 129 Invisibility 9, 51, 145, 149, 155, 161– 162 Invisible illnesses 148–149, 154, 161, 169, 270

280

Index

Japan 22, 36, 38, 151, 158, 160 – Japanese 150, 160–161, 167, 244

Postmodernism 29 Psychological stance 174–179

Language policy 4, 11, 72, 99 Languaging 3, 7, 11, 53, 161, 164, 168, 245–252, 255–256, 262–264 Lexical density 87–88

Retelling 76, 85–86, 89, 96–97, 159 Ricouer, P. 98–102 Rheumatoid arthritis (RA) 9, 269– 270, 145, 149

Mental health 131, 221–224, 229, 237–243, 276 Merleau-Ponty, M. 50, 114, 146–165 Metaphor 39–49

Ocularcentrism 15–16, 19, 30

Sameness (idem/ipse) 76–80 Self-definition 171–172 Self-management 9, 171, 173–174, 270–271 Sexuality 7, 193–194, 197–201, 212, 226–227, 232–233, 237–238 Silencing 50, 161, 163 Sociocultural 146, 171 Storytelling 86, 171–172 Success 171–192

Perception 9, 38, 111–114 – Embodied perception 147–148, 162 Performance narrative 77, 82 Phenomenology 68, 113, 145, 147, 268, 276 Political correctness 20–21, 31 Positionality 149

Theory 275 Therapeutic intervention 174 Terminology – Traditional Terminology 20–21 – Terminology Modification 19–22 Transcultural/Transnational 221–244 Transplant surgery 37–54

Narrative construction 159–160, 244 Normal bodies 2, 5 Normality 3, 24, 55, 114